#BESTSUMMEREVER

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.

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.

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:

In my moments of fear

Through every pain, every tear

There's a God who's been faithful to me

When my strength was all gone, 

When my heart had no song

Still my God, He was faithful to me

Every word He's promised, is true

What I thought was impossible, I've seen my God do

He's been faithful, faithful to me

Looking back, his love and mercy I see

In my heart I have questioned, even failed to believe,

Yet He's been faithful, faithful to me

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.  

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!

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!

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.

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.

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.

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 

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.   

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:

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:

   -God is bigger than anything we could face this year.

   -There will be an abundance of joy this year.

   -No matter what happens, we will be okay.

   -Nothing can happen that we cannot recover from. 

   -Regardless of what is happening each day, we can continue to have hope for the future.

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. 

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.  

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.

OUR SUMMER IN PHOTOS:

Summertime is all about water for Addie!  Playing in the sprinklers at home!

Or the fountains at market street!

This summer Addie rode on 7 different carousels in 3 different cities!!!

Twin time together at the Children's Museum

This summer we celebrated Papa and Daddy on Father's Day (and we also enjoyed doing lots of my Pinterest craft projects!!)

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!

Travelling to San Antonio also meant Addie's first Bucee's trip!

Essentially the whole reason we picked Sea World was so that Addie could meet Elmo, her hero! The moment did not disappoint!

It thrills Mommy and Daddy to see her so happy!!

We discovered at the Rodeo that Addie LOVES rides so Sea World's kids area was awesome for her!!!

They also had a Splash pad!! It was seriously like Addie's dream place!! All her favorite things!

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!

Kaylea got to experience the Children's Museum herself.  Obviously the highlight of her trip!

Max is the most loving and friendly child!  Every new visitor is exciting for him!! 

We beat the Texas heat by checking out all the indoor playgrounds!! Wonderwild was a huge hit!!

Addie got very good at fingerpainting this summer!

After an awful winter, Max was just so happy to be feeling so great!!! 

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! 

Sea themed carousel was adorable!

Her favorite dropping right Aquarium style with frogs!

First ever time on a ferris wheel.  She is our thrill seeker so naturally loved it!!

The highlight of the aquarium day for Al was the white tiger which he was definitely not expecting to find at an aquarium!!

Happy Fourth of July!! Kids first fireworks experience.  Both really enjoyed watching them!!

Addie loved being escorted to and from the fireworks in her wagon

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!

Family beach day in Galveston!! 

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!

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!

I think he could watch her for hours and not stop smiling.  He worships his sister!

Another indoor strategy to wear out little miss was Pump it Up which she thinks is awesome

The best five days of our summer though was at Blackberry Farm, our whole family vacation in Tennessee

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!)

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. 

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!

I think vacation officially agrees with Max!

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!

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!

With cousin Karli

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

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!!

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!

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!

Addie also got to go to her first American Girl store!! It's possible Nana and I enjoyed it more than Addie;)

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!

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!

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!

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!

It's her favorite ride again!!! The dropping ride is clearly a national favorite!

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. 

No better way to see the sights of Chicago than on a ferris wheel!

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!

Day 2 in Chicago was the Lincoln Park Zoo

It wouldn't be a good zoo trip without a Lion King reenactment...

Coolest carousel of the summer goes to the Endangered Species Carousel at the Lincoln Park Zoo- educational and adorable!!

Determined to jam us much into our weekend as possible, we went from the zoo to the beach!!

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!

Millennium Park is also home to the most artistic splash pad I have ever seen! 

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!

Max in his classroom on Meet the Teacher night

First Day of School Pictures!

Chapter 23: Shouting I love you

During 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.

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.

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. 

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.  

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.

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.  

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!  

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.

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.

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.  

Chapter 22: Extreme Parenting- Life in our Gameroom Hospital

Four 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.

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.

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...

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.

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.

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.

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.

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.

Chapter 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.

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.

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.

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.

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.

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.

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.

Chapter 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.

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.

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!

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.

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.

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.

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.

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.

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.

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.

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.

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.

Chapter 19: Losing their Appetites

Sometimes 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.

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.   

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. 

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.   

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.

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. 

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.

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...

Chapter 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.

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.

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.

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.

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.

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.

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.

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!

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.

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.

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.

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.

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.

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.

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.