I've always found it remarkable how quickly one can adjust to an entirely new set of circumstances and start to establish routines and a level of comfort. Hospital life that had once felt so daunting, emotional and stressful had within a couple of months become oddly comfortable and enjoyable. I was still on maternity leave so the lack of other stress and pressure in my life allowed me to immerse myself in Max and Addie's new world and to face the new challenges with an single minded devotion. I drove to the hospital with a sense of purpose, I fed and held my babies and savored each moment, I researched and made sense of everything the doctors told me, I befriended the nurses and made Max and Addie's little corner of the hospital look as home like as possible with their personalized blankets, painted wooden name signs and pictures and toys. Walking into their hospital room stopped feeling medical, it just felt natural. It was where I got to love on my babies and therefore I drove to the hospital with happy anticipation, excited to be where my heart was living.
Medically things had settled into a routine as well by late February. Addie no longer needed her feeding tube so she was drinking her bottles and acting like a completely typical baby. She needed two long IV infusions every day to replace the proteins that her kidneys were frantically dumping into her pee but if you did not see the IV line attached to the central line in her chest you would have no clue she was anything other than healthy and happy. Max was far less stable but even his Max attacks had become so frequent that it no longer felt like a crisis but rather merely an hourly event. Then I fed my baby, then we bagged my baby back to life because he stopped breathing, then I read to my baby and then it was lunch time... this was just how it was. And I was okay with that. I was remarkably happy even during this time. Most of the initial shock and pain of their diagnosis has worn off and the future hurdles seemed so far away that living in the moment, truly taking things one day at a day was very manageable and enjoyable.
In fact, I had so settled into my NICU life that I managed to be caught completely off guard when reminders did come that in fact my children were very sick and that they were in reality living in an Intensive Care Unit and that their precious adorable lives were indeed at risk. My happy routine came to a jolt in mid March when routine bloodwork revealed that Addie had virtually no white blood cells, meaning her immune system was essentially depleted. This began a panic fueled spiral of events. Initially they feared that this must be because she was currently sick and searched for a source of infection. When that quest yielded no answers, they decided that although not currently sick, she was almost certainly at imminent risk of getting sick as she lacked the ability to fight anything off. If I was unclear of how serious the situation was, the doctors harped on the phrase 'life threatening' and ensured that I quickly matched their level of concern and fear.
To try and minimize the likelihood of Addie catching any sort of infection from the other babies around her, she was moved into an isolation room. Essentially the solitary confinement of the NICU, she and Max were in separate room across a hallway. In order to be in her room, we had to wear plastic gowns and masks. Gone were the welcomed distractions of a busy pod full of other babies and families. Gone were the relaxing hours spent holding her or Max while playing with the other one. All the efforts to make our little hospital nook feel like home and we now found ourselves in a sterile white walled closet sweating under plastic layers worrying about when she would start getting sick and what would happen. The comfortable routine was so abruptly replaced with the sobering reality of living in an ICU.
Thankfully though, Addie's time in isolation ended up being only cautionary and she never became sick. And her release and freedom came from a very unexpected source. While most of the doctors were busy managing her white blood cell count and preventing complications from it, one neonatalogist (preemie specialist) started researching WHY Addie had such a low white blood cell count. She stumbled upon a very treatable answer. She proposed that one of the things that Addie's kidneys were dumping out was her copper binding proteins. This resulted in her having very low copper levels (for some reason this seemed to happen to her but not Max). Copper is responsible for stimulating white blood cell production in the bone marrow. Without copper, Addie's body was not continuing to make white blood cells and thus at constant risk of developing the life threatening infection we were all worrying about.
The solution was simple. Drink Pennies. We had to pour Copper in liquid form into Addie's nightly bottle. It make the milk smell like a roll of pennies. I felt so bad for my sweet baby as I held her and poured the penny milk into her and watched her scrunched up annoyed face that her beloved milk had been ruined! But, as soon as the Copper milk came into existence, Addie started making white blood cells again and she got released from her solitary confinement. I had never been so excited to be back in the normal NICU room full of babies, pink blankets and windows! It felt like paradise! And no one used the phrase 'life threatening'- well at least they used it way less! Who would have thought that drinking pennies could save the day?
Our little more than a week in Isolation was a turning point though in the course of treatment for Max and Addie. While we had been continuing with the plan of replacing what their kidneys peed out, the addition of this new copper dilemma and more medication led us to the point where we decided their kidneys were just causing too many risks and issues and it was time to move towards removing their kidneys and starting them on dialysis. It had become clear that despite the moments of finding comfort in this hospital life, that it was truly no way for them to live. For me, our time in isolation was the wake up call I needed that it was time to start looking at the more aggressive but more home based treatment alternatives.
The decision to move towards dialysis appropriately brought us back to a small conference room with our old friend Dr Doom and Gloom. I came to this meeting more prepared, dressed appropriately and well rested, and with a beloved NICU nurse sitting next to us for moral support. I was determined that it would be a better experience than our last conference room confrontation. We left the meeting with a plan. We would take their first kidney out on April 24th and place a dialysis catheter in their abdomen. Then we would wait a month or two and let the new catheter heal before we removed the second kidney and started them on dialysis. Our goal would be to have dialysis running smoothly and them both home before the end of that summer.
Although there is some inherent comfort that comes from feeling like you have a plan, we nevertheless left the meeting with a fair amount of anxiety. One of the characteristically melancholy things that Dr Doom and Gloom told us was that there are a lot of risks for babies requiring dialysis. He told us that 10 years ago, the likelihood of a baby on dialysis making it to their first birthday would be about 50%. While he say that things have improved in the last 10 years, I know Al and I both left with that 50% echoing in our heads. Two babies on dialysis. Please let them both get to celebrate their first birthday.
I'm glad we didn't know then how many close calls the next year would include. Although, I wish we had known then as well as we know now just how many miracles the next year would include.