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.

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