Chapter 7: Not in Kansas Anymore

After being blindsided that Saturday morning, I decided I needed to be more prepared for doctors coming to have talks with me.  So the next day when a nurse practitioner came to talk to me, I was very well prepared with proper clothing, a fed and snuggly baby in my arms and a serious and calm look on my face.  It was a demeanor I came to perfect and with very few exceptions, I was able to maintain through a lot of crises.   But on day two of my new reality, my cool calm and collected act was still a work in progress and I know I was shaking as I tried to sound intelligent and unafraid asking her questions about what exactly this kidney condition actually meant.

It was in that conversation that I started to really understand that dialysis might be a reality for my children, even though I still had absolutely no clue what that actually meant.  It was the first time someone mentioned a kidney transplant to me and mentioned that the babies would have to be a lot bigger for that to happen.  But most significantly it was the first time I understood that we were talking about a life threatening situation.  Because really hearing that there is a lot of protein in their urine does not really sound that terrible.  But as I sat there and listened to her, it started to sink in that this was no small foe we were up against.

The main thing I will always remember from that conversation on the day after was her telling me that the babies having been early might have saved their lives.  Her logic was that by being in the NICU, we discovered this kidney condition from bloodwork and not from symptoms or a serious infection.  She explained that some babies have their condition but it is only discovered once the baby is very sick and it is too late.  It was a very sobering thing to understand that we were talking about something that serious.  Something children died of.  I sat calmly and nodded.  And then sobbed the whole way home.  As I would do many more days in the weeks that followed.   There were days I just could not wait to get to my car so I could let down my facade of the emotionally composed mom I was using all my energy to keep up.  My car would be my little sanctuary where I allowed myself to feel and cry.  

I suppose the life threatening nature of what we were dealing with would have been more clear to me if I had gone home either of those two days and googled it.  I am no stranger to consulting Dr Google so I cannot totally explain why it was literally weeks before I would type Congenital Nephrotic Syndrome into Google.  I think I just knew it would be bad and I wasn’t ready to see it in black and white like that.  I didn’t want to believe it was something so concrete that it could be looked up.  I did not want to see words like dialysis and transplant and accept that reality.  So not only did I not google it but I forbid my parents from telling anyone the actual name of the condition so they couldn’t google it. As long as we just called it ‘a kidney condition’ and focused on the positive, all that life threatening part would just never happen.

That worked really well for 48 hours.  It was two days after the red robe day and I was very busy not thinking about kidneys and dialysis and pretending that life had not changed.  We were up at the hospital holding babies and Addie was uncharacteristically fussy.  She kept crying and the nurse was trying everything to console her and kept telling us that it was probably just gas.  I felt really unsettled about the whole thing and was worrying about her when we decided to leave for an hour to grab some dinner and then come back up for night feeds and bedtime rituals.  We were in the car coming back to the hospital when we got a terrible phone call that made no sense to me.

She started running a fever.  Quickly she got sicker.  She kept forgetting to breathe.  We had to put her on a ventilator.  She is very sick.  Her bad kidneys are removing her antibodies she needs to get better.  This is Very Serious.  She is not stable.  You may need to be at a bigger hospital with more pediatric doctors.  Get here as soon as you can.  This is a Very Big Deal.

There are a handful of images that to this day still haunt me.  One of those is walking back into that NICU where I had left Addie in a sweet pink onesie crying and moving and feisty and finding her now stripped only to a diaper, still and pale, with a tube down her throat.  It was the most horrible thing I had ever seen and I could not stop crying.  I did not understand what was going on.  I couldn’t even think clearly enough to realize I was worried she was dying.  I just felt hysterical fear.  I sat on Al’s lap and cried in his arms while we waited for what seemed like forever for the doctors to come talk to us. Those moments of raw emotion and grief became more rare as I got used to horrible images and scary twists and turns.  But that night is in my memory like a photograph, I can close my eyes and still see every detail.  And even now, knowing that everything will turn out okay, I still feel my heart rate accelerate and I still feel a lump form in my throat when I think back to that night.  Intellectually my life changed on the Red Robe Day.  From that fateful morning onward, I knew my life was different.  But emotionally the change happened two days later crying on my husband’s lap.  It became real seeing her like that. Nothing was the same as it used to be anymore and it never would be. That was the moment when I became the mom of sick babies.  I changed that night.

I also understand what the nurse practitioner was telling me when she told me that being early had saved their lives.  Because as much as I had wished Addie had been home with me in her perfect crib, I now realized that if she had gone from fussy to so sick she couldn’t breathe in a matter of hours at home, we probably would have lost her.  My empty arms those nights meant she was surrounded by nurses and doctors who were equipped with the machines needed to save her.  Everything that had seemed so sad now seemed like part of the plan to keep her alive and I had a whole new perspective on everything.

It was a crazy night.  Addie got better almost as quickly as she got sick.  The ventilator took away the concern about breathing and the IV antibiotics started to attack the Strep B infection she was battling. By the middle of the night, she seemed to have achieved at least a tenuous stability.  Once we were all breathing a faint sigh of relief, the doctors talked to us about moving to the big hospital in the city.  Up to this point, we were at the local Woodlands hospital where they were born.  It was 15 minutes from our house and while it had a good NICU, there were many things the big downtown hospital had that our smaller one just did not. There were kidney doctors there.  There were surgeons there.  There were infectious disease doctors there.  There were neurologists there.  There were 100 sick babies there.  Our small close by NICU just would not be able to provide the care Max and Addie would need.

So at 4 in the morning, Al and I followed the ambulance in his mustang to our new hospital, scared and overwhelmed. Within one day we had gone from feeling like this whole kidney thing surely wasn’t that big of a deal to seeing our daughter critically ill and realizing that driving an hour away to the big scary hospital was now part of our new very unwanted and terrifying reality.

Things were going to get better.  Quite quickly actually. We would settle into the big hospital and be so glad we were there. Addie would recover just fine and go on to have a great few months there.  Max would get help, great care and love there. But you could not have convinced us of that during the silent trip following the ambulance. Never had our beautiful ordinary dreams seemed so far away and never had our new reality seemed so unfathomably sad and frightening.