I can never sleep the night before Charlie’s birthday. I go to bed feeling carefree and happy and wake up in the middle of the night, as I’ve done again, in a fit of weird dreams and anxiety. Oh, Charlie’s birthday itself will be fun, we’ve already started celebrating, but I seem to have some kind of permanent cell memory about that terrifying day exactly three years ago when Kendall woke me at 4:30 am when she was only 24 weeks pregnant, complaining of weird pains. The pains were getting stronger and stronger so we jumped in the car and headed to Cedars, convinced we’d be home by 9 am. We weren’t. After trying all sorts of extreme measures to stop the labor, they wheeled her away and performed an emergency C-section. I’ve written about that day several times so I won’t go into detail again, but the memory of that trauma is still there, as much as I’d like Charlie’s birthday to only be about joy at his arrival.
Charlie’s whole life is about joy but I just can’t pretend his birth day was anything but terrifying. I also can’t not think of his twin brother Oliver on this day and what it felt like to stand there and watch the two teams of doctors and nurses working simultaneously on our sons. Charlie’s team looked serious and busy while Oliver’s team seemed increasingly worried and desperate, constantly calling in other people to take a look and try something new. But despite all their noble efforts, Oliver died 12 hours later. I will never forget how his seemingly weightless one-pound body felt in my arms. I can see the incredibly compassionate NICU nurses taking his body and gently pressing his tiny feet onto an inkpad and cutting wisps of his blonde hair for his memory box.
And then there was Charlie—fighting to survive at just over a pound with severely underdeveloped lungs and his eyes still fused shut. The sterile confines of the Cedars-Sinai NICU would be Charlie's only home for the next five months, through his Level 3 and 4 intraventricular hemorrhages (IVH) or “brain bleeds,” his necrotizing enterocolitis (NEC) which caused him to have a colostomy bag for several months, the constant manual tapping of his built-up cerebrospinal fluid as a result of the brain bleeds until the placement of his ventriculoperitoneal shunt that he still has and which is still presumably draining the fluid into his peritoneal cavity.
I mention these medical terms, not just because they’re forever seared into my brain, but because I want parents in a similar situation who are desperately Googling these words to find this post. I want them to find it because I want them to see how great Charlie is doing three years later, knowing how I constantly searched online for stories other babies with the same problems to see what happened to them in the years that followed—desperate for anything that would give us hope, especially with all the dire predictions and prognoses we were hearing daily. And there IS hope—tons of it! Charlie is such a miracle. In his most recent evaluations at the Regional Center which has been providing excellent services for the past three years, they looked at the physical delays he is still experiencing and said that compared to other children his age he’s significantly behind but making a lot of progress. But cognitively? After reading his medical history, the therapists were flabbergasted at Charlie’s verbal skills and his cognitive abilities and pronounced him at the 99th percentile (it can’t get any better than that!). Again, when I remember all the scary predictions and fears that he may never even talk, I want every parent of an extremely premature baby to know that while each situation is completely different, there is every reason to be optimistic about the future.
We'll go back to the NICU later this morning as we've done every year on Charlie's birthday so I can deliver the cake I made for the staff there who saved his life over and over again during those 136 days and cared for him so beautifully. How can our gratitude for something like that ever go away?
Here is a video I made when Charlie reached the 100-day mark in the NICU. It includes images of him from the very beginning. Some of those early images may be scary to some people but hey, it is what it is!
And here Charlie is now—the most loving, fun, bright, sweet boy on the face of the earth, very excited about his all-chocolate third birthday as he plays with an antique egg beater we have in our kitchen!
Happy Birthday, Charlie! We love you so much!