Saturday, June 28, 2014

Chapter 17: The Tale of Two Hearts- Part 1

There are few stages in our NICU time that I would describe as being sad or depressing.  After the initial days, we had truly settled in there and my memories of those 8 months are of friendships, support, laughter and growth and healing for the babies.  There were exceptions, though, of course.  The week after the babies had their kidneys out and started dialysis was an overall stressful and sad time for me.  Surgery recovery was dragging along, with Max continuing to have multiple Max Attacks a day requiring bagging. He was objectively doing as well as we could have expected for so much change but our happy relaxed boy had yet to return and it did take a toll watching his daily color changes and discomfort.  While Addie had initially seemed to cope well with surgery, dialysis seemed to be leaving her puffy and tired and void of her usual smiles and playful spirit.  The days seemed to stretch on with neither baby being happy and with the hourly turning of clamps and draining of water that made dialysis seem, while not overly dramatic, incessant and constant.  They were requiring around 20 hours of dialysis at this point so it seemed very consuming. We knew this would be our reality until transplant so the ever present bags of sugar were doing little to brighten my mood.

The darkest cloud over me during this week though was still my grief over their reported deafness. The tears had long dried up and been replaced with a numb ache and a cloud of discontentment.  There was lots of talk among the doctors trying to understand why and the best explanation seemed to be that the aggressive IV medications they had been on for months had taken their toll on their hearing.  I suppose that explanation had its comforts in that at least it was not a new totally separate issue that affected them.  Furthermore, those medications had certainly saved their lives so there was no regrets or what ifs associated with it.  The medications had been necessary.  The hearing loss was merely a cost of saving their lives.  Now that concept brings lots of peace to me but in that week when the information was so new, it did little to make me feel less sad for my babies and myself.  Some nurses tried to talk to me about sign language or tell me cheerful stories about deaf friends but that only encouraged me to dwell on it more.  It was clear my heart was broken over it and it was tainting my usually positive demeanor, which no doubt everyone could see.

I remember it was about 8 days after their surgery when we had this Saturday that just felt defeating.  Max continued to turn blue and be unsettled and Addie's mild unhappiness had escalated to her being unusually fussy and sad the entire day.  I updated Facebook more sparingly back then than I do now, usually only with cheerful photos to try and reassure everyone we were okay, but that day I put a post up asking for prayer because we had just had a rough few days.  A friend of mine later said that she knew it must have been rough and I must have been struggling because such candor and honesty regarding the difficulties of our situation were rare then.

Unfortunately, things were not going to start getting better any time soon.  The next day was actually Al and I's anniversary and Addie was more miserable.  She seemed quite lethargic and her skin had a greyish color. She wasn't smiling and although she wasn't screaming, she would let out the occasional sad whimpers. Her vitals seemed stable enough at this point- she had no fever, she was maintaining her oxygen levels and her heart rate, though somehow elevated, didn't seem to be too troubling given we knew she was uncomfortable. And yet everyone who knew her and saw her knew something was very wrong.   Al and I had plans to go for a nice dinner and celebrate our two year anniversary but neither of us could reconcile celebrating when sweet Addie was so clearly miserable.   We grabbed a quick dinner and bought a box of Sprinkles cupcakes and both spent the night at the hospital, holding her and hoping we were providing her some comfort.

The next day was the fourth of July and Addie was progressively worse.  Her whimpers had become more frequent and they now sounded like sad kitten mews- like she somehow lacked the energy to cry but had to let us know she was in pain.  Her breathing had a grunt behind each breath and while she still had no fever, her heart rate and breathing rate had both gone up considerably while her blood pressure had dropped.  It was now undeniable something was very wrong and the doctors ran the full range of tests.  The immediate concern was some sort of bacterial infection, perhaps pneumonia? that was making her breathing more difficult and causing her general misery.  But, the blood work that came back all seemed benign for such markers.  There was a lull at that point, nothing they had feared had turned up and no one was sure exactly which direction to head in now.  Our nurse encouraged us to go home for a few hours since we had been living up there and see my family on 4th of July.  While I know she hoped the break would restore my own struggling spirit, I just worried the whole time and called her to check on Addie constantly.  I was actually relieved to get back up there and determined I would just have to stay by her side and love her with all my strength until she got back hers.

Later Monday we got our first clue from a chest X ray.  Although her lungs did not look overly ominous, it was clear there was some fluid in them and that could be causing the grunting and greyish coloring.  More significantly though, the doctors noticed that her heart looked abnormally large on the X ray.  They were able to pull up a previous recent X ray and confirm that in fact her heart looked significantly bigger at present. It was the weirdest feeling because initially I felt very relieved that they had some clue what was going on.  I had found the confusion and complete lack of answers maddening but that relief was certainly short-lived as hearing these doctors talk about my baby's heart filled me with fear!  Certainly I was no stranger to hearing bad news about my babies' health or organs, and yet there is something instinctively frightening when it is their heart you are talking about.

Tuesday morning brought a series of heart tests, an echocardiogram and some specialized blood work, and Addie was even more pitiful.  The monitor showed that she was breathing 100 times a minute and that her heart was beating 200 times a minute- it was clear her body was working incredibly hard.  The sad kitten whimpers continued and her coloring was greyish and watching her suffer like that was breaking my own heart into a million pieces.  The test results were analyzed and the doctors came and talked to me and told me that Addison was in 'Congestive Heart Failure'.  How my own heart did not stop at that moment I will never know but those sounded like the worst three words I had ever heard.  While I was now an expert on kidney failure and had some fleeting experiences with respiratory failure, I knew absolutely nothing about heart failure.  But I knew enough about biology and the body to know that if your heart fails, you fail. More than any other diagnosis we had ever been given, this one just terrified me.

I did really completely understand those words at that time.  I understand it better now and realize that basically her heart had absorbed so much fluid (it was congested with fluid) that it was too swollen to pump effectively.  I am sure someone did try and explain it to me then but all I could hear was HEART FAILURE.  Those two words repeating in my head over and over.

I didn't break down and cry, though.  I was too scared for that and too overwhelmed.  I just sat there numb and nodded a lot.  I tried to process everything they were telling me as intellectually as possible while trying to block out my feelings and emotions to the extent it was feasible so that I can keep my composure and be the strong mom I knew Addie needed at that moment.  I remember at one point on that Tuesday one of our nurse practitioners came and sat down beside me and said 'I'm worried you don't understand how serious this is.'  She had mistaken my facade of togetherness for confusion over the magnitude of what was occurring.  Although I tried to assure her that I did understand, she continued to explain to me what we could lose Addie and that she may not make it through this.  Of course I fully knew that but having to hear it spoken certainly did ache my broken heart further.

My mom and I talked about it and both agreed that we couldn't put those awful three words up on Facebook or out there.  We knew they would inspire that same sense of sadness and panic in others that they did in us and we did not want our families and friends burdened to that extent.  And on top of that, I just don't think we could acknowledge them in that way.  Putting it in writing would authenticate the diagnosis in a way we just couldn't face.  We could hardly bear to say the words to each other or out loud. Congestive Heart Failure. It was just too upsetting.  So we told people that Addie was having some issues and complications and needed prayer but kept the true intensity of the situation to ourselves.

There was no easy solution because we did not truly understand why this had happened.  It was definitely suspected that it was related to her dialysis and excess fluid in her body.  It did not make medical sense though for mathematically we had pulled plenty of fluid off of her.  Her twin brother had experienced the same initiation to dialysis and he was not having this issue.  We had to question then if she had some underlying heart condition that had merely gone undetected until the initiation of dialysis.  Her kidney doctor felt that all the changes between losing her last kidney and starting dialysis had led to dramatic changes in her heart's structure and function.  There was a long explanation about the role that her thyroid may be playing. None of the hypotheses though came with a clear plan for a quick solution.  For Tuesday night, our goal would be to aggressively pull fluid off her with dialysis and to see if we could dehydrate her heart back to functioning.

Over night we effectively dehydrated her such that her eyes sunk in and she looked like a skinnier version of her grey sad self but the monitor and her kitten whimpers revealed we had not made any great progress.  She continued to breath 100 times a minute and her heart was beating excessively to compensate for how weak those beats were.  Amazingly she did keep her oxygen levels up but we knew it was wearing her body out to manage that.  I stood there Wednesday morning watching her struggle and feeling all the fears I had been trying not to acknowledge come at me at once.  The tears finally came and our favorite nurse Lori came and wrapped her arm around me and I told her what was weighing most heavily on my heart:

"I cannot believe I sobbed over her hearing.  I have spent the last week so upset over whether she would be able to hear and talk and how that would impact her as a teenager and that just feels so ridiculous right now. Now I might lose her before we even know all that and I don't care anymore if she can hear.  I really don't. I just want her to be okay.  That is all that matters to me anymore.  I just need her to survive and be okay again and I won't ever cry over her hearing again.  I don't need God to heal her hearing, I just need him to heal her heart."

It was a moment I will never forget and a moment I still think about when the sadness over developmental issues creeps back in.  On that day, Addie's heart had yet to be healed but God was working then on healing mine.

Lori reassured me that it had been normal and okay that I cried over the hearing but understood and agreed with me that right now we just needed healing for her heart.  She said all the right things and was a great source of comfort.  I grabbed her hand and told her she had to stay by my side all day and couldn't leave me!  She managed to make me laugh by expressing her concern over needing to pee at least every now and then!  But she did stay by my side all morning.  Al was on his way up and my parents were available but I also knew that seeing Addie like that would break their hearts too so I was actually okay right then with being there by myself with Lori there.  It felt easier not to see how painful this also was for all of them.

The doctors all came in and it was clear something needed to be done.  The best option we had to get her heart working more effectively would require a central line going into her heart to deliver constant IV medication that would stimulate it to work while we continued to adjust dialysis and try and understand what had happened to it.   There was, however, a significant risk in this plan.  It would mean taking her to the OR and putting her under anesthesia with a weak heart.  Anesthesia and the placement of lines right near her heart has risks any time but doing that when she was so clearly compromised was far riskier.  Her heart could give out with the added medication or manipulation.  But then again, doing nothing hardly seemed a real option.  She was certainly going to get worse and run out of time and we would all just be watching helpless.  The doctors gave Al and I the choice which I always both appreciate and hate!  On one hand, I know it is important for us to get to make those decisions and feel in total agreement with a plan.  On the other hand, they are such incredibly difficult decisions and I worry myself sick about whether I am making the right one.  Al was very supportive of whatever I felt was the right thing to do.

After praying about it, I felt pretty at peace that we should do the surgery.  In most of these instances, I would favor taking a risk that I believed could save or greatly help my baby over doing nothing and watching them suffer.  The doctors supported the decision and plans were made for her to go to surgery that afternoon.  The NICU doctor who was on service at that time was known for anything but his bedside manner or compassionate approach.  He was a great doctor, no doubt, but his manner was abrupt and he had never seemed particularly warm towards me or my kids.  But that afternoon as we prepared for this surgery, he was particularly attentive and kind.  In fact, as Addie was wheeled down to surgery, he walked with Al and I down there.  And he stayed down there and talked himself to the surgeon who would be doing the procedure (it was actually an interventional radiologist) and he stood there with us waiting for them to take her in.  I was so enormously thankful for him being there as I knew he was carefully explaining to the anesthesiologist and surgeon the seriousness of the situation and making sure that everyone knew what they needed to ensure a safe experience.  And yet, at the same time, his unusual interest and support also reinforced to me just how serious this was.  I knew if he was sure Addie would be okay and if this wasn't a huge deal, he would have been with the other babies who needed him instead of us.   I wished very much we did not need him there at that moment and yet was so grateful that given we did, he was there for us.

Addie did fine in surgery and came out with a large line coming out of her femoral artery in her thigh.  It was large and sad and Al cried when he saw it and just kept saying 'but she loves to kick her legs'.  But, it sad as it may have been, it was delivering several important heart medications around the clock and hopefully helping her exhausted heart continue on as we continued to try and figure out what had happened.

The medication did provide some necessary short term relief for her heart and within a couple of days, her vitals had improved, her coloring had improved and although she was far from 'herself', the cat whimpers had disappeared and occasional smiles were spotted.  We were all breathing huge sighs of relief, certain the worst was past and disaster had been averted.

Our celebrations were premature though.  For while Addie's heart would be healed and mine along with it, it was not time yet.  These couple of days would provide a necessary break before things would go terribly wrong again.

Sunday, June 22, 2014

Chapter 16: So This is Dialysis?

Sometimes I still forget that most people have no idea what dialysis actually entails.  I have a tendency to casually refer to the kids as having been on dialysis like they will obviously know what that would mean.  In doing so, of course I forget that I once upon a time would not have know what that meant.  The word sounded daunting enough that I would have assumed it was very dramatic.  I probably would have pictured an enormous, intimidating loud machine and a child wailing in pain and lots of surgical masks and general anxiety in the air.

In reality, dialysis actually looks from the outside deceptively simple.  The babies were started on peritoneal dialysis which is a form of dialysis that essentially involves no more than putting water into the babies bellies and then pulling it back out again.  Hemodialysis is considerably more complex in set up and nature but peritoneal dialysis can basically be done with a bag of sugar water and a tube. I think that the part of dialysis that most people found so surprising was just how simple it actually is- as long as it is working, of course.  Dialysis seems amazingly easy when it is going smoothly and terribly complicated and confusing when complications arise.

We were actually lucky to get a 'sneak peak' at what dialysis would involve because we shared a NICU room with a baby who was already on dialysis.  This sweet baby boy had been on dialysis for several months by the time Max and Addie would begin.  And so we were able to both observe what was going on in his corner of the world and ask his mom questions as we approached the time to begin dialysis.  We knew that there was no fan fare, alarms and drama when their neighbor went on dialysis and I think it definitely reassured us.  Had we not had that daily experience of seeing his life on dialysis I know we would have been way more frightened so I am thankful that God placed us in the same room with that sweet boy so that his journey could provide reassurance for us.

Without kidneys, a person cannot pee at all.  It's a weird concept, especially when you are looking at a baby in dry diapers!  Without peeing, two things build up in the body which cause problems- water and waste products.  Our dialysis buddy in the room still had his kidneys so he did still pee and could get rid of water on his own but his kidneys just did not effectively filter out waste.  So dialysis actually had a smaller role for him.  But for Max and Addie, they would rely on dialysis to get rid of all fluid and all waste that accumulated in their body.  The premise of peritoneal dialysis is that you can place sugary water into the person's abdomen and as the blood circulates through, the magic that is osmosis and diffusion will pull both toxins and water out of the blood and into the sugar water.

I'm erring on the side of simplicity in explaining this, although I have done an hour long presentation to the 9th graders at my school explaining the process in terms of the principles of osmosis.   But without my PowerPoint full of diagrams and without risking boring you to tears, it can be difficult to go into it with that level of scientific detail.  So I'll stick with a more basic understanding which is definitely all you need to understand the impact that dialysis had on Max and Addie and on our family.

After approximately an hour, the once pure sugar water is now full of wastes and extra water and cannot really do its job anymore (a phenomenon called Equilibrium).  At this point, that old water needs to be drained out of the body and replaced with new sugar water.  Which will sit for an hour, and then be drained. Which is really all there is to dialysis.  Fill the belly with sugar water.  Wait an hour.  Drain.  Fill with new sugar water.  Rather, Rinse, Repeat...

Initially, this process was done by their nurses.  I will always remember their first day on dialysis, it was a Sunday and instead of sharing a nurse, they would each have their own nurse.  Max had our favorite nurse Lori and Addie had a nurse we did not know as well but who was familiar with dialysis.  The time came to begin dialysis and the nurses very simply open a clamp, placed a bag of sugar water on a pole and allowed water into the babies.  Then they set their little hand held kitchen timers and we sat there.  And that was all. It was so amazing to me that this moment we had so anticipated and so built up was so incredibly boring!!

After the hour was up, the nurse would then drain the water out of the body by turning another clamp.  The nurses made it fun and turned it into a competition to see whose baby could drain more which I remember finding very funny and was very appreciative for anything to add a bit of energy to this process that I was otherwise finding to be monumentally dull!  And the afternoon passed like that- clamps were turned, the babies were held and life continued absolutely like normal except for once an hour when the big drain would happen and we would all wait to see who baby would win that round.  (I am pretty sure Max won Day 1 on dialysis which is most appropriate because Max was definitely the dialysis golden child in the long run!)

Over time, we would be able to get a machine to do the job those nurses were doing- filling and draining the babies at set times but it would be a couple of months before we would be able to switch to the machine.  So for now, it would be lots of idle time with our two nurses, lots of unexciting turning of clamps and some bags of little more than clear kool aid.   So when I would tell people the kids were starting dialysis I always thought they probably imagined it being way more dramatic and exciting than it was!

Like i mentioned earlier, though, the key with dialysis is that it is simple when it is working well.  The first couple days on dialysis lured me into a false sense of security really.  I was so underwhelmed by the process that within a few days I had abandoned all my worries and fears and decided dialysis was easy and things were all going to be sunny and rosy from now on.  Never did it occur to me that this simple sugar water turning clamps process could go wrong in as many ways as it would.  Sitting there bored on that first Sunday was not preparing me for the weeks that were coming when the difficulty of finding the right fluid balance would send my baby girl in heart failure.

I think I will always have a love hate relationship with dialysis.  Dialysis kept my babies alive so I will always be grateful for the medical advancements that led to it being able to be used even on babies.  And when it worked well, dialysis was blissfully simple and painless and we were able to continue with life as normal quite well on it.  However, at the end of the day, dialysis can never replace a kidney and is a flawed process.  And when it doesn't work, it can lead to terrifying life threatening crises.  My love and gratitude for dialysis can only be matched by how haunted I will always be by some of the horrible scares Addie had while on it. But, complications and limitations included,  I do know that dialysis was monumental in our journey and that it was necessary to sustain our family while we waited on transplant.  So for that, I will ultimately always be glad for those bags of sugar and clamps that did the best they could to play the role of the kidney understudy those months in Max and Addie's story.

Friday, June 13, 2014

Making Plans Again

If you had told me 6 months ago how happy we would be right now, I would have found it hard to believe.  I would have wanted very much to believe it and it probably would have helped me to hear it, but in the midst of the storms we were travelling through, I would have struggled to imagine being in a place where we were not just enjoying each day but actually dreaming and planning again.  And yet here we are.  Truly blessed. Genuinely hopeful.  Planning for the future.

Without rehashing a story that if you are reading this, you most likely already know, life had beaten us down to a point where we did not plan anything anymore.  Once upon a time, Al and I were dreamers and planners.  But, reality swept in and those dreams and plans were taken as collateral.  The new plans that replaced them were important but lacking in the same excitement.  Certainly it took tremendous planning to get the children transplanted and to adapt our lives to their needs.  And we had moments in between where we would defy logic and boldly plan for a family activity or trip.

Unfortunately, though, any fun plans seemed to be met with constant cancellations and disappointments.  Last year I literally think that every single time I planned to be out of state or at an important function, Max was in the hospital.  By the time we were plowing through November's drama, we had decided that having booked both a concert and a photo shoot for that weekend was more foolish than it was endearingly hopeful.  And although we earnestly tried not to lose our hope or happiness, we stopped making plans.

We lived for each day.  We tackled our circumstances with as much grace and strength as we could muster. And we survived and managed to make the most of the days.  But we did not dare plan anything for the future.  We tried very hard to not even think about the future.

We met with a doctor who specializes in dealing with kids with chronic health issues in January.  He wanted us to make plans.  Oh but not the kind of plans you want to make.  He wanted us to be prepared and have plans for a list of terrible 'what ifs' we could be facing, particularly if Max's breathing issues did not stabilize.  We had some painful conversations and although we understood the merit of planning before, we decided we could not do that.  No planning.  No thinking about that future.  Live today.  We couldn't plan for good things but we wouldn't plan for bad either.  We were determined just to develop tunnel vision for the present.

And then something happened.  A gradual but amazing miracle occurred. Max got better.  His breathing stabilized.  His BiPap machine has made a HUGE difference.  We can tell he is sleeping so much better and has greater energy and awareness during the day.  We worried it would not be sufficient and we would have to start considering other possibilities already but it really did work for him.  The infections which seemed so constant just stopped.  The thermometer no longer lingers by his bed waiting for the next fever.  Sure, his disabilities are still there but he is feeling great!  As the weeks of this new non sickness passed, we cautiously rejoiced.  So relieved for what we were seeing and still worried what the tonsil surgery would do to disrupt our sweet stage of stability.  We mixed our relief over his progress with our dread over another surgery.

But then to our great shock and excitement, surgery went really smoothly!!! And now it's been a month since surgery and he is breathing better than ever, tolerating his BiPap machine better than ever and by far, the happiest we have EVER seen him.  EVER.  In the over three years of his life, now is the BEST he has EVER been.  It is just hard to explain how amazing it is to see him transform from this very sick, weak and less engaged child 6 months ago to our happy laughing little boy!  We will catch him just randomly laughing so much he gives himself hiccups- over seemingly nothing!!!

We have watched all this with amazement and nervous excitement.  Could this really be true?  Could Max really be this happy?  Could he really not have been to the hospital in a month? Then in the last week, we decided to stop watching with our breaths held, afraid for when the 'next shoe' would drop.  We decided it was time to embrace it.   So we went a little crazy.  We celebrated with reckless abandon.

We planned.

That's right.  We dared to dream.  We looked beyond today.  We glanced into the future.   And we decided it was time.  To plan for one.

We have a lot of exciting ideas and plans from Family Fridays to some big trips in mind.  Next week Max is going to have his first stay by himself to be spoiled at Nana and Papa's so Al and I can take Addie to Sea World.  We are going on a big family vacation in Tennessee next month and there is a plane ticket with Max's name on it.  And are you ready for the really wild part?  There is a professional photographer booked! Gasp, insane I know!!  We are hoping to see Max start going to school with Addie next year.  And we are dreaming up and planning a trip to Australia finally!

We have not developed a total case of amnesia so we are well aware that any of our plans are subject to change.  We know that things could happen.  And we're okay with that.  We're just excited to have plans. We are excited to be excited for the future.

Six months ago we were grateful just to be surviving each day.  Today, we are making plans.  God is so good.  We are so blessed.

Sunday, June 8, 2014

Chapter 15: Grieving Silence

One of the greatest heartbreaks and challenges I have faced began through an innocuous unplanned completely non dramatic routine test on a random day in the NICU.  Being used to crises coming at us with flair and intensity, this one snuck up on us and caught me unaware.  It was a normal day in the life of my giant NICU residents and a technician entered their room to do a standard newborn hearing test on one of their neighbor babies.  While they were there, someone realized that despite being 5 months old, Max and Addie had never had a newborn hearing screen so hey why not go ahead and get that done.  There had been no mention of concern, no talks or plans to have this test done.  I was not even there at the time and no one mentioned that it was going to be done because as far as we all thought, they would pass and it would just be something to tick off as done.  No big deal.

Except they didn't pass.  At all.  They both failed their newborn screen in both ears.  And I show up at the hospital to hear these concerning results to a test I never knew was happening and had never even thought to be worried about.  I probably should have been really upset then but the nurses and doctors all reassured me that the test was not particularly accurate or informative and that all it means is that they would do another more detailed test to determine what was going on later.  So, because it hurt too much to think about and consider that test actually being correct, I clung instead to my dear old friend Denial.  I did my own highly scientific tests of making loud noises and checking if they startled or responded and decided clearly this was a more accurate measure than their fancy machines and so I dismissed that test and determined not to worry about it until we got the 'real' test done.

The sedated ABR would be a brain wave test that would be done when they were asleep to see if the pathways that carried sound messages from the ear to the brain.  Given we wanted to reduce the number of occasions that we exposed the babies to any kind of sedation or anesthesia, the idea was crafted to perform this test on the day of their upcoming big surgery to remove their remaining kidney.  Brilliant plan!  Especially if your goal was to create the single most stressful day of all time for the mom, it was essentially a fool proof pathway to success.

So with that hearing test on the schedule for a month away in June, I forced myself to forget about it until then!  Hannah's visit certainly helped and by the time the big day arrived, I had rehearsed my own denial enough times that I genuinely expected to get great results.

June 25 was the day their last kidney would come out.  While we had hoped that taking out their first kidney would perhaps reduce their protein loss enough to delay dialysis, it really showed little impact.  They were continuing to lose too many proteins to leave the ICU and they were constantly in danger of too many life threatening issues.  Removing the other kidney would be the only way to stop the protein loss that was sabotaging their health.  Of course it would come at the cost of losing the ability to remove wastes and water from the body.  A dialysis machine would then need to take over that job.  They had the catheter in their bellies for that and it was healed and ready so it was time.   It was a strange feeling approaching the removal of their kidney and beginning dialysis.  On one hand, we knew it was necessary for them to come home so I was excited to get it done and move in that direction.  On the other hand, we were lunging into a huge unknown and there would be no turning back.  And we had heard enough about dialysis to know that for some it worked smoothly while for others it was ridden with complications.   And regardless of the outcome, I knew now from experience that sending both of my children to the OR for back to back surgeries was going to make for a brutal day.

The day arrived and we had one of our favorite nurses on and I do not remember much of the day prior to Max's return.  By this point, we had done a huge surgery day and enough small surgery days that the nervousness and dread of the morning of had lost its novelty and intensity and I was saving my energy for their return.  So after a morning of waiting and trying to distract myself with Addie, the moment I was dreading came and they wheeled Max in on his ventilator with a new incision on his body and him looking completely out of it and changed.  As those familiar tears started to well up as I saw him and had to hand over Addie for her turn, a doctor who was helping wheel him back picked that moment to tell me that they had done the hearing test and he did not hear anything in either ear.

I believe words are powerful and I often believe I can use them to portray strong emotions.  But I am certain I lack the words to describe what that moment felt like.  Partly because looking back on it now, I can see how they were not telling me the worst news I would hear.  Now I can look at it and see how I should have responded.  Oh but that is now and this was then.  And it felt like I had just been shot through the heart.  My emotions were already on edge and I just could not handle this news.  My denial was demolished and I cannot even fully explain why but it broke my heart.  And it crumbled my stoic composure and I just started sobbing.

And sobbing.  And sobbing.

It was to this day, the only time I have ever truly just lost my ability to snap out of it.  It was the only time in 8 months that random doctors and nurses had seen me just a complete emotional wreck.  And for a while, nothing anyone could say felt comforting.  I would eventually regain my composure but not through acceptance and comfort with the news but merely from sheer exhaustion and numbness.  As I had already assumed, Addie came back from the surgery with the exact same report- profound hearing loss.

The best I can explain it is that despite all we had been through, until that moment I had still fervently believed our future was going to be 'normal'.  I had already determined that we would get them both transplanted and that after that, my life would go back to looking exactly like I had imagined it to be.  Two years of difficulty and then it would all just be sunshine and perfection after that.   Even though doctors had told me their kidney condition would have life long impacts, I didn't really believe that.  My life was going to still be normal.  And back then normal still felt really important to me.  And the news that my children could not hear caused an enormous disruption in my plan for a typical life.  It suddenly meant that there would be challenges long term.  Life was not going to just turn into my previous vision.  I grieved for the loss of my so cherished hope for normalcy.

And I grieved for silence.  I love to talk.  I love music.  I love laughter.  I love Hearing.  And when I heard that my sweet babies could not hear, I imagined them living there in that hospital for six months in SILENCE and the idea just broke my heart.  That they weren't hearing me tell them that I love them.  That they couldn't hear the stories we read them and the comforting words their sweet nurses whispered to them.  I mourned that they were trapped in silence.

We told our parents and the other nurses and no one else.  I did not know how to tell people.  To compose a Facebook post to say that my babies do not hear was impossible.  I did not yet have a blog to allow me to elaborate on such things.  And there was definitely no way I could talk about it with people and find words in the midst of the pain.  So for months, it was our private burden and pain.   And at that point, it needed to be. My journey to peace and acceptance over their hearing loss was going to take time and I am glad I allowed myself the time to mourn and hurt and work through all those very real emotions before I began including others on that road.  I am glad that by the time I shared the information, I was able to portray it as a challenge but not a devastation and as something that would impact my children but not as something that would define them.

The rest of the evening after their surgery passed in a flurry of emotions.   I was so caught up in obsessing over their hearing that I was notably less affected by the surgery after math.  Max was taken off his breathing machine early and did considerably better than he had after his last surgery, with fewer dramatic blue spells and better pain control.  We knew we would wait a day or two on dialysis so the next 24 hours were for letting the babies rest and heal.  And by all accounts, they were doing well on that task.  I remember sitting in the NICU late that night looking defeated and troubled when one of the nurses I loved came in and assessed how Max and Addie looked and then questioned me.  She asked me 'What is wrong? Look Max is extubated and he isn't blue and he is resting and they both came through surgery without any problems! This has been a good day!" and morosely told her about the hearing test.  I guess I expected her to cloud over with pity and sadness and give in to my defeat but she continued smiling at me and said to me, "Well that's ok.  You can deal with that.  But for right now, for today, they both just survived major surgery and are doing great and that is worth being thankful for."  I wish I could say my attitude completely changed then but it would take more and longer than that.  It did, however, give me the boost I needed to for that night anyway, to take a break from grieving their silence to acknowledge with gratitude what all they had survived that day.

That day was a painful part of the process of demolishing the ordinary dreams I had so valued for my family.  I sat that day crying at what I was as brokenness.  It would take me a long time to realize that God was knocking down my lesser vision for His greater plan for an extraordinary life.  I will always remember the heartbreak of that June day, but I can now see it's role in a beautiful new creation as well.

Sunday, June 1, 2014

Chapter 14: The Light in the Middle of the Tunnel

The Light at the End of the Tunnel.... it's a commonly used phrase because everyone who has been through a particularly challenging stretch in life knows the importance of looking forward to an end to the trial.  When we can see the end or the promise of a new beginning, we have greater strength and endurance to keep walking through the darkness towards that light.  Without a light, tunnels seem to stretch on indefinitely and the perseverance and hope to keep trekking can seem impossible.  I remember vividly Al and I lying in bed at night the first couple of weeks after the babies were born and him saying "2 months.  We can do it.  2 months and it will be their due date and they'll be home from the hospital and everything will be how it was supposed to be.  We can do this for 2 months."  It was like our little mantra those early days when preemies and the NICU felt so overwhelming.  We would just stare into that light and keep on.  And then within three days, the babies were suddenly diagnosed with a lifelong and life threatening kidney condition and were transferred downtown and Dr Doom and Gloom was saying 6 months to a year in the hospital and that is assuming they survived the long list of risks.  And we couldn't see the light anymore.  All we could see was a long dark tunnel full of twists and turns that we were afraid to navigate our way through.  We had no idea when they would come home and we felt like we did not know what to look forward to or how to stay hopeful.  Without a light, the tunnel felt defeating.

But one lesson I learned then and still cling to is that you won't always have the sight of a light at the END of the tunnel.  Sometimes there are just too many bends along the way to get a glimpse of it.  Some tunnels are so far reaching that there may not truly even be an end.  But, there will be lights along the way.  Instead of straining your eyes to see to the end, I have learned to look for a light in the middle.  The tunnel may not be over but it's a point where there is a break and a moment of light along the way.  And those lights during the tunnel will sustain you far more than just charging to the end ever would anyway.

The day after the meeting with Dr Doom and Gloom, I caught a glimpse of what would be my biggest light in the middle of our NICU tunnel.  Knowing how scared and overwhelmed I was, my best friend Hannah from Australia called me and told me she was coming out to visit me and stay with me for a couple of weeks.  She told me I could pick when and she would be there.  It was exactly what I needed to hear that day! I had lived in Australia for 10 years, lived with Hannah for several years during that time and since living in America only two years at that point, no one had come close to filling her shoes. Since I knew I would be going back to work and I knew this road was going to be long and I would need something in the future to look forward to, I picked early June.  Hannah booked her ticket that week and my calendar suddenly had this big light shining up June.

I had no idea when my babies would come home.  I had no idea what dialysis would be like.  I did not know when they would get transplanted or anything about the future.  I wasn't sure what to look forward to with them so I looked forward to Hannah's visit.  For months on hard days, I would count down weeks and then days until she was there.  When I did feel myself getting swallowed by the dimly lit tunnel, I looked to the light of her arrival to keep my spirits up.  And it worked.  I just cannot describe what a blessing that joyous anticipation was during those months.  I hadn't realized until Hannah booked her flight how much I needed my best friend and how much it would mean to me to have her there in my NICU world lighting it up with her sense of humor and empathy and ability to find joy in all circumstances.

June rolled around.  The babies were stable.  Taking one kidney out had not had a huge impact on their health (which we expected but had hoped none the less it would) so we knew we would be removing the other kidney and using their now healed dialysis catheter soon.  We were basically just waiting for their late June surgery date with all kinds of apprehension at starting that process.  School let out for summer so I was no longer torn between my two worlds and Hannah arrived that week.  I could barely contain my excitement seeing her there in baggage claim, my bright light finally being there in front of me.  And of course even though it was like 10pm and I told her we could go home and sleep she was like 'Nope I want to go to the NICU and see those babies now.  I don't care if they are sleeping, I just need to see them!' Sharing them with her and seeing her love them and hold them and delight in them brought me more joy than I could hope to explain.

The next two weeks were just pure joy.  We had found happiness in our hospital routine and our days had been sprinkled with laughter and contentment even despite the difficult circumstances but nothing compared to the joy of those two weeks.  Every morning we drove nice and early down to the hospital and Hannah and I would hold the babies and play with them while the doctors made their rounds.  Hannah took as much joy as me in picking outfits out for them each day and capturing their expressions on camera.  She would help me feed them and point out funny things going on with them or around us that would make me laugh and see this new world in a whole new light.  She herself is a doctor, a psychiatrist who was fresh out of medical school, so rather than finding the medical side of things daunting, she found it fascinating.  She would soak up details and I reveled in having someone anticipating lab results with the same enthusiasm I did.  She created nicknames for the doctors and nurses that to this day make me laugh when I think about them.  Instead of feeling like living in the hospital every day was depressing, she made me see all the humor and joy in it and I was now pretty sure our daily life had more comedic material than a Seinfeld episode.

Every day for lunch we would leave and go have a delicious lunch at the nearby shopping center. We would stroll the shops and she was fascinated by all the American clothing and sales.  It was the first time I had shopped in 6 months and it felt so refreshingly normal.  We would head back from our lunch break to then spend the afternoon back with the babies, taking turns feeding them, changing them and making them laugh.  Al or my parents would come up many afternoons and reveled in the new joy that Hannah was bringing to our old routines! She never rushed me to leave or go do sight seeing or fun activities.  If I wanted to stay at the hospital until late and rock them to sleep, she would stay with me.  If the babies were asleep early or super stable and I was up for leaving early, she was always up for a pit stop on the way home at a cupcake shop on her quest to find the best Texas cupcake.   Some nights we would go out for novelty dinners, some nights we would come home and Al would cook for us, some nights we would meet my parents or friends.  But every night we would stay up sitting in front of the television laughing about anything that came to mind like we had for the 2 years we had lived together in college.  And every night for those two weeks, I went to sleep happy.

I had my greedy moments where I felt sad that my dear friend was going to have to leave and go all the way back to Australia.  I wished desperately that she lived close by and that they wonderful days could be more frequent.  But, I did not want that sadness to taint the joy so as her leaving was approaching, I focused on just making the most of every day.  I will always remember her last morning and us sitting up at the NICU with Addie in her arms and her lamenting how much she would miss her.  Hannah's suitcases were packed and she was dressed for her flight and so of course Addie chose that moment to spit up all on her.  Being the good sport she was, Hannah just laughed and said that now she would be extra sad the whole flight when she kept getting whiffs of Addie's spit up on her and missing being with her.  I dropped Hannah off at the airport and sobbed and sobbed the whole way back to the hospital.  I would miss her dreadfully sitting in my NICU chair the coming days without her there making me laugh with her running commentary on NICU life.

Thankfully though, the light and joy that Hannah brought did not go away when she left.  She left me with greater joy, an ability to laugh at the world around me and a renewed spirit.  It would be 18 months before I would see Hannah again and I miss her every day I do not see her but my weeks when she is here are God's gift to me, his lights he plants during particularly dark moments in this road.  Hannah and I had no idea when we picked those weeks in June that within two weeks of her leaving, I would be facing the worst couple of weeks of my life with Addie's heart failure.  We picked dates out of convenient but I know God ordained those dates because I would need those two weeks of joy to survive the two weeks of heartache coming.  My two weeks in June were definitely not the light at the END of the tunnel but it was my light right in the middle of the tunnel. It was my refreshment and my break and it kept me sane and reminded me that no matter what you are going through, there will be laughter, friendship and joy along the way.