As of today, our son Charlie has spent 100 days in the Cedars-Sinai Neonatal Intensive Care Unit. What an incredible, terrifying, wonderful journey it’s been. And it’s not over yet, of course. Charlie’s shunt surgery is tentatively scheduled for August 12, his original due date. It’s also my sister’s birthday. I remember hearing that date for the first time in the doctor’s office last December and immediately calling Sue to share the news that our twins were expected on her birthday. Oy, I thought, two more Leos in the family? If someone would have told me all that was in store for us, including the fact that we’d have a three-and-a-half-month-old son who would be getting his fourth major surgery on August 12, I never would have believed it.
I went to a parent meeting in the NICU last night and met the mother of the one baby who has been there longer than us. When he leaves in a few weeks, Charlie will be the King of the Hill. The roller coaster continues its glorious ups and adrenalin-producing downs. Monday was a horrible day all around. Charlie did not respond well to his cerebral spinal fluid taps and was fragile and miserable all day and night. Yesterday was much, much better. When I arrived at the NICU in the morning I found my son swinging in a Fisher-Price swing and having a grand old time. He’s now on six out of eight bottle feeds a day. He has miraculously transformed from his low weight of one pound four ounces to a whopping six pounds.
I’m grateful that I’ve written so often in this blog over the past fourteen weeks because I can scroll back and see how far Charlie has come. Here is a brief video retrospective of Charlie’s first hundred days. I never posted the earliest photos because I thought they would freak people out but now I think it’s inspiring to see where he began and where he is now.
As I’ve mentioned, there is no way to know the extent or specifics of what Charlie’s brain damage (the Level 3 and 4 intraventricular hemorrhages—IVHs—he had at birth) will mean for his future development. The effects could be moderate or they could be severe, only time will tell. Is it some form of denial that Kendall and I treat him exactly like a perfectly normal baby? I say no. We are living in the moment and responding as best we can to our beautiful, responsive, loving baby. No matter what his future holds, he is perfect to us exactly as he is.
As anxious as we are to leave the NICU, I also find I’m experiencing something that is probably not that uncommon among NICU parents: fear of going home and no longer getting 24-hour expert care. The other day I was joking that we should all live our lives in intensive care. It’s the perfect set-up: being attached to monitors around the clock that let you know of the slightest abnormality, having nurses tending to your every need, and knowing that any ache or pain will be addressed by a world-class expert within minutes. As grueling as the last 100 days have been, I know I’ll also miss the NICU community. I have never spent so much time in one place. I wake up every morning with purpose and direction and there is no question of what I’m doing that day or where I’m going. I now walk through the different bays of the NICU feeling like Norm in “Cheers”—at this point I know the names of virtually every person I see and greetings are exchanged all around. I also know many of the parents and can’t help but follow the progress of their babies. It is a family, and as much as I can’t wait to make that final trip out the front door with our son as I’ve seen so many parents do, it’s weird to think that the moment we step out of the NICU we are no longer allowed back in, those doors are sealed shut. Even if Charlie were to go back to the hospital the next day, God forbid, he’d be part of the pediatric program.
Whatever journey we have ahead, I know there will be other communities we become part of, other parents and professionals from whom we will gain so much expertise and experience. Our story was devastating to us, and we’re still recovering from the shock and the loss, but we also have so much to be grateful for. Charlie is amazing, I have never met anyone with such a will to live. I love him more every minute of every day.
Happy 100 Days, baby boy!