tag:blogger.com,1999:blog-34381916598524238872024-02-22T10:49:35.874-08:00Dancing in the RainMax and Addie's Extraordinary JourneyStephaniehttp://www.blogger.com/profile/18262244487289072606noreply@blogger.comBlogger123125tag:blogger.com,1999:blog-3438191659852423887.post-20383639141729246322018-01-27T08:15:00.002-08:002018-01-27T08:35:03.231-08:00The Waltz of Grief and Joy<div dir="ltr" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt;">
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This week as we passed the mark of having now lived four
months without our precious Max, I started to think about my own emotional
journey in that time. I began to jot
some thoughts down under the heading of ‘lessons learned 4 months into my
journey with grief’. As I started to
think about it though, I realized that I am far more than 4 months into that
journey. Although grief has become a
frequently spoken word now in my life and while it obviously has assumed a far
more central role, Grief is actually a familiar character in my life. Emotions are very difficult to conceptualize
and adequately portray with mere words.
We would like to teach Addie to communicate emotions through her iPad
app, but it is very hard to teach her to recognize and label such abstract
experiences. Likewise, it would be easy
for me to tell you Max and Addie’s story as a timeline or to explain these past
few months as a list of events and milestones.
However, to do so would reduce a profoundly complex journey that is
inherently filled with intense, conflicting, and ultimately complementary
emotions. I find the best way to bring
that story to life is really to personify the emotions themselves. In a very Inside Out-esque mindset, I visualize the key emotions as characters interacting
on some sort of stage, producing an evolving story. At this point four months in, I wanted to share a little about the two most
prominent characters in my story- Grief
and Joy. It sounds like they would be
at odds, constantly competing to be the lead character. What I have found instead, though, is that
Grief and Joy actually complement and enrich one another and are dancing
gracefully together through each day of these chapters of my life.<o:p></o:p></div>
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When I was reflecting on Grief and what I believe to be true
about his role in my life, I was trying to determine when Grief first joined
the ensemble chorus of my life. Grief
obviously began before the morning we lost Max since we found out 12 days before
that morning that Max’s labs were so bad and his medical problems so
multi-faceted and dire that nothing more could be done to help him. We began grieving losing Max even while he
was still with us, which was a heartbreaking and complicated experience. I could rewind a bit further and identify
that Grief had really been residing with us since March when Max spent 5 weeks
in the hospital following a septic infection and never really rebounded. We began working with palliative care and
hospice when he did come home because his heath took such a sharp decline. Processing what the loss of his tenuous
stability meant for our present and our future filled us with Grief. But, truly I believe that Grief made its
debut in my story 6 years ago. 6 years
ago when a neurologist held up pictures of Max’s brain MRI scans and began
every sentence with ‘your son will never’.
We received (and that is the wrong word because truly it was thrust at
us) Max’s diagnosis 6 years ago and while the absolute details of what it
really meant were fuzzy, the gist was that Max’s life was going to be short and
full of challenges. I was so
unprepared, so consumed in the hopes and dreams I had clung to for my children
(even in the face of a full year at that point of huge medical obstacles), that
I hardly recognized that it was Grief entering my life. Living with loss from death, people readily
label Grief. But, in those moments
then, processing instead a loss of dreams and potential, I did not even
identify the feeling initially. Was it
Despair or Depression? At times confused
for maybe just Anger and Jealousy? Was
it an extension of Fear or nothing more than Sadness, a known feeling but in a
new potency? It took me a while before
I realized it was Grief. I was grieving
the life I had planned for Max. I was
grieving the health and happiness I had wanted for him and felt he
deserved. I was grieving the future,
that now looked bleak instead of shiny and hopeful.<o:p></o:p></div>
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I’m sharing my initial experiences with Grief because while
this current pain following losing Max is new and acute and decidedly different
and more profound and permanent, a lot of the lessons I learned 6 years ago
walking with Grief remain true now.
More than a full year after Max’s diagnosis, I finally wrote a blog post
really sharing how hard it had been for me to process his diagnosis and the
sadness I was feeling daily, even while he continued to be so smiley and bring
us so much joy. The conclusion I came
to in my blog post was that “heartache and hope are not mutually exclusive and
that joy and sadness can co-exist in the same second.” My very first year of knowing Grief had
taught me what I still believe is the most important lesson for me right now- that Grief and Joy can dance together through
our lives and that their melody can actually be profoundly beautiful. During the nearly 6 years between Max’s
diagnosis and departure, I truly learned that Grief does not negate Gratitute,
Happiness or Joy. We loved and enjoyed
and treasured Max richly. Anyone who
knew Max knows that his life was a Symphony of Joy! To love Max was to be filled with profound,
atypical Appreciation and Delight. And
yet, when he would be admitted to the hospital and Fear would return, so would
Grief. When milestones were missed and
life stages served as reminders of what could have been, Grief was
present. I learned not to feel ashamed
of, or angry with, Grief’s recurrent presence.
I learned that I could Grieve for what Max had to endured and what he
missed out on, and at the same time Rejoice in the blessings in and through his
life. Mothering Max was the greatest
Joy, but mothering Max meant accepting Grief as well. Acknowledging that the two emotions could
co-exist was a crucial lesson then- and an equally crucial one now. <o:p></o:p></div>
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Looking now at the last 4 months, since that dreadful
morning when we kissed Max goodbye, I see that Grief and Joy have been hand in
hand waltzing through each moment of these days. There is no denying that in the initial
periods after our loss, it felt like a one-man Grief show that seemed to block
all else out. Yet even in the worst
moments, Joy broke through… in Addie’s oblivious enjoyment of having all her
grandparents around all the time, when Hannah flew out from Australia to spend
6 days with me, when friends and nurses I had not seen in years showed up at
Max’s service to hug us- during Grief’s
solo acts, Joy bravely danced across the stage. And instinctively it would feel almost
wrong. “This is not your time Joy! We
just lost Max, this moment belongs only to Grief,” shouted Guilt from the
sidelines. But we determined to dismiss
Guilt and embrace Joy’s much needed appearances. Joy never removed Grief, but she softened
him. The light of Joy made even the
dance of Grief its own form of beauty.
We tend to view Grief as ugly or dark of undesirable but when Joy danced
through, we remembered that Grief is the close brother of Love. Grief sang because Love had exuded so fully
through Max. Joy reminded us of the
resemblance of Grief to Love. Joy
enabled us to endure Grief’s most overwhelming melodies. We could be present with Grief because the
glimpses of Joy during that time offered respite, promised the intensity would
be temporary and helped us view Grief through the lens of Love. <o:p></o:p></div>
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As the initial days after losing Max turned into weeks and
then months, we began to see Joy and Grief co-existing in a constant duet. Both always present and intertwined, neither
stealing the show from the other or removing their own individual significance. Someone asks ‘how old are your kids?’ and
Grief answers “I have 7 year old twins but recently lost my son” and Joy chimes
in “but Addie is amazing and Max is running in Heaven”. We go on our first outings just the three of
us and Joy says “it feels wonderful to see how happy Addie is right now” while
Grief whispers back “I sure wish Max was here”.
Every happy experience carries the reminder that Max was not here for
it, and every sad day is lightened by the memories of his smile and our confidence
of his bliss in Heaven. During
celebrations, during challenges- Grief and Joy are both there, front and
center, loud and clear. Just as Guilt
tried to tell Joy she was not welcome during Grief’s dominating hours, Guilt
sometimes tries to shoo away Grief now.
Guilt says ‘You have worn out your welcome, this is Joy’s moment. It’s their birthday! It’s Christmas! Today
belongs only to Joy”. But, we once
again dismiss Guilt. For just as there
was room for Joy in our greatest moments of Grief, there is room for Grief in
Joy’s hours. Because truly for me,
Grief and Joy dance most beautifully together.
Similar to how Joy reminded us that Grief is Love, Grief reminds us that
the greatest Joy lies in heaven and not here.
Grief allows us to remember our past and future blessings while Joy
sustains us in the present. It is when
Joy can dance with Grief that it is so much more than fleeting happiness- Joy becomes a resilient celebration of all
aspects of life on earth and eternal. <o:p></o:p></div>
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Joy and Grief are also not dancing alone. The other partners gracefully twirl around
them. Pain and Peace link arms and
together show that we can mourn that we miss Max but rest assured he is
completely healed now. Sorrow and Solace
acknowledge that this is a pain no parent should face but remind us that we do
not face it alone, but rather surrounded by love and support. Hurt and Hope accept that the very real
human ache of loss is valid but that the promise that we will see Max again is
what matters most. This chorus of
opposites, the dance of dichotomies, is the melody of my life right now. And to have a moment of complete honesty
here- this is not the story I would have chosen for my life. Left to my design, Joy, Happiness, Hope,
Peace and Laughter would be the only players, doing one Conga Line after
another! If I was writing my own story,
it would be cheesy, sloppy acts of giddiness.
But, I am not the author of the story of my life and I recognize that
God is telling a more beautiful story.
We all know instinctively that the greatest stories always have
heartache mixed in with happiness. Untested happiness lacks the grace and
strength of weathered Joy. The full cast
of my life is what gives it true beauty and what will enable it to continue
tell the richest story.<o:p></o:p></div>
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These are my thoughts 4 months after our loss. I know the dances will adjust and the songs
will shift. I hope Joy gets more solo
moments and I expect that she will.
Grief will probably spend longer periods singing in the background
chorus and I know that will be a welcomed change too. I also know Grief is not going away for good
and that it will parade through front and center at times when I don’t expect
it. And I am completely okay with
that. I am not trying to ‘work through’
or ‘get over’ Grief. I am living with
Grief. As one of the many real amazing
characters or expressions of emotion in my life. Grief resembles Love to me and Grief dances
with Joy and brings greater meaning and beauty to her dance. My life story is unfolding exactly as God
intended, including my daily waltzes with Grief and Joy.</div>
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Stephaniehttp://www.blogger.com/profile/18262244487289072606noreply@blogger.com0tag:blogger.com,1999:blog-3438191659852423887.post-18003411867405011702017-10-08T06:25:00.004-07:002017-10-08T06:46:30.558-07:00Lessons Learned from 7 years of loving Max<div class="MsoNormal">
<span style="font-family: "comic sans ms"; font-size: 18.0pt; line-height: 115%;">There is so much I want to share about Max’s life and legacy
and I intend on continuing to share about him for the rest of my life. His nearly 7 years were full of so many
remarkable stories, from the medical challenges and scares he overcame to the adventures
and experiences we shared as a family.
But, as I have only a few minutes with all of you today, what I want to
share right now is three lessons Max taught me that have changed who I am and
that exemplify the lasting impact his precious life has had.<o:p></o:p></span></div>
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<span style="font-family: "comic sans ms"; font-size: 18.0pt; line-height: 115%;">The first thing that Max taught me was that Extraordinary things
are waiting when we let go of our ordinary dreams. People that know me well know I am a
planner. I love to plan things and then
I love things to go according to my plan.
Going into motherhood I read every book, contemplated every decision and
was captivated by my own beautiful picture of what life would be like with my
boy girl twins. When Max’s water broke 9
weeks early and a series of discovered medical conditions resulted in 8 months
spent in the NICU, I started to realize my plans were inadequate. I continued to persevere thinking I could
just sketch in a few new additions to my existing picture. I would draw in a little dialysis machine or
two, pencil in some hearing aids and a wheelchair, erase a kidney here and
there and redraw them. I thought I could
squeeze it all in and still have my picture of a beautifully ordinary planned
life. It took me a couple years and a
whole lot of holidays spent in the hospital and new diagnoses to finally
realize that I needed to stop editing the picture I had and instead start with
a blank canvas and paint from scratch this life we were living. When I finaly accepted that, I saw that in
place of my ordinary plans, God had given us an extraordinary family. Max’s pure spirit and infectious smile and
love were more beautiful blessings than I had ever planned for. Max’s life was an extraordinary gift that
exceeded my plans and dreams. At this
moment, so soon after we have lost our precious gift, I’m staring into the
future and once again the plans and ideas I had for it have changed. But, Max taught me to embrace a blank canvas
and trust God to paint something beautiful on it and I know that his legacy
will ensure this next chapter continues to be extraordinary.<o:p></o:p></span></div>
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<span style="font-family: "comic sans ms"; font-size: 18.0pt; line-height: 115%;">The second lesson that Max taught me is that true Strength is
the ability to bless others, regardless of our circumstances. The most remarkable memories I will carry of
Max are when he would be in the hospital and he would smile and laugh at every
person who came up to his bedside. He
would grin and endear the nurses, never holding it against them that they had
to stick him or get blood pressures checked.
Max did not just endure his trials, he smiled and blessed others
throughout each one. None of us who had
the privedge of caring for Max will look back and remember what he needed from
us- we’ll only remember what he gave- joy on dark days, smiles when tears would
have been understandable and selfless love that never expected to be returned
but of course always was. Before I had
Max and Addie, I had never truly had to be strong. I had a wonderful childhood, fell in love and
married my first love and had been blessed with good health and great family
and friends. Trials had been few, and
probably largely self inflicted, and my resilience had gone untested. From day one, Max taught me how to be
strong. During the most difficult few
years of my own life, he led by example.
When I would veer into self pity territory, he would flash me a smile
that reminded me that if he could be okay with this, I had to be as well. When I felt overwhelmed and questioned how I
could handle the responsibilities we had, his calm faith in me reminded me I
would do anything for him and his sister.
And when I would head off to work after hard days or nights and wonder
how I would be able to smile and put on a brave face, his constant smile and
love to all around him served as my example.
Max taught me not just to endure difficult days, he taught me to continue
to smile and love others during them.
As I face now a sadness that even these last 7 years could not have
prepared me for, I draw upon the strength my son taught me to face the world
with a smile and to continue to try and share Max’s love and joy with my
family, friends and students. <o:p></o:p></span></div>
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<span style="font-family: "comic sans ms"; font-size: 18.0pt; line-height: 115%;">Lastly, I wanted to share that the final lesson that Max
taught me is that the only ability we need is the ability to love. Prior to having special needs kids, I tended
to feel that certain abilities were crucial to my happiness. Being able to walk and talk were a given,
enjoying food was an essential pleasure in life, being able to read and write
and maintain friendships were necessary to my every day life. When Max and Addie were 6 months old and the
doctors told us they likely had profound hearing loss, I was devastated. I cried many tears because I could not fathom
life without music and conversation and questioned if they would be able to
enjoy life as fully without these things.
When the neurologist first told us about the extent of Max’s cerebral
palsy, I once more was shaken and heartbroken because I worried Max’s
disabilities would mean he would not be able to have a happy enough life. But, I need not have worried because Max
exuded a joy every single day that surpassed my own. He took delight in every simple thing- he
enjoyed the mobile that hung over his bed every day of his life. He found watching Addie scatter every toy in
our home across the living room most entertaining. He watched her favorite shows time after time
and smiled and chuckled at the same parts each time. And he loved his family like crazy. Any time you made eye contact with him, his
face would beam. He loved being held, he
loved being talked to and made everyone around him happier. Max had the ability to love. He loved his family, he loved life and he
loved things we so easily take for granted.
And in the end, that ability to love was the only one ability that
mattered for him to have the fullest of lives.
Teaching me that our abilities matter far more than disabilities is one
of the most important gifts Max could have left me with. As most of you know, Max’s twin sister Addie
has non-verbal autism and also has a compicated medical history. I sometimes think if I had not been Max’s
mom also and had only been Addie’s, I would have struggled so much more with
her challenges. I could have been very
upset by her lack of verbal language and grieved her atypical journey. But Max taught me to see beyond the cannots
and embrace every can. I look at Addie
and I see all that she can do and her amazing abilities. I rejoice in her running around because Max
reminded me that is something to never take for granted. Her ability to communicate with an ipad is such
a blessing and her joyful high energy unique zest for life is contagious. I am able to treasure Addie exactly as she is
and am able to be a strong mom who will fight for her and see always the best
in her because God gave her exactly the brother she needed. In his 7 years on Earth, Max molded me into
the mom his sister will need for a lifetime.
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<span style="font-family: "comic sans ms"; font-size: 18.0pt; line-height: 115%;">I know this only touches the surface of what Max has done for
me. But I cling to these dearly and know
that I carry Max with me every day. I
hope Max that you will be proud when you look down and see me abandoning my
ordinary dreams trusting God for an extraordinary path. That you will smile with me when I choose to
give joy to others, even when this new phase of life is hard. And that even as you do now have the ability
to run and sing in heaven, that you’ll always remember the most beautiful
ability you have is your ability to love and that will forever live on in our
hearts until we see you again. <o:p></o:p></span></div>
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Stephaniehttp://www.blogger.com/profile/18262244487289072606noreply@blogger.com2tag:blogger.com,1999:blog-3438191659852423887.post-18355697534514246622015-04-02T05:25:00.001-07:002015-04-02T05:25:40.543-07:00Comparison: The Thief of Joy<div>
A couple of weeks ago, it was the end of Spring Break week and Addie had gotten in the habit of staying up late and sleeping in so I was trying to convince her to go to bed earlier by letting her go to sleep in my bed. She was alternating between sitting up and bouncing and laughing and then lying back down and stroking my face. I was struggling to be firm in my message that she must go to sleep when she was being so adorable. Finally around 10pm, she was dozing off so I got my phone out and was reading a blog to wind down myself and it was a mommy blog and it was full of cute and funny tales about her precocious three year old. I read one about her rocking her daughter to sleep and her daughter telling her she was her best friend but if she really loved her, she wouldn't tell her no so much. No sooner had I chucked than I felt sadness kicking in. I looked over at Addie lying next to me and suddenly felt this great loss that she did not talk to me and tell me things like that. I started thinking about all the cute things 4-year-olds normally tell their parents and becoming aware of what I was missing. In a matter of minutes, my complete happiness over my sweet little girl whose arm was still wrapped around my back had turned to sadness and grief over what I suddenly felt 'should have been'. Nothing had changed but my perspective. The simple act of stopping to compare my life instead of just live it had cost me my happiness. I gave myself a good talking to and eventually shook it off and was fine but it made me think about how often we do that. We lose our contentment with what we have when we start focusing on what others have. </div>
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It reminded me of a quote I love that I actually have a printed off version of behind my desk at work: "Comparison is the thief of joy". I have it placed somewhere that I look every day because it's a reminder I definitely need. It's actually surrounded by a ridiculous number of quotes because a few months ago I decided that I needed to be surrounded by wise words. </div>
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In October we got Addie's autism diagnosis and for a couple of weeks, it was all feeling very overwhelming. New developmental diagnoses have always been much harder for me than medical emergencies and I can make that claim with a wealth of experience in both over the last four years! In a medical emergency, it is all about right here, right now and there are doctors and nurses making sure you are okay and numbers to follow and people bringing you cupcakes. It's chaotic and scary but I know what to do with myself and how to stay busy and purposeful and calm. When I'm facing a new diagnosis and a new change to what I thought my future was going to look like, I get more restless and panicky and sad. There are no doctors doing anything to fix it, there are no quickly changing numbers to track progress with. There is just normal life and people handing you daunting packets with names of therapists who may or may not take your insurance. So, when we got the autism diagnosis, even though it was completed expected, it still started to make me feel all worried, sad and woe is me. And there was no time for that so I decided some inspirational quotes would help me. I went straight to the source of all wisdom- Pinterest- and began pinning all these quotes about strength, trials, the future and hope. It became the perfect project for me when I then printed them out and mounted them all on cardstock and laminated them. If you know me at all, you know that nothing relieves my anxiety levels like melting plastic onto paper. As I pulled each freshly laminated warm quote out, I was starting to find my calm again. I taped them up all around my desk and to this day I am surprised that none of my students have asked why it looks like a self help book threw up on my wall. But, those quotes really did help me! I would show up at work every day and read all my little pep talks and get my groove back. I was given this life because I am strong enough to live it! The best thing about the future is that it comes one day at a time!<br />
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And of course: 'Comparison is the thief of joy'. Clearly I should have enlarged that one and made an extra laminated copy for every room in my house. Because it is a struggle. I need that reminder every time I go to the playground (perhaps I need a little business card sized laminated copy for my wallet) and a little kid asks Addie to play with them and she keeps walking with her hands full of mulch because clearly it is more fun to throw mulch down slides than play princesses with the other kids. I need that reminder every time I log on to Facebook and see adorable pictures of little boys playing t-ball and I wonder what Max would look like standing up with a little bat in his hand. I need that reminder when I'm out to eat and I marvel at a toddler eating chicken nuggets because oh my goodness sometimes I forget that other children eat with their mouths and not with a tube. Come to think of it, I should probably just go straight to a tattoo parlor and get 'Comparison is the thief of joy' tattooed all over my arms because I need to be reminded of it constantly.</div>
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I am still a work in progress on this but I do think my being aware of it has been an important step because at least when I do start getting sad in those moments, I have been able to catch myself and re-focus on what IS and stop my mind from stalling on what COULD BE. To clarify, none of this is to say there is not a place for real genuine sadness. I think God completely understands when I feel sad that my children experience frustration and pain because of their disabilities. I believe He wants me to take those very real and fair hurts to him because He too aches for Max and Addie when they suffer. And although I know there is little merit to worrying or anxiety, I also believe those concerns for the future can spur us into action and therefore have a place. It is helpful that it is the desire of my heart to help Addie find her voice. My dream to see her talking and telling me how she feels has helped motivate us to make the sacrifices we are now making to get her into this school that will best help her get there. That I don't want my kids to be sick or uncomfortable and that I long for them to develop new skills in their future- those make me a good mom. And I believe God honors that. What is not good or helpful is that I can be in a perfectly happy moment in my home where I am genuinely enjoying my kids and they are both smiling and happy and I can let the thoughts of 'but it could be better' or 'this is not everything I wanted' slip in. In those moments, I am just letting my comparisons- to other families, to my previous dreams- rob me of the genuine deep joy that day to day life with my adorable family brings. That's when I need the reminder. To stop focusing on anything other than right here right now and the blessings God has given me. </div>
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The reason I am sharing all this is because I don't think this is just MY struggle. I think it's something we all struggle with and I think it is more difficult than ever when social media makes those comparisons much more frequent and hard to avoid. In the end, my getting sad because Addie cannot tell me she loves me (despite showing me all the time) is the same as if I were being very happy with my home until I go visit a friend whose home is bigger. It is the same as feeling happy with my marriage until a friend tell me a story about her husband and his grand romantic gestures and I kinda feel slighted. We do it all the time- we look at one snapshot of someone else's life and it looks better than our reality. It's illogical because we don't always want to actually put the effort in it would take to have their life. I can be completely jealous of someone who is really fit and still have absolutely no desire to exercise ever. It's also irrational because we do not always even know the whole story or want the whole story. I admire their vacations and think I want that! But I may not want the work hours that would pay for that vacation. When we start comparing and wanting, we are trying to trade in a real, true, full life for a series of still frames that would themselves only disappoint.</div>
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And when we compare and feel slighted, we lose sight of OUR blessings and we forget to thank God for what we do have. Because, it may be true that someone has it better, but it is most definitely true that someone else has it worse. And neither of those really matter. What matters is what we have been blessed with. My children have a long list of complications but they are ALIVE and God did that (using some pretty amazing doctors). There were days when I prayed for nothing more. When I sat by an isolette and dreamed of them being in my home. When the very idea of Addie laying next to me in bed was the most precious thing I could imagine. They have overcome enormous odds to be home and healthy today and beyond that blessing, God has given us generally very HAPPY children who smile most of the time and find great joy in their lives. Sometimes it's in unusual things- like throwing mulch or the fact that to this day Max acts like the mobile he has had since he was 2 months old is the Most Hilarious Thing Ever. But you know what, it really does not matter whether it is 'normal' things that make them happy- it matters that they are truly abundantly happy. And that is just talking about my children. Some days I think about everything they go through and am working up some mighty self pity that I forget how much I have to be thankful for like seriously the best parents and in laws in the world who have the means and the HEART to help us out all the time and who love spending time with us, or a devoted husband who hasn't been home to Australia in six years because he wouldn't leave our kids for even a couple of weeks and who has given up his career to care for our kids, or a workplace that let me take time off when I needed it and supports me and co workers that really should abandon education and take up stand up comedy because seriously they are hilarious. There are struggles in my life, for sure, but there are SO MANY blessings. There is so much joy. And I'm determined to hold on to every part of it and let nothing steal it from me. Especially not comparison. </div>
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I am going to have to settle for my laminated cards and my memory because I feel like I might look like a sketchy 80 year old if I have quotes tattooed on my arms. I am probably going to slip and let those thoughts in sometimes and have those moments where I feel sad for the words I do not yet hear or the freedoms our situation does not afford us. I am, after all, human. But, I will try not to let it consume me. I will try and focus on the sweet little arm on my back in my bed and how many miracles have already happened in her life and how many more I know we are on the cusp of. I will savor the nights when Max is home and soak up his smiles because let's face it, I was never really cut out to be a baseball mom anyway. And on top of that, I will every day thank God for my wonderful parents, my witty co workers and my warm bed. There are some with more and many with less but as for me, my blessings are many and my joy, complete. </div>
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Stephaniehttp://www.blogger.com/profile/18262244487289072606noreply@blogger.com1tag:blogger.com,1999:blog-3438191659852423887.post-64801216074365145892015-03-10T17:35:00.002-07:002015-03-10T17:35:22.802-07:00The Significance of the Signature Smile<br />
I will always remember the first time Max smiled. He was four months old and I was taking pictures of him and Addie and he started giving us these big grins, complete with dimples and all the adorableness we can imagine. He actually started really smiling a few days before Addie and he definitely made his reputation in the NICU for being so incredibly smiley. He smiled at his nurses almost constantly and the smiles brightened the room up. Those were all days 'before' and his smiles were precious and endearing but they did not yet have the significance and the necessity that they do now. <br />
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I say 'before' because being Max's parents did seem to change almost in an instant when we got the diagnosis about his neurological damage when he was 13 months old. Our expectations and dreams changed dramatically over the months that followed. Difficult conversations with doctors were frequent and we were constantly hearing about the things Max would not do. We had many dreaded conversations where doctors encouraged us to really think about the concept of quality of life in making our decisions for transplant and long term care. Some of these conversations were delivered with tact and compassion, others less so. But the thing that made these talks and the new realities we were facing bearable was his smile. We did not have to agonize over wondering if Max did have a quality of life because he was pretty much constantly beaming at us. Al and I quickly realized that although we may sometimes doubt that WE could be happy if we were not able to move or communicate effectively, we never had any reason to doubt for a second that Max was happy. If you asked anyone caring for Max to describe him in a word, I'm sure most would choose happy. His smiles were also not random but almost always directly in response to seeing us and they told us that for any of things we were not sure if he understood, it was clear he knew very well how loved he was!<br />
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Through all the highs and lows that have followed in the years since, Max's smile has remained extremely important to us. When he is sick and not feeling well, the smile fades temporarily and that is usually his way of telling us something is wrong. Then, as soon as he is better, the smile returns and we know he is okay again. His smile is often more telling than bloodwork or any doctor's assessment. Frequently we will notice he is not smiling as much but be unsure why and then a day or two later, he spikes a fever or his labs come back bad. Max does not have words or signs but he has the most expressive face and his smiles and frowns are how he communicates with us and they are how we try and understand what he is feeling in his world. In that respect, his smile is so much more than just an expression, it is his primary form of communication.<br />
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And just as his smile gave us peace during those early conversations and queries about his quality of life, it continues to be our main source of reassurance that for all Max endures that he is ultimately happy and at peace. There are so many discomforts and limitations that Max endures that we feel powerless to prevent but on a day when his whole body smile is beaming at us, those seem less significant than the things he can do like laugh, enjoy family outings and find joy in his surroundings. If you were to describe Max's limitations and his medical history, it could certainly sound like a very sad situation. And yet, if you know Max and spend time with him, it seldom feels sad in the moment. He is charming, personable and his giggling at his mobile is so adorable, it is near impossible not to smile yourself. I've called Max's smile contagious many times before because being around Max truly is an uplifting experience. And not just because it will make you appreciate the things you can do (although that too is certainly true) but because he is so happy and his smile is so full of joy that you will end up smiling with him.<br />
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The fact that Max's smile is so important to us, to our ability to understand Max and to our sense of peace that there is more good than pain in Max's life is why these past few months when Max's smile had vanished have been so difficult for us. Max was quite happy and smiley through his hospitalizations in December but when he came home in January, we knew something was not right because he was crying a lot and not smiling. He ended up readmitted a little over a week later, stayed for a little over a week and then came home but still unhappy. We were worried about him and not surprised when he then ran a fever and was admitted again, and for over a week. More concerning was that when he came home then, he did not smile once for over three days. Those were long stressful days. We couldn't pinpoint what was wrong with him. No fever, no obvious source of pain. And yet it was just not like him to not smile and to give us non stop pouting faces and crying. Finally he began giving some half smiles but for two weeks, the smiles were few and far between and the crying and sad faces were prevalent and really troubling us.<br />
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When Max is miserable, we feel very stressed trying to determine what is wrong. Although he is four, he has no way to tell us or show us more specifically what is wrong. Although Addie still does not use words to describe what is wrong, she pulls on her ears or touches her throat or finds some way to usually indicate what is bothering her. With Max, we have this sad pout lip and tears but no real clue as to why. And when he is sad and his smiles are gone, our hearts are so heavy for Max. We long to be able to take away his pains and we feel sad that he cannot do the things his sister can that would cheer her up. His limitations seem bigger, his trials seem less surmountable and our ability not to dwell on the past or fear the future begins to fade. In a way, his sad faces are as contagious as his smiles. Without them, the sadness and fears creep back in and his situation starts to feel upsetting and instead of focusing on the great things in his life and that he can do, we find ourselves discouraged and worried.<br />
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Thankfully Max's smile free streak has come to an end, for now at least. He woke up happy on Saturday morning and is back to giving us full whole face light up the room open mouth exuberant smiles. He is still having some grumpy stretches but we have been able to handle those because a few minutes later we can hear his sweet laughter and see him grinning at us. We know that there are challenges of course for Max, but we know that in spite of them, he is happy. He sees the joy and he knows he is loved and that there is so much goodness in his life. When he sees us and flashes us that smile, we remember not the struggles but the sweetness, not the limitations but the love. His smile heals our hearts and are house becomes lighter and happier. It's pretty remarkable the power this sweet little face has over all of us. <br />
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I love to share the pictures of Max's huge smile in hopes that I can share his message with everyone. Yes there are difficulties and challenges in life, but there is also so much joy and hope. This weekend we got our happiness back and we are so grateful, We are soaking up the smiles, focusing on the good and praying that we can keep Max happy and smiling in the days, weeks and months ahead. Just for fun, some of my favorite pictures of the Signature Max Smile... I bet you cannot look at them and not end up grinning and falling in love with this boy!!<br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhpqjdDpd7CaoSuObf4afjxwJ0RWpaXbx8d16bHXiCUQT-pst7XeAbFanvK2X7oyFyZryHKyze7Qc6BTYBJDHOoebuMHaBfBZbUqYY8oKSHEboziWAUbpZciR0gXtqrDzGBq74nI7bb-1Y/s1600/max+smile+19.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhpqjdDpd7CaoSuObf4afjxwJ0RWpaXbx8d16bHXiCUQT-pst7XeAbFanvK2X7oyFyZryHKyze7Qc6BTYBJDHOoebuMHaBfBZbUqYY8oKSHEboziWAUbpZciR0gXtqrDzGBq74nI7bb-1Y/s1600/max+smile+19.jpg" height="266" width="400" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">First afternoon home from the NICU and we got a smile bigger than we had ever seen in the hospital! He knew he was home!</td></tr>
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<tr><td class="tr-caption" style="text-align: center;">Watching him smile while he watches Addie play is one of the sweetest joys to me! </td></tr>
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<tr><td class="tr-caption" style="text-align: center;">No doubt he knows how loved he is!</td></tr>
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<tr><td class="tr-caption" style="text-align: center;">One of my favorite pictures, loving the view from his new chair. </td></tr>
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<tr><td class="tr-caption" style="text-align: center;">One of his last really great smiles in late December before he went on his two month smile strike</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi7kJrFD1BMmUclsCT8gDf0-AP6l815qjVMZNVUCJlL5VZLUSrYqLKDbZE4UTBJGC7Y83m02qlBzDOazjZ-AjgaeqZkAL78Cn5LPtGt29zUfwNtq7rzED1NIxs4WJNlvUl1PjB3dKWiT28/s1600/max+smile.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi7kJrFD1BMmUclsCT8gDf0-AP6l815qjVMZNVUCJlL5VZLUSrYqLKDbZE4UTBJGC7Y83m02qlBzDOazjZ-AjgaeqZkAL78Cn5LPtGt29zUfwNtq7rzED1NIxs4WJNlvUl1PjB3dKWiT28/s1600/max+smile.JPG" height="426" width="640" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">And our most recent picture of the most beautiful smile in the world that was back this Saturday!!!</td></tr>
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<!-- Blogger automated replacement: "https://images-blogger-opensocial.googleusercontent.com/gadgets/proxy?url=http%3A%2F%2F3.bp.blogspot.com%2F-_WgBhylZslw%2FVP-H6qElNfI%2FAAAAAAAABng%2FmViOwba_6Nw%2Fs1600%2Fsmile%252B7.jpg&container=blogger&gadget=a&rewriteMime=image%2F*" with "https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhvgmUmS_rf1vBk__a0yS41MogM6hJ1_9Crg3w3ckhdeXFfRbhCoen6tlEfKYqLqG404LyP3ez0-BsTFvn5ARhzbs_fACDmc-tUoREwnfGzLZ9EYmt7MdQYrUNNKxIpwPeordpKx1iuhas/s1600/smile+7.jpg" -->Stephaniehttp://www.blogger.com/profile/18262244487289072606noreply@blogger.com0tag:blogger.com,1999:blog-3438191659852423887.post-45285088004116121742015-01-03T07:38:00.002-08:002015-01-03T07:42:02.731-08:00Chapter 27: The Holiday Card Assembly Line (Addie's First Hemo)Once upon a time, when I had a normal life and simpler problems, I taught Psychology. I loved learning about how the mind works and the tools to treat it when problems arose. Of all the mental illnesses we would cover, students were particularly drawn to learning about phobias. From the unusual things people could be afraid of to the creative ways to treat them, it is undeniably an intriguing look at the human mind. One theory is that the best way to treat a fear of phobia is simply prolonged exposure. We tend to fear things that we have not experienced and were we to experience it, the irrational fear would be replaced with a logical understanding of the previously terrifying concept. There is plenty of debate as to whether that form or therapy is brilliant or downright traumatizing but it has certainly been widely used.<br />
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Obviously I was not always afraid of hemodialysis. Back in my blissfully simply psychology teaching days, I never even thought about hemodialysis, if I even really knew what it was. But over the course of the year since Max and Addie, I had learned enough to be truly terrified of it, complete with sweating, heart racing and shuddering at the sound of it. Any parent could surely identify- imagine holding your new small, dependent, soft, just starting to smile and cling to you new baby and hearing about inserting a plastic tube into their heart. Then hooking them up to a machine that pulls their blood out of that tiny baby's heart, running it through the machine, easily ten times the size of your wee one, and then after three or four hours returning that blood, hopefully without encountering seizures, blood pressure swings or fatal infections. It would surely be enough to terrify any new mom. On top of the whole removing my baby's blood fear, we had been warned that babies on hemodialysis often need repeated blood transfusions, even every single hemo treatment and that more than six blood transfusions can make finding any compatible donor for transplant close to impossible. Both the immediate and long term risks scared me to death.<br />
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For this reason and because every doctor seemed to say the word quietly as if it was the medical equivalent of Voldimort and simply saying it would wreak havoc, I had a full blown phobia of hemodialysis. And throughout those two weeks in November, it was lurking at every corner and filling me with fear. I was so adamant against it initially that spending two weeks in the ICU, having chest surgery, and essentially starving my child all felt like a better option than hooking her up to the dreaded machine. However, my phobia was about to be put to the ultimate test- it was about to receive exposure therapy and time would tell if I would fear it more or less after seeing it face to face.<br />
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Exactly two weeks after Addie initially came to the hospital with fluid in her chest, we are sitting in the hospital room with a new chest tube in place, restricting her fluids and providing pitifully insufficient dialysis and feeling thoroughly defeated. The kidney doctors rotated weeks on service in the hospital so after a year of being immersed in hospital culture, we knew that Mondays would mean a new doctor, a new perspective and a new plan. Dr Doom and Gloom had moved to another hospital a few months ago so at this time, there were only three kidney doctors who would alternate: Dr Optimistic, Dr Nice and Dr Funny. I even told them I had them all pegged and really with those descriptions, we clearly liked them all and felt they all brought something useful and distinct to their way of interacting with us.<br />
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That Monday, Dr Optimistic came on to replace Dr Nice. This doctor was also the head of dialysis and the head of transplant so the doctor we had the most experience with and attachment to. She loved Max and Addie and had invested in our family and did always try and encourage us that we would survive all of this and see a great outcome. That Monday though, she walked in looking very sad. Since she had been one of the key ones emphasizing how hard hemodialysis would be on them, she definitely came in with a heavy heart to tell us we needed to start Addie on hemodialysis. By this point, though, we definitely saw it coming and had begun to make our own peace with it.<br />
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Dr Optimistic (or Dr S as we actually call her) went through all the reasons why we did not really have any other option. It was pretty clear that we did not know how to stop her from leaking fluid into her chest and continuing to withhold food, run poor dialysis and leave a plastic tube coming out of her side were not appropriate long term solutions. I will never forget Dr S saying to us that we needed to move to hemodialysis immediately because Addie was getting very sick on the inside and if we did not act soon, she was going to be backed into a corner that we could no longer get her out of. Right now, we could still help her and get her sorted out but if we left it much longer, it could be too late.<br />
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Those words were exactly what I needed to sign all the consent forms for hemodialysis confidently. I knew we needed to help Addie now and that this was the only choice we had. After all, everyone knows you never put a baby in a corner...<br />
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We actually could not act as quickly as we would have liked though because Addie was actually too sick and compromised for anesthesia that Monday. I always assumed you could be so sick you needed anesthesia, I had only recently learned you could be so sick you were denied anesthesia. Without good dialysis, all the electrolytes in Addie's body had become so messed up that it was not safe to put her under. The plan was we would substantially increase her peritoneal dialysis, running it with greater amounts of fluid and for longer for the next day. This would cause much more fluid to go into her chest but we had a chest tube in place to handle that. And then once we got her levels acceptable, she would go to the OR and have the plastic hemodialysis catheter tube placed into her heart. It would protrude out of her chest, in the area where you hold your hand over your heart to say the pledge. Then, because she was needing good dialysis so badly, the plan was to take her directly from the OR to the PICU and go ahead and have her first dialysis treatment that day. We were assured that there would be lots of doctors in her room and standing by during that treatment since we were not sure how she would respond to Hemo and especially having just been under anesthesia.<br />
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After that, we would remain in the hospital for a week or so for healing and monitoring. And then we go home and return five days a week for a three hour hemodialysis treatment. That which I had so feared was about to become a very big part of our lives. But, her home machine would no longer be used, there would no longer be fluid in her belly to get into her chest and she could breathe comfortably and sleep free of any machines. It had its clear pros as well.<br />
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For the 48 hours after we formulated that plan, Addie got a lot of dialysis and the doctors measured her bloodwork carefully and we prayed and worried. It was the worst part- knowing what was in store and knowing how many bad things could happen but having nothing to do but still in a small room and wait for it. Finally, the waiting was over and Wednesday arrived. They wheeled Addie off to the OR to get her catheter placed and we sat and waited. Normally, we were waiting for the surgery to be over and the relief to set in that the worst was past. This day though, we were anxious to get her out of surgery and our eyes back on her but knew that it would be a short-lived relief as we then went straight to dialysis. This day, more than any other, was jam-packed with anxiety and uncertainty. My mom, her best friend Becky and I spent the day together, trying to make small talk or read or tell each other stories, anything to take our minds off it all but the anxiety was so thick, it was as much a presence in the room that day as we were.<br />
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After a couple of hours in the OR, we got to go see Addie in recovery. She was groggy, whimpering in pain and now sporting her large new plastic tubing. It was nearly unbearable to fathom putting her through another traumatic event that day. The emotional part of me wanted to unhook her, grab her in my arms and just run. But, any time I thought about that, I remembered the metaphorical corner she was backing herself into without hemodialysis and knew that loving her meant holding her hand while she faced this and not whisking her away from it. So, I swallowed the pain and fear and walked with as they wheeled her into the ICU room and placed her next to the machine that towered over her in size. Addie was still drifting into and out of sleep so largely oblivious to the chaos in that room. There were two dialysis nurses- one of whom was our good friend who was their peritoneal dialysis nurse and another nurse who would be running the machine with her. Her PICU nurse was in the room and several PICU doctors were either in her room or just outside of it at all times. Dr S also wanted there to be a nephrologist kidney doctor in the room for the entire hemo treatment and could not be there herself for it all as she had clinic appointments that afternoon.<br />
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So into the crowded room where we all were hushed and stressed, entered Dr Funny. As with the other kidney doctors, I had known him close to a year now and always welcomed his stints as his jokes and cheerful approach lightened the atmosphere. Back in the NICU when Max's breath holding spells were scaring the other docs, he would make quips about how interesting it was that I decorated one babies bed in pink and one babies bed in blue and they had each matched their surrounding in their own coloring. He was no stranger to seeing us mid crisis as he had been on the terrible week when Addie was on the ventilator with heart failure so he did not seem particularly surprised to walk in and see me pacing the room in my yoga pants, sweatshirt and ugg boots and crazy hair thrown up in a ponytail looking stressed out and overwhelmed. He didn't seem surprised that I had my mom and Becky with me, as he was used to my support system always being a few feet away. He sat down at the end of the sad little hospital windowsill couch and pulled out a bag of cards.<br />
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We were surprised and intrigued as we saw him carefully take a letter on pretty paper and fold it, enclose a picture in it, stuff it in an envelope and then place address stickers and stamps on it. When I stared at him quizzically, he explained that he expected the next three hours to be completely boring and uneventful so he may as well work on his holiday cards while he was sitting there. It is hard to explain how much those words filled me with relief. Here I had been convinced the next three hours were going to be horrific, filled with blood splatterings, seizures, monitors alarming and utter panic and heartbreak. I had prepared myself for the worst few hours ever, But he who knew so much more than me had instead expected boredom and some down time. Surely if he expected blood to shoot from the machine, he would not have his precious cards out. Surely if he anticipated having to leap up to do CPR or dramatic medical interventions, he would not want a lap full of cherished photos. Certainly if he thought he was going to be making constant life and death decisions he would be pacing and scowling like me and not chuckling at his charming family's letter. But he did not seem to be worried about any of those things. And with that assurance, I exhaled, calmed down and paced at least a little bit less.<br />
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My mom and Becky, sitting there as bystanders to this scene and feeling quite restless, asked Dr Funny if they could help with the cards and so he handed one a stack of letters and pictures and the other a stack of envelopes and so the Holiday Card Assembly Line began. As the dialysis nurses fiddled with the machine and watched the monitors and Addie slept and I paced, they sat and chatted and stuffed. And that simple set up at once made the room seem less tense and less scary. As other doctors would come in and out, they would check on Addie and see that she was doing fine and then go over to check out the holiday cards, smile over the adorable children, debate about which recipients' names had changed and make cheerful small talk about the upcoming holidays. It was the next best thing to setting up a Christmas tree or placing Santa in the corner. In a room of anxiety, a little bit of cheer had snuck in.<br />
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Three hours later, the cards had been finished and Addie's first dialysis treatment came to a completely boring and uneventful finish. She had either slept or just tiredly glanced around. The dialysis nurses diligently managed and watched the machine but the handled it so well that from the outside, there was no obvious issues. Her vitals remained stable and the PICU team who were circling around found there to be nothing for them to do. The bag of blood standing by in case she needed a transfusion remained untouched. Addie's blood was cleaner than it had been in weeks, and we had just faced and survived our biggest fear. We were exhausted but also at peace that evening. That which had felt completely insurmountable had just had happened and we were all okay. <br />
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I won't say that I was 'cured' of my fear of hemodialysis. Nor should I have been. We would learn in the months ahead that the dangers of hemodialysis are real and that one uneventful treatment does not garauntee the same for the next one. I will never not fear hemodialysis for my children but my first exposure to it certainly removed my deep phobia of it. My panic and dread of it was replaced with a much more appropriate caution and rational concern. There would always be risks but if Dr Funny could waltz in with his holiday cards, certainly I could handle this and did not need to be on the constant look out for disaster. It was clearly a success story for Exposure Therapy. Stephaniehttp://www.blogger.com/profile/18262244487289072606noreply@blogger.com0tag:blogger.com,1999:blog-3438191659852423887.post-36276273518241244582014-12-28T06:39:00.002-08:002014-12-28T06:39:10.540-08:00Chapter 26: Because Staples are for Papers and not for LungsDuring Addie's post Thanksgiving hospital admission, I described living up at the hospital like having chronic jet lag. All concept of night and day dissolves when you have nurses and doctors who work night shifts and when you have a child who is not only going to have medical dramas during respectable waking hours. It was a completely typical night when a doctor would wake me up at 2am to ask me a random question about their medical history. It also had that blurred confusion feeling that I always associate with jet lag. The feeling of not being entirely sure where you are or what is going on and like the world around you is moving faster than your mind can work itself around. Looking back on that three week hospitalization, I still feel the fatigue and confusion. It is still difficult to put words to the highs and lows that happened constantly, at all hours of the day. More than any other phase or any other hospital stay, this one tested the limits of my physical strength and intellectual capacity. <br />
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Twelve hours after Addie first arrived at the hospital, she was sleeping with a chest tube in place constantly draining clear dialysis fluid from her chest into a white plastic collection container that doctors and nurses would come stare at every few minutes with serious pensive faces. She had a canula giving her oxygen since her flooded chest was making breathing more challenging. Her dialysis had been turned off to limit new fluid entering her chest so as a result her food had been watered down and significantly reduced. Exhausted from working so hard to breathe recently, she was sleeping oblivious to the concerned faces gathering around her bed all night and the hushed voices trying to work out a plan. No one really knew how to procede because no one had seen this complication before. They had no precedence to look to for direction. So they continued to stare of the box collecting fluid and grimace and sigh a lot. Laying on the couch in the room, it was nearly impossible to sleep myself as I was trying to make sense of their mutters and raised eyebrows. <br />
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A few short hours later and the day doctors came on and formulated a plan. Initially it had seemed inevitable that Addie would need to start hemodialysis, the form of dialysis that removed blood from the body and filters it through a large machine before returning it. Because of her very small size, the risks associated with this were terrifying. Such that every time a doctor mentioned the word 'hemodialysis' I envisioned a big terrifying black cloud of doom entering the room and immediately darkening the conversation with fear and dread. Raining down threats like 'seizures', 'multiple blood transfusions', 'infections', 'loss of ability to transplant', 'high mortality rate'. Any light in the room would be sucked out with just the mention of hemodialysis. So when the doctors came in Tuesday morning with a plan that would avoid hemo, I was all ears. The cardiovascular surgeon believed he could go in and find the source of the 'leak' that was allowing the fluid into her chest and remove the route for that to occur. He said it would involve a couple of weeks of recovery in the hospital but he thought she could stay on her peritoneal dialysis at very gentle low settings in the hospital with the chest tube in place in case any fluid did accumulate. Compared to what we had been fearing in the past few hours since this all erupted, this sounded like a great plan to us. <br />
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The next day, Addie was taken to surgery and it was the scariest surgery we had experienced in part because it involved her lungs but largely because the stakes seemed so high. If the surgeon could repair the area, she could eventually go home back on her machine and this whole disaster could be put behind us. If, however, he was not successful we all knew that the hemo black cloud would come storming in, terrifying us with its ominous risks. My mom and I sat there waiting for what seemed like an eternity for the surgeon to come talk to us. When he finally came out, he was smiling. He felt like the surgery was successful. He explained that he put staples in Addie's chest, closing off the area where the fluid had been accumulating. He stapled the outside of her lung to the wall of her chest cavity, removing any space for fluid to collect. He was happy with this outcome and presented us with pictures and a little baggie that had several example staples so we could see what was inside of her now.<br />
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It was a strange thing to be thrilled about but my mom and I were overjoyed with relief. We clutched our little baggie of staples and truly believed that those little pieces of metal were going to be the much needed solution to this nightmarish dilemma. We cheerfully passed on the news to our family and friends that Addie was going to be okay. And then we prepared ourselves for a reasonably lengthy hospital stay waiting for her to recover. But, we were okay with that because she was going to be just fine.<br />
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Over the course of the next week, we continued to grasp onto our hope even when her 'getting better' did not seem to be happening as quickly or as seemlessly as we had anticipated. The surgeon warned us that until everything was completely healed, we may still see some fluid collecting so when a couple of days after the surgery we start seeing the white box slowly filling up again, we tried not to panic. Once again the nights were marked with bright lights and concerned faces and staring at a fluid as if through sheer watching of it, we could all will that fluid to go away. Since she was still collecting fluid in her chest, we had to give her less and less dialysis which meant we consequently had to give her less and less food since we could not effectively clear waste. <br />
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Five days after her surgery, I tried to go back to work for a few days. I figured we were just waiting so I may as well try and conserve some of my time off for transplant or another drama down the road. I stayed the night at the hospital, left around 5 in the morning, taught during the day and then drove back out to the hospital. Every other night my mom would stay the night instead so I could have a break from the concerned stares and hospital buzz that continued all night long. I made it through four days back at work before I recognized I simply could not do that. I was far too exhausted and far too worried. The fact that Addie still did not seem better was weighing heavily on us and she was starting to become very weak and sick from the lack of food and the poor quality dialysis.<br />
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During this waiting phase, I really learned how incredible my daughter was. She was enduring awful circumstances, stuck in a hospital, being woken up at all hours for chest x-rays and to be stuck for blood. We were giving her barely enough food to survive on and a quick glance at her bloodwork and it was clear she was very sick inside. And yet if you saw Addie, you would never suspect as much. She would sit up and play. She rarely cried and was happy to sit on our laps or play with the new toys we were bringing in to try and cheer her up. She was often babbling and even smiling. She was in the ICU surrounded by extremely sick kids, many of whom were completely sedated and on ventilators and Addie was dressed in her Christmas attire, playing and even smiling at those who walked in. She was something of a celebrity in the PICU, nurses would come by just to see her and smile. Doctors would come in and comment that she must be doing better because of how good she looked only to get her bloodwork back and be taken aback to see how sick she still was. I learned in that phase that my daughter is absolutely the toughest, bravest person I will ever know. She has a strength and resilience I could only strive to match.<br />
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Ten days had passed since her surgery and nearly two weeks since she came in and the kidney doctor decided it was time to move forward and hope that she could handle it. Although she had been draining some fluid still, it was far less so he was hopeful that if we clamp the chest tube and then soon after remove it, she would be fine without it. He really felt like she needed some proper dialysis and proposed we put her back on her machine so she could get better clearance and more food and start to feel better. And if she was on her machine and not requiring the nurses to perform the slower dialysis, she could also leave the ICU. So after 10 days of just sitting and watching and waiting, it was decided that we would now change everything at once. We would clamp the chest tube in preparation to remove it soon, move her from the ICU to a normal room and put her back on her machine. If it went smoothly, she could be heading home in a couple of days.<br />
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We were nervous about all the changes but more excited than anything else. We were impatient with waiting and so ready to get Addie back home so we felt cautiously optimistic that Saturday evening as we set up her machine and waited. It was all very bizarrely timed that after days of doing nothing, we were now making all these changes at 9pm on a Saturday night but there we were. Al and Max came up and wished Addie luck and then she and I settled in for the evening. One of our old NICU nurses came up to visit us after her shift and she and I were chatting when it all very quickly went wrong. It started with her machine beeping and alarming angrily. It was claiming it could not seem to drain the fluid back out of her abdomen. I was stressing over the machine trying to figure out what was wrong with it when Addie starts fussing and getting really irritable. Then we notice that Addie's shirt is soaking wet. The chest tube itself is clamped so it cannot remove the fluid which seemed to have quickly moved to her chest so instead the water is just pouring out of her skin around the chest tube. I stood there horrified by the machine yelling at me while my baby girl's chest had been turned into a geyser and I am stuck on a Saturday night with no normal doctors around and out of the PICU with a normal nurse looking shocked and panicked with no idea how to handle this. I was so thankful Lori our NICU friend was there keeping me calm and helping to soothe Addie while i had to contact our kidney doctors and try and problem shoot this disaster.<br />
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Within a couple of hours, the machine had been turned back off. We had changed about 10 dressings and tops over her leaking chest and cut her food back. My mom had driven down to be with us and we sat there late that night completely discouraged. Two weeks into this awful hospital stay and we had made no discernible progress. Our sweet girl had endured a major surgery and weeks without real nutrition and it seemed we had very little to show for it. I don't think we had ever felt quite the same level of defeat as we did that night. It seemed like an eternity had passed since we enthusiastically clutched to our bag of staples and believed everything was going to be okay.<br />
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With the benefit of hindsight, I think that the two weeks of exhaustion and confusion was necessary in its own way. It was preparing our hearts to accept what was in store. Two weeks prior when they had mentioned hemodialysis I was filled with dread and determination to avoid it. I was convinced there had to be better alternatives. But sitting there that Saturday night confident that we had tried our very best and seeing firsthand how utterly unsuccessful we had been, my heart was already softening to moving towards hemodialysis. The two weeks of waiting, watching and feeling disappointment may have been exactly what we all needed to face what the next week had in store. It may have been the only way that when our doctor came in Monday and told us it was time for hemodialysis, we saw a rainbow instead of a black cloud. Stephaniehttp://www.blogger.com/profile/18262244487289072606noreply@blogger.com0tag:blogger.com,1999:blog-3438191659852423887.post-999295018528421772014-10-31T12:40:00.002-07:002014-10-31T12:40:19.282-07:00Embracing a Blank CanvasFour years ago as my belly grew and my ankles swelled, my dreams and visions for our future were also growing exponentially. A lifetime of hopes and plans were forming into a tangible picture that revolved around happy healthy chatty active little boy girl twins. It was a beautiful picture and I was sure it was what my life was meant to look like. It was not an overly detailed picture but it showed a happy normal family.<br />
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When Max and Addie unexpectedly arrived nine weeks early, I had to sketch in a few additions to my picture. Same beautiful dream, I would just add in a short NICU stay off to the side. Three weeks later when we realized they were going to spend years on dialysis and require kidney transplants, it felt like my picture had been torn to shreds. I cried and grieved for my tattered picture. And then as I wrapped my head around this new obstacle, I got out some duck tape and tried to piece it back together. Okay, it was going to take time and be a little more complicated than I had thought but I clung to my wrinkled taped up diagram and it gave me the motivation to get the kids transplanted. I was determined. I would not let my dreams sit in pieces, I would tape them back together. <br />
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Of course in the process of getting kidneys and trying to arrive back at my planned destination, things got even more complicated. We were told the babies had severe hearing loss. The tears I cried smeared the ink on my precious picture. But I pressed on, sketched in some hearing aids and was convinced I was back on track. We endured meeting after meeting telling us about all the things Max would not be able to do and I really had to face that his life was not going to look like the little boy in my picture. And I made my peace with that. I tore off part of my picture and I allowed him to have a new fresh corner. I accepted that I was going to have a special needs son with cerebral palsy and that life with him was going to look very different. And it took time, but I made peace with that and reached a point where I was no longer sad that part of my picture had to be replaced with a new fresh picture. But, part of my acceptance came with the condition that the rest of my picture needed to stay in place. I would have a son with special needs and that would be part of our life and then Addie would have a normal and typical life that looked like my picture and Al and I would fulfill our need to have the 'normal' expected parenting experience through her.<br />
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And I don't think there was anything specifically wrong with that dream and vision. I feel like it was basically what all parents dream of and expect- a happy, healthy, talking, walking kid in normal classes, doing normal kid things. I don't think my dreams were WRONG in and of themselves. But there reached a point where clinging to my ripped, erased and scratched through picture was keeping me from discovering something better.<br />
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On Thursday as we sat at the Autism Center and they told us that they were diagnosing Addie with autism, I sat there with my metaphorical picture always in my head and I felt sad. For plenty of good reasons like worrying about whether this would make life more challenging for Addie... but I also felt sad because I could not figure out how to cram one more thing into my already so altered picture. I felt daunted by the task of getting her in enough therapies, but I also felt daunting by how was I going to maintain a 'normal life' and fulfill my vision as a 'normal mom' now with another diagnosis in the mix. Among all the emotions I was feeling was my fear of losing that picture. I was so convinced that the picture was beautiful and perfect and good, even though in reality it was so covered in smeared ink, eraser markers, crammed in additions, and thick layers of duck tape.<br />
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It took me nearly a week after getting that diagnosis and of staring at my picture and trying to figure out how I would fit this new reality into my old vision and then of feeling sad about the loss of another part of my picture before I finally grasped what God has been saying to me for a long time: Throw Away the Picture. Throw it completely away. And start over. Let go of the expectations, dreams, images and plans you had for your life and your family. And embrace new dreams, plans and pictures. Don't squeeze new blessings into old plans because they never shine as brightly when they are tucked behind tape crammed into a corner of an old vision. Take a fresh blank canvas and create an even more beautiful picture- not of the kids and life you had envisioned but the precious ones you have been given.<br />
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And finally I got the message and realized that as long as I was holding on to what I thought I wanted I wasn't allowing my life to become something better. So it took four years and more diagnoses that I could even list to finally throw away the picture I had of what my life and my role as a mom was going to look like. And in its place there is now a beautiful, undamaged, blank canvas. Now there is more than enough room for a precious little girl to have autism and still be everything we could ever want. There is room on my blank canvas for a little wheelchair, a breathing machine and a revolving door of nurses and therapists. On my blank canvas, I can become an awesome special needs mom without worrying about whether I'm still doing the 'normal' mom things I thought I needed to do or be. <br />
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And once I finally did let go of my tattered picture, what I felt was not sadness at all but great relief. And excitement. Instead of worrying about how to fit my life in, I was now free to just see how my life would turn out. When I was constantly editing my picture, I was preventing God from really painting the picture He had envisioned. I thought I was protecting something important but in reality I was preventing something amazing.<br />
<br />
And so here we are. I have no idea what all the future entails but I know that life with a son with severe cerebral palsy and a daughter with autism and hearing loss will be challenging, rewarding, joyful, heartbreaking, hilarious and exhausting all the time. And I'm committed to figuring out who I am, both as a special needs mom, and as a person outside of that role- as a wife, daughter, friend and teacher as well. I started a new Facebook page devoted specifically to my role as a Special Needs mom because that is clearly going to be a huge part of who I am and because I genuinely hope and pray that our journey can bless others- those going through something similar, or just those who like seeing adorable kiddos experiencing real miracles. I also separated the page from my personal page because although I totally recognize that being a special needs mom is going to be a huge role in my life and clearly one of God's greatest plans for me, it is not going to be ALL I am. I want to maintain balance in my life and still find ways to connect with family and friends just as me and not as 'Mom to kids with CP and autism'. So I'm going to try and ensure that as I figure out this new picture, I figure out how to be the fighter and advocate that Max and Addie and the special needs community needs without completing losing the other roles I value in my life!<br />
<br />
I wanted to share about my experience and how this new diagnosis has in some ways changed things and in other ways just helped me let go of something I should have done a long time ago. Partly just because I have always been open in sharing not just our medical updates but about the emotional journey it has taken me on. But also partly because in some ways this realization has everything to do with special needs kids and in some ways it is something I think everyone goes through in some ways at some time. Life rarely looks like we expected. Dreams change, complications arise and our roles and expectations adjust. And sometimes we get out our duck tape and press on. And other times, we throw out what was and embrace a blank canvas and look forward to seeing a new beautiful picture come to life.Stephaniehttp://www.blogger.com/profile/18262244487289072606noreply@blogger.com2tag:blogger.com,1999:blog-3438191659852423887.post-67216082037930196852014-09-27T06:45:00.001-07:002014-09-27T06:46:41.627-07:00Chapter 25: The Day when Everything Changed for AddieThe first three months of the kids being home from the NICU was intense in every way. It was difficult and tiring and it was exciting and joyful. Throughout those months, we were assuming that we were still in the initial adjustment phase and taking for granted that the coming months would see us settling into a routine and that the difficulties would start to fade into the background and the joys of being a family at home would increase. We enjoyed those three months, but we definitely lived them assuming easier days were ahead. Unfortunately, we were wrong in that assumption. Three months home from the NICU, right about when we thought things were going to start getting easy and routine, we ran into a huge obstacle that seemed to provoke a domino effect of impossible decisions, heartbreaking discoveries and never ending procedures and drama that would not settle down until Addie would be transplanted six months later. Knowing all we now do, I wish we had savored those three months more because on the Sunday after Thanksgiving, our world was about to get turned upside down. And it all started with a grunt.<br />
<br />
Thanksgiving week itself was wonderful. Since Addie had come home the Sunday night before I started teaching, I had not really had any stretch of time home with the kids so I was counting down to that Thanksgiving week like never before. Nine days off in a row to just be with my babies and my family and to rest. We decided we needed a change in scenery from our gameroom hospital so we actually loaded up tons of medical supplies, all our theirs clothes and toys and 150 'Cell City' posters that I had big intentions of grading and we moved in with my parents for the week. They were living at Bethel, their huge dream home and there was tons of room there and it was just a great change of environment for us. The week was restful and fun and although not free of some hiccups, generally lived up to what I had envisioned. <br />
<br />
The only significant issue that came up that week was that we met what we now refer to as 'The Picture Curse'. With us all being together and my brother being out as well, my mom had booked a professional photographer to come to their house and take photos. The babies had long missed out on newborn photo sessions and we were all excited to get some great photos of them and all of us together. The night before the photo shoot though, late in the evening, Al noticed that instead of draining clear fluid from his dialysis, Max was instead draining bright red Kool Aid looking fluid. We were terrified and drove him downtown to the ER at close to midnight. Several fun hours in the ER and it was determined that he had drained blood due to a problem with his heparin or blood thinner dosing. He seemed fine several hours later and we were on our way back home but all exhausted and Max had missed dialysis during the night so had to come home and spend the day hooked up to his machine so pictures had to be cancelled. It would be three more cancelled picture sessions before we would identify that planning family pictures is most clearly a curse!<br />
<br />
Other than that, the week was uneventful and we were sad to pack back up on Sunday and head back home. We gathered all our equipment and the 150 Cell City posters that remained ungraded and headed home. I had noticed even the day before that Addie had seemed grumpier than normal. And Sunday morning she definitely did not seem like herself. Initially she just seemed fussy but as the day went on, she was no longer really fussing but just tired acting and not her smiling self. And then I heard it. She was grunting as she was breathing. I had to listen for a while to make sure that I was hearing it correctly and not just crazy paranoid imagining it. Ever since Addie had grunted while breathing during her heart failure, I had learned to fear hearing that sound come back. In the initial weeks after her heart failure, I actually thought I was losing my mind trying to strain my ears to make sure there was no hint of a grunt in her breath. But months had passed since then and I had stopped thinking it was about to come back. Until it did that Sunday.<br />
<br />
I wasn't sure what to do so I sat Addie in my lap and used my iPhone to video her breathing and sent it to our dialysis nurse who passed it onto her doctor. Their biggest reaction was "Addie looks better than you do! You look completely stressed out and panicked!" They did agree that Addie seemed to be breathing heavy with some grunt but thought she was still active and alert so they had me check all her vitals- blood pressure, oxygen saturations, temperature- and when everything seemed fine, they told me she probably had some extra fluid on her so run her on high dialysis settings and then bring her in to the hospital once her treatment was done the next morning so they could check her out. Had we tried to take her in that night, we would have ended up in the ER for hours before getting a room and she would have missed important time on her dialysis machine so the plan made perfect sense.<br />
<br />
If I had anything to do over again, I would not have gone to work the next morning. It was, and to this day still is, such a struggle to balance working with kids with major medical needs. And if I took off every time something seemed wrong, I don't think I would ever have worked those first couple of years. Addie was sleeping peacefully when I left and she wasn't set to come off her machine until about 10am, at which point my mom was going to take her down to the hospital to have them look at her. I figured I would work and leave right at 230 and meet them down there. Even though I had heard the grunting and was really worried about Addie, I clearly had no idea what was really going on or I would have stayed home with her and been there for that hospital trip. <br />
<br />
My mom called me at my lunch break and said that they were on their way but Addie did not seem good to her. She and Al had both agreed that Addie seemed pale and like breathing was a struggle. I felt really awful then not being there but my mom assured me Addie was in good hands (which she was) and that she would keep me updated when they got there. So, despite feeling very anxious and upset, I taught the rest of the day. I had a few updates from my mom but not enough to really put together what was going on. As soon as my last group of students walked out the door, my mom said that the doctor wanted to talk to me and explain what was going on and asked me to call her.<br />
<br />
I remember the scene far too well, standing in my classroom using my room phone by the door and talking to our wonderful kidney doctor Dr S who sounded shaken up and genuinely sad as she told me that Addie's oxygen saturations were too low (sitting in the 80s instead of upper 90s) and that when they listened to her, one of her lungs seemed to be collapsed by fluid surrounding it. She told me with emotion that she had admitted Addie straight to the Pediatric ICU and that she was going to have to have a chest tube placed in her lung to drain the fluid and we will go there. She recommended I get there as soon as possible and told me how sorry she was. I stood there talking to her with tears pouring down my face. I had no idea what was happening, none of us did yet, but I knew it was very bad and that I was scared to death. I defaulted to assuming something must be wrong with her heart again and felt so petrified of heading back down that road. Several of my co-workers had walked through to see me standing on the phone with the doctor crying so everyone was coming in and asking what they could do to help. My friend Shannon ended up driving me to the hospital so I didn't have to drive myself while my friend Eve went to my house to collect clothes and anything we needed from home to bring up to the hospital for us. <br />
<br />
We arrived at the hospital and Addie was in the PICU on oxygen and it was so sad to see her like that. It was a long evening and night as we worked to get her stable and to get answers. Dr S explained that she had two main hypotheses for what was wrong: either she was in heart failure again, or she had a bad respiratory infection that was causing pneumonia. Both of those options sounded terrible. We needed to get the fluid out of her chest and then get bloodwork and a heart echocardiogram done. They gave her mild sedation and put a chest tube through the side of her chest into her chest cavity. The fluid drained out pretty quickly and within an hour, 400ml (more than a can of soft drink!) had drained out her chest. The most shocking part though was not even the amount of fluid... it was that is was absolutely clear. It looked nothing like any of the fluid you would expect to come off someone with an infection or heart trouble. It looked foreign, not like your own body's fluid would look like. When she saw it, our Dr S recognized immediately. Oh my goodness, I think that is dialysis sugar water coming out of her chest.<br />
<br />
Every day we were putting clear sugar water into her abdomen, the peritoneal cavity that is a self contained space holding your digestive organs. Separating that area from the lungs are layers of tissue and a diaphragm. There should not be any reason at all for dialysis fluid to be anywhere but her belly. And yet when they run dextrose sugar tests on the fluid coming out of her chest, sure enough it was dialysis fluid surrounding her lungs and making her work hard to breathe.<br />
<br />
I think a part of me was relieved by this news initially. It wasn't her heart!! And the echocardiogram the next morning would support that her heart seemed to be just fine. I was so grateful for that news that I was not sure what to make of the fact that it was instead a very confusing and serious dialysis complication. Addie started breathing easier and the grunting had stopped once the fluid had been drained so as I made my little cot bed up that night in her room in the PICU, I had calmed down a lot from how upset I had been earlier in the day. I figured she had some dialysis issue that they would be able to figure out and fix and everything would be fine.<br />
<br />
While I slept on my cot that night in my ignorant relief, it was a long night for Addie's doctors who were frantically researching what was going on with her. By the time we woke up early the next morning, they had discovered that there are only three documented cases of this complication happening to someone on dialysis and they were all adults. There was not a single case they could find of a child on dialysis ending up with fluid in their chest. Turns out my sweet girl was truly one in a bazillion. And it turns out in this case, that was NOT a good thing. That day meant meeting with a lot of doctors trying to work out a plan for her. We debated surgery, we debated hemodialysis and we talked a lot about how very unsure we were of what would end up working for her.<br />
<br />
I wish this was a short story that I could now neatly wrap up but that Monday was but the beginning of a three week PICU stay that would include two surgeries and a transition to Hemodialysis. Life for Addie and for our family would never be the same again after that and the happy ending to this story is months away in a new hospital PICU room in California. In the meantime, there are more stories to be told, more challenges to endure, and more evidence that my little girl is a complete miracle.<br />
<br />
And so just like that, with a grunt, our three months of having the babies home and adjusting to a lovely life at home together came to a crashing halt and we were thrown onto a whole new crazy rollercoaster...<br />
<br />
<br />
<br />Stephaniehttp://www.blogger.com/profile/18262244487289072606noreply@blogger.com0tag:blogger.com,1999:blog-3438191659852423887.post-61961771765329751462014-09-20T14:10:00.005-07:002014-09-20T14:27:46.051-07:00I AM BATMAN<div class="MsoNormal">
<span style="font-family: Verdana, sans-serif;">My name is Alister Graham. And I am
Batman.<o:p></o:p></span></div>
<div class="MsoNormal">
<span style="font-family: Verdana, sans-serif;"><br /></span></div>
<div class="MsoNormal">
<span style="font-family: Verdana, sans-serif;">Batman is a man of strong convictions and
determination. Batman suffered a trauma
at a young age when his parents were killed in front of him. This trauma is part of what gives Batman his motivation
and drive to fight crime. My trauma came
later in life, when at the age of just three weeks old, both of my twins were
diagnosed with a rare genetic kidney disorder.
The motivation and drive this has given me is to fight for my children,
to get them the best care and to keep them safe, comfortable and happy.<o:p></o:p></span></div>
<div class="MsoNormal">
<span style="font-family: Verdana, sans-serif;"><br /></span></div>
<div class="MsoNormal">
<span style="font-family: Verdana, sans-serif;">Batman is a symbol of hope to the
citizens of Gotham City. When they see
the bat signal light up the night sky they are reminded that there is someone
out there on their side, doing what they can to make the city a better, safer
place. One of my favorite memories of
Max happened when I was attending to him late at night. Max woke slightly and slowly opened his sleepy
eyes to see my face watching over him.
Max then let out a big smile, and closed his eyes and went back to
sleep, with the comfort of knowing that I was there, watching over him and that
he was safe.<o:p></o:p></span></div>
<div class="MsoNormal">
<span style="font-family: Verdana, sans-serif;"><br /></span></div>
<div class="MsoNormal">
<span style="font-family: Verdana, sans-serif;">Batman is results oriented. He is not afraid to employ unconventional
methods to achieve the outcome that he seeks, even if it puts him in harm's way.
When our hospital told us that they
would not transplant our children because they were too small, we began exploring
other options. Ultimately we discovered
one of the few hospitals in the country with experience dealing with kidney
transplants on such small children. The
outcome we managed secure for our twins freed them from dialysis and greatly
enhanced their day to day quality of life.<o:p></o:p></span></div>
<div class="MsoNormal">
<span style="font-family: Verdana, sans-serif;"><br /></span></div>
<div class="MsoNormal">
<span style="font-family: Verdana, sans-serif;">Batman often finds himself in sticky
situations. Batman has to maintain his
composure and be cool under pressure. He
needs to draw on his training and experience to escape whatever predicament he
finds himself. When Max was younger, he
would periodically decide to quit breathing if he got upset, turning himself
different shades of blue in the process.
This earned him the affectionate nickname in the hospital of Maximilian
the chameleon. Suffice to say this did
not make the early days of Max first coming home from the hospital very
easy. Several times a week Max would
decide to quit breathing and we would have to pump some air into his lungs
using a device to get him to start breathing on his own again. Thankfully, as Max has gotten older he has
since outgrown this condition. <o:p></o:p></span></div>
<div class="MsoNormal">
<span style="font-family: Verdana, sans-serif;"><br /></span></div>
<div class="MsoNormal">
<span style="font-family: Verdana, sans-serif;">Both Batman and his alter ego Bruce Wayne
are seen as mysterious and desirable by women. I like to think of Stephanie as Bruce Wayne's
love interest in "Batman and Robin" who just happened to be played by
Elle Macpherson. Alternatively you could
view her as Batgirl, helping me fight crime in a leather jumpsuit. Either way, throughout everything, Stephanie
has been the best partner anyone could have hoped for. I don't know how either of us would have made
it this far without each other.<o:p></o:p></span></div>
<div class="MsoNormal">
<span style="font-family: Verdana, sans-serif;"><br /></span></div>
<div class="MsoNormal">
<span style="font-family: Verdana, sans-serif;">Batman is an orphaned, billionaire,
vigilante, scientist, engineer, businessman and martial artist. OK. You
got me on that one. Moving on...<o:p></o:p></span></div>
<div class="MsoNormal">
<span style="font-family: Verdana, sans-serif;"><br /></span></div>
<div class="MsoNormal">
<span style="font-family: Verdana, sans-serif;">Batman has a sidekick, Robin. Someone always by his side. Together they form the dynamic duo and patrol
Gotham City eradicating scum from the streets.
Max is my Robin. Whenever there
is a crisis, we are there, meeting it head on.
Wherever I go, Max accompanies me.
When I am at home, he is always there in the same room as me, by my
side. The most faithful of companions. I
never feel alone or in need of company when he is there.<o:p></o:p></span></div>
<div class="MsoNormal">
<span style="font-family: Verdana, sans-serif;"><br /></span></div>
<div class="MsoNormal">
<span style="font-family: Verdana, sans-serif;">And still, in spite of all of this, I
just can't shake the feeling that perhaps I got it all wrong. It was too easy for me to be Batman. Too easy for me to make that claim given what
limited role I have played in all of this.
This whole time, it has been Max in the trenches, fighting the good
fight. He is the one that has had to
overcome the trauma of his ailments. Me?
I'm just the support. I'm the one that's
been there on the sidelines, giving Batman different tools he needs to fight
his way out of a sticky situation. At
the end of the day there is only so much we can do to help Max. He has to do the rest on his own. He is the Batman. <o:p></o:p></span></div>
<div class="MsoNormal">
<span style="font-family: Verdana, sans-serif;"><br /></span></div>
<div class="MsoNormal">
<span style="font-family: Verdana, sans-serif;">Max's Batman is also a ladies' man. One night, when Max was around 6 months old,
for some reason I ended up staying much later than usual in at the
hospital. While I was sitting there
holding Max, a nurse showed up and looked disappointed that I was there, as she
would normally come by and hold Max at that time. Then, a few minutes later, another nurse came
by. Then another. The nurses would line up for their chance to
hold Max. Before that night I had no
idea Max was such a ladies' man. Even
after we first brought him home, Max would lie awake at night, ready and
waiting for his nurses to come by and hold him. <o:p></o:p></span></div>
<div class="MsoNormal">
<span style="font-family: Verdana, sans-serif;"><br /></span></div>
<div class="MsoNormal">
<span style="font-family: Verdana, sans-serif;">Batman has many foes. Whenever a villain threatens Gotham City, it
is ultimately up to Batman to confront them.
These foes can be unpredictable at the best of times. Just when you think you understand the
Joker's plan it twists and turns on you.
Max's immune system is suppressed so that he doesn't reject his new
kidney. As a result, he is extra
susceptible to picking up whatever virus is going around. Should Max get an infection, it takes his
body much longer to fight it. But that's
OK. In the end, Batman will prevail.<o:p></o:p></span></div>
<div class="MsoNormal">
<span style="font-family: Verdana, sans-serif;"><br /></span></div>
<div class="MsoNormal">
<span style="font-family: Verdana, sans-serif;">And so, at the end of the story, Batman
has vanquished his foes, the people rejoice and Gotham City is safe once
more. Until next time. There is no telling who will be the next villain
with an evil plot to throw Gotham City into chaos. In the mean time, I will stand by Batman's
side. I will take care of him, keep him
out of trouble and maintain the Batcave that is his bedroom. But all the while I will be on guard for the
next villain. And until that time comes,
we will not take our time together for granted. For now, Gotham city is safe.</span></div>
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<span style="font-family: Verdana, sans-serif;">My name is Alister Graham. And I am Robin.</span><o:p></o:p></div>
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Stephaniehttp://www.blogger.com/profile/18262244487289072606noreply@blogger.com3tag:blogger.com,1999:blog-3438191659852423887.post-19866905918283513492014-09-07T07:38:00.001-07:002014-09-07T07:38:23.539-07:00Chapter 24: The Last Night I ever Slept in Sexy Jammie'sI believe that any crisis or emergency becomes immediately ten times more frightening if it occurs during the middle of the night. Our awake brain is primed to handle the unexpected but when we are dragged from a blissful deep sleep to confront our biggest fears, well, that is quite simply every mom's worst nightmare. My middle of the night crisis came unexpectedly, contained all the fear, drama, and frankly humor you could expect from such a scene, and it left me completely changed.<br />
<br />
We were very lucky that within a couple of weeks of the babies arriving home from the NICU, Al's parents arrived to stay with us for 7 weeks. We had never been so happy to see them arrive and we immediately put them to work. It is a good thing they love us or they may have never come back after those seven weeks! They still laugh about the trip when they would change beds up to 8 times a night because the babies threw up constantly on dialysis. At this point, our biggest need was sleep and help during the night so that we could sleep. Dialysis can only be performed by the trained parents so home nursing help was out of the question and despite the fact that Max still sporadically and unexpectedly stopped breathing, everyone seemed confident that we could handle taking care of these two babies all on our own. We, needless to say, had our doubts. So when Mandy and Peter arrived, we decided we would take shifts so that everyone could sleep uninterrupted at some point and there would still be an adult awake with the babies 24 hours a day. With my needing to work and Al needing to be awake in the day to deal with setting up dialysis and calling doctors, my wonderful in laws signed up for the middle of the night shifts.<br />
<br />
Mandy and Peter were extremely self sufficient in caring for the babies in the dead of night. There were only a handful of situations they would need us to step in and handle, such as replacing feeding tubes or dealing with dialysis machine alarms. Or Max holding his breath and passing out. The last of those being our biggest fear and our main reason for needing someone keeping vigil all night. Since they had arrived, Mandy and Peter had seen Max in full blown Max attack mode only once but it was seemingly out of the blue and enough to scare us all like crazy. We knew to expect it if he needed a shot or a feeding tube replacement but sometimes he would have bad reflux or pain from something unclear and he would just go straight from fine to no longer breathing without so much as a warning. Thankfully these incidences were much more rare now and yet, at the same time, that did little to truly reassure us. They did not happen often but they happened enough that we were always well aware that it could occur at any moment.<br />
<br />
The biggest scare we would ever have with his Max attacks happened one October night, or should I say very early one October morning. I was enjoying having the evening help and had a couple of weeks of interrupted sleep by that point and was taking for granted that I would wake up refreshed each morning. As I got ready for bed that night, I threw on this short, thin black nightie that I actually got from my lingerie shower before my wedding! I have no idea why I thought this was appropriate sleepwear that night but it was a warm night and it was there in my drawer so I didn't really think twice about it when I put it on and snuggled under the covers for a good sleep before I would have to wake up and head to work.<br />
<br />
Several hours into my cozy sleep, I hear my name being shouted with panic. It takes my foggy sleepy mind a few seconds to recognize that this is, in fact, real and not merely part of a bad dream. By the time I have opened my eyes, the yelling of "ALISTER! STEPHANIE!" is louder and closer as Mandy is running down the stairs to get us. I was already up while Al was still blinking and trying to figure out what was happening so I follow her up the stairs while she fills me in that Max was totally asleep and then made a quiet choking sound and then stopped breathing. They started yelling for us when we was turning blue but by the time I made it to the top of the stairs, he was lying in his crib white as a sheet, still and limp and looking completely lifeless. My in laws were there in their own pajamas looking stressed and concerned. I immediately charge into my supermom crisis mode and yell that someone needs to lift him out of his bed and onto the floor. Don't worry about the cords right now, just get him out of his bed as fast as you can. Someone else get the oxygen tank wheeled as close to him as possible. As soon as Peter gets Max onto the ground I immediately lean over him, my silly nightie now wrapped somewhere around my waist, and start pushing air into him with the bag as fast as I can. He does not respond right away and I am getting absolutely terrified. What if he was been out longer this time? What if he choked and his airway is blocked and I am not going to be able to get it open? I'm pushing air as hard as I can, sweating and nearly crying while I am also trying to figure out what my plan B is going to be. I am sure this whole scene lasted only a matter of minutes but it certainly felt like an hour to me squatted down with my exposed body worrying to death about my son. About the time Al had made it up the stairs to see if I needed help, Max finally gasped and took a breath.<br />
<br />
I continued for a couple of minutes to squat beside him, blowing oxygen on his face while he slowly recovered. It had been such a long spell that he did not just immediately pink up and breathe normally. He continued to gasp and then not breathe for close to a minute before he finally seemed to be stabilizing. At some point in that minute with my true panic having passed, I took a moment to reflect on the ridiculousness of this current scene. Me with my nightie no longer serving any function wrapped somewhere around the middle of my stomach feeling very embarrassed and exposed, even though I know no one in that room was thinking about me at all during those terrifying moments. My poor in laws looking scared and frazzled, my husband looking half awake and as much puzzled by the commotion as truly scared, since he had missed the worst of it. Max laying on the floor wrapped in his own cords, slowly coming back to life. It was around that point that I was scanning the scene that I also noticed the laptop set up in the corner of the room and startled faces staring out from it. Mandy notices it then as well and calls out 'We'll be right back!' and I realize then that Mandy and Peter had been on Skype with my brother and sister in law when all this happened. My first selfish thought is wondering exactly how much of my bottom in the air they saw! Then, of course, I realize I hope they saw as little as possible not because of my silly vanity but because I knew that none of us who had seen Max like that were going to recover quickly.<br />
<br />
As we started to return order to the room, Al offered that I should go back to bed and he would stay up with them. I went back to my bed and stared at the clock that said 4am and knew that I would not be getting any more sleep before I needed to get up for work in under two hours. I lay there in my bed, praying and thanking God for protecting Max. Worrying about what would have happened if my in laws had not been there and we had slept through his warning choking sound. Thanking God again that my in laws were there and knew to call for us. Praying for Max and his future. Praying for my heart and mind to calm down. Then I couldn't think about it anymore so I tried to make myself think of anything else. At one point, I was lying there forcing myself to plan their first birthday party. Don't think about what you just saw, think about cupcakes!<br />
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Two hours later I drag myself from my bed and my restless last few hours to throw clothes on and head to work. I taught that morning and then sat down to lunch with my friends. I felt like I had to tell them about what had happened. And yet, I couldn't really describe how bad it was. I couldn't put words to it. I couldn't put them through imagining that or knowing how scared I was. So instead I sat down and said "So last night, I performed CPR on Max while wearing lingerie in front of my in laws" and proceeded to give as humorous of an account as possible of exactly how hideous of a sight I would have been with my twisted black nightie and sweaty panic. They all listened and generously laughed at my descriptions, even though I know they knew it wasn't funny either. But, I chose to tell the funniest part of a story that I could find because it was the only way I knew how to cope. I hoped that if I could focus on the humor of such a dramatic situation, that I could convince myself not to worry every night as I went to bed.<br />
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It would be a long while before I really slept soundly again and even now, sleep will never be the abandon all cares experience it once was. For a long time after that night, I would lie awake sweating in my flannels afraid to go asleep and have something happen, worried about hearing my name during the night, never knowing when it would happen again. The aftermath of these moments definitely took their toll on us. But, nights passed and my sleep was uninterrupted and over time I did heal and move on from that night. The haunting images of Max lying there became blurrier in my mind and I was able to remember that night partly with humor but more with wonder at the things we endured during that time. I also am able to remember that night as evidence of another time that God was looking out for Max and had just the right people there at just the right time. I can remember it not with fear that it happened but with thankfulness that he survived it and with confidence that Max has endured so much in his life because he has such an important purpose. In so many ways, I have completely recovered from that middle of the night crisis. Having said that, never again have I slept in anything sexy again and I go to bed every night nice and covered up, because hey in our life you really do never know and the next time I wake up to a crisis, I intend on being completely decent while I save my child's life!<br />
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<br />Stephaniehttp://www.blogger.com/profile/18262244487289072606noreply@blogger.com0tag:blogger.com,1999:blog-3438191659852423887.post-14077331418910855822014-09-01T05:49:00.001-07:002014-09-01T07:56:25.118-07:00#BESTSUMMEREVER<div class="separator" style="clear: both; text-align: left;">
With a teacher work week and a full week of school for both me and the kids now complete, summer truly feels over and in the past. I always love Labor Day weekend though, because the three day weekend provides this great transition. A time to be in the sun and eat ice cream and remember everything wonderful about summer, while preparing yourself for the long stretch ahead before Thanksgiving. It seems as good a time as any to finally write my summer review or reflection that has been sitting on my to do list for a while! There are posts that are hard to write because there is just too much sadness to tell or too much medicine to try and explain. And then there are posts like this one that are hard to find the time to write because there is just so much JOY to share!! Our summer was jam packed with family time, travel, healthiness and rest. We went into it with big plans and great hopes and it truly exceeded our expectations. And as it is now leaving us, this summer has left us renewed, restored and grounded with new hope and confidence. It is a summer we desperately needed, thoroughly enjoyed and will never forget.</div>
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If you have been following this blog, my sporadic 'non-book posts' throughout 2014 documented a very emotional and important journey in the first half of the year. The first post I wrote in January called "Living without a Crystal Ball" was probably the saddest post I have written. I have written posts that are more dramatic in describing bad events but when I read back on that one, it is clear that we were very afraid about Max's future in January of this year. After a terrible November and December, I was resigned to not even wanting to know about the future because I so feared it was going to be bad. Then in February, one month later, I wrote a post called "The Audacity of Hope" which really marked a turning point for me personally. It was at that point that I stopped fearing for Max's future and chose to be hopeful. But it was also clear that I chose hope against what I felt was rational or logical. I took a huge leap of faith in believing things could turn around and be better. It did not happen right away, but by June, things really did seem to be turning around for Max and I wrote a post called 'Making Plans Again' sharing that Al and I had moved from just hoping for things to be better to actually planning on happiness and opportunities for joy. We made these summer plans that I am not sure we truly believed would all happen but that represented our dreams for what summer could be if Max really was better. We entered summer having made a complete emotional turn around. We were exhausted from a hard year but more, we were excited. And I really believe God honored our hope, our excitement and our leap of faith in making so many awesome plans with a truly phenomenal summer. We were able to do everything we had planned and everything was as much fun as we had dreamed it to be. And as I write this, Max has not spent a night in the hospital in over three months. I re-read my crystal ball post tonight and I felt really sad for myself then and just wish I had known that if I had looked in a crystal ball six months ago, I would have seen so much joy and not the things I had feared.</div>
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At some point earlier this year, I started using a hashtag with my photos of #hesbeenfaithful and it came about because one day as I was thinking about everything both babies had been through, the old church song "He's been faithful" popped into my head. So I went and uploaded it onto my phone and have probably listened to it a hundred times since. I thought I'd share the lyrics to that song because I really think it is a perfect testimony to what we have been through these past few years and where we are now:</div>
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In my moments of fear</div>
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Through every pain, every tear</div>
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There's a God who's been faithful to me</div>
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<b>When my strength was all gone, </b></div>
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<b>When my heart had no song</b></div>
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<b>Still my God, He was faithful to me</b></div>
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Every word He's promised, is true</div>
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<b>What I thought was impossible, I've seen my God do</b></div>
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He's been faithful, faithful to me</div>
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Looking back, his love and mercy I see</div>
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In my heart I have questioned, even failed to believe,</div>
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Yet He's been faithful, faithful to me</div>
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When I look back now at the past year, I see how God was faithful to us through all of it. And I see this summer as just a great gift of love and mercy. </div>
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I will include the wonderful highlights of our summer below in pictures because the faces in those photos can capture our joy better than my words can. But our summer was filled with relaxing family mornings were Al cooked us big breakfasts, lots and lots of time spent in water, wonderful visitors that made us so happy and four trips full of lifelong memories. It was packed with family time and adventures that we could all share together. And it still managed to be very relaxing. I read ten books. I got lots of sleep. I tried out new recipes. I had a ball playing with my camera and capturing the moments big and small. By the time it was time for school to start back up, my pants were tight and my heart was full. It was everything a summer should be!</div>
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At the end of last summer I wrote a very happy summer in review focusing on all the good times we had over Summer 2013. But, I also had to fill up half of that post updating on all the medical things that had occurred over that summer- Max's rejection, his neurological issues and pseudo seizures and Addie's liver problems. Last summer was a mixture of good and bad. This year I do not have a lot to write about medically because the babies were very stable over summer. Max particularly had an amazing summer! 10 weeks without so much as a cold! We had been nervous initially about taking him to Tennessee without a nurse and away from hospitals we know but by the time we left, we were not even worried about him. He was so smiley and so cheerful and his breathing sounded great. And he loved his time away. He is so social so having 6 adults to hold him and talk to him and make him smile was the best for him! After such a great summer, Al and I decided it was time to look into him going to school. He had been classified as a homebound student and had a teacher come to the house once a week but we knew he would love the stimulation of being in a classroom. The school was so helpful and within a week of us letting them know we were interested in him starting on the first week of school, they had everything organized. So Max ended the summer on a real high note, with a backpack ready, a school shirt made and everything in order to join his sissy at school!</div>
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Addie actually had more issues than her brother over the summer. She had a lot of ear infections and two cases of tonsillitis but she is extremely tough and we generally only knew she was sick because she wouldn't be able to sleep well over night. So we did spend a lot of time at the pediatrician's office but I always find there to be something reassuring when your biggest medical concerns are so wonderfully 'normal'. The biggest drama or disappointment of the summer was our news regarding Addie's hearing. So I did want to share a little more about that in my summer reflection.</div>
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Addie has not made any significant progress with talking in the last year or so. And while her not talking at 2 seemed more reasonable, we were getting discouraged not to see much more communication at three and a half. School was awesome for her in terms of her learning how to follow instructions and transition between activities. We saw big improvements in her physical development and her mastery of things like coloring and building, but very little progress in her communication. And it is frustrating to be three and not able to explain what you want so it was causing some behavioral issues as well. We wondered if she was still hearing us because we also were finding her to be less receptive and responsive to us. It was hard to know if that was related to hearing or to some sort of other more behavioral issue or concern. Then she temporarily lost a hearing aid and we needed up to date hearing results to order a new one. Any attempts at behavioral or sound booth testing were failing to give us consistent results and were definitely suggesting she was not hearing much. Her audiologist really felt that the only way we could know for sure what she was hearing was to do an ABR brain wave test under anesthesia. It took a while to get one scheduled and then she missed her appointment in June due to tonsillitis so it finally happened in July.</div>
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It was a dreadful morning, not so much because of the actual hearing test but because of huge difficulties getting IV access on her to start the anesthesia. Three hours and more than five sticks later and we called our favorite dialysis nurse to come down and she was able to get her accessed. Then we waited on the test results. We knew that day they were not good and that they showed her hearing was no longer measuring as moderate loss but now at profound loss. We were exhausted from the IV drama and not really clear on what it all meant. We were not devastated or shocked and in some ways we thought it might actually explain a lot in terms of her not talking. It started to really seem like a big deal a couple of weeks later after we met with both an ENT and a follow up visit with her audiologist and we really understood that unless Addie's hearing does really improve after putting tubes in, she will not be able to hear what she needs with only hearing aids and would need a cochlear implant, which is a big process both in implementation and training for use. After meeting with her audiologist one morning in August and realizing that this could end up being a very big deal for Addie, I shared on Facebook about what was going on and about the results we got in July.</div>
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Right now Addie is wearing her new stronger power aids well and is scheduled to have tubes put in and her hearing re-tested with them in on September 22nd. That should tell us what direction we will head in. We are praying her hearing is better and we can use the power aids and see an improvement in her responding and communication. We are prepared, though, that we may find out that we will be beginning the process of getting ready for a cochlear implant, which will be a big deal, but which we will do happily if it means we can get Addie hearing and communicating. We are also scheduled to have some formal </div>
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neuro-developmental testing done in November to try and assess what kind of social and behavioral impacts the past few years have had on Addie's development and to get her in the best therapies for her. Needless to say, it is going to be a big couple of months for Addie. We are just so grateful she is so happy and delightful and that none of this is preventing her from experiencing joy and feeling loved. </div>
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And so now summer is over and we begin a new chapter, a new season in our lives. As a teacher, my life is always divided by the school years rather than the calendar years so September seems like a new year for me. I always want to start off each year with a positive attitude and enthusiasm for the year ahead. Last year, I went into the school year all excited that the worst was past and that nothing too bad was going to happen for our family. And then, of course, that proved to be very wrong by November. So I started thinking a month ago about how do I want to approach this new year. And here is what I have come up with:</div>
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I have absolutely no idea what this year has in store for us. There are a lot of exciting things we have planned and are hoping for like both kids being in school and finally making it out to Australia. But really, I have no idea what challenges could lie ahead. I do not know if it will be an easier year or not. But, what I do know with complete certainty are these things:</div>
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-God is bigger than anything we could face this year.</div>
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-There will be an abundance of joy this year.</div>
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-No matter what happens, we will be okay.</div>
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-Nothing can happen that we cannot recover from. </div>
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-Regardless of what is happening each day, we can continue to have hope for the future.</div>
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So my attitude for this year is that while I have no idea if it will be an easy year or a challenging year, I have no doubt that it will be a great year. </div>
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And once I decided that was my attitude for this year, I felt so happy and confident and excited for the year. Because I know that my hope and confidence is not dependent on circumstances. And therefore nothing can happen that would completely throw us off. We actually got a chance to test our new approach during the first week of school. We had been absolutely overjoyed that Max was going to get to start school with Addie this year. And then on the Friday before he was meant to start on Monday, he got sick with a g tube (feeding tube) infection. He was not able to go on Monday and ended up needing an antibiotic and to see his doctor. If we had gone into this year saying Max is never going to get sick again and all our plans are going to happen, we could have been really discouraged. But instead we just counted it as one of the many things that could happen that we did not foresee but that that we would get through just fine. We knew God was bigger and that Monday was just one day so we did not let ourselves get discouraged and then when he was better and ready to go to school on Friday, we got all excited and celebrated. </div>
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So that is our big plan for the year- to make lots of exciting plans and then to know that whether they happen exactly as we anticipate or not, that God is in control and that everything is going to be okay. And to soak up every joyful moment and pray through every challenge. And with that plan, I feel really excited and confident that this is going to be an incredible year.</div>
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<b><u>OUR SUMMER IN PHOTOS:</u></b></div>
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiaevAA1qpkcEBLmEHdywV7886gGlMZLoNRuGDqEUYpIgwVF8BY9g58SCMjBiQKf6XufACyJ4fieVYpG03i4cmpthvgF5oifsKd7Z7z9sLBH3bIBYz4cSMC0zCknPp6en_tNm-C6O9LzLs/s1600/summer+2.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiaevAA1qpkcEBLmEHdywV7886gGlMZLoNRuGDqEUYpIgwVF8BY9g58SCMjBiQKf6XufACyJ4fieVYpG03i4cmpthvgF5oifsKd7Z7z9sLBH3bIBYz4cSMC0zCknPp6en_tNm-C6O9LzLs/s1600/summer+2.JPG" height="425" width="640" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Summertime is all about water for Addie! Playing in the sprinklers at home!</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg13kcTn9Rafx_a6AD_C9ODytlB9bY6OPL8BOIgi3gVjtcnFbCuUAPsVzFI6GKRX9VV6ONYs5uBLSDTESTKWrvPwUgYrJVe0AEM4icrQJUBEqOVcUhoGJHkj6fRa0grog8owXiwK6zHE1A/s1600/summer+3.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg13kcTn9Rafx_a6AD_C9ODytlB9bY6OPL8BOIgi3gVjtcnFbCuUAPsVzFI6GKRX9VV6ONYs5uBLSDTESTKWrvPwUgYrJVe0AEM4icrQJUBEqOVcUhoGJHkj6fRa0grog8owXiwK6zHE1A/s1600/summer+3.JPG" height="470" width="640" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Or the fountains at market street!</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiXU64EvV8B3Tdz3BSWNL66GFc2X938VWxYHeI01VGuNgzKQL3eeDo1iSAZDpI8Z3T6g-dpKMk4ZzNST2jWmX7vQUFy3vwnjAsU1kYUZQztkFo6zz2pDNh3fWBexUVY2kKecnHmOjxZYe0/s1600/summer+6.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiXU64EvV8B3Tdz3BSWNL66GFc2X938VWxYHeI01VGuNgzKQL3eeDo1iSAZDpI8Z3T6g-dpKMk4ZzNST2jWmX7vQUFy3vwnjAsU1kYUZQztkFo6zz2pDNh3fWBexUVY2kKecnHmOjxZYe0/s1600/summer+6.JPG" height="426" width="640" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">This summer Addie rode on 7 different carousels in 3 different cities!!!</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjeRa0xmeYndKO_ivhUW-K7rhinjsSupTcCWtTow3s_i4DRrp8MTBHnP2DzY47cWiOSqpZy1JtqLMEtlxdQmQyadvyfGpNvFO5RXEWyxYuDYQVUXcLo9MoV7CSoVsGgS5qetIr5UYsbM_o/s1600/summer+7.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjeRa0xmeYndKO_ivhUW-K7rhinjsSupTcCWtTow3s_i4DRrp8MTBHnP2DzY47cWiOSqpZy1JtqLMEtlxdQmQyadvyfGpNvFO5RXEWyxYuDYQVUXcLo9MoV7CSoVsGgS5qetIr5UYsbM_o/s1600/summer+7.JPG" height="448" width="640" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Twin time together at the Children's Museum</td></tr>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhyBn6afCezuiQZuZSTKKfhuWzNKJeLMffI85jrpDle39h7HpU4F74xe0_rMhYiVs16EteaeWxf4xK9zZDvYuKH4CinHtKv6cWLyCiYDqAB1c4psA4el-Z1XGsOagqG0mXtVwTN3pBy22w/s1600/summer+14.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhyBn6afCezuiQZuZSTKKfhuWzNKJeLMffI85jrpDle39h7HpU4F74xe0_rMhYiVs16EteaeWxf4xK9zZDvYuKH4CinHtKv6cWLyCiYDqAB1c4psA4el-Z1XGsOagqG0mXtVwTN3pBy22w/s1600/summer+14.JPG" height="426" width="640" /></a></div>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiSSkxNQsRdiKsQ-gNG0Bot0RDahbdk4SRUWPWgNfFHyt5eL4Q1mIXvab-OIlYPmM9kB8lSmqbf0x0TPEeAZ1nO7rgEN7I-SZLdyYnZihBlGhNzC-NdUQzC0g3eHTsE2436_RAHucmxWIM/s1600/summer+16.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiSSkxNQsRdiKsQ-gNG0Bot0RDahbdk4SRUWPWgNfFHyt5eL4Q1mIXvab-OIlYPmM9kB8lSmqbf0x0TPEeAZ1nO7rgEN7I-SZLdyYnZihBlGhNzC-NdUQzC0g3eHTsE2436_RAHucmxWIM/s1600/summer+16.JPG" height="640" width="458" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">This summer we celebrated Papa and Daddy on Father's Day (and we also enjoyed doing lots of my Pinterest craft projects!!)</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEipv6duyGEGp-iwYNDYU8PPI5WSBSOn1mRh-bGXsH7E30P1fIVySkzb9xbuEKM8vfT97A0u60xeEe2MfEMks6YkCgpYRTQefuJEF73uB9UwCEbCoLO-wEpGIV13ApBWiXfkgmbcEQr4BXM/s1600/summer+17.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEipv6duyGEGp-iwYNDYU8PPI5WSBSOn1mRh-bGXsH7E30P1fIVySkzb9xbuEKM8vfT97A0u60xeEe2MfEMks6YkCgpYRTQefuJEF73uB9UwCEbCoLO-wEpGIV13ApBWiXfkgmbcEQr4BXM/s1600/summer+17.JPG" height="640" width="426" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">For my birthday we went to San Antonio and stayed at the Hill Country Resort. Addie spent the evening in the lazy river and then at night got to watch Shrek 2 on the lawn!</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjNYGZc_Ht4JSeBaBsBhPmUi3u0XlJpL3XCsg00JCNsrtMdzKEOyafhBKgHIyELkjlGxwUrYO-PZ3zR2Bwqg1aHjlUy6CZYVvpfcVXbXj-SeqvNvdmWsSPwWDMJsrzr8cwCkYPUUBNQllY/s1600/summer+18.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjNYGZc_Ht4JSeBaBsBhPmUi3u0XlJpL3XCsg00JCNsrtMdzKEOyafhBKgHIyELkjlGxwUrYO-PZ3zR2Bwqg1aHjlUy6CZYVvpfcVXbXj-SeqvNvdmWsSPwWDMJsrzr8cwCkYPUUBNQllY/s1600/summer+18.JPG" height="640" width="426" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Travelling to San Antonio also meant Addie's first Bucee's trip!</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgikB2bo3F0HpxaklFSyL8WgPS0dnBx-UIa5598wau-xvqvniv2swaNApmlnoZNw6OQIIqmnnkuDpK9RA3_ov1j90jsKKiBD02llAx-Xfr8Ph4QRfeWGDQZ4AqOP4-QuP0qJj_nF3FpUHs/s1600/summer+20.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgikB2bo3F0HpxaklFSyL8WgPS0dnBx-UIa5598wau-xvqvniv2swaNApmlnoZNw6OQIIqmnnkuDpK9RA3_ov1j90jsKKiBD02llAx-Xfr8Ph4QRfeWGDQZ4AqOP4-QuP0qJj_nF3FpUHs/s1600/summer+20.JPG" height="480" width="640" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Essentially the whole reason we picked Sea World was so that Addie could meet Elmo, her hero! The moment did not disappoint!</td></tr>
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<tr><td class="tr-caption" style="text-align: center;">It thrills Mommy and Daddy to see her so happy!!</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgZU1Yy39YZsAlH9ZT0DzeUj6KN25oxxxVU2wJjXLlUb4UvRbG7omzSGapvbJSEUrzp345Ujgr8v6zgB__u_WFJC5yGriOd4WXmyadV8nQ8t-8qXrkAYmZBBMpzfqELT3yxBeJWNmsrn-8/s1600/summer+24.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgZU1Yy39YZsAlH9ZT0DzeUj6KN25oxxxVU2wJjXLlUb4UvRbG7omzSGapvbJSEUrzp345Ujgr8v6zgB__u_WFJC5yGriOd4WXmyadV8nQ8t-8qXrkAYmZBBMpzfqELT3yxBeJWNmsrn-8/s1600/summer+24.JPG" height="640" width="640" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">We discovered at the Rodeo that Addie LOVES rides so Sea World's kids area was awesome for her!!!</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiWmbrZH6DA2hs_qCmB_tyUsG_SyrXhcONKjKzDKSQ6KC5r4LYAF2mx7o6fBS_cvklNDSYPgbslBTSHPDbOKDUwlLsPsX4mOGF1LS6MrvBLOvE1bIqn5Ra8sKo1WEVhL3rV74GeT7jOuv0/s1600/summer+25+(2).JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiWmbrZH6DA2hs_qCmB_tyUsG_SyrXhcONKjKzDKSQ6KC5r4LYAF2mx7o6fBS_cvklNDSYPgbslBTSHPDbOKDUwlLsPsX4mOGF1LS6MrvBLOvE1bIqn5Ra8sKo1WEVhL3rV74GeT7jOuv0/s1600/summer+25+(2).JPG" height="426" width="640" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">They also had a Splash pad!! It was seriously like Addie's dream place!! All her favorite things!</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhfIgG7VQLeFBlFkuLX2Pg2UJbsEfIGx3DpzNLjSzhB4ECd-42sLkcmHcRv3w-QHsrWIoxPAivEPHdSXZ9zxKwqR0g5GFtTyDghRQSjbOgjMvt88z10BrSLGm0AU4qgwL1ASQXLinSn4Ow/s1600/summer+33.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhfIgG7VQLeFBlFkuLX2Pg2UJbsEfIGx3DpzNLjSzhB4ECd-42sLkcmHcRv3w-QHsrWIoxPAivEPHdSXZ9zxKwqR0g5GFtTyDghRQSjbOgjMvt88z10BrSLGm0AU4qgwL1ASQXLinSn4Ow/s1600/summer+33.JPG" height="426" width="640" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">A few days after we got back from Sea World, we had a special visitor! My dear friend Kaylea from Australia that I had not seen in 5 years (since my wedding!) came to stay with us for four days. We had an amazing time!! We ate and shopped enough to make up for lost time!</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg9Sx0zgmCqG2ZdlAQioMb-AK1SgTe45BLv85RDHH2JPH_aL5FbvpJJZugsxrE6udP7syuI7GHahfVMLcwtY5I2mPu8CaxLYWcibDwESV4rRICT_GZZGVRaT5VBzilovhKbT4gNkitpTZ4/s1600/summer+34.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg9Sx0zgmCqG2ZdlAQioMb-AK1SgTe45BLv85RDHH2JPH_aL5FbvpJJZugsxrE6udP7syuI7GHahfVMLcwtY5I2mPu8CaxLYWcibDwESV4rRICT_GZZGVRaT5VBzilovhKbT4gNkitpTZ4/s1600/summer+34.JPG" height="426" width="640" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Kaylea got to experience the Children's Museum herself. Obviously the highlight of her trip!</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjGE2CDNiEEQ2dagMdKC1PEw2Ek6qioCE7bThQKh-ehlF5nLwfIjB7HVn_lx9GlaEYTw5SpGHQDD4ID6kBS6QZ8DOvYiTje3K7mj8RZg_5jGvs6pWZ3dNNgAMUMbnHx1e1516qE2NX7dLk/s1600/summer+35+(2).JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjGE2CDNiEEQ2dagMdKC1PEw2Ek6qioCE7bThQKh-ehlF5nLwfIjB7HVn_lx9GlaEYTw5SpGHQDD4ID6kBS6QZ8DOvYiTje3K7mj8RZg_5jGvs6pWZ3dNNgAMUMbnHx1e1516qE2NX7dLk/s1600/summer+35+(2).JPG" height="424" width="640" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Max is the most loving and friendly child! Every new visitor is exciting for him!! </td></tr>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjdK4bJBJkfahW45Wyl0DFQXLpey4W_Ll6JVQdcJl-G7kbs2glzTHgItM811_l0yLax2GZgSno3mCkFIl2wshh0hOaPX3LTUUJ3VEdNWoso1V2Qyv40foceFIVrflIPUagi02gP4P0SjLE/s1600/summer+36.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjdK4bJBJkfahW45Wyl0DFQXLpey4W_Ll6JVQdcJl-G7kbs2glzTHgItM811_l0yLax2GZgSno3mCkFIl2wshh0hOaPX3LTUUJ3VEdNWoso1V2Qyv40foceFIVrflIPUagi02gP4P0SjLE/s1600/summer+36.JPG" height="424" width="640" /></a></div>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEivTSc1XrpZg4DEuXXr-UZWsCsuaDKyS6Y-fWSE6FNKd9mgDu03ZiP4DEowh9x34b5OmG-zqHExgcQ95s8u28HqlD6kywyhrbZeMjuq2StO4apr9HsfgwduMquf_hcsLIZuyNU3A9Ix2qM/s1600/summer+37.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEivTSc1XrpZg4DEuXXr-UZWsCsuaDKyS6Y-fWSE6FNKd9mgDu03ZiP4DEowh9x34b5OmG-zqHExgcQ95s8u28HqlD6kywyhrbZeMjuq2StO4apr9HsfgwduMquf_hcsLIZuyNU3A9Ix2qM/s1600/summer+37.JPG" height="640" width="640" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">We beat the Texas heat by checking out all the indoor playgrounds!! Wonderwild was a huge hit!!</td></tr>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjKeINCYbrsf6n3LDuM8EEaOx36em3R3pjugVqTItU2GXlhxa9g5GtrsDAwuoWHRoGobfjBM5pnRSwKfPyZuMpSjveHvg783x8v5XU0_kcTqXtAYWhUDM628Tgah5T9XmwH6cSZsgIUI8c/s1600/summer+39.JPG" imageanchor="1"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjKeINCYbrsf6n3LDuM8EEaOx36em3R3pjugVqTItU2GXlhxa9g5GtrsDAwuoWHRoGobfjBM5pnRSwKfPyZuMpSjveHvg783x8v5XU0_kcTqXtAYWhUDM628Tgah5T9XmwH6cSZsgIUI8c/s1600/summer+39.JPG" height="426" width="640" /></a></div>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiwUnmdOk-OG6vQE4kkRriq-rX9S5f-aszCrdLKkRSu9f6U_fO9hZ52V-JLPXzjLCt-xynNFMeWBhFMMEEHdqUdurATF7r-MvagJqnIHU5-MGvc1OtepoeLWaAhOAOU6RafbFGsN94gQaE/s1600/summer+42.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiwUnmdOk-OG6vQE4kkRriq-rX9S5f-aszCrdLKkRSu9f6U_fO9hZ52V-JLPXzjLCt-xynNFMeWBhFMMEEHdqUdurATF7r-MvagJqnIHU5-MGvc1OtepoeLWaAhOAOU6RafbFGsN94gQaE/s1600/summer+42.JPG" height="640" width="640" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Addie got very good at fingerpainting this summer!</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhKTE1w107_RX_yYF-QVErM0HKklgWoSYtKnMfLEl87N3RwvqEQRGTIhN0n0kfHg_Q5j-bO27FL36i2O3uJioNLbEr6jNE6Fa3ajSibfsG5lH5PqKTQpJCg4Jzp5-CrutbvKlhs9R9L9BI/s1600/summer+44.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhKTE1w107_RX_yYF-QVErM0HKklgWoSYtKnMfLEl87N3RwvqEQRGTIhN0n0kfHg_Q5j-bO27FL36i2O3uJioNLbEr6jNE6Fa3ajSibfsG5lH5PqKTQpJCg4Jzp5-CrutbvKlhs9R9L9BI/s1600/summer+44.JPG" height="426" width="640" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">After an awful winter, Max was just so happy to be feeling so great!!! </td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhftZHBQxbi8hzpPH0Dy6fgSSzTExcViQUpi99QkhdpEGMcELzNCVKkvPZ7b9D6vDCrCSyy3Dmq903xM7tl7gsy7DL0XPCoFdbO6VmNSkJ6o_VFJfJUAIEASQ_4H6mFfQVz73QpQgTEPTE/s1600/summer+45.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhftZHBQxbi8hzpPH0Dy6fgSSzTExcViQUpi99QkhdpEGMcELzNCVKkvPZ7b9D6vDCrCSyy3Dmq903xM7tl7gsy7DL0XPCoFdbO6VmNSkJ6o_VFJfJUAIEASQ_4H6mFfQVz73QpQgTEPTE/s1600/summer+45.JPG" height="640" width="426" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">For Al and I's fifth anniversary we took the kids to the Houston Aquarium for the day!! Addie loved the rides and outdoor activities while Max loved the fish! </td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEicx_R0hl3TdFcl-e8MoESx6b-t05pfRUhYzz33kQ-jCb4ZkH7m7hqd47yZekf0HEzSUV8nB678YocXpyq7LTkF2qnElEJwSHj2RBLznOYRWOeSeedLNxaaPiCxR_8fz2T_tCE-yZ0LMQM/s1600/summer+46.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEicx_R0hl3TdFcl-e8MoESx6b-t05pfRUhYzz33kQ-jCb4ZkH7m7hqd47yZekf0HEzSUV8nB678YocXpyq7LTkF2qnElEJwSHj2RBLznOYRWOeSeedLNxaaPiCxR_8fz2T_tCE-yZ0LMQM/s1600/summer+46.JPG" height="426" width="640" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Sea themed carousel was adorable!</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi7CO-HwxjuMW9RbKVe6TZjM1ADgtcBDzz7C5hTk4UxH79KJfx6B8fIYzWCXoZxNn_5AKcadBrcXI_w9BxGMM1bI2pRmu1JE_IfqO9DX-guhGVHGGYqxDSj8w-SJzUzBXTzQq3olABKCb8/s1600/summer+47+(2).JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi7CO-HwxjuMW9RbKVe6TZjM1ADgtcBDzz7C5hTk4UxH79KJfx6B8fIYzWCXoZxNn_5AKcadBrcXI_w9BxGMM1bI2pRmu1JE_IfqO9DX-guhGVHGGYqxDSj8w-SJzUzBXTzQq3olABKCb8/s1600/summer+47+(2).JPG" height="426" width="640" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Her favorite dropping right Aquarium style with frogs!</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj1AioZM2cJcFFYZjShWnT7AOFczDUW5v-1inl3jrGDU_4wjfnDMP4_s8Nzx5xWiIq3DsrivVPV9AhVyDiWzl-b0bmSbGF0kete2zoH9f9pui8kxtFql0ejVkT1EpWw9R58gU1NQE9s8r4/s1600/summer+47.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj1AioZM2cJcFFYZjShWnT7AOFczDUW5v-1inl3jrGDU_4wjfnDMP4_s8Nzx5xWiIq3DsrivVPV9AhVyDiWzl-b0bmSbGF0kete2zoH9f9pui8kxtFql0ejVkT1EpWw9R58gU1NQE9s8r4/s1600/summer+47.JPG" height="426" width="640" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">First ever time on a ferris wheel. She is our thrill seeker so naturally loved it!!</td></tr>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiaPfMeHdyhJpcpVpsg0rKM11HaoJz4Pea2glAbRamrRehyphenhyphenlr-MkZUcjuAf737J-0_Umt8HgBuwrZhJ4TTkVPLNQaAikG25Vf61GdqX5FXbBIWrKaCoCJSsLc3t16cvidceei_EeO-nTJc/s1600/summer+48.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiaPfMeHdyhJpcpVpsg0rKM11HaoJz4Pea2glAbRamrRehyphenhyphenlr-MkZUcjuAf737J-0_Umt8HgBuwrZhJ4TTkVPLNQaAikG25Vf61GdqX5FXbBIWrKaCoCJSsLc3t16cvidceei_EeO-nTJc/s1600/summer+48.JPG" height="426" width="640" /></a></div>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj7DGkoy7m8GzByTah1XD6M8jQVa7zLMUCZenc6Ff0k0TRH7dBxiPgBPZoSxuMSgqKCQ01attcPStVPC4KGsAmMoYLiUFwrYNUaiMtPUJ_LqWrWwY3Gzuw3CuWkmhriYaYjxvrdFLyXY78/s1600/summer+49.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj7DGkoy7m8GzByTah1XD6M8jQVa7zLMUCZenc6Ff0k0TRH7dBxiPgBPZoSxuMSgqKCQ01attcPStVPC4KGsAmMoYLiUFwrYNUaiMtPUJ_LqWrWwY3Gzuw3CuWkmhriYaYjxvrdFLyXY78/s1600/summer+49.JPG" height="426" width="640" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">The highlight of the aquarium day for Al was the white tiger which he was definitely not expecting to find at an aquarium!!</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEijW9AdP9VTwIS8XoeLOd7V6KzOMTlmTDwOvvBeF8YFezohRI50Tff3kSePuo3iuf41Ocx2NRuElQfD8mcSBORAvwz2Bh_G26KJrtX_1a5MQLmqPcNkF5oykvpfLfMJBi0DmEmyrFH-Oyo/s1600/summer+50.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEijW9AdP9VTwIS8XoeLOd7V6KzOMTlmTDwOvvBeF8YFezohRI50Tff3kSePuo3iuf41Ocx2NRuElQfD8mcSBORAvwz2Bh_G26KJrtX_1a5MQLmqPcNkF5oykvpfLfMJBi0DmEmyrFH-Oyo/s1600/summer+50.JPG" height="426" width="640" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Happy Fourth of July!! Kids first fireworks experience. Both really enjoyed watching them!!</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgcA2o1aWMf5toORVyrloS_OY2K_sB7e9moYkDqjUP9riVdLkDLMSBj4S462uawJ6IyyFVKvu6Ij54snDKTiF7eBJb2SDJmQ7gsNIlPPqyfPTuyAEYwZoARLyOFyUHruejpxYmKvIav8hY/s1600/summer+51.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgcA2o1aWMf5toORVyrloS_OY2K_sB7e9moYkDqjUP9riVdLkDLMSBj4S462uawJ6IyyFVKvu6Ij54snDKTiF7eBJb2SDJmQ7gsNIlPPqyfPTuyAEYwZoARLyOFyUHruejpxYmKvIav8hY/s1600/summer+51.JPG" height="426" width="640" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Addie loved being escorted to and from the fireworks in her wagon</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh3dfdicP-pClUmpxVmcAFkF-01gecImj1WY76dEt9TGnYs5MErBzNgXxMGz1rts9BszJtDIi_bT41eUVPHdi7dXY6A5_PRDaB5CuP6sRwLFeWmf7d6MwXFKX-Yo2dSs1kNWjBZzvZO_Uo/s1600/summer+52.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh3dfdicP-pClUmpxVmcAFkF-01gecImj1WY76dEt9TGnYs5MErBzNgXxMGz1rts9BszJtDIi_bT41eUVPHdi7dXY6A5_PRDaB5CuP6sRwLFeWmf7d6MwXFKX-Yo2dSs1kNWjBZzvZO_Uo/s1600/summer+52.JPG" height="426" width="640" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Fun summer day activities- playing with colored rice on a parachute. It was all fun and games until we had to get the vacuum out! The colored rice has not made a repeat appearance!</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjkkPph0bIAQZzcEevS11djWutUY_KUySnWHMpnD9eOrcDpmS93kA0crUMiAYcXiRi2KjrPL19is86J7VypCOBpdygVZyzBJQ6rQYAk-ZhZlqtZTc7stajvJpjJt5_lXQQsueTK-cEYQeo/s1600/summer+53.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjkkPph0bIAQZzcEevS11djWutUY_KUySnWHMpnD9eOrcDpmS93kA0crUMiAYcXiRi2KjrPL19is86J7VypCOBpdygVZyzBJQ6rQYAk-ZhZlqtZTc7stajvJpjJt5_lXQQsueTK-cEYQeo/s1600/summer+53.JPG" height="426" width="640" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Family beach day in Galveston!! </td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiQkwXJOPHPrvpotGGknvjFMUR3caYJK5mEWn9eaao8MwfYd9k8mU7qhX3CzBCHoPSeGiAS9tEymTqQa1MZdgq13B5ACtim5dUrMcgYhRyT1mJ8Chogm1nq536d5Sn1D6k60I3I_kHCd6w/s1600/summer+54.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiQkwXJOPHPrvpotGGknvjFMUR3caYJK5mEWn9eaao8MwfYd9k8mU7qhX3CzBCHoPSeGiAS9tEymTqQa1MZdgq13B5ACtim5dUrMcgYhRyT1mJ8Chogm1nq536d5Sn1D6k60I3I_kHCd6w/s1600/summer+54.JPG" height="426" width="640" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Al's plan for keeping Max cool and happy at the beach was to get him nice and wet first and it was very successful! Not sure Max loved his first lazy river experience but he sure appreciated the cool down!</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhM1UqFcN4YEzVvE0x-fwjK11mc8PXxZ7Omr1QJsojIvFkihcEShffwn_0kjR71HLI01fiHyh8Gq_4tkMSwBVwhOuoM1Pd_kr8k9KeRd6DjEuCLn7z_eudo0VggyUz8cmxey8Zcu0_Ccsw/s1600/summer+58.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhM1UqFcN4YEzVvE0x-fwjK11mc8PXxZ7Omr1QJsojIvFkihcEShffwn_0kjR71HLI01fiHyh8Gq_4tkMSwBVwhOuoM1Pd_kr8k9KeRd6DjEuCLn7z_eudo0VggyUz8cmxey8Zcu0_Ccsw/s1600/summer+58.JPG" height="426" width="640" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Max has always had an extremely hard time dealing with heat. He sweats a lot and body temperature can be hard for him to regulate so we were shocked and thrilled to see how much he loved our beach day!</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgIZAjJxsKnbudQH202DFpIuscL5MBCNJdvbgTDxFWMWzG6VTFHBn-_SXT9j_7Le1gRJaiTIebdc4Hfgafd_ZrROzyyjWMVbnsBqx5IrH2Jp8EJbJ2dycobJq4EC-wHKhMeHPuHG-DPgt8/s1600/summer+59.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgIZAjJxsKnbudQH202DFpIuscL5MBCNJdvbgTDxFWMWzG6VTFHBn-_SXT9j_7Le1gRJaiTIebdc4Hfgafd_ZrROzyyjWMVbnsBqx5IrH2Jp8EJbJ2dycobJq4EC-wHKhMeHPuHG-DPgt8/s1600/summer+59.JPG" height="426" width="640" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">I think he could watch her for hours and not stop smiling. He worships his sister!</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi0pew5_Uji3eKhNDigt_d6ct3U6oWU-lmcsXDKGBMYtf70JwEL2TWcpM-EcQM_XF7SIH4cIDW2uA1gU_5rKQ3lCU9RLGS8rhogij70RJ2drgN4O6nE9e8tOtAvu6qXiZl-r7qEqQhVMyo/s1600/summer+61.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi0pew5_Uji3eKhNDigt_d6ct3U6oWU-lmcsXDKGBMYtf70JwEL2TWcpM-EcQM_XF7SIH4cIDW2uA1gU_5rKQ3lCU9RLGS8rhogij70RJ2drgN4O6nE9e8tOtAvu6qXiZl-r7qEqQhVMyo/s1600/summer+61.JPG" height="426" width="640" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Another indoor strategy to wear out little miss was Pump it Up which she thinks is awesome</td></tr>
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<tr><td class="tr-caption" style="text-align: center;">The best five days of our summer though was at Blackberry Farm, our whole family vacation in Tennessee</td></tr>
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<tr><td class="tr-caption" style="text-align: center;">For meals at the resort, the men had to wear suit jackets. What a treat to see my hubby all dressed up every night!! And Max loved the long dinners (Addie not as much!)</td></tr>
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<tr><td class="tr-caption" style="text-align: center;">One of the best moments of the summer was seeing Addie on her first horse ride. I don't think we have ever seen her so content and focused as she was then. Such a special thing to see her experience. </td></tr>
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<tr><td class="tr-caption" style="text-align: center;">I got a new camera for Christmas which I have loved and this swing was awesome for the novice photographer in me! I even got this photo made into a canvas for our home!</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjzpuJfnpG5MWcIXIrAdtJHRAMluFTWZp0mTq-hoFPi2mwxlSHdRNCHKldEGAKPvQISLwKFdBWy-AHKGGyKM4xOzG6k13H0lFCC1XYKwpQNoKfw6Yv_u4PbPNaBFISPlI9IMiJVGsd10rs/s1600/IMG_9095.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjzpuJfnpG5MWcIXIrAdtJHRAMluFTWZp0mTq-hoFPi2mwxlSHdRNCHKldEGAKPvQISLwKFdBWy-AHKGGyKM4xOzG6k13H0lFCC1XYKwpQNoKfw6Yv_u4PbPNaBFISPlI9IMiJVGsd10rs/s1600/IMG_9095.JPG" height="640" width="426" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">I think vacation officially agrees with Max!</td></tr>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhli2PaMHHbbAkmq9ogUORzNlScMu1gkHvjZCao-vw57qlKm4KvxSVoC76_xQkQphX9meLPQnuSByzI2EeULtFF2itPLb_Kb_VH3jGp_1hFv9s5fliR9BOfuau90zU6IJ5f1htW5_jBpLw/s1600/summer+82.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhli2PaMHHbbAkmq9ogUORzNlScMu1gkHvjZCao-vw57qlKm4KvxSVoC76_xQkQphX9meLPQnuSByzI2EeULtFF2itPLb_Kb_VH3jGp_1hFv9s5fliR9BOfuau90zU6IJ5f1htW5_jBpLw/s1600/summer+82.JPG" height="426" width="640" /></a></div>
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<tr><td class="tr-caption" style="text-align: center;">A treat of our week in Tennessee was a date day for Al and I when we got to go fly fishing. I was originally dubious but ended up having so much fun!</td></tr>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgo5Plzn-vRANOH1t9sA_V42LKabMqvixMGFcpx_TFUvFcZggK_a5onY_Zh4-M3qwhAurqNGh5cFDTRKSfBQG4c6muN-PVSuHMs5NiSed5e_EOxkF6kX6VA7898COlCpDxvBXS038GZB4U/s1600/summer+84.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgo5Plzn-vRANOH1t9sA_V42LKabMqvixMGFcpx_TFUvFcZggK_a5onY_Zh4-M3qwhAurqNGh5cFDTRKSfBQG4c6muN-PVSuHMs5NiSed5e_EOxkF6kX6VA7898COlCpDxvBXS038GZB4U/s1600/summer+84.JPG" height="426" width="640" /></a></div>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh5PQk7g0_i781a5UyAUA-I7Bqt0E9nvpRV788tXHj5lMzhrEbVU9FZoJW_wgGXVrws18LznI26_aPIJhCaz9gke7_DUlxYoHvnTcCq6LmvZnpJid0ZaOyMB-_yQ15ub6TXZMSf3XelNrE/s1600/hammock.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh5PQk7g0_i781a5UyAUA-I7Bqt0E9nvpRV788tXHj5lMzhrEbVU9FZoJW_wgGXVrws18LznI26_aPIJhCaz9gke7_DUlxYoHvnTcCq6LmvZnpJid0ZaOyMB-_yQ15ub6TXZMSf3XelNrE/s1600/hammock.JPG" height="500" width="640" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">In late July, Addie and I went and visited our extended family in Oregon. Had a great time hanging out with everyone and Addie particularly enjoyed Dale and Debra's hammock!</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhfHmv2wzDpvUaK0-rELZMegqZ8blf5ws5HN1PBlv8MEeeC46-HVCMYnVWQpOqWn8hGqQxKPk4AiyNpUwadZJIGiE8u2BVFIghQjYDzcT5V4aMGYV6D2dbiAosZ6qSIrkUYAavEzLRmMJM/s1600/with+karli.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhfHmv2wzDpvUaK0-rELZMegqZ8blf5ws5HN1PBlv8MEeeC46-HVCMYnVWQpOqWn8hGqQxKPk4AiyNpUwadZJIGiE8u2BVFIghQjYDzcT5V4aMGYV6D2dbiAosZ6qSIrkUYAavEzLRmMJM/s1600/with+karli.JPG" height="426" width="640" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">With cousin Karli</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjtW34fwent4iL2buNDSbNUNrux3SLndn4NlABegWmkHERynqKKMcCpgrMBuv45RmPXs5u9EBZlRb8ElKQY2vMwIJve7HurmROddYoFbHeGJ6tbuaZr5S8yeOpJOkyq7r9a-4APo3QTUXU/s1600/summer+101.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjtW34fwent4iL2buNDSbNUNrux3SLndn4NlABegWmkHERynqKKMcCpgrMBuv45RmPXs5u9EBZlRb8ElKQY2vMwIJve7HurmROddYoFbHeGJ6tbuaZr5S8yeOpJOkyq7r9a-4APo3QTUXU/s1600/summer+101.JPG" height="426" width="640" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">From Oregon, we met Nana in San Francisco, California for four days in one of the most special places in the world to us! At the carousel at Fisherman's Wharf</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgUpEDD5kOiuIQx3aiLI5YY44-vAnDbCsEzra52_fNIRbetoztgtjl0aQVQe2jyilyl64sv8F6GviNc0RNeKk3cm0VM1Gc2wPrh06I4MHyE4WrJhDPretL4vyPETBmbCZ2Y7CCpiaBsprc/s1600/summer+103.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgUpEDD5kOiuIQx3aiLI5YY44-vAnDbCsEzra52_fNIRbetoztgtjl0aQVQe2jyilyl64sv8F6GviNc0RNeKk3cm0VM1Gc2wPrh06I4MHyE4WrJhDPretL4vyPETBmbCZ2Y7CCpiaBsprc/s1600/summer+103.JPG" height="426" width="640" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Since it was just girls on this trip, we got to do lots of girly things like high tea and spending an hour in a conservatory of flowers!!</td></tr>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgQ1KMksbPbg7MBhbah1SmPI5lDCC-oNjropIwU6JyhL6tT1FrZmD68_D7LOPwrC7j83bWVjEaHTc5K_zPRnxw47LRWrVQXcLz93DKQ_XIy8ok8MLg6c8HUmpeGjs7NXmztBJ54_cTluko/s1600/summer+105.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgQ1KMksbPbg7MBhbah1SmPI5lDCC-oNjropIwU6JyhL6tT1FrZmD68_D7LOPwrC7j83bWVjEaHTc5K_zPRnxw47LRWrVQXcLz93DKQ_XIy8ok8MLg6c8HUmpeGjs7NXmztBJ54_cTluko/s1600/summer+105.JPG" height="426" width="640" /></a></div>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEipjWcM2uAYoKNuUuLjyW0UATQJmACCTC10rESkqj0t0CKIg4Vfe8GExhLoVHvC2x0Dujy-70cqJj-VKwcUEXHWS4AU2ARrD4_skVDI18jGauJPI_MZLStdcHgd4Nc0bNH14ASTL8ck9zM/s1600/summer+106.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEipjWcM2uAYoKNuUuLjyW0UATQJmACCTC10rESkqj0t0CKIg4Vfe8GExhLoVHvC2x0Dujy-70cqJj-VKwcUEXHWS4AU2ARrD4_skVDI18jGauJPI_MZLStdcHgd4Nc0bNH14ASTL8ck9zM/s1600/summer+106.JPG" height="426" width="640" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Since Addie got lugged around to lots of eating and shopping, we made sure to make time for lots of playgrounds to enjoy the cooler weather. Golden Gate Park's street slides were especially fun!</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi4VVDhOfbJ0vJiohkwTuIV8JZvu81RjL3IpPYICjUdt6-I7Yf4w-HPcTwfy-S5FDtcOxngC-XZSl8vCvKQ0stqwR1755_S2jFLE710Em4KZNZ4bNFmWlIDfN-ZQJBy2MsYLHtmuEySvDc/s1600/summer+108.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi4VVDhOfbJ0vJiohkwTuIV8JZvu81RjL3IpPYICjUdt6-I7Yf4w-HPcTwfy-S5FDtcOxngC-XZSl8vCvKQ0stqwR1755_S2jFLE710Em4KZNZ4bNFmWlIDfN-ZQJBy2MsYLHtmuEySvDc/s1600/summer+108.JPG" height="426" width="640" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">One of my favorite days from our summer there two years ago was when we took Addie to the Golden Gate Bridge 6 weeks after her transplant with my mom and Adam and Jenny! So it was very special to get to take her back there now. She has come a long way in two years!</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjul6fnvsx9DjttjI-Yne6WEna1J0GmpLf1S7aiujcA43aHBS6Vx0FwSIigWAcW7VSqTb69FpYBAaaXW1ecSMd2LBfHusAXmJJ8symF13GrrI7X9_Uai3nylvJFwldh3_GGhdVEac3z7q4/s1600/summer+111+(2).JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjul6fnvsx9DjttjI-Yne6WEna1J0GmpLf1S7aiujcA43aHBS6Vx0FwSIigWAcW7VSqTb69FpYBAaaXW1ecSMd2LBfHusAXmJJ8symF13GrrI7X9_Uai3nylvJFwldh3_GGhdVEac3z7q4/s1600/summer+111+(2).JPG" height="426" width="640" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Addie also got to go to her first American Girl store!! It's possible Nana and I enjoyed it more than Addie;)</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEigQXvygyz33N9BIu7ebkcqUUxpYt5DdHudcS86_4hYrBGeVCfOuAy9G3Ry1b63Mf8OZ_pW8TOqKqi8KEvWINbv-0AgNvPZAeSCrYeZg1UXmiz_buxCqiJueJYVLgSK-tYM_3eU8nzyK1g/s1600/summer+111.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEigQXvygyz33N9BIu7ebkcqUUxpYt5DdHudcS86_4hYrBGeVCfOuAy9G3Ry1b63Mf8OZ_pW8TOqKqi8KEvWINbv-0AgNvPZAeSCrYeZg1UXmiz_buxCqiJueJYVLgSK-tYM_3eU8nzyK1g/s1600/summer+111.JPG" height="426" width="640" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Gerri (left) was the transplant coordinator who totally pulled together all the details for both of their transplants and made it possible. Lynn (right) was the PA who took amazing care of post kids post transplant. I love both of these ladies dearly and loved getting to spend a little time with them again!</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgJv-RF6-HTcTtZEf9p_PJRVJxk4yLE4NpkdiBpbmJ8BU2f7NPnCO8-EJVarOJJp86lAtBHBQDTgdVOm60xOUC9fV5ey6yXo-aepMBwaZs8TiENxTbhfWsDqDi1NA70493i_p1B-JNNnvc/s1600/summer+112.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgJv-RF6-HTcTtZEf9p_PJRVJxk4yLE4NpkdiBpbmJ8BU2f7NPnCO8-EJVarOJJp86lAtBHBQDTgdVOm60xOUC9fV5ey6yXo-aepMBwaZs8TiENxTbhfWsDqDi1NA70493i_p1B-JNNnvc/s1600/summer+112.JPG" height="426" width="640" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">We got back from California to have a visitor already waiting for us!!! Our dearest friend Glen from Australia is travelling the world and made a special detour in Houston to spend a weekend with us!</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhu7yr6YoP9vHrszrcrULqYb9f9s1-7V8ddFPAnq_wWrhdgaJPmZbndXAY6kLue-FO9u2p_sYELjqOv-wPGR25DV-1KRLIoDHu3cch63J6tJUcDMjJ-NUnUV19ojydmuTanhSWl90kAGjg/s1600/summer+115.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhu7yr6YoP9vHrszrcrULqYb9f9s1-7V8ddFPAnq_wWrhdgaJPmZbndXAY6kLue-FO9u2p_sYELjqOv-wPGR25DV-1KRLIoDHu3cch63J6tJUcDMjJ-NUnUV19ojydmuTanhSWl90kAGjg/s1600/summer+115.JPG" height="426" width="640" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">We just could not get over how happy and healthy this little guy was all summer! He doesn't even look like the same kid we spent the last year with!</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjsaVSU4jHxA50C7yjsA384O0rnu97KmAIrPvpdM4Ccd84bbHEX2Qr0EWF9zFdS-WAZBegZgJ-ehl21S1DaLGZemas2A6U91skbHzp4xC7Iy4plDFUxc9sN6IaFxp1dIrd8LvVnGj5r7lQ/s1600/summer+116.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjsaVSU4jHxA50C7yjsA384O0rnu97KmAIrPvpdM4Ccd84bbHEX2Qr0EWF9zFdS-WAZBegZgJ-ehl21S1DaLGZemas2A6U91skbHzp4xC7Iy4plDFUxc9sN6IaFxp1dIrd8LvVnGj5r7lQ/s1600/summer+116.JPG" height="640" width="426" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Last adventure of the summer was a trip to Chicago for Addie and me!! Adam and Jenny gave us tickets for our Christmas present and we were so excited to see Chicago but mainly to spend a weekend with them! Here at Navy Pier!</td></tr>
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<tr><td class="tr-caption" style="text-align: center;">It's her favorite ride again!!! The dropping ride is clearly a national favorite!</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiPqKU5jxawyyZcqXv7PUWSkDVO34SYRNvFZv0XWkJSJHtGrva_tVVaBMCjtzIGNBgIkGUAxKZbx1R3s1thBjpcApuPe6GZnKq10mQWjNAW7pq9zY_NYnytT9xLez9WMuoYNls2F-t80EM/s1600/summer+122.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiPqKU5jxawyyZcqXv7PUWSkDVO34SYRNvFZv0XWkJSJHtGrva_tVVaBMCjtzIGNBgIkGUAxKZbx1R3s1thBjpcApuPe6GZnKq10mQWjNAW7pq9zY_NYnytT9xLez9WMuoYNls2F-t80EM/s1600/summer+122.JPG" height="426" width="640" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">The best part of our weekend in Chicago was watching Adam and Addie together. She often takes a while to warm up to people and clings to me a lot but she loved her time with her uncle. It was so sweet to see. </td></tr>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhBemrTRZ_st3p1EkREfYqgNwvC27SCX9XULP0OrNLnsrR19XiHRjgUA5uu8RBo7SpAgeMvi7uoF8PF5GYA23_ETYW4N6YJUMY1PHBB1S73ZZ3sdfx5yB4frVTq8vnEoSIkB5rbsjz2LLo/s1600/summer+124.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhBemrTRZ_st3p1EkREfYqgNwvC27SCX9XULP0OrNLnsrR19XiHRjgUA5uu8RBo7SpAgeMvi7uoF8PF5GYA23_ETYW4N6YJUMY1PHBB1S73ZZ3sdfx5yB4frVTq8vnEoSIkB5rbsjz2LLo/s1600/summer+124.JPG" height="426" width="640" /></a></div>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjhOvy_Bwl5T7ZoKvRLAhYM8zvbxiKNYC9Wv068blHEjjHumtd5Li9ze392XcQDCHf0gMLwvntGFUHkl73DarwFzgGpnn2pS54SdS-m2De8iexIJ-ILo4328oCylvXpNa5C4n_JDkmFnZc/s1600/summer+126.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjhOvy_Bwl5T7ZoKvRLAhYM8zvbxiKNYC9Wv068blHEjjHumtd5Li9ze392XcQDCHf0gMLwvntGFUHkl73DarwFzgGpnn2pS54SdS-m2De8iexIJ-ILo4328oCylvXpNa5C4n_JDkmFnZc/s1600/summer+126.JPG" height="426" width="640" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">No better way to see the sights of Chicago than on a ferris wheel!</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjXyga8SHpDsUl3pS6WIV42XZxn-Ztrz7YW4xrrYoKObUJ5GR6fbgLLiUTvry0DSrz3EVWV158ZVfgJyuYPnoOFkFlfDz1RKTUwjWaU5bPI8MKstnLvHxMNArdAfWpVtyeu6d6us36jATI/s1600/summer+128.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjXyga8SHpDsUl3pS6WIV42XZxn-Ztrz7YW4xrrYoKObUJ5GR6fbgLLiUTvry0DSrz3EVWV158ZVfgJyuYPnoOFkFlfDz1RKTUwjWaU5bPI8MKstnLvHxMNArdAfWpVtyeu6d6us36jATI/s1600/summer+128.JPG" height="426" width="640" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Adam told my Dad he had no idea there were so many carousels in Chicago!! Leave it to Addie and I to hunt them down!</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgrxSmuWZrMzEiPwEM2a7L8L7nUIM3tmkrscoLSsbXOZ5ZykMMPZBgFKB-EDGXRijhfLfZKgvSvqfygvcJOECbaSBEhy0CXtJ90gupbK0Fb3RKtjATOBgKoP-CVfHclB6b7xGtbj_OZ6yc/s1600/summer+133.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgrxSmuWZrMzEiPwEM2a7L8L7nUIM3tmkrscoLSsbXOZ5ZykMMPZBgFKB-EDGXRijhfLfZKgvSvqfygvcJOECbaSBEhy0CXtJ90gupbK0Fb3RKtjATOBgKoP-CVfHclB6b7xGtbj_OZ6yc/s1600/summer+133.JPG" height="426" width="640" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Day 2 in Chicago was the Lincoln Park Zoo</td></tr>
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<tr><td class="tr-caption" style="text-align: center;">It wouldn't be a good zoo trip without a Lion King reenactment...</td></tr>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgttwJjVUaFfCtMDYXZ91PnILFnoO_kbjjVwFRWoiBIPv-fsoZvfdGicsEHrzYzF4npZqnOCHo_o1ahONA3WJsSxP6So6LZU1IpYX6Smu0Z0gW8_LxRoeP92NK7_6R1gBJY6ERDQ_TqHW0/s1600/summer+143.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgttwJjVUaFfCtMDYXZ91PnILFnoO_kbjjVwFRWoiBIPv-fsoZvfdGicsEHrzYzF4npZqnOCHo_o1ahONA3WJsSxP6So6LZU1IpYX6Smu0Z0gW8_LxRoeP92NK7_6R1gBJY6ERDQ_TqHW0/s1600/summer+143.JPG" height="426" width="640" /></a></div>
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<tr><td class="tr-caption" style="text-align: center;">Coolest carousel of the summer goes to the Endangered Species Carousel at the Lincoln Park Zoo- educational and adorable!!</td></tr>
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<tr><td class="tr-caption" style="text-align: center;">Determined to jam us much into our weekend as possible, we went from the zoo to the beach!!</td></tr>
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<tr><td class="tr-caption" style="text-align: center;">On our last day, I wanted to go see The Bean statue at Millenium Park because I was convinced it looked like a giant kidney. My brother is a great host to accommodate my desire to visit the giant kidney!</td></tr>
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<tr><td class="tr-caption" style="text-align: center;">Millennium Park is also home to the most artistic splash pad I have ever seen! </td></tr>
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<tr><td class="tr-caption" style="text-align: center;">All good things must come to an end!!! Ended summer with preparations to get ready for a new school year! Posing in Mommy's classroom while she works!</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi6zr_JR4r8JOJcxVjR0GPPu2fL169VF4ODNgcraw87RV6ycoDT20LUZ8QjfF-TOMFEdcr6vEn4m9LiO8ndWsfNoGrzTO6kjrMJnFG_07IRVLLZ5qYhOedaV-cC9Dra9dY38x628eoHwaY/s1600/summer+166.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi6zr_JR4r8JOJcxVjR0GPPu2fL169VF4ODNgcraw87RV6ycoDT20LUZ8QjfF-TOMFEdcr6vEn4m9LiO8ndWsfNoGrzTO6kjrMJnFG_07IRVLLZ5qYhOedaV-cC9Dra9dY38x628eoHwaY/s1600/summer+166.JPG" height="640" width="426" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Max in his classroom on Meet the Teacher night</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhsGlXuzcAQG2K9pvW4i_AO7_AV9bjGsoxqfSFy4a-l06Osup6cOtngGcIzWUZUCDWcS98IlftB_PDEEB1UhfR0nHnUVFbPeHZnpuZIHFXLwBv_Pm82AXS9EubPHqmffqgbzAl1jB0pgOE/s1600/togeher.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhsGlXuzcAQG2K9pvW4i_AO7_AV9bjGsoxqfSFy4a-l06Osup6cOtngGcIzWUZUCDWcS98IlftB_PDEEB1UhfR0nHnUVFbPeHZnpuZIHFXLwBv_Pm82AXS9EubPHqmffqgbzAl1jB0pgOE/s1600/togeher.JPG" height="426" width="640" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">First Day of School Pictures!</td></tr>
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<br />Stephaniehttp://www.blogger.com/profile/18262244487289072606noreply@blogger.com0tag:blogger.com,1999:blog-3438191659852423887.post-40861361266239905912014-08-30T13:19:00.001-07:002014-08-30T13:19:25.850-07:00Chapter 23: Shouting I love youDuring the busy months of Addie recovering from her heart failure and getting trained to get them home and then adjusting to life in our Gameroom Hospital, it was easy not to worry about their hearing loss. In those days when Addie was so sick, I had prayed and promised that I would not mourn over hearing if she could survive that crisis. I was determined to stay true to that promise and in some respects, I can say I did. No tears were shed, no ruminating occurred, few moments of sadness invaded. But the reason I was able to do that was only because I simply did not think about it. When I started to think about it, I just blocked it out and focused on something else. We did not tell anyone other than very close friends so I never had to explain it or talk about it or deal with it in any tangible way. I think months of denial or ignoring the diagnosis were necessary to keep me from feeling the despair that had seemed so strong initially, but they did little to help me truly reach a point of acceptance. Once the babies were home and getting more settled, I knew the time to address their hearing loss was fast approaching. They had a repeat hearing test scheduled for early October and the date sat on my calendar with a big red circle around it. Yelling at me that my days of distraction and denial were coming to an end and I was going to have to think about, talk about and find a way to accept their hearing loss.<div>
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We were doing another hearing test in hope that the results would prove to be different. The babies seemed to hear some sounds and react more to noise than we would expect if they truly were profoundly deaf so we just could not seem to accept those results. The doctors offered us a small morsel of hope in telling us that some research suggests that the ABR brain wave hearing tests they had done are less accurate when they are done in an operating room. The equipment and heavy anesthesia could have made their hearing seem even worse than it was. Needless to say, this was the one thing they told me that we clung to most enthusiastically. Therefore when I thought about that day approaching in October, I prayed and prayed that it would tell me my kids could hear something. The doctors were very clear that we were not going to find out they had perfect hearing. The best we should hope for is that they had only moderate loss and could still hear very loud sounds. And so that is what I hoped for and prayed for, in those few moments when I actually allowed myself to think about it.</div>
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When the week had come and they were about to have their tests done, we were all anxious and I really felt like we needed people praying and supporting us. By now, Facebook had become my source of support and the likes and comments from our friends reading along and following lifted me up on hard days and encouraged me on the good ones. Sharing the details helped me feel less alone and I found comfort in letting people join us on this roller coaster we were living on. But I had not shared about their hearing loss on Facebook or in any of the group emails we had sent. I was initially too devastated and then far too busy trying not to think about it. And then when the week came and I did want to share, I could not figure out the words. How do I quickly say what we had learned, what was coming up, what we hoped for, how we felt and hurt and yet hoped. I actually started to type in a few posts but never could figure out how to say it. And I was never sure I wanted the 400 random people following me there to all read my deepest feelings sandwiched between a picture of food and a gripe about traffic. Facebook just did not seem like the appropriate place to share something so big and so sensitive for me. In the end, the solution I came up with was exactly what I needed both then and for the months ahead- I decided I would start a blog. I needed more space, more words, more structure if I was going to open up more and share my heart more. And I wanted a way for people who were interested to be able to come and read but that was not thrown at people who happened to know me ten years ago and do not particularly care. A blog that I could link to on Facebook seemed perfect. </div>
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And so in September of 2011, I found my voice. I started a blog with a simple introductory post and then within that week, I wrote one of the hardest things I had ever had to put words to. I shared that we believed Max and Addie had lost their hearing from life saving medications and that it hurt my hurt to imagine them living in a silent world. I asked people to pray that the upcoming test would show that they can hear. And then I pushed publish and I felt an immediate release and weight falling off my shoulders. Like now that I had told people, the pain didn't feel so personal and hidden. And knowing that it was something I could tell people about made it not seem as terrible as it once had. As the outpouring of love and support and assurances of prayer came flooding in, I knew that this blog was going to be a very important and special thing for me. </div>
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The morning after I published that post, we headed downtown for the hearing test. We were supposed to try and keep the babies awake and then drug them with Tylenol when we got there. We totally failed of course and Addie fell asleep in the car. She then woke up all alert when we got there and we had to give her the Tylenol and then wait over an hour while Al's dad patiently strolled her all up and down the hallways trying to get her back to sleep. Once we got them in a nice deep sleep, they attached electrodes to their heads and put ear pieces into their ears. They would deliver sounds to their ears and then wait and see if the auditory center of the brain would receive the message. Even though they were asleep, their brains should still fire up if they could hear sounds at that volume or frequency. Thankfully the audiologist doing the test was great and explained how it was all working and let me stay in the room and watch the screen and see the results in 'real time' if you will. It definitely helped ease my anxiety and I was so glad not to be sitting in another room just waiting on answers I wasn't sure that I wanted.</div>
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By the time the doctors finished up and were ready to talk to us, I was already smiling. Watching alongside, I knew they were hearing. Not all the sounds of course but I saw their little brains firing to sounds and that was all I needed to be sitting there with a huge smile just barely able to pay attention to everything they were telling me. When they told me the babies had moderate hearing loss in both ears, they probably had never seen someone react to that news with such elation. I kept saying 'so they can hear!!!' to which the doctors with a lot of 'yes, but' statements. Max and Addie could hear loud speech when there was little to no background noise, but a lot of normal conversation may be too quiet or jumbled for them to decipher. They talked to me about hearing aids and all the hard work that would be ahead. I did hear what they were saying but all I could focus on was that they can hear. I looked right at the doctor and said 'yeah but if I say it really loud and in a nice quiet environment, you are telling me that my kids can hear me say 'I love you'. The doctor couldn't help but smile at that point. Yes, they could. </div>
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We walked out of the hospital that afternoon with smiles shouting everything we could think of at our babies. And I went home and opened up my new blog and carefully described the speech banana and the scientific background behind what we learned. But mainly I shared my joy and told everyone that there would be a lot of shouting 'I love you' at our house tonight. I loved that because I had shared my fears and sadness over their loss, that I was now able to share my joy at what we had been given back! </div>
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I think about it a lot now, about why we ever had to go through being told they were deaf on that awful surgery day. There were moments when I felt like it was just unnecessary extra pain. Surely we would have been better off just knowing right away that it was moderate and not complete loss. But, over time, I have reached a point where I am glad for how it happened. Because if we had gone that day in October thinking they had perfect hearing and gotten the same news, we may have been crushed. We may have walked out defeated and always viewed their moderate loss with sadness. Instead, by thinking we had loss so much more, we saw it as gain. I count every word my kids can hear as a gift, more than we had once thought they would have. By being exposed to what could have been, we viewed a lesser loss instead as a gain. And since dealing with their hearing loss has been such a difficult journey and experience for me, I think that is exactly how I needed it to happen. I needed to reach a point where I appreciated a small amount of hearing. I needed to mourn and cry and then be primed to rejoice as I saw those brainwaves firing. I needed to know what they could have totally sacrificed so that there was genuine joy in my voice as I shouted I love you every night putting them to bed.</div>
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From the experience, I found gratitude in what is. And I found a voice for myself in my blog. I am not sure if I would have started it were it not for my struggle to explain their hearing loss. And over the difficult months ahead, my blog was therapy for me and an important way to keep the world updated during unforeseen crises.</div>
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Moderate hearing loss has proven to be a much bigger deal that we thought as we skipped out of the doctor that day. The doctor probably had some really great warnings and points in her 'yes but' comments that I ignored. Sometimes it is even hard to think about that day and the simple happiness we felt at those brainwaves without feeling somewhat foolish, not understanding what challenges would still lie ahead. But, even knowing all that we do know now, I am still grateful for the joy that day. It was what we needed. It was the hope that I craved and it was the appreciation and gratitude that I needed to have. It has gotten harder in a lot of ways but one thing remains the same. We still end every day shouting I love you. </div>
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Stephaniehttp://www.blogger.com/profile/18262244487289072606noreply@blogger.com1tag:blogger.com,1999:blog-3438191659852423887.post-27307316360366559092014-08-16T07:08:00.002-07:002014-08-16T07:08:50.323-07:00Chapter 22: Extreme Parenting- Life in our Gameroom HospitalFour days after Max came home from the hospital, Addie was able to join him. Her homecoming was far less dramatic than his and she was as calm and happy about coming home as the precious photos of her in a floral smocked dress and perfectly coordinated accessories would suggest. It was one of the most surreal feelings that Sunday afternoon once we were home and unpacked. We sat there on the couch with both babies and didn't quite know what to do with this blissful new freedom. It had been eight months since I had been home on a Sunday afternoon and all our experiences of holding our babies including a room full of company, alarms and at least nearby flurries of activity. Now our home seemed so refreshingly but eerily quiet and the fact that these precious babies were at last together in it felt both extremely exciting and somewhat unnerving. We sat and soaked it up, smiling, feeling grateful and triumphant. For those few minutes, we savored the milestone.<br />
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And then we got up off the couch and we carefully mixed up special formula for babies with kidney issues. We spent half an hour cajoling to get them to begrudingly drink less than an ounce before we then set up their feeding pumps and primed their food and made sure they were fed. We lined up medications and took great care in ensuring that each baby got their correct dose at their correct time. We designed systems for how we can do all of that without error. Then we went upstairs to what was once a game room but had now been coverted to our little home hospital. Two cribs and two dialysis machines and two IV poles dominated the room and made the lingering couch and television look suddenly out of place. We put masks and gloves on and helped each other hold down a baby one at a time while we changed the dressing around their catheter sight, carefully cleaning it and applying antibiotic cream. We then temporarily removed the masks and gloves and stripped each baby down to weigh them. We recorded the weight on our trusty chart and then took each one's blood pressure. With that information, we then determined how much fluid we thought needed to be pulled with dialysis and made decisions about how to set up their machines. Since we were still so brand new at doing this, we then exchanged texts with our wonderful dialysis nurse and confirmed we had made the best decisions. Then the gloves and masks went back on and we meticulously set up their dialysis machines, calibrating them to their needs that day. Then we lathered everything in iodine and cautiously connected each baby to their machine. A lot of buttons were pushed, sweat was collecting under our masks and finally they were running on dialysis. They were now going to spend the next 17 hours within 6 feet of their machines in the gameroom hospital. We sat there with them, holding them, playing with them, watching the machines carefully, addressing any beeps or issues that would occur.<br />
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And once they were all sleeping, I left Al upstairs to sleep next to them, and snuck down and get some sleep while always listening for beeps and worrying about how they were doing. My alarm went go off at 5am and I got dressed and left for my teaching job. The Monday after Addie came home was my first day with a brand new set of students so it was enthusiastic introductions, repetitive rule emphasizing and high energy and activity. As soon as the students left for the day, I ran to my car and hurry home to my second job waiting for me. Hug and kiss the babies. Soak up the novelty of them being home. Laugh and take great joy in everything they did. And then load them upstairs, get out the masks and gloves and start again...<br />
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That is how the first 24 hours of them being home went and it is how every day was for a while. A couple of weeks after they came home my in laws arrived and helped with staying up at night and listening for the machines. My parents would come over and help play with and entertain the babies. But, Al and I had decided we would be the only ones to do the actual medical care so it continued to follow the same basic schedule. My teaching job would many days feel like my easy relaxing job and this new home routine felt like the most wonderful, rewarding, important and incredibly difficult job I had ever done.<br />
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By the time that first week of school was done, I had never known tired like I felt then! I remember missing the NICU. I loved having my babies close and I loved being the one to take care of them but the reality had really sunk in that we did not bring healthy babies home- we brought home sick babies needing a hospital level of care. It was an awesome privilege that we could do that at home. And it was incredibly difficult. And I did miss my beloved nurse friends who took care of all the medical details and listened to me ramble about my day while I just held my babies all afternoon. I missed having like 5 doctors check on them every afternoon and knowing it was never really up to me to determine if they were doing okay or not. I missed my village that I had come to value so deeply. It was a big adjustment.<br />
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And then Saturday morning came. And I woke up in my bed instead of the inflatable hospital mattress at the Ronald McDonald house. And I went upstairs and laid down on the floor with my sweet hooked up babies and cuddled with them for a couple of hours. In my pajamas, in my own house. And it felt amazing. When dialysis was done and they had 6 or so hours of freedom, we got them all dressed up and loaded them into their precious personalized car seats and took them for their first ever trip to their grandparents house. I took hundreds of pictures of the beautiful moments of them being there. Eight months old and they were getting to go outside for the first time, getting to see new things for the first time, getting to go to their grandparents house and play with all the toys accumulating there for them. Eight months of life and my babies were finally living. And that day I didn't miss the NICU. I didn't care that I was tired and worn out. I didn't care that we would have to go home and head up to our gameroom hospital and pretend to be nurses. All I cared about was that my children were enjoying life and I was getting to watch them experience it and I felt so blessed.<br />
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The next couple of months adjusting to having the babies home would follow this same trend. It was incredibly hard work and I would feel insanely exhausted. I would miss my NICU friends and the reassurances of living in the hospital. But I would savor each new experience and soak up the joy and know each night when I went to bed that Max and Addie were exactly where they were meant to be.<br />
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When I think back on those months now, I admit I wonder myself how we managed to do it. We would daily have someone express something along the lines of 'how do you do it' to which we would answer with anything from a shrug to a full blown explanation of how blessed we are to take care of these children. But the truth of the matter is that we did it back then because they are our babies. And that's what you do for your babies. Whatever it takes. Like the old story of the mother who found she could bench press a car to save her small child, we surprise ourselves with what we can do for our children. With what we consider it a joy to do. And in that respect, our early days with our babies home were no different than any new parents' experience. New parents do not suddenly dislike sleep and become fascinated with poop. Rather they wake up all the time and go through piles of diapers because they love the new baby in their home. Parenting is exhausting and it's challenging and it is selfless. And it a joy and it is most rewarding sacrifice you can make. And that is exactly what those days were like for me. Rushing home from work to sweat under my mask and try and help run our gameroom hospital- it was parenthood in the extreme: joyful draining sacrificial love. Stephaniehttp://www.blogger.com/profile/18262244487289072606noreply@blogger.com0tag:blogger.com,1999:blog-3438191659852423887.post-21677571922407596712014-08-04T19:14:00.002-07:002014-08-04T20:23:39.855-07:00Chapter 21: The Curse of Vanity (Max's Homecoming)After eight months of living up at the hospital, you would assume I had long abandoned my attachment to 'how I imagined things' and obsessions with picture perfect moments. And yet, somehow I remained irritatingly sentimental about certain things and stubbornly determined to achieve and celebrate the moments I had long dreamed of. I am sure it was, at times, a great strength but there were moments when my need to preserve a semblance of a fantasy actually proved detrimental. It ended up being a long journey to reach the point of seeing the beauty in things exactly as they are instead of trying to mold them into what I had previously believed would be beautiful. It is a lesson I learned through time and through some mistakes. One of which happened on the day that Max finally came home from the NICU.<br />
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Nearly as soon as we found out we were having a boy and a girl, we had coming home outfits selected. Sweet tiny matching pink and blue soft onesies with tiny hats and precious stitching. Their car seats were covered in pink and blue minky dot covers with their names embroidered on them in matching green thread. I had imagined the photos of us standing at our front door, each cradling a tiny love smiling and confident in this new adventure. By the time we were getting our dialysis training and rehearsing CPR on cabbage patch dolls, it was pretty clear the picture was going to look very different to that. We realized Max would be beating Addie home by a few days and of course, he would be a big nearly 20 lb eight month old and not the itty bitty boy who had long outgrown his blue onesie with the matching hat. But, while it wasn't going to be exactly what I had envisioned, I had decided it would just be all the more special and monumental and amazing because it had been so long anticipated. The photos may look different but I was sure they would be just as significant and beautiful. So, as the day was arriving I was picturing all the photo ops of Max in the car for the first time, Max by the front door, Max on our couch, Max in his crib that had been patiently waiting for him for close to a year. Max finally home all smiley and healthy.<br />
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There was one discrepancy between these images and our current reality- that pesky feeding tube. Having only surrendered to the feeding tube three weeks ago, I still hated it. It still looked like a symbol of sickness, a contradiction to healthiness plastered there on his face. I felt it took away from the beautiful images of a long-awaited homecoming. I was wrong to think that, I see that now. But at the time, it felt all too essential to me that the feeding tube not be down his nose for his homecoming. And the tubes did not have to be in 24 hours a day. They would fall out, they would periodically need replacing. The babies could go hours without them as long as they did not need any meds or a lot of food. So I convinced Al that we should take the tube out, give his face a break, bring him home and take all my pictures to capture the moment of his healthy return and then replace it and stick it back down an hour or so later. Al and I had both placed the tubes before so it could be done. Al didn't see the same urgency to banish the tube from photos that I did but he agreed because he knew this homecoming moment was so important to me. <br />
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So we loaded up all of Max's belongings that had been living up at the hospital with him. He was dressed in a soft white sailor themed shorts outfit. Al and I were dressed up in our favorite clothes for the occasion. We embraced our favorite nurse as she tearfully kissed Max goodbye. I clicked away as we placed him in his blue minky dot carseat. We loaded the truck with all his medical equipment, dialysis machine, oxygen tank and carefully closed it all up, hiding away the evidence that this was still not your typical homecoming. We drove home smiling and confident. We had done it, we had graduated the NICU and now we would have Max home all to ourselves to care for and enjoy and it would all be so fabulous. We arrived home. Click. Stood by the door. Click. Placed Max on the couch. Click. Sat on the couch with Max. Click. Placed Max in his bed. Click. Introduced Max to the dog. Click. Over a hundred clicks later and we decided it was probably time to put a feeding tube back down and give Max some nourishment. Equally experienced at the task, it was decided that I would have the dreadful job of sticking the thin plastic straw down his nose as I was the one who had pleaded the case of removing it.<br />
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So just like I had done before, I pushed the tube down Max's nose. It scared and infuriated him. Maybe because he was somewhere new? Maybe because he felt queasy from the car trip? Maybe I was just really bad at it? Maybe it just really annoyed him this time... but he got furious and goes to scream and completely shuts his airway around the tube. A Max Attack has begun. I'm unable to push it further so instead pull it out. Max is still not breathing. Max is no longer red and angry but purple and terrifying. I am freaking out because this time it isn't happening in a safe hospital but in our living room. Al starts panicking trying to figure out where we had left his oxygen tank and ambu bag. He is running to the trunk to retrieve it from its pile of urgent medical equipment that had remained hidden in the trunk admist all the clicking. Al comes running in with the ambu bag and by now Max has lost his color and is pale and still. It was probably barely more than a minute but felt like an eternity. I start bagging Max. Nothing. No gasp of breath, no return of color. Just sweat pouring off of me while Max remains white and still. I am not crying but shrill and stressed as I throw the bag over the Al. He starts pumping while I tell my mom who was there with us that we were going to have to call 911. I just keep thinking, this cannot be happening. We cannot be losing Max the day we bring him home. This cannot be happening. This is my fault. He was safer in the hospital. This cannot be happening. He has to be okay. This cannot be happening. During my panic and during Al's persistent pumping on the ambu bag, my mom has retrieved the phone and is ready to dial 911 when we finally hear the gasp. Max sucking in air having his throat finally opened up. A huge sigh of relief from the three of us adults as we see the pink coloring return to his face as he breathes in the oxygen pouring from the tank into his lungs. Within a couple of minutes, Max is rosy, peaceful and fairly worn out from the experience. <br />
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We all look at each other. There is no need for anyone to say 'I told you so' as it was very clear that the 'healthy' photos I had successfully captured had come at too high of a cost. There was no desire to talk about how scared we were, the thoughts we had entertained. We all knew we had been thinking the same things. After a few minutes of quietly decompressing, Al finally asks my mom to pray for us that God would enable us to take care of Max. And so we do. My mom prays out loud as we stand over Max and let the reality soak in. This day while exciting and momentous and beautiful was not merely the end of a NICU journey but more significantly the beginning of a new stage where Al and I were solely responsible for this precious boy. Where we were entrusted to keep him alive, when we all knew that would be no easy feat. It was a celebration to have that privilege but it was more importantly a huge responsibility. As we stood there praying, we realized how much we needed prayer and support as we started this stage. It was a very necessary sobering experience to focus not on capturing a pretty picture but on living up to a new calling. We said Amen and we promised ourselves and each other that ensuring Max's safety would be our first priority from that moment forward and that we would not forget to keep praying for God to enable us to take care of him.<br />
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While I did feel guilty that is was my choice to remove the feeding tube that led to the close call, I did not beat myself up over it. It had been an innocent mistake. I had never imagined how stressful putting it back in would have been. I would never have done it if so. And although we would have to remove the tube for replacement every week or two and I would still take advantage of those moments to capture family photos, I had certainly learned from the experience that a tube on his face was a far prettier sight than the haunting image of what had happened that day. I won't go so far as to say I completely learned 'my lesson' that day because letting go of what I thought things should look like was a longer process, but I did grow and change as a mom that day. I let go a little more of my vision of what was meant to be, I realized a little more that 'looking healthy' is far less important than it seemed and I learned a lot about remembering my priorities in big moments. From my mistake, my lapse in judgement, my focus on appearances rather than realities, we grew closer to the parents we would need to be. And that is the essence of real stories, of real moms. Our defining moments, our greater triumphs, and our most valuable stories sometimes come from some of our more regrettable mistakes.<br />
<br />Stephaniehttp://www.blogger.com/profile/18262244487289072606noreply@blogger.com0tag:blogger.com,1999:blog-3438191659852423887.post-49292211569404227472014-07-25T13:37:00.000-07:002014-07-25T13:37:08.591-07:00Chapter 20: Leaving my Village At the end of August, once Addie's heart was behaving and I had waved my white flag of surrender to the feeding tubes, I looked up and suddenly, finally could see it. The light. At the end of the winding, twisting, very long metaphorical tunnel we had been wading our way through. For so long, we could not even see a glimmer through the turns ahead. But, finally, the end of the pathway was illuminated and while we could see a few hurdles ahead, it was an amazing relief to realize an end, to this stage at least, was finally visible.<br />
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Our eagerness to bid farewell to the NICU had nothing to do with not enjoying our time there. In fact, by the point where the light was perceivable, our NICU days were in fact downright enjoyable. The babies were comparatively healthy, they were smiling and social and enjoying the crowds of doctors and nurses who came by frequently to visit with the famous giant NICU babies. Each baby had their own nurse because of the dialysis and we knew all the nurses and had selected a handful of 'primary nurses' for both days and nights. These girls were more than amazing nurses, they were my friends now. I was on summer break so I had no need to leave the hospital so I spent every night in a Ronald McDonald room in the hospital that they had given up making me move in and out of. I had my own space and my own friends and constant support and help. I thought about regions around the world where whole villages raised their babies together, the children surrounded by adults who knew and loved them. I had embraced our NICU as my own village, Max and Addie were surrounded by care takers who loved them and the days of caring for them were passed with laughter and a feeling of community. In many ways, the idea of leaving my village to then care for all their needs on our own at home was frightening. However, I also knew it was time. By late July, I had only a couple of weeks left to enjoy my days of cheerful village time before I would have to go back to work and I had decided early on I could not face another year of working with them over an hour away in the hospital and the long afternoon and evening commutes to see them. I needed by babies home when I went back to work. I had decided months ago that I would make that my mission. Plus, for all the companionship of my village, it was also a village where other babies became very sick and even died, a village where my sweet babies had to get daily lab draws and where they were not free to go outside and experience all the normal simple things like parks and car rides and the feel of raindrops that 6 month olds are meant to be experiencing. I loved my village in many ways and yet I also knew it was time to leave and explore the big world out there. So despite how comfortable and even enjoyable my days were, I did truly rejoice and feel palpable excitement at seeing the light get stronger by the day in late July.<br />
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It is sometimes baffling to me when I hear about a 'normal' or typical baby being born and then going home like 48 hours later. Who trained those parents? When are they going to get weeks of detailed instruction? Did they pass their 'care by parent' trial parenting test? One could even argue there might be an overall benefit if every parent did have to go through the training and proving that we did. But for healthy kids, they send them home and trust the parents will figure it out between instinct and trial and error. When instead you have two kids who are going home requiring 18 hours of dialysis therapy, more than a dozen medications each and one of whom has an unfortunate tendency to hold his breath and require help to stay alive... well, it makes sense that they were not about to just send us home to figure it out on our own!<br />
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While they were in the hospital they had nurses who would initially manually fill them with dialysis water and manually turn the clamps at set intervals. But, in order to come home, they needed to be successfully using an autocycler machine that would perform this role. We had been hearing about this magical autocycler for so long that in my mind it was going to be gold plated and covered in rhinestones and take our breath away with its glorious powers and presence! Instead it looked like a large 1980s printer- completely mundane in appearance but very important in function. Al and I would have to set up the cycler each day, choosing the correct type of dialysis fluid and programming the correct settings and entering their weights and blood pressures. We would need to wear masks and gloves and connect the babies to their machine. We would literally 'plug' them in. They had a 6 foot leash and could move around within those 6 feet but no more.Then, in theory, the machine would fill and drain water every hour for the next 18 hours without us doing anything. If everything went smoothly, the machine would proudly announce its completion the next day and we would disconnect and woohoo, blood is clean, excess water is gone and the babies can live life to the fullest for 6 hours until it all started once again. If things did not go as smoothly, the machine would instead angrily alarm and yell at us and we would have to figure out what was wrong and try and fix it. It was clear early on that when it worked well, this machine was truly wonderful and that when it did not work well, this same machine could be maddening.<br />
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Before they would send us home with the temperamental machine, they wanted it to be successfully working in the hospital and have us go through a week long training. As all that was coming together, our nurses were busy training us on their medications, we were taking CPR courses and being encouraged to take over bagging Max during one of his now less frequent breath holding spells. Max started on his autocycler a couple of weeks before Addie because her heart failure drama had slowed her down. So by late July Max had completed two successful weeks on his machine and Addie was starting on hers. We were giving most of their meds and feeling confident with the details of their care. We were ready for our training and to start packing! Interestingly, we had to actually be out of the NICU and have the babies in a standard pediatric room where we would sleep in the room with them during the training week. Already having established himself as a dialysis super star, Max got the honor of leaving the NICU and moving up into big kid world! We actually requested Addie get to stay in the NICU until she went home since we knew and loved all her nurses and they would be there at her bedside. If we moved them both, they would be in separate rooms and we would need to both stay every night and constantly be leaving one of them alone during training. So Addie got to stay and soak up another couple of weeks in her village while we focused on getting trained with Max.<br />
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We were blessed with a great dialysis nurse. Julie would spend the week training us and did so with a patience and a sense of humor that ensured that we both learned a lot and managed to have some fun during that week. Me, Al and my mom were crammed into a small room with Julie discussing all aspects of running dialysis while my mom's best friend Becky spent the week with Max in his new room entertaining him and keeping him company. When training ended in the afternoon, Al or I would take over in Max's room providing all of his care and practicising all our new skills. We would all take turns to go back down to the NICU and spend time with little miss who was happy and seemingly oblivious to her brother's departure. It was a busy crazy week with all hands on board, all of us very busy, but very excited.<br />
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Which is not to say there were not moments where all this change was not stressful. Having long been in a NICU surrounded by nurses who knew and understood him, Max's color changing spells had lost most of their scare factor. In this new environment though, he made it only a day before a nurse called a code during his spell and the entire room was flooded with doctors and panic. We were in charge of learning how to drop feeding tubes down Max's nose ourselves and I cried having to stick the tube down his nose, and failed to do so many times, escalating my own anxiety and his discontentment, before I succeeded. Additionally an interesting conversation came up during this week of otherwise exciting advancements... for the first time ever, someone mentioned the words Cerebral Palsy in relation to Max.<br />
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When you live in a room with 2 pound babies, it's easy to lose focus on developmental milestones. When you are worrying day in and day out about your babies survival, it's easy to lose focus on developmental milestones. When you are watching labs and fluid levels and making important daily decisions and changes, it's easy to lose focus on developmental milestones. And when your child has been so sick and living in such an atypical environment for months, it is hard to even know what developmental milestones you should be focusing on should you remember to think about it. So, while it may seem strange that we were relatively unconcerned that Max was not holding his head up or rolling at nearly 8 months old, it did not seem that anyone around us was overly concerned either. So we just never really worried about it. There had been some warning signs. His respiratory issues and tight muscle tone had initially alerted our attention and even earned him a visit from the neurology team. They had an MRI completed when he was about 6 weeks old and ruled the results to be unimpressive- no obvious issues and so neurology 'released' him and we never heard anything about a neurological problem again. Then around 3 months Addie was confidently holding her head up and working on rolling and Max was not. By 6 months, Addie was rolling around her bed and sitting in a 'tripod' position and Max was still not holding his head up. His delay was noticeable when he was constantly next to his sister but given how many issues he had in those first few months, we were aware but unconcerned. I think we all just kept hoping and believing he would catch up and no one wanted to even entertain the idea that something else could be wrong for these sweet babies that had already been through so much.<br />
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One day training week Max's physical therapist came to visit him. She had been seeing him for months now and he enjoyed working with her and she was always great about being accommodating and working around when he was awake and feeling well. This day she was working with him as always and I was watching and for some reason I casually asked if she thought he would catch up once he was home. I was really asking the question in hopes of getting reassurance, rather than actually seeking a fleshed out answer. Nicole paused and made a non-committal response. She continued on and said someone like Max is harder to predict because of his neurological issues. I stopped her and pointed out that Max did not have any known neurological issues. She was really surprised by this. Somehow in her months working with him, she had inferred he must have some neurological issues, even though in reality neurology was not following him. She suggested we may want to actually get neurology to see him and look into his atypical muscle tone. He had low muscle tone in his core but tight muscle tone in his limbs. She threw the term 'cerebral palsy' out as one possible diagnosis that would present with this tone pattern. She emphasized that she was not making a diagnosis and also reassured me that some children who have cerebral palsy have no lasting effects aside from maybe messy handwriting. I appreciated her input and agreed it probably needed to be looked into but that I was sure everything would be fine.<br />
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And then that night I googled Cerebral Palsy. And I read blogs. Some hopeful blogs, one devastating blog about a family who lost their child. I read wikipedia descriptions. I read for hours. I saw symptoms that reminded me of Max. I looked for symptoms that would disprove that Max could fall into this category. I searched for the happiest stories I could find. And then I made a decision to stop reading and stop thinking about it and go back to our happy week of homecoming excitement. Al and I talked and agreed we did not want to involve neurology at this point and delay Max coming home. That would have to come later if he still was delayed. But surely he would not be. Surely he would catch up at home and we this issue would all just go away. We chose consciously to ignore the signs. I think at that point it was all we knew how to do. Everything we had been through was so overwhelming and we were trying to learn how to administer dialysis at home and we were so close to this new hope. The only thing that seemed feasible then was to run as fast as we could towards the light in front of us and pray and believe the rest would fall into place. And so we did. We did not talk again that week about Max's development. It would be months before we would say the words cerebral palsy again. The seed stayed planted in my mind, slowly preparing me for what was to come. Slowly making room in my heart and mind and slowly waiting for the day when that would be our focus. I am grateful the seed was growing and preparing me but I am also grateful that we did choose to embrace the joy that week and that we gave all our energy and enthusiasm to getting our family home. <br />
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We finished dialysis training Friday afternoon and we brought Max home the following Wednesday. By that week, I was up at school getting ready for the next year and in staff development as the school year was about to start. Four days after Max came home, we brought Addie home on a Sunday afternoon. And Monday morning I woke up and taught my first day of the school year. We just barely made it but my babies were in my house by the start of the new school year, just as I had planned and hoped and dreamed they would be. There would be days I would miss our village terribly and we figured out very early on what a huge responsibility keeping these babies safe would be but it was an important step for next phase for our family and we were thrilled that we were finally reaching that stage.<br />
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Of course, no milestone would come without its own drama so the day of Max's homecoming is its own tale, it's own scare and it's own miracle... and therefore it's own story. Stephaniehttp://www.blogger.com/profile/18262244487289072606noreply@blogger.com0tag:blogger.com,1999:blog-3438191659852423887.post-81758202118420222442014-07-19T13:54:00.001-07:002014-07-19T13:54:31.576-07:00Chapter 19: Losing their AppetitesSometimes I meet people for whom food is just not a big deal. They eat to feel full, they give little thought to planning meals and they approach shopping lists with a pragmatism and frugality that is admirable, if not completely confusing to me. We are not those people. We are food people. Not fat people as we force restraint and refuse to completely indulge our food fantasies. But we love food. We are the family that starts talking about the next meal soon after finishing the last one. A good vacation is one with delicious novelty food. Holiday traditions all include beloved recipes. And so when we imagined having a family, we imagined all the food traditions we would establish with our kids. They would bake cookies with Nana, go for Saturday morning doughnut trips with Dad, and develop a taste for Australian vegemite and American peanut butter. It has therefore been a big adjustment instead having children that do not eat. When we tell people that the kids do not eat they look at me confused. Like surely you don't mean they never eat. You must been they are picky and only eat chicken nuggets and Mac and Cheese. Oh if only! Nope, they don't eat anything. But once upon a time they did. Dialysis, though, would change that.<br />
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As small nearly four pound preemies, Max and Addie could not yet eat, as was to be expected, so they had small NG tubes that went through their nose and into their stomachs to deliver food. The feeding tubes were so expected that they did not really bother me but I was very determined to get rid of them. Addie was healthiest so my energy was quickly poured into trying to get her to eat. I breastfed her for a couple of weeks until the number of supplements we needed to add to their feeds and their other medical issues made bottle feeding more sensible. So I continued to pump milk for them for months, pour tons of medications into it and devote time to trying to get them to drink the milk. And it was never easy. They were always reluctant feeders, but with perseverance Addie was drinking all her bottles, which included all of her medications, by early February, well before her due date, and we able to pull out her feeding tube for good. I rejoiced in being able to take pictures of her face, without the tape and tubes that seemed to take up her whole face previously. </div>
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Max was an even greater challenge because he seemed to have a weak swallow. We started working on feeding with him later due to his lung bleed slowing everything down initially. Then when we started, it seemed to go badly with him acting distressed and disgusted by the milk. More concerning, the doctors were afraid he was choking on the milk and it could be getting into his lungs. After a swallow study, it was decided he could only drink milk if we had thickened it. So in addition to adding all of his meds to his milk, we now poured powder into it. It looked like thick sludge and smelled like iron and antibiotic. I was, and remain, completely shocked he actually drank it. But slowly but surely he mastered drinking his sludge and his tube too was pulled. Two babies with tube less faces!!! So many pictures!!! They looked healthy to me without the tubes and at that point, it seemed so important to me that my sick kids still appeared healthy. This was not to say they had become amazing eaters. On the contrary, each meal seemed to be a challenge and the nurses, therapists and all of us worked very hard to get those bottles emptied. I spent hours thinking about how they were eating, worrying about if they were gaining weight and buying different bottles with varied nipples. And because it was a challenge, I found myself filled with pride that they did eat and counted each ounce they gained as a personal accomplishment. </div>
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As soon as we started talking about dialysis though, the warnings started. Kids on dialysis do not tend to eat well. They usually need feeding tubes. Their bellies are so full of the sugar water that they feel full all the time. The electrolyte swings remove their appetite and taste for food. They tend to lose any desire to eat. There was even a discussion about whether we wanted to go ahead and put a g tube, a permanent feeding tube surgically placed into the stomach, in before they started dialysis. Although these discussions were perfectly reasonable and I recognized that they were trying to prepare me, I was nonetheless convinced that this would not happen to Max and Addie. They were going to eat even on dialysis. They had been eating on their own for months now and I knew how to get them to eat even when it was hard. So I told the doctors I wasn't worried because MY kids would eat. The whole dialysis causing them to lose their appetite and not eat was never going to happen to them because I was the master baby feeder. It was a combination of pride (which does, of course, always come before the fall) and stubbornness and innocent optimism. </div>
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Once I had declared that my babies would continue to eat and that we would not be returning to feeding tubes, I then had made it my personal mission to ensure that ended up being the case. Those initial days on dialysis, I was there every feed, using all my best tricks to get the bottles down. The bottles had unfortunately become even more disgusting as we now had to add a lot of sodium into their food due to the dialysis. The milk now stank of salty iron and medicine and I actually felt guilty feeding it to them. But I continued to because we would not need feeding tubes. Other than when Addie was so sick, we did manage to get them to drink their bottles initially and I was so excited, I pretty much wore a permanent smug supermom smile. However, with each day the challenge became harder. By three weeks after their surgery it was taking so long to get their bottles done that it would nearly be time for the next one by the time they finished. I was essentially feeding one of them around the clock. It was emotionally exhausting because I felt so anxious about each bottle being finished and I was trying to still seem calm and relaxed to them. Feeding had become a huge ordeal but they were still eating so while my smug smile had vanished, I was still convinced it was doable and that I could avoid the feeding tubes.</div>
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Another week later and they were not drinking their milk well at all. The occupational therapist was doing everything she could to help them, even facing them in the corner so they could not be distracted while rocking them and using every fancy trick they could think of. It was not working. Bottles were going unfinished. An hour would be spent for them to get a couple of sips down. Everyone was frustrated and the daily weight checks were getting more concerning as they failed to gain weight. I knew I was losing this battle so eventually a full month after they started dialysis, I had no choice but to let the feeding tubes come back. Tiny cheeks covered in tape to hold a tube down. Little button noses with a tube wedged into it. Sick babies actually looking sick. It made me very sad. I hated the feeding tubes. But I also knew they had to get enough food and get all their medicines in order to get well enough to come home. So I accepted my defeat but not happily. It had been a mistake to insist that I could make them eat because it set me up to see their not eating as a personal failure. It made something that should not have been particularly emotional in comparison to all we had been through, seem like a defeating blow. </div>
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I did not give up even after the feeding tubes came back. We continued for months to offer bottles, try baby foods and experiment with new ideas. None of which proved successful. But we continued to try. And I continued to hate the nose feeding tubes with a passion. In fact, I would not really feel acceptance of their tube feeding until we finally did get g tubes in their stomachs and the reminder on their face went away. By that point, I had accepted it, even if I still could not totally understand it.</div>
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At three and a half, Max and Addie both still rely on their feeding tubes for their nutrition. And I am still coming up with new experimental ideas and they are still not very successful. I will offer Addie her own bag of donut holes and she will take it like a treasure and excitedly take out each little hole. She will play with them, squish them, maybe feed one to Elmo, and then return them to their small white bag uneaten. And I always look at her completely stumped and intrigued. We are a family of food lovers. How do my kids not love food? How can they make a disgusted face at ice cream? It is hard to truly understand. But, I do accept that it is neither my fault nor theirs. It is just a side effect of dialysis and everything they have had to go through. It isn't a defeat, it's just a cost of a victory. Dialysis saved their lives, it just killed their appetites in the meantime. And when I look at it that way, the fact that they get their food through a tube rather than in their mouth really does not seem like a big deal at all. Plus, it just means there is more food left for the rest of us food lovers...</div>
Stephaniehttp://www.blogger.com/profile/18262244487289072606noreply@blogger.com0tag:blogger.com,1999:blog-3438191659852423887.post-27186203691545892392014-07-05T11:09:00.002-07:002014-07-05T11:15:11.264-07:00Chapter 18: The Tale of Two Hearts- Part 2 This may surprise you but I believe that going through incredible stress and medical crises actually turns you into an eternal optimist. You may assume the opposite- that by this time I was expecting the next bad thing but instead, I seemed to will myself to always assume that the most positive outcome possible would in fact happen for us. This was in no way based on experience but rather an irrational but necessary survival mechanism. When you hear from doctors all the bad things that can happen, you just cannot cope as a pessimist. You will never sleep again. The only way to get up each morning is to cling to that ever patient optimistic side of yourself and assume that today is the day that things will drastically and permanently improve.<br />
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Therefore while I arguably never should have assumed that Addie's heart had fully recovered two days after her emergency surgery, I needed to believe that the worst was over and I am grateful for my two days of smiles and relief. The nurses were relaxed and rejoicing with us and we dressed the babies up and took pictures of them, Addie all pink from a recent blood transfusion and Max all smug from his week of being the better behaved child. My aunts from Oregon had come to visit and I was so relieved that things were better and cheerfully took an evening off from the hospital for the first time in a week to have dinner with them. And I am glad I had that day of happiness with them because everything was going to change when I went in the next day.<br />
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Sunday morning and I head in early excited for another day of recovery and Addie smiles. Immediately, though when I get there, I know something is wrong. Addie is not fussing at this point and her coloring is still pink but the grunting is back. Earlier in the morning, she is grunting after some but not all breaths. As the hours pass though, every breath has a grunt with exhale. Her spirits are going back down and she is crying and unhappy. My favorite nurse is not working that day and we have an animated and great nurse but one who is far less familiar with Addie. So I am starting to sound like a paranoid mom saying over and over 'it's a bad sign she is grunting', 'I really just don't think she is okay', 'I feel like something is wrong with her heart', 'Please please can we just get a chest X ray or echo'. The nurse was not being dismissive but she was also clearly not sharing my urgency. So after getting tired of my pleas for a chest X ray, she put orders in for one but with it being a Sunday it took a bit of time. The X ray finally happened but by then Addie has escalated to wailing so as soon as they get the images, I grab her from her bed and am holding her, bouncing her in my arms, trying to soothe her.<br />
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I would never claim to have any sort of photographic memory and I have a terrible spatial awareness and am not generally great with visual recollection... BUT the handful of truly memorable moments with the babies I can remember like a photograph. I know exactly what they were wearing. I know where I was standing and who was in the room. So I know that when I was holding Addie, she was dressed like a perfect doll in this striped tunic style dress with coral leggings and a white sweater over it, and, of course, a bow. It was one of her first times to wear that outfit and she was precious in it, even as she was crying and squirming in discomfort. I'm standing at this point trying to find some comfortable position for her and holding her back against my chest and kind of bouncing or dancing. I do not have a direct view of her face so it was actually the animated nurse who first noticed that Addie's mouth all around her lips had turned blue. Which thanks to Maximillan the Chameleon I knew instantly meant her oxygen levels were low and that she was in trouble. This shocked me though because, despite how I had been saying she wasn't well, I wasn't expecting her oxygen to drop like that. The whole miserable week before when her heart was in so much trouble, she never turned blueish and she kept her oxygen up. So it was terrifying to think that she was now somehow worse than that.<br />
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The nurse swept her out of my arms and checked her oxygen level and sure enough, it was in the 70s and dropping (it should be 95-100). She pages a senior doctor with an emergency. No doubt we were a matter of minutes from her calling a code but my favorite neonatalogist (preemie doctor) was just down the hall and came running in. I'm standing there awkwardly not knowing what to do and feeling completely panicked and I have never been so happy to anyone as I was when Dr Jones walked in. I thought he was the most calming and competent of all the senior doctors I had met so I knew she was in the best hands. He rushed over and immediately began bagging her. The oxygen mask was over her face and he was pushing oxygen in as fast as he could, pumping the bag over and over. <br />
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Thanks to our regular Max attacks, including many a day the past couple of weeks, I was completely familiar with seeing my child being bagged so it should not have been a particularly scary moment for me. But I had never seen Addie bagged before and also, Max responded quickly, like within a couple of minutes, to being bagged. Meanwhile 5 minutes has passed and Dr Jones cannot get Addie's oxygen to stay up. He is keeping it from slipping further but he isn't stimulating her breaths to be strong enough to hold it. He calls out to the room full of nurses and other doctors now that he is going to have to emergency intubate her and stick a breathing tube down to connect her to a ventilator. I'm standing by myself off near Max's crib watching the whole thing and feeling more terrified.<br />
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Someone brings Dr Jones the supplies he needs and he stops bagging her to try and intubate her. While he is doing this, her oxygen is dropping lower and lower. I am staring at the monitor as they are dropping into the 40s. I understand now that it is very normal for oxygen to drop like that when someone is being intubated and that it is not an ominous sign. But this was my first time to watch someone be intubated and the room was so tense and stressful that no one could be explaining it to me. So I stood there and I was genuinely afraid that she was dying. All I could see was that her oxygen was getting worse, her heart rate had started to drop and although the doctor had now been there for about 15 minutes, things were not getting better. In hindsight, I probably should have run out of the room and waited in the hallway so I wouldn't be haunted with images of Addie in her doll outfit looking like that but I also was not going to leave her at a time like this so I just stood there not moving paralyzed with fear. Thankfully those anguishing moments were short and within a couple of minutes, Dr Jones had her intubated, hooked up to the ventilator and her vital immediately improved. I breathed a sigh of relief so loud that suddenly everyone in the room suddenly remembered that I had been standing there watching this whole scene and the doctors and nurses all emphasized to me that she was okay now. Except for, of course, the fact that we had no idea what was happening to make her so sick again.<br />
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Dr Jones then pulls up the chest X ray that thankfully had been taken just before all this happened and saw that while her heart was not as big as it had been, her lungs were very hazy from having fluid in them. Which was compromising her breathing ability. He explained to me that this can happen with heart failure that the heart ends up pumping fluid into the lungs. He also reassured me that although we obviously had to work out what was going on with her and how to help her, she was now stable as the ventilator would breathe for her and keep her safe until we did know better how to help her. He was super comforting and the pedestal I already had him on was now even higher!<br />
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My mom and dad and aunts had been on their way up to have lunch with me at the hospital when all this began happening but I went and talked to my mom and said that while i was happy for her to stay for a while, I really couldn't handle a whole group. My dad drove my aunts home and my mom stayed with me while Al was on his way up. He had stayed home that morning and started driving down after Addie was stable and intubated. Everything had happened so fast I had not even had a chance to let him know what was happening from the time her lips turned blue until the doctor had the breathing tube down. By the time Al got there, there was really very little for us to do. The ventilator had indeed stabilized her and actually understanding what had happened or what we should do would have to wait until round Monday morning when everyone was there... so until then, we held Max and we prayed for Addie and tried to keep our own emotions from spiraling down.<br />
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The next couple of days would bring more questions than answers. No one was really sure what was going on with Addie. The kidney doctors thought her heart was the biggest problem. The heart doctors thought dialysis was the biggest problem. The preemie doctor who had walked us down for Addie's surgery was back and he did a great job of getting together with both specialists and trying to bring them to an agreed upon plan. We would continue to pull fluid off aggressively and leave her very 'dry' or dehydrated and we would continue to administer IV heart meds around the clock and wait and see. The worst part was that the whole situation was casting this dark cloud over the future. Conversations worked themselves into this terrible circle- Addie's heart is not tolerating the fluid shifts of dialysis. It would be better if she got a kidney. You cannot do a kidney transplant on someone whose heart is not stable and able to handle stress. So, we may not be able to get a kidney in her. And without a kidney, her heart is going to have major issues. Of all the predicaments we had ever been in, I found this one the most depressing. I had come to see a kidney transplant as my goal for the babies and as our eventual freedom and happily ever after, so to listen to the doctors both reinforce how much she needed a kidney and also question whether it would ever be possible was just torture for me.<br />
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Addie ended up staying on the ventilator for four days. It was a miserable time for her. As she felt better, she was aware of the tube down her throat and most unhappy about it. We swaddled her tightly in a blanket to keep her from pulling it out and she was so dehydrated she was constantly thirsty so we would put wet washcloths to her lips. It was absolutely heartbreaking. And it was one of many times when I saw what a gift it was that God had given us twins. For while we felt helpless with Addie on the vent, we were blessed with a super cheerful little boy to hold and love on and find comfort in. Max was actually doing really well on dialysis and he was feeling great. It was such a needed joy to have him there to lighten our spirits as we dealt with watching Addie struggle.<br />
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I cannot tell you the exact moment when Addie's miracle happened. I am not even sure if there was a single moment or if was a more gradual process. But at some point in that week, God healed Addie's heart. After four very long days of watching Addie restrained and on the ventilator, it was time to pull out the breathing tube and see how she did on her own. She has thoroughly dehydrated and her vitals on the ventilator looked good so there was no way to know how she would do without it until we took the plunge and pulled it and gave her a chance. Initial nerves were settled when that night she did really well and the haunting grunting was completely gone. The eternal optimist in me was rejoicing as each hour passed and Addie still seemed well while the recently traumatized worrier in me kept wondering when it would all happen again. At that point, I think everyone thought that this history was going to repeat itself at some point. Since we had come to no real answer other than her heart is highly sensitive to the fluid shifts of dialysis, it seemed probable that dialysis was going to be very rough for her and that these scares are likely to occur again at some point. <br />
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But they did not. Ever. The days passed and we constantly did chest X rays and Echocardiograms to study her heart and everything looked good. It was not what we had expected medically. We expected her heart to improve, yes, but continue to show signs of sensitivity and stress. It was beyond what anyone had hoped. We would repeat in a couple of days and everything would look good. We would follow up in a month and everything would look good. Six months and everything would look good. Each time we got news that Addie's heart still looked good I would become overwhelmed with excitement and gratitude. Before long, I had truly realized that she had been healed and that her heart was going to stay looking good. Then, instead of being nervous for these heart checks, I would anticipate the joy of witnessing once more Addie's miracle. And each time the tests confirmed that Addie's heart was still doing great, I would remember the moment when I stood by her bed crying and told God I would be okay with her hearing loss if he would just save her life and heal her heart. And He did. Completely. And in doing so, He healed mine.<br />
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It was a terrible couple of weeks but it completely changed the way I saw so many things. To this day, I marvel at what a miracle and blessing sweet Addie is. She doesn't resemble that very sick 6 month old in hardly any ways but I remember how things were for her and savor her health and her perfect little heart so much more richly. And while I cannot say I have never shed a tear over hearing or developmental issues, I have never grieved and mourned for it like I once did again. Because I saw firsthand what mattered most and I know that as long as Addie is healthy, I do not need anything more. I have never since thought of Addie as a child with hearing loss or a child with delays, I look at her and all I see is my miracle. My healed little girl. God gave her back to us in two parts- on that day when her heart was healed and then fully on the day of her transplant. Two big miracles that have resulted in a perfect little girl. Who cannot talk yet because she cannot hear well. Whose mom thinks that is nothing. Whose mom sees only the miracle.<br />
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Addie's healed heart was not the end of her troubles, but it was the start of her healing. Dialysis would continue to be very difficult for her but with a strong heart now she was able to endure it. And able to receive the important gift of life I was holding onto for her. My healed heart was not the end of my struggles, but it was the start of my healing. Difficult news and crushing predictions would follow but God had strengthened my heart to endure it. Two weeks of tragedy gave way to a miracle that would teach me who was in control, what mattered most and that I could endure more than I knew possible. For that reason, I will never see Addie's heart failure trial as a sad story. I will always see it as a life changing story of healing.Stephaniehttp://www.blogger.com/profile/18262244487289072606noreply@blogger.com0tag:blogger.com,1999:blog-3438191659852423887.post-56297613596932669852014-06-28T07:38:00.001-07:002014-06-28T07:38:43.935-07:00Chapter 17: The Tale of Two Hearts- Part 1There are few stages in our NICU time that I would describe as being sad or depressing. After the initial days, we had truly settled in there and my memories of those 8 months are of friendships, support, laughter and growth and healing for the babies. There were exceptions, though, of course. The week after the babies had their kidneys out and started dialysis was an overall stressful and sad time for me. Surgery recovery was dragging along, with Max continuing to have multiple Max Attacks a day requiring bagging. He was objectively doing as well as we could have expected for so much change but our happy relaxed boy had yet to return and it did take a toll watching his daily color changes and discomfort. While Addie had initially seemed to cope well with surgery, dialysis seemed to be leaving her puffy and tired and void of her usual smiles and playful spirit. The days seemed to stretch on with neither baby being happy and with the hourly turning of clamps and draining of water that made dialysis seem, while not overly dramatic, incessant and constant. They were requiring around 20 hours of dialysis at this point so it seemed very consuming. We knew this would be our reality until transplant so the ever present bags of sugar were doing little to brighten my mood.<br />
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The darkest cloud over me during this week though was still my grief over their reported deafness. The tears had long dried up and been replaced with a numb ache and a cloud of discontentment. There was lots of talk among the doctors trying to understand why and the best explanation seemed to be that the aggressive IV medications they had been on for months had taken their toll on their hearing. I suppose that explanation had its comforts in that at least it was not a new totally separate issue that affected them. Furthermore, those medications had certainly saved their lives so there was no regrets or what ifs associated with it. The medications had been necessary. The hearing loss was merely a cost of saving their lives. Now that concept brings lots of peace to me but in that week when the information was so new, it did little to make me feel less sad for my babies and myself. Some nurses tried to talk to me about sign language or tell me cheerful stories about deaf friends but that only encouraged me to dwell on it more. It was clear my heart was broken over it and it was tainting my usually positive demeanor, which no doubt everyone could see.<br />
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I remember it was about 8 days after their surgery when we had this Saturday that just felt defeating. Max continued to turn blue and be unsettled and Addie's mild unhappiness had escalated to her being unusually fussy and sad the entire day. I updated Facebook more sparingly back then than I do now, usually only with cheerful photos to try and reassure everyone we were okay, but that day I put a post up asking for prayer because we had just had a rough few days. A friend of mine later said that she knew it must have been rough and I must have been struggling because such candor and honesty regarding the difficulties of our situation were rare then. <br />
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Unfortunately, things were not going to start getting better any time soon. The next day was actually Al and I's anniversary and Addie was more miserable. She seemed quite lethargic and her skin had a greyish color. She wasn't smiling and although she wasn't screaming, she would let out the occasional sad whimpers. Her vitals seemed stable enough at this point- she had no fever, she was maintaining her oxygen levels and her heart rate, though somehow elevated, didn't seem to be too troubling given we knew she was uncomfortable. And yet everyone who knew her and saw her knew something was very wrong. Al and I had plans to go for a nice dinner and celebrate our two year anniversary but neither of us could reconcile celebrating when sweet Addie was so clearly miserable. We grabbed a quick dinner and bought a box of Sprinkles cupcakes and both spent the night at the hospital, holding her and hoping we were providing her some comfort.<br />
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The next day was the fourth of July and Addie was progressively worse. Her whimpers had become more frequent and they now sounded like sad kitten mews- like she somehow lacked the energy to cry but had to let us know she was in pain. Her breathing had a grunt behind each breath and while she still had no fever, her heart rate and breathing rate had both gone up considerably while her blood pressure had dropped. It was now undeniable something was very wrong and the doctors ran the full range of tests. The immediate concern was some sort of bacterial infection, perhaps pneumonia? that was making her breathing more difficult and causing her general misery. But, the blood work that came back all seemed benign for such markers. There was a lull at that point, nothing they had feared had turned up and no one was sure exactly which direction to head in now. Our nurse encouraged us to go home for a few hours since we had been living up there and see my family on 4th of July. While I know she hoped the break would restore my own struggling spirit, I just worried the whole time and called her to check on Addie constantly. I was actually relieved to get back up there and determined I would just have to stay by her side and love her with all my strength until she got back hers.<br />
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Later Monday we got our first clue from a chest X ray. Although her lungs did not look overly ominous, it was clear there was some fluid in them and that could be causing the grunting and greyish coloring. More significantly though, the doctors noticed that her heart looked abnormally large on the X ray. They were able to pull up a previous recent X ray and confirm that in fact her heart looked significantly bigger at present. It was the weirdest feeling because initially I felt very relieved that they had some clue what was going on. I had found the confusion and complete lack of answers maddening but that relief was certainly short-lived as hearing these doctors talk about my baby's heart filled me with fear! Certainly I was no stranger to hearing bad news about my babies' health or organs, and yet there is something instinctively frightening when it is their heart you are talking about. <br />
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Tuesday morning brought a series of heart tests, an echocardiogram and some specialized blood work, and Addie was even more pitiful. The monitor showed that she was breathing 100 times a minute and that her heart was beating 200 times a minute- it was clear her body was working incredibly hard. The sad kitten whimpers continued and her coloring was greyish and watching her suffer like that was breaking my own heart into a million pieces. The test results were analyzed and the doctors came and talked to me and told me that Addison was in 'Congestive Heart Failure'. How my own heart did not stop at that moment I will never know but those sounded like the worst three words I had ever heard. While I was now an expert on kidney failure and had some fleeting experiences with respiratory failure, I knew absolutely nothing about heart failure. But I knew enough about biology and the body to know that if your heart fails, you fail. More than any other diagnosis we had ever been given, this one just terrified me.<br />
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I did really completely understand those words at that time. I understand it better now and realize that basically her heart had absorbed so much fluid (it was congested with fluid) that it was too swollen to pump effectively. I am sure someone did try and explain it to me then but all I could hear was HEART FAILURE. Those two words repeating in my head over and over. <br />
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I didn't break down and cry, though. I was too scared for that and too overwhelmed. I just sat there numb and nodded a lot. I tried to process everything they were telling me as intellectually as possible while trying to block out my feelings and emotions to the extent it was feasible so that I can keep my composure and be the strong mom I knew Addie needed at that moment. I remember at one point on that Tuesday one of our nurse practitioners came and sat down beside me and said 'I'm worried you don't understand how serious this is.' She had mistaken my facade of togetherness for confusion over the magnitude of what was occurring. Although I tried to assure her that I did understand, she continued to explain to me what we could lose Addie and that she may not make it through this. Of course I fully knew that but having to hear it spoken certainly did ache my broken heart further.<br />
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My mom and I talked about it and both agreed that we couldn't put those awful three words up on Facebook or out there. We knew they would inspire that same sense of sadness and panic in others that they did in us and we did not want our families and friends burdened to that extent. And on top of that, I just don't think we could acknowledge them in that way. Putting it in writing would authenticate the diagnosis in a way we just couldn't face. We could hardly bear to say the words to each other or out loud. Congestive Heart Failure. It was just too upsetting. So we told people that Addie was having some issues and complications and needed prayer but kept the true intensity of the situation to ourselves.<br />
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There was no easy solution because we did not truly understand why this had happened. It was definitely suspected that it was related to her dialysis and excess fluid in her body. It did not make medical sense though for mathematically we had pulled plenty of fluid off of her. Her twin brother had experienced the same initiation to dialysis and he was not having this issue. We had to question then if she had some underlying heart condition that had merely gone undetected until the initiation of dialysis. Her kidney doctor felt that all the changes between losing her last kidney and starting dialysis had led to dramatic changes in her heart's structure and function. There was a long explanation about the role that her thyroid may be playing. None of the hypotheses though came with a clear plan for a quick solution. For Tuesday night, our goal would be to aggressively pull fluid off her with dialysis and to see if we could dehydrate her heart back to functioning.<br />
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Over night we effectively dehydrated her such that her eyes sunk in and she looked like a skinnier version of her grey sad self but the monitor and her kitten whimpers revealed we had not made any great progress. She continued to breath 100 times a minute and her heart was beating excessively to compensate for how weak those beats were. Amazingly she did keep her oxygen levels up but we knew it was wearing her body out to manage that. I stood there Wednesday morning watching her struggle and feeling all the fears I had been trying not to acknowledge come at me at once. The tears finally came and our favorite nurse Lori came and wrapped her arm around me and I told her what was weighing most heavily on my heart:<br />
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"I cannot believe I sobbed over her hearing. I have spent the last week so upset over whether she would be able to hear and talk and how that would impact her as a teenager and that just feels so ridiculous right now. Now I might lose her before we even know all that and I don't care anymore if she can hear. I really don't. I just want her to be okay. That is all that matters to me anymore. I just need her to survive and be okay again and I won't ever cry over her hearing again. I don't need God to heal her hearing, I just need him to heal her heart."<br />
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It was a moment I will never forget and a moment I still think about when the sadness over developmental issues creeps back in. On that day, Addie's heart had yet to be healed but God was working then on healing mine.<br />
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Lori reassured me that it had been normal and okay that I cried over the hearing but understood and agreed with me that right now we just needed healing for her heart. She said all the right things and was a great source of comfort. I grabbed her hand and told her she had to stay by my side all day and couldn't leave me! She managed to make me laugh by expressing her concern over needing to pee at least every now and then! But she did stay by my side all morning. Al was on his way up and my parents were available but I also knew that seeing Addie like that would break their hearts too so I was actually okay right then with being there by myself with Lori there. It felt easier not to see how painful this also was for all of them.<br />
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The doctors all came in and it was clear something needed to be done. The best option we had to get her heart working more effectively would require a central line going into her heart to deliver constant IV medication that would stimulate it to work while we continued to adjust dialysis and try and understand what had happened to it. There was, however, a significant risk in this plan. It would mean taking her to the OR and putting her under anesthesia with a weak heart. Anesthesia and the placement of lines right near her heart has risks any time but doing that when she was so clearly compromised was far riskier. Her heart could give out with the added medication or manipulation. But then again, doing nothing hardly seemed a real option. She was certainly going to get worse and run out of time and we would all just be watching helpless. The doctors gave Al and I the choice which I always both appreciate and hate! On one hand, I know it is important for us to get to make those decisions and feel in total agreement with a plan. On the other hand, they are such incredibly difficult decisions and I worry myself sick about whether I am making the right one. Al was very supportive of whatever I felt was the right thing to do.<br />
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After praying about it, I felt pretty at peace that we should do the surgery. In most of these instances, I would favor taking a risk that I believed could save or greatly help my baby over doing nothing and watching them suffer. The doctors supported the decision and plans were made for her to go to surgery that afternoon. The NICU doctor who was on service at that time was known for anything but his bedside manner or compassionate approach. He was a great doctor, no doubt, but his manner was abrupt and he had never seemed particularly warm towards me or my kids. But that afternoon as we prepared for this surgery, he was particularly attentive and kind. In fact, as Addie was wheeled down to surgery, he walked with Al and I down there. And he stayed down there and talked himself to the surgeon who would be doing the procedure (it was actually an interventional radiologist) and he stood there with us waiting for them to take her in. I was so enormously thankful for him being there as I knew he was carefully explaining to the anesthesiologist and surgeon the seriousness of the situation and making sure that everyone knew what they needed to ensure a safe experience. And yet, at the same time, his unusual interest and support also reinforced to me just how serious this was. I knew if he was sure Addie would be okay and if this wasn't a huge deal, he would have been with the other babies who needed him instead of us. I wished very much we did not need him there at that moment and yet was so grateful that given we did, he was there for us.<br />
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Addie did fine in surgery and came out with a large line coming out of her femoral artery in her thigh. It was large and sad and Al cried when he saw it and just kept saying 'but she loves to kick her legs'. But, it sad as it may have been, it was delivering several important heart medications around the clock and hopefully helping her exhausted heart continue on as we continued to try and figure out what had happened.<br />
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The medication did provide some necessary short term relief for her heart and within a couple of days, her vitals had improved, her coloring had improved and although she was far from 'herself', the cat whimpers had disappeared and occasional smiles were spotted. We were all breathing huge sighs of relief, certain the worst was past and disaster had been averted.<br />
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Our celebrations were premature though. For while Addie's heart would be healed and mine along with it, it was not time yet. These couple of days would provide a necessary break before things would go terribly wrong again. <br />
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<br />Stephaniehttp://www.blogger.com/profile/18262244487289072606noreply@blogger.com0tag:blogger.com,1999:blog-3438191659852423887.post-66259985823633869662014-06-22T06:30:00.001-07:002014-06-22T06:30:20.400-07:00Chapter 16: So This is Dialysis?Sometimes I still forget that most people have no idea what dialysis actually entails. I have a tendency to casually refer to the kids as having been on dialysis like they will obviously know what that would mean. In doing so, of course I forget that I once upon a time would not have know what that meant. The word sounded daunting enough that I would have assumed it was very dramatic. I probably would have pictured an enormous, intimidating loud machine and a child wailing in pain and lots of surgical masks and general anxiety in the air. <br />
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In reality, dialysis actually looks from the outside deceptively simple. The babies were started on peritoneal dialysis which is a form of dialysis that essentially involves no more than putting water into the babies bellies and then pulling it back out again. Hemodialysis is considerably more complex in set up and nature but peritoneal dialysis can basically be done with a bag of sugar water and a tube. I think that the part of dialysis that most people found so surprising was just how simple it actually is- as long as it is working, of course. Dialysis seems amazingly easy when it is going smoothly and terribly complicated and confusing when complications arise. <br />
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We were actually lucky to get a 'sneak peak' at what dialysis would involve because we shared a NICU room with a baby who was already on dialysis. This sweet baby boy had been on dialysis for several months by the time Max and Addie would begin. And so we were able to both observe what was going on in his corner of the world and ask his mom questions as we approached the time to begin dialysis. We knew that there was no fan fare, alarms and drama when their neighbor went on dialysis and I think it definitely reassured us. Had we not had that daily experience of seeing his life on dialysis I know we would have been way more frightened so I am thankful that God placed us in the same room with that sweet boy so that his journey could provide reassurance for us.<br />
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Without kidneys, a person cannot pee at all. It's a weird concept, especially when you are looking at a baby in dry diapers! Without peeing, two things build up in the body which cause problems- water and waste products. Our dialysis buddy in the room still had his kidneys so he did still pee and could get rid of water on his own but his kidneys just did not effectively filter out waste. So dialysis actually had a smaller role for him. But for Max and Addie, they would rely on dialysis to get rid of all fluid and all waste that accumulated in their body. The premise of peritoneal dialysis is that you can place sugary water into the person's abdomen and as the blood circulates through, the magic that is osmosis and diffusion will pull both toxins and water out of the blood and into the sugar water.<br />
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I'm erring on the side of simplicity in explaining this, although I have done an hour long presentation to the 9th graders at my school explaining the process in terms of the principles of osmosis. But without my PowerPoint full of diagrams and without risking boring you to tears, it can be difficult to go into it with that level of scientific detail. So I'll stick with a more basic understanding which is definitely all you need to understand the impact that dialysis had on Max and Addie and on our family.<br />
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After approximately an hour, the once pure sugar water is now full of wastes and extra water and cannot really do its job anymore (a phenomenon called Equilibrium). At this point, that old water needs to be drained out of the body and replaced with new sugar water. Which will sit for an hour, and then be drained. Which is really all there is to dialysis. Fill the belly with sugar water. Wait an hour. Drain. Fill with new sugar water. Rather, Rinse, Repeat...<br />
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Initially, this process was done by their nurses. I will always remember their first day on dialysis, it was a Sunday and instead of sharing a nurse, they would each have their own nurse. Max had our favorite nurse Lori and Addie had a nurse we did not know as well but who was familiar with dialysis. The time came to begin dialysis and the nurses very simply open a clamp, placed a bag of sugar water on a pole and allowed water into the babies. Then they set their little hand held kitchen timers and we sat there. And that was all. It was so amazing to me that this moment we had so anticipated and so built up was so incredibly boring!!<br />
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After the hour was up, the nurse would then drain the water out of the body by turning another clamp. The nurses made it fun and turned it into a competition to see whose baby could drain more which I remember finding very funny and was very appreciative for anything to add a bit of energy to this process that I was otherwise finding to be monumentally dull! And the afternoon passed like that- clamps were turned, the babies were held and life continued absolutely like normal except for once an hour when the big drain would happen and we would all wait to see who baby would win that round. (I am pretty sure Max won Day 1 on dialysis which is most appropriate because Max was definitely the dialysis golden child in the long run!)<br />
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Over time, we would be able to get a machine to do the job those nurses were doing- filling and draining the babies at set times but it would be a couple of months before we would be able to switch to the machine. So for now, it would be lots of idle time with our two nurses, lots of unexciting turning of clamps and some bags of little more than clear kool aid. So when I would tell people the kids were starting dialysis I always thought they probably imagined it being way more dramatic and exciting than it was!<br />
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Like i mentioned earlier, though, the key with dialysis is that it is simple when it is working well. The first couple days on dialysis lured me into a false sense of security really. I was so underwhelmed by the process that within a few days I had abandoned all my worries and fears and decided dialysis was easy and things were all going to be sunny and rosy from now on. Never did it occur to me that this simple sugar water turning clamps process could go wrong in as many ways as it would. Sitting there bored on that first Sunday was not preparing me for the weeks that were coming when the difficulty of finding the right fluid balance would send my baby girl in heart failure. <br />
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I think I will always have a love hate relationship with dialysis. Dialysis kept my babies alive so I will always be grateful for the medical advancements that led to it being able to be used even on babies. And when it worked well, dialysis was blissfully simple and painless and we were able to continue with life as normal quite well on it. However, at the end of the day, dialysis can never replace a kidney and is a flawed process. And when it doesn't work, it can lead to terrifying life threatening crises. My love and gratitude for dialysis can only be matched by how haunted I will always be by some of the horrible scares Addie had while on it. But, complications and limitations included, I do know that dialysis was monumental in our journey and that it was necessary to sustain our family while we waited on transplant. So for that, I will ultimately always be glad for those bags of sugar and clamps that did the best they could to play the role of the kidney understudy those months in Max and Addie's story. Stephaniehttp://www.blogger.com/profile/18262244487289072606noreply@blogger.com0tag:blogger.com,1999:blog-3438191659852423887.post-53070275958009651802014-06-13T19:25:00.002-07:002014-06-13T19:47:36.761-07:00Making Plans AgainIf you had told me 6 months ago how happy we would be right now, I would have found it hard to believe. I would have wanted very much to believe it and it probably would have helped me to hear it, but in the midst of the storms we were travelling through, I would have struggled to imagine being in a place where we were not just enjoying each day but actually dreaming and planning again. And yet here we are. Truly blessed. Genuinely hopeful. Planning for the future.<br />
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Without rehashing a story that if you are reading this, you most likely already know, life had beaten us down to a point where we did not plan anything anymore. Once upon a time, Al and I were dreamers and planners. But, reality swept in and those dreams and plans were taken as collateral. The new plans that replaced them were important but lacking in the same excitement. Certainly it took tremendous planning to get the children transplanted and to adapt our lives to their needs. And we had moments in between where we would defy logic and boldly plan for a family activity or trip. <br />
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Unfortunately, though, any fun plans seemed to be met with constant cancellations and disappointments. Last year I literally think that every single time I planned to be out of state or at an important function, Max was in the hospital. By the time we were plowing through November's drama, we had decided that having booked both a concert and a photo shoot for that weekend was more foolish than it was endearingly hopeful. And although we earnestly tried not to lose our hope or happiness, we stopped making plans. <br />
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We lived for each day. We tackled our circumstances with as much grace and strength as we could muster. And we survived and managed to make the most of the days. But we did not dare plan anything for the future. We tried very hard to not even think about the future. <br />
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We met with a doctor who specializes in dealing with kids with chronic health issues in January. He wanted us to make plans. Oh but not the kind of plans you want to make. He wanted us to be prepared and have plans for a list of terrible 'what ifs' we could be facing, particularly if Max's breathing issues did not stabilize. We had some painful conversations and although we understood the merit of planning before, we decided we could not do that. No planning. No thinking about that future. Live today. We couldn't plan for good things but we wouldn't plan for bad either. We were determined just to develop tunnel vision for the present.<br />
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And then something happened. A gradual but amazing miracle occurred. Max got better. His breathing stabilized. His BiPap machine has made a HUGE difference. We can tell he is sleeping so much better and has greater energy and awareness during the day. We worried it would not be sufficient and we would have to start considering other possibilities already but it really did work for him. The infections which seemed so constant just stopped. The thermometer no longer lingers by his bed waiting for the next fever. Sure, his disabilities are still there but he is feeling great! As the weeks of this new non sickness passed, we cautiously rejoiced. So relieved for what we were seeing and still worried what the tonsil surgery would do to disrupt our sweet stage of stability. We mixed our relief over his progress with our dread over another surgery. <br />
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But then to our great shock and excitement, surgery went really smoothly!!! And now it's been a month since surgery and he is breathing better than ever, tolerating his BiPap machine better than ever and by far, the happiest we have EVER seen him. EVER. In the over three years of his life, now is the BEST he has EVER been. It is just hard to explain how amazing it is to see him transform from this very sick, weak and less engaged child 6 months ago to our happy laughing little boy! We will catch him just randomly laughing so much he gives himself hiccups- over seemingly nothing!!!<br />
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We have watched all this with amazement and nervous excitement. Could this really be true? Could Max really be this happy? Could he really not have been to the hospital in a month? Then in the last week, we decided to stop watching with our breaths held, afraid for when the 'next shoe' would drop. We decided it was time to embrace it. So we went a little crazy. We celebrated with reckless abandon.<br />
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We planned.<br />
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That's right. We dared to dream. We looked beyond today. We glanced into the future. And we decided it was time. To plan for one.<br />
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We have a lot of exciting ideas and plans from Family Fridays to some big trips in mind. Next week Max is going to have his first stay by himself to be spoiled at Nana and Papa's so Al and I can take Addie to Sea World. We are going on a big family vacation in Tennessee next month and there is a plane ticket with Max's name on it. And are you ready for the really wild part? There is a professional photographer booked! Gasp, insane I know!! We are hoping to see Max start going to school with Addie next year. And we are dreaming up and planning a trip to Australia finally!<br />
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We have not developed a total case of amnesia so we are well aware that any of our plans are subject to change. We know that things could happen. And we're okay with that. We're just excited to have plans. We are excited to be excited for the future.<br />
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Six months ago we were grateful just to be surviving each day. Today, we are making plans. God is so good. We are so blessed. <br />
<br />Stephaniehttp://www.blogger.com/profile/18262244487289072606noreply@blogger.com1tag:blogger.com,1999:blog-3438191659852423887.post-84184195711657668772014-06-08T18:33:00.002-07:002014-06-08T18:33:22.007-07:00Chapter 15: Grieving SilenceOne of the greatest heartbreaks and challenges I have faced began through an innocuous unplanned completely non dramatic routine test on a random day in the NICU. Being used to crises coming at us with flair and intensity, this one snuck up on us and caught me unaware. It was a normal day in the life of my giant NICU residents and a technician entered their room to do a standard newborn hearing test on one of their neighbor babies. While they were there, someone realized that despite being 5 months old, Max and Addie had never had a newborn hearing screen so hey why not go ahead and get that done. There had been no mention of concern, no talks or plans to have this test done. I was not even there at the time and no one mentioned that it was going to be done because as far as we all thought, they would pass and it would just be something to tick off as done. No big deal.<br />
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Except they didn't pass. At all. They both failed their newborn screen in both ears. And I show up at the hospital to hear these concerning results to a test I never knew was happening and had never even thought to be worried about. I probably should have been really upset then but the nurses and doctors all reassured me that the test was not particularly accurate or informative and that all it means is that they would do another more detailed test to determine what was going on later. So, because it hurt too much to think about and consider that test actually being correct, I clung instead to my dear old friend Denial. I did my own highly scientific tests of making loud noises and checking if they startled or responded and decided clearly this was a more accurate measure than their fancy machines and so I dismissed that test and determined not to worry about it until we got the 'real' test done. <br />
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The sedated ABR would be a brain wave test that would be done when they were asleep to see if the pathways that carried sound messages from the ear to the brain. Given we wanted to reduce the number of occasions that we exposed the babies to any kind of sedation or anesthesia, the idea was crafted to perform this test on the day of their upcoming big surgery to remove their remaining kidney. Brilliant plan! Especially if your goal was to create the single most stressful day of all time for the mom, it was essentially a fool proof pathway to success.<br />
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So with that hearing test on the schedule for a month away in June, I forced myself to forget about it until then! Hannah's visit certainly helped and by the time the big day arrived, I had rehearsed my own denial enough times that I genuinely expected to get great results.<br />
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June 25 was the day their last kidney would come out. While we had hoped that taking out their first kidney would perhaps reduce their protein loss enough to delay dialysis, it really showed little impact. They were continuing to lose too many proteins to leave the ICU and they were constantly in danger of too many life threatening issues. Removing the other kidney would be the only way to stop the protein loss that was sabotaging their health. Of course it would come at the cost of losing the ability to remove wastes and water from the body. A dialysis machine would then need to take over that job. They had the catheter in their bellies for that and it was healed and ready so it was time. It was a strange feeling approaching the removal of their kidney and beginning dialysis. On one hand, we knew it was necessary for them to come home so I was excited to get it done and move in that direction. On the other hand, we were lunging into a huge unknown and there would be no turning back. And we had heard enough about dialysis to know that for some it worked smoothly while for others it was ridden with complications. And regardless of the outcome, I knew now from experience that sending both of my children to the OR for back to back surgeries was going to make for a brutal day. <br />
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The day arrived and we had one of our favorite nurses on and I do not remember much of the day prior to Max's return. By this point, we had done a huge surgery day and enough small surgery days that the nervousness and dread of the morning of had lost its novelty and intensity and I was saving my energy for their return. So after a morning of waiting and trying to distract myself with Addie, the moment I was dreading came and they wheeled Max in on his ventilator with a new incision on his body and him looking completely out of it and changed. As those familiar tears started to well up as I saw him and had to hand over Addie for her turn, a doctor who was helping wheel him back picked that moment to tell me that they had done the hearing test and he did not hear anything in either ear.<br />
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I believe words are powerful and I often believe I can use them to portray strong emotions. But I am certain I lack the words to describe what that moment felt like. Partly because looking back on it now, I can see how they were not telling me the worst news I would hear. Now I can look at it and see how I should have responded. Oh but that is now and this was then. And it felt like I had just been shot through the heart. My emotions were already on edge and I just could not handle this news. My denial was demolished and I cannot even fully explain why but it broke my heart. And it crumbled my stoic composure and I just started sobbing. <br />
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And sobbing. And sobbing. <br />
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It was to this day, the only time I have ever truly just lost my ability to snap out of it. It was the only time in 8 months that random doctors and nurses had seen me just a complete emotional wreck. And for a while, nothing anyone could say felt comforting. I would eventually regain my composure but not through acceptance and comfort with the news but merely from sheer exhaustion and numbness. As I had already assumed, Addie came back from the surgery with the exact same report- profound hearing loss.<br />
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The best I can explain it is that despite all we had been through, until that moment I had still fervently believed our future was going to be 'normal'. I had already determined that we would get them both transplanted and that after that, my life would go back to looking exactly like I had imagined it to be. Two years of difficulty and then it would all just be sunshine and perfection after that. Even though doctors had told me their kidney condition would have life long impacts, I didn't really believe that. My life was going to still be normal. And back then normal still felt really important to me. And the news that my children could not hear caused an enormous disruption in my plan for a typical life. It suddenly meant that there would be challenges long term. Life was not going to just turn into my previous vision. I grieved for the loss of my so cherished hope for normalcy.<br />
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And I grieved for silence. I love to talk. I love music. I love laughter. I love Hearing. And when I heard that my sweet babies could not hear, I imagined them living there in that hospital for six months in SILENCE and the idea just broke my heart. That they weren't hearing me tell them that I love them. That they couldn't hear the stories we read them and the comforting words their sweet nurses whispered to them. I mourned that they were trapped in silence. <br />
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We told our parents and the other nurses and no one else. I did not know how to tell people. To compose a Facebook post to say that my babies do not hear was impossible. I did not yet have a blog to allow me to elaborate on such things. And there was definitely no way I could talk about it with people and find words in the midst of the pain. So for months, it was our private burden and pain. And at that point, it needed to be. My journey to peace and acceptance over their hearing loss was going to take time and I am glad I allowed myself the time to mourn and hurt and work through all those very real emotions before I began including others on that road. I am glad that by the time I shared the information, I was able to portray it as a challenge but not a devastation and as something that would impact my children but not as something that would define them.<br />
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The rest of the evening after their surgery passed in a flurry of emotions. I was so caught up in obsessing over their hearing that I was notably less affected by the surgery after math. Max was taken off his breathing machine early and did considerably better than he had after his last surgery, with fewer dramatic blue spells and better pain control. We knew we would wait a day or two on dialysis so the next 24 hours were for letting the babies rest and heal. And by all accounts, they were doing well on that task. I remember sitting in the NICU late that night looking defeated and troubled when one of the nurses I loved came in and assessed how Max and Addie looked and then questioned me. She asked me 'What is wrong? Look Max is extubated and he isn't blue and he is resting and they both came through surgery without any problems! This has been a good day!" and morosely told her about the hearing test. I guess I expected her to cloud over with pity and sadness and give in to my defeat but she continued smiling at me and said to me, "Well that's ok. You can deal with that. But for right now, for today, they both just survived major surgery and are doing great and that is worth being thankful for." I wish I could say my attitude completely changed then but it would take more and longer than that. It did, however, give me the boost I needed to for that night anyway, to take a break from grieving their silence to acknowledge with gratitude what all they had survived that day.<br />
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That day was a painful part of the process of demolishing the ordinary dreams I had so valued for my family. I sat that day crying at what I was as brokenness. It would take me a long time to realize that God was knocking down my lesser vision for His greater plan for an extraordinary life. I will always remember the heartbreak of that June day, but I can now see it's role in a beautiful new creation as well. Stephaniehttp://www.blogger.com/profile/18262244487289072606noreply@blogger.com0tag:blogger.com,1999:blog-3438191659852423887.post-18798888779209590382014-06-01T09:35:00.002-07:002014-06-01T09:36:25.376-07:00Chapter 14: The Light in the Middle of the TunnelThe Light at the End of the Tunnel.... it's a commonly used phrase because everyone who has been through a particularly challenging stretch in life knows the importance of looking forward to an end to the trial. When we can see the end or the promise of a new beginning, we have greater strength and endurance to keep walking through the darkness towards that light. Without a light, tunnels seem to stretch on indefinitely and the perseverance and hope to keep trekking can seem impossible. I remember vividly Al and I lying in bed at night the first couple of weeks after the babies were born and him saying "2 months. We can do it. 2 months and it will be their due date and they'll be home from the hospital and everything will be how it was supposed to be. We can do this for 2 months." It was like our little mantra those early days when preemies and the NICU felt so overwhelming. We would just stare into that light and keep on. And then within three days, the babies were suddenly diagnosed with a lifelong and life threatening kidney condition and were transferred downtown and Dr Doom and Gloom was saying 6 months to a year in the hospital and that is assuming they survived the long list of risks. And we couldn't see the light anymore. All we could see was a long dark tunnel full of twists and turns that we were afraid to navigate our way through. We had no idea when they would come home and we felt like we did not know what to look forward to or how to stay hopeful. Without a light, the tunnel felt defeating.<br />
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But one lesson I learned then and still cling to is that you won't always have the sight of a light at the END of the tunnel. Sometimes there are just too many bends along the way to get a glimpse of it. Some tunnels are so far reaching that there may not truly even be an end. But, there will be lights along the way. Instead of straining your eyes to see to the end, I have learned to look for a light in the middle. The tunnel may not be over but it's a point where there is a break and a moment of light along the way. And those lights during the tunnel will sustain you far more than just charging to the end ever would anyway. <br />
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The day after the meeting with Dr Doom and Gloom, I caught a glimpse of what would be my biggest light in the middle of our NICU tunnel. Knowing how scared and overwhelmed I was, my best friend Hannah from Australia called me and told me she was coming out to visit me and stay with me for a couple of weeks. She told me I could pick when and she would be there. It was exactly what I needed to hear that day! I had lived in Australia for 10 years, lived with Hannah for several years during that time and since living in America only two years at that point, no one had come close to filling her shoes. Since I knew I would be going back to work and I knew this road was going to be long and I would need something in the future to look forward to, I picked early June. Hannah booked her ticket that week and my calendar suddenly had this big light shining up June.<br />
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I had no idea when my babies would come home. I had no idea what dialysis would be like. I did not know when they would get transplanted or anything about the future. I wasn't sure what to look forward to with them so I looked forward to Hannah's visit. For months on hard days, I would count down weeks and then days until she was there. When I did feel myself getting swallowed by the dimly lit tunnel, I looked to the light of her arrival to keep my spirits up. And it worked. I just cannot describe what a blessing that joyous anticipation was during those months. I hadn't realized until Hannah booked her flight how much I needed my best friend and how much it would mean to me to have her there in my NICU world lighting it up with her sense of humor and empathy and ability to find joy in all circumstances.<br />
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June rolled around. The babies were stable. Taking one kidney out had not had a huge impact on their health (which we expected but had hoped none the less it would) so we knew we would be removing the other kidney and using their now healed dialysis catheter soon. We were basically just waiting for their late June surgery date with all kinds of apprehension at starting that process. School let out for summer so I was no longer torn between my two worlds and Hannah arrived that week. I could barely contain my excitement seeing her there in baggage claim, my bright light finally being there in front of me. And of course even though it was like 10pm and I told her we could go home and sleep she was like 'Nope I want to go to the NICU and see those babies now. I don't care if they are sleeping, I just need to see them!' Sharing them with her and seeing her love them and hold them and delight in them brought me more joy than I could hope to explain.<br />
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The next two weeks were just pure joy. We had found happiness in our hospital routine and our days had been sprinkled with laughter and contentment even despite the difficult circumstances but nothing compared to the joy of those two weeks. Every morning we drove nice and early down to the hospital and Hannah and I would hold the babies and play with them while the doctors made their rounds. Hannah took as much joy as me in picking outfits out for them each day and capturing their expressions on camera. She would help me feed them and point out funny things going on with them or around us that would make me laugh and see this new world in a whole new light. She herself is a doctor, a psychiatrist who was fresh out of medical school, so rather than finding the medical side of things daunting, she found it fascinating. She would soak up details and I reveled in having someone anticipating lab results with the same enthusiasm I did. She created nicknames for the doctors and nurses that to this day make me laugh when I think about them. Instead of feeling like living in the hospital every day was depressing, she made me see all the humor and joy in it and I was now pretty sure our daily life had more comedic material than a Seinfeld episode.<br />
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Every day for lunch we would leave and go have a delicious lunch at the nearby shopping center. We would stroll the shops and she was fascinated by all the American clothing and sales. It was the first time I had shopped in 6 months and it felt so refreshingly normal. We would head back from our lunch break to then spend the afternoon back with the babies, taking turns feeding them, changing them and making them laugh. Al or my parents would come up many afternoons and reveled in the new joy that Hannah was bringing to our old routines! She never rushed me to leave or go do sight seeing or fun activities. If I wanted to stay at the hospital until late and rock them to sleep, she would stay with me. If the babies were asleep early or super stable and I was up for leaving early, she was always up for a pit stop on the way home at a cupcake shop on her quest to find the best Texas cupcake. Some nights we would go out for novelty dinners, some nights we would come home and Al would cook for us, some nights we would meet my parents or friends. But every night we would stay up sitting in front of the television laughing about anything that came to mind like we had for the 2 years we had lived together in college. And every night for those two weeks, I went to sleep happy.<br />
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I had my greedy moments where I felt sad that my dear friend was going to have to leave and go all the way back to Australia. I wished desperately that she lived close by and that they wonderful days could be more frequent. But, I did not want that sadness to taint the joy so as her leaving was approaching, I focused on just making the most of every day. I will always remember her last morning and us sitting up at the NICU with Addie in her arms and her lamenting how much she would miss her. Hannah's suitcases were packed and she was dressed for her flight and so of course Addie chose that moment to spit up all on her. Being the good sport she was, Hannah just laughed and said that now she would be extra sad the whole flight when she kept getting whiffs of Addie's spit up on her and missing being with her. I dropped Hannah off at the airport and sobbed and sobbed the whole way back to the hospital. I would miss her dreadfully sitting in my NICU chair the coming days without her there making me laugh with her running commentary on NICU life.<br />
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Thankfully though, the light and joy that Hannah brought did not go away when she left. She left me with greater joy, an ability to laugh at the world around me and a renewed spirit. It would be 18 months before I would see Hannah again and I miss her every day I do not see her but my weeks when she is here are God's gift to me, his lights he plants during particularly dark moments in this road. Hannah and I had no idea when we picked those weeks in June that within two weeks of her leaving, I would be facing the worst couple of weeks of my life with Addie's heart failure. We picked dates out of convenient but I know God ordained those dates because I would need those two weeks of joy to survive the two weeks of heartache coming. My two weeks in June were definitely not the light at the END of the tunnel but it was my light right in the middle of the tunnel. It was my refreshment and my break and it kept me sane and reminded me that no matter what you are going through, there will be laughter, friendship and joy along the way. Stephaniehttp://www.blogger.com/profile/18262244487289072606noreply@blogger.com1tag:blogger.com,1999:blog-3438191659852423887.post-90477599656701740312014-05-25T08:48:00.000-07:002014-05-25T08:48:08.997-07:00Chapter 13: A Timely Gift There is something incredibly magical about a small babies' smile. Especially their first few smiles. After weeks of fatigue, fear over doing the wrong things and the steepest learning curve of your life, one smile and suddenly motherhood feels rewarding, manageable and fun. With one smile, you are reassured that they do feel loved and safe and that you are doing something right. A baby's first smile is one of the most wonderful gifts of parenthood. And Addie's was delivered to me in my moment of greatest need. Her smile would sustain me through difficult days like we had not yet known.<br />
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After our isolation drama and monumental decision that we would move forward with the big surgery to take out a kidney and put in a dialysis catheter, we had a few weeks of calm before the lurking next storm. April brought warmer weather, bigger babies, increased stability and a comforting routine to our hospital days. I had gone back to work from maternity leave and decided early on that I would not miss a day of being with them at the hospital so my days belonged to my school and my evenings to my babies. It was exhausting but perhaps the great blessing of fatigue is the lack of energy to worry, brood or contemplate. It was a stage of putting one foot in front of the other and seeing the days fly by in a blur of activity. The weekend before their surgery was Easter Weekend so it was easy to allow ourselves to become consumed in smocked bunny clothing, brand new Easter baskets, extra visitors and a copious supply of egg shaped chocolates. In fact, those few days before the surgery were among the happiest of our days in the NICU. <br />
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Between the exhaustion and the bunny festivities, I managed to prevent myself from thinking terribly much about the surgery looming on the horizon. It wasn't until late in the evening of Easter Sunday when the bunny clothes were exchanged for hospital gowns, the food was all packed away and the babies had been NPO, meaning no fluid allowed, for the next morning's surgery that I was jolted with the reality of what the next day, or days would be bringing. <br />
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I've often debated with myself which I have found more emotional and difficult to face: an emergency surgery on a sick baby or a planned surgery on a seemingly healthy baby. I have always found there to be something somewhat unbearable about handing over a stable content child knowing that things were inevitably going to get worse before they could even potentially get better. In those moments, my arms want to cling onto my child and my eyes swell up with tears as they stroll them away. It is scary and sad to send a sick baby off to the OR but for me, to send my well child away just would break my heart and defy all my logic. Therefore I faced that morning with a particularly high level of dread and angst. Although I knew in my head all the reasons why this was the pathway we needed to take and that removing the kidney and placing a large plastic tube in their bellies was the best decision, it felt very wrong when the time came to do it. <br />
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There have been only two days when both babies have gone to surgery on the same day and this was the first one. For lots of practical reasons, piggy back surgeries were the best way to approach this- it suited the surgeon and for me who was back at work and needing to take time off for their recoveries, it definitely made more sense. The fact that it would prove to be absolute torture for my poor mommy heart simply wasn't our number one concern. So early in the morning on Monday April 25 2011, they took Max back for his surgery. He was gone probably 5 hours and we sat around with my parents all taking turns holding Addie, praying and just trying to pass the time. My heart was heavy with my baby boy in the Operating room and knowing that any relief from his return would be overshadowed by the sadness of Addie taking his place. As I sat there during those hours with Addie in my arms worrying, she did something for the first time- she looked right at me and smiled. And smiled and smiled and smiled. She passed the hours looking into my eyes and smiling at me. We had caught random smiles from both of them at different times and they were both starting to flash occassional but still random grins, but these were our first social interactive back to back full fledged smiles.<br />
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And with those precious smiles, our hearts could not help but be filled with joy, despite the circumstances. The beauty of her precious smiles became stronger than the sadness of what that day entailed and our heavy hearts lifted at the priceless gift God had planned for us that morning. No doubt it was a gift that was reserved for our hour of greatest need- a joy we needed in that moment more than any time before.<br />
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I'd love to say that after those smiles that the rest of the day was a piece of cake. But while the smiles sustained and blessed us, they also made the terrible job of then handing Addie over to the surgeon that much more difficult. The few moments between Max's return and Addie being wheeled away were among the most painful I can recall. They bring Max in on a ventilator, completely out of it and his naked body covered in 6 incisions and with a seemingly giant new white tube protruding from his belly. He looked nothing like the little boy in his blue smocked bunny jon-jon the day before. He looked sick, he looked sad. And it was just heart-wrenching to see. As they carefully placed his sore body still hooked up to machines on an open bed, they simultaneously started preparing Addie to be wheeled away. My smiling little baby girl was being loaded up and right before my eyes was an exact image of how she would return to me. <br />
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By this time I was 4 months into this crazy new normal and I had nearly perfected my stoic demeanor during difficult times. While I had once stared at the nurses with what one called 'sad puppy dog eyes' during heel pricks, I could now calmly offer to hold a leg down if needed. I had begun to pride myself on my toughness. But as I stood there but a helpless witness to this scene, this poignant before and after display I was witnessing, all of my defenses crumbled down and I lost it and the sobbing began. I have never had the gift of pretty elegant crying. I go straight from stone faced to full blown ugly cry in a matter of seconds. So in the midst of this chaotic moment with nurses and transport team and everyone gathering, I stood there wearing my heart on my sleeve, the tears unable to be stopped. <br />
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By the time Addie would return hours later, the tears would have stopped and the brave face would have returned, but the drama would not have settled down. Given Max was awake and distressed by the breathing tube, they went ahead and pulled the breathing tube out. They then placed him in Al's arms for comfort which did seem like a great idea until he got distressed and completely stopped breathing and they had to whisk him out of Al's arms to start bagging him. As if we were taking turns having our breakdowns, Al now runs out of the room in tears. And really for a number of days, this pattern would persist whereby Max would get upset from the pain and collapse his airway and then subdued from the anesthetic and pain meds, he would lack the drive to open it again. It would make for a frightening and very long week before he finally seemed to be back to himself.<br />
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Addie's return was thankfully less chaotic and she seemed content to sleep off her surgery pain for a couple of days. I would watch them both during those long days and still see Addie's perfect smiles in my head and I would pray for them to come back to me quickly. Those smiley images would keep me company and give me a vision of what I was anxiously awaiting to see return. And when they did finally return 3 days after surgery, those post surgery smiles were an even sweeter gift. A promise that no matter what they would endure, they would always come back smiling and never lose their innocent joy. A promise that, to this day, they have both kept. <br />
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<br />Stephaniehttp://www.blogger.com/profile/18262244487289072606noreply@blogger.com0tag:blogger.com,1999:blog-3438191659852423887.post-33997302858930407522014-05-17T10:28:00.003-07:002014-05-17T14:40:22.799-07:00Chapter 12: My Other WorldThere have been so many difficult decisions I have had to make as a mother. Ironically one of the decisions I had anticipated being most difficult actually proved to be incredibly easy. Before having kids, I had enjoyed theoretical debating with friends or family about whether I would want to be a working mom or a stay at home mom. I brainstormed pros and cons, sure that the choice would somehow come down to my own sense of happiness and calling. Instead, it ended up being a choice that was completely made for me. I would go back to work, despite crazy circumstances, out of total necessity. And looking at it now I am relieved the decision ended up not being mine. Partly because I would certainly be inundated with plenty of impossible decisions I would have to make but partly because I probably would have chosen wrongly. Leaving my two babies in the NICU an hour away to go act like everything was okay and be strong for 150 teenagers felt like the hardest and most ridiculous thing I had ever been asked to do. But having to be strong, having to take a break from thinking about heavy stuff to ponder plant adaptations, and having a life and role outside of this new all consuming one as their mom proved one of my greatest assets for coping. It's likely not the choice I would have made, but I can see the ways in which it sustained me and I'm grateful for my job and my one part of my old life that God enabled me to keep.<br />
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The story of how I ended up being the primary income earner actually starts when I was 16 years old. My dad worked for an oil company and we knew that a big move was on the horizon. One day we came home from school and they told us we were going out to eat and that the restaurant we would eat at would tell us where we were moving. Sitting blindfolded in the backseat I was hoping more than anything we were heading to the Outback Steakhouse. When I got there and saw it, I jumped up and down. I was excited for the adventure and I'm so grateful I had that opportunity to live there. I ended up living in Australia for 10 years, seven years longer than the rest of my family. I decided I wanted to be a teacher in Australia and had my first three years of working there. I made friends I still consider to be my closest friends there. And most importantly, I fell in love there. I started dating Alister when we were 18 and 8 years later, we were very excitedly planning a wedding.<br />
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We were both teaching at amazing private schools in Australia and content with our careers and our lives. But our happiness was cultivating big dreams in us. We wanted a house to fill with lots of babies. They had long been named and we spent our final carefree childless years to talk about anything other than the kids talking about our imaginary future children. Every trip back to America was making the cheap housing and delicious Mexican food in Houston seem more and more appealing. Al's family was in Australia and mine was in Texas and I was feeling ready to live in the same city with them again, especially as wedding talk and baby dreams were taking over my life. So we did what was both brave, and arguably slightly stupid but no doubt God ordained- we sold everything we owned in Australia and moved to Houston job less with a couple of suitcases. <br />
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Thankfully I ended up in a new teaching job pretty quickly. A friend of my mom's needed a long term Science substitute and from there I ended up with a full time position as a Biology teacher. It was a tough adjustment from teaching Psychology at my small nurturing private schools to now teaching Biology at the big public school and I certainly had days where I did not love it and terribly missed Australia. I never stopped being grateful for the job, however, as Al's quest for a job was proving much more difficult. Immigration concerns initially held him up and then bad luck getting very close interviewing for jobs but not landing the job meant that he ended up subbing full time. <br />
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Looking back at it now and knowing how it would all end up, it's easy to wonder why we thought it was a good idea to go ahead and start our family without him being in a permanent position in a school. At the time though, our desire for babies and our intense optimism that a job surely could not be far away were stronger than our fears. I knew while pregnant that as the insurance holder I would end up needing to go back after the babies came and I was okay with that. It seemed like a temporary plan and back then I felt like Superwoman so clearly I could work full time and raise twins. Piece of Cake.<br />
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Of course as the weeks passed after my C section and my inevitable return to work date loomed, I started to feel like anything but Superwoman. Staked out at my NICU post, it seemed impossible to just not show up there one day to instead go to work. But, I also understood that being a parent and loving your kids doesn't just mean holding and kissing them, it also means working to have the means to meet all their needs. I knew that my job is how we would hold the health insurance that was saving their lives. I knew that my most important job of being their mommy meant doing my other job of teaching Biology as well as I could. So, in March, about 12 weeks after they were born, I went back to work. And there have been many absences along the way, but since then I have continued to work full time and prioritize my job during crazy circumstances.<br />
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I remember that March walking into my classes and having students run to hug me and tell me how much they missed me. I remember having students that were out of control from having had a lot of subs. I remember feeling like I was drowning in paperwork and meetings. It was very stressful but in its own way it was soothing. I would drive to work so upset and worried about my babies and I would be feeling awful about not being there and my head was such an emotional and frantic place. But once I stepped in my classroom, there was simply no time to think about that. Because 30 needy teenagers were there demanding my attention. Sometimes they would distract me with their sweetness and hilariousness. I would find myself caught up in their innocent joys and dramas and be smiling away. Sometimes they would distract me with their deviancy and behavior issues. I couldn't think about anything those days but who, oh who, drew a life sized drawing of Osama Bin Laden on my lab desk and what, oh what, to do about that. Either way, through their charms or their challenges, my students forced a break from my worrying and emotional pain and I desperately needed that! <br />
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When friends were hard to keep up with and time to socialize non existant, my short work lunch times and staff meetings would become by greatest social support. My friends I saw at work were the people I told everything to and the people that would love me through the highs and lows. Going back that March I realized how much I did need that and to this day, it is still a huge support system in my day to day life.<br />
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By Friday nights, I am so exhausted I feel like it would be completely reasonable to go to sleep at 5pm. There are still days when I would rather hide under my desk and cry than keep teaching. There are students who make me want to pull out my hair. There have been days of sitting in an ICU chair with a laptop trying to analyze grades when my baby was dangerously sick. Teaching while going through these medical crises has been draining, difficult and at times, defeating. And yet I know it has also been a tremendous blessing. I know that it has been exactly what I have needed. So I'm thankful I never had a choice. I'm thankful that I never needed to finish my pro/con list and really decide what I wanted. Sometimes what we want and what we need are entirely different things. I'm grateful for the blessing of distraction, the gift of teenagers and teachers, and the very true idea that what does not kill you, will in fact make you stronger. <br />
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<br />Stephaniehttp://www.blogger.com/profile/18262244487289072606noreply@blogger.com0tag:blogger.com,1999:blog-3438191659852423887.post-72982340082078041912014-05-11T06:29:00.001-07:002014-05-11T06:29:12.123-07:00Chapter 11: Drinking Pennies I've always found it remarkable how quickly one can adjust to an entirely new set of circumstances and start to establish routines and a level of comfort. Hospital life that had once felt so daunting, emotional and stressful had within a couple of months become oddly comfortable and enjoyable. I was still on maternity leave so the lack of other stress and pressure in my life allowed me to immerse myself in Max and Addie's new world and to face the new challenges with an single minded devotion. I drove to the hospital with a sense of purpose, I fed and held my babies and savored each moment, I researched and made sense of everything the doctors told me, I befriended the nurses and made Max and Addie's little corner of the hospital look as home like as possible with their personalized blankets, painted wooden name signs and pictures and toys. Walking into their hospital room stopped feeling medical, it just felt natural. It was where I got to love on my babies and therefore I drove to the hospital with happy anticipation, excited to be where my heart was living.<br />
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Medically things had settled into a routine as well by late February. Addie no longer needed her feeding tube so she was drinking her bottles and acting like a completely typical baby. She needed two long IV infusions every day to replace the proteins that her kidneys were frantically dumping into her pee but if you did not see the IV line attached to the central line in her chest you would have no clue she was anything other than healthy and happy. Max was far less stable but even his Max attacks had become so frequent that it no longer felt like a crisis but rather merely an hourly event. Then I fed my baby, then we bagged my baby back to life because he stopped breathing, then I read to my baby and then it was lunch time... this was just how it was. And I was okay with that. I was remarkably happy even during this time. Most of the initial shock and pain of their diagnosis has worn off and the future hurdles seemed so far away that living in the moment, truly taking things one day at a day was very manageable and enjoyable.<br />
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In fact, I had so settled into my NICU life that I managed to be caught completely off guard when reminders did come that in fact my children were very sick and that they were in reality living in an Intensive Care Unit and that their precious adorable lives were indeed at risk. My happy routine came to a jolt in mid March when routine bloodwork revealed that Addie had virtually no white blood cells, meaning her immune system was essentially depleted. This began a panic fueled spiral of events. Initially they feared that this must be because she was currently sick and searched for a source of infection. When that quest yielded no answers, they decided that although not currently sick, she was almost certainly at imminent risk of getting sick as she lacked the ability to fight anything off. If I was unclear of how serious the situation was, the doctors harped on the phrase 'life threatening' and ensured that I quickly matched their level of concern and fear.<br />
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To try and minimize the likelihood of Addie catching any sort of infection from the other babies around her, she was moved into an isolation room. Essentially the solitary confinement of the NICU, she and Max were in separate room across a hallway. In order to be in her room, we had to wear plastic gowns and masks. Gone were the welcomed distractions of a busy pod full of other babies and families. Gone were the relaxing hours spent holding her or Max while playing with the other one. All the efforts to make our little hospital nook feel like home and we now found ourselves in a sterile white walled closet sweating under plastic layers worrying about when she would start getting sick and what would happen. The comfortable routine was so abruptly replaced with the sobering reality of living in an ICU.<br />
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Thankfully though, Addie's time in isolation ended up being only cautionary and she never became sick. And her release and freedom came from a very unexpected source. While most of the doctors were busy managing her white blood cell count and preventing complications from it, one neonatalogist (preemie specialist) started researching WHY Addie had such a low white blood cell count. She stumbled upon a very treatable answer. She proposed that one of the things that Addie's kidneys were dumping out was her copper binding proteins. This resulted in her having very low copper levels (for some reason this seemed to happen to her but not Max). Copper is responsible for stimulating white blood cell production in the bone marrow. Without copper, Addie's body was not continuing to make white blood cells and thus at constant risk of developing the life threatening infection we were all worrying about.<br />
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The solution was simple. Drink Pennies. We had to pour Copper in liquid form into Addie's nightly bottle. It make the milk smell like a roll of pennies. I felt so bad for my sweet baby as I held her and poured the penny milk into her and watched her scrunched up annoyed face that her beloved milk had been ruined! But, as soon as the Copper milk came into existence, Addie started making white blood cells again and she got released from her solitary confinement. I had never been so excited to be back in the normal NICU room full of babies, pink blankets and windows! It felt like paradise! And no one used the phrase 'life threatening'- well at least they used it way less! Who would have thought that drinking pennies could save the day?<br />
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Our little more than a week in Isolation was a turning point though in the course of treatment for Max and Addie. While we had been continuing with the plan of replacing what their kidneys peed out, the addition of this new copper dilemma and more medication led us to the point where we decided their kidneys were just causing too many risks and issues and it was time to move towards removing their kidneys and starting them on dialysis. It had become clear that despite the moments of finding comfort in this hospital life, that it was truly no way for them to live. For me, our time in isolation was the wake up call I needed that it was time to start looking at the more aggressive but more home based treatment alternatives. <br />
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The decision to move towards dialysis appropriately brought us back to a small conference room with our old friend Dr Doom and Gloom. I came to this meeting more prepared, dressed appropriately and well rested, and with a beloved NICU nurse sitting next to us for moral support. I was determined that it would be a better experience than our last conference room confrontation. We left the meeting with a plan. We would take their first kidney out on April 24th and place a dialysis catheter in their abdomen. Then we would wait a month or two and let the new catheter heal before we removed the second kidney and started them on dialysis. Our goal would be to have dialysis running smoothly and them both home before the end of that summer. <br />
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Although there is some inherent comfort that comes from feeling like you have a plan, we nevertheless left the meeting with a fair amount of anxiety. One of the characteristically melancholy things that Dr Doom and Gloom told us was that there are a lot of risks for babies requiring dialysis. He told us that 10 years ago, the likelihood of a baby on dialysis making it to their first birthday would be about 50%. While he say that things have improved in the last 10 years, I know Al and I both left with that 50% echoing in our heads. Two babies on dialysis. Please let them both get to celebrate their first birthday.<br />
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I'm glad we didn't know then how many close calls the next year would include. Although, I wish we had known then as well as we know now just how many miracles the next year would include. <br />
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<br />Stephaniehttp://www.blogger.com/profile/18262244487289072606noreply@blogger.com1