Saturday, April 5, 2014

Chapter 6: The Red Robe Day

If they ever make a movie of my life, I would like to play the day we found out about their kidney condition very differently.  I would like to be calmly sitting at their bedside dressed in nice clothing, looking focused and asking intelligent questions.  I really hope they do not portray me quite like I was- as this emotional, confused, distracted crazy lady wearing only this red fleece robe and trying feabily to nurse a tiny neonate all while getting life changing news.  I really wish you could get a little warning that your life is about to turn upside down so you could prepare to look appropriate for such a pivotal moment. But of course you rarely realize you are about to be forever changed in advance.  I didn’t even realize it at the time.  It wasn’t really until a few days later that it really occurred to me that life would never be the same again after the morning of the Red Robe Day. 

One reason why I was so unprepared for this turning point was that we stumbled upon their kidney condition quite accidently.  Perhaps if there had been a build up of symptoms and we knew the search for the answer was on, I would have seen being sat down with news by the head doctor coming.  I would have known to always be wearing more than a red robe while awaiting results. 

Ironically their kidney issue was discovered while looking into Max’s respiratory and neurological issues, which would end up taking us a full year to actually diagnose.  While no answers were showing up to explain his breathing or tight muscles, some bloodwork showed there was low protein in his blood and high protein in his urine, when it should be the opposite.  The doctors got in touch with the kidney team.  The kidney team quickly recognized the problem and felt that he probably had congenital nephrotic syndrome or leaky kidneys that dump protein that should be in the blood into the pee.  These were conversations that at this phase we did not know were occurring.  The kidney team also knew this was a genetic condition so recommended they run a blood test on his twin sister.

Prior to the red robe day, I knew Max would be a while still before coming home.  Breathing did not seem to be his strength and I had already sobbed the whole way home from the hospital one day when they told me they doubted he would make it home by his original due date.  But at three weeks old, Addie was getting closer and closer to coming home.  She was just mastering eating and seemed to be champ at breathing, regulating her own temperature and being adorable.  It was likely only a week until the perfect crib with its pink bedding and fairy mobile was inhabited and my empty nighttime arms were filled with her. 

For that reason the part of the red robe day that really caused me to lose it was this incredibly unexpected and devastating news that Addie too was sick.  I will never forget sitting there awkwardly trying to pretend I was mature enough to nurse my baby while talking to the senior most doctor and trying to digest this strange news that Max had some problem with his kidneys and protein.  And then he told me Addie had it too.  And I had to give Addie to the nurse because I could not stop the tears anymore.  And if there is anything more embarrassing than sitting in a red robe breastfeeding, it would have to be crying in a red robe breastfeeding.

That day I did not really understand what I was being told.  I think he may have said the word dialysis at some point but even if I had paid attention to that I certainly did not know what dialysis was.  The idea of transplant was never mentioned.  There was just a lot of talk about losing protein and growth problems, poor immune system.  He looked sad a lot.  The only thing I really understood leaving that day was that this was not good and that my bundle of pink would not be coming home in a week.

We did what you do when your world starts to crumble, you surround yourself with loved ones and hold onto as much denial as possible.  We had lunch with my parents and tried to explain it to them.  We all agreed that losing protein did not really sound that bad.  How bad could it be?

But for all our attempts to stay positive and dismissive, we also went home that night and I cried while Al moved the crib back up to the nursery.  Our dream had vanished and we couldn’t wake up to the reminder of what we had come so close to. 

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