After 137 days in the Cedars-Sinai Neonatal Intensive Care Unit, our son Charlie is scheduled to come home the day after tomorrow! Woo-hoo! There are a few things that could delay that departure a bit but today was the first time we were given an actual date. The fact that the date is September 11th freaked me out for about half a second, but I guess that infamous spot on the calendar will now have some added (and quite joyful) meaning for us.
The reason the doctors were reluctant to commit to a date until today is that we’ve been playing around with Charlie’s oxygen for weeks. As you can see in the above photo, he’s been off oxygen completely (except during feeds) and they were trying to see if he could go home without any oxygen at all. He’s just on the border of needing it but even though he barely gets a whisper (his flow is 1/16th of a liter for those of you who know what that means) it makes a big difference in his saturation levels. So, finally, minutes after making the decision to try to wean off all oxygen for two more days to see what will happen, the neonatologist said fuck it, she'll just send him home on oxygen for a while so that we can leave this week. (Okay, she didn’t actually say “fuck it” but that was the idea!) The photos here are the last ones you’ll see of Charlie’s unadorned face for a while—he went back on nasal cannulas just after I took them. I’m fine having him stay on oxygen for as long as it takes his lungs to fully develop. It just means that wherever we go we’ll have to shlep along his portable oxygen tank and the apnea monitor that will be connected to leads held in place by a large Velcro belt across his upper chest.
I am so full of excitement and emotion that I can barely speak...or write—I’m headed back to the NICU for our final 48-hour stint. It seems hard to believe that Charlie is finally about to head out into the world after arriving 16 weeks early last April. I will miss so many people in the NICU and am bursting with gratitude for all of the incredible individuals who kept our son alive all this time through their medical expertise, care, compassion, prayer, and positive thoughts. And the journey will continue with Charlie—we already have appointments for a whole new slate of medical professionals outside the confines of the NICU. Kendall and I both had to work through some feelings about leaving the place where our other son died (inches from where Charlie currently resides) but I know deep in my heart that Oliver is not stuck there in that hospital, he will be coming home with his brother in his own way.