Saturday, January 3, 2015

Chapter 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.

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.

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.

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.

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.

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.

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...

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.

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.

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.

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.

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.

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.

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.

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.

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.

Sunday, December 28, 2014

Chapter 26: Because Staples are for Papers and not for Lungs

During 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.

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.

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.

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.

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.

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.

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.

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.

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.

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.

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.

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.

Friday, October 31, 2014

Embracing a Blank Canvas

Four 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.

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.

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.

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.

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.

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.

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.

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.

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!

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.

Saturday, September 27, 2014

Chapter 25: The Day when Everything Changed for Addie

The 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.

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.

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!

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.

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.

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.

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.

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.

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.

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.

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.

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.

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.

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...

Saturday, September 20, 2014


My name is Alister Graham. And I am Batman.

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.

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.

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.

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.

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.

Batman is an orphaned, billionaire, vigilante, scientist, engineer, businessman and martial artist.  OK.  You got me on that one.  Moving on...

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.

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.

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.

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.

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.

My name is Alister Graham.  And I am Robin.

Sunday, September 7, 2014

Chapter 24: The Last Night I ever Slept in Sexy Jammie's

I 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.

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.

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.

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.

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.

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.

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!

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.

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!

Monday, September 1, 2014


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.

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!