Those chest tubes have really made a difference. In the past 4 days, we’ve seen Charlotte improve enormously—her color is lovely baby bisque, her vitals have been steady and stable, and she tolerated a continual decrease in the ventilator breathing assist.
The big update for the day—Charlotte passed all her respiratory challenges today and the ventilator tube was removed at 3 pm today! We knew it was likely, but we weren’t sure it would happen. When we walked in around 4:30, I gasped and poked at Philippe. He said, “What?!” and I pointed at the ventilator machine, lights off and pushed away from the bedside. We saw that before we saw our beautiful baby’s face, unpuckered, her little pink mouth pursed in a cry. Then we heard her little voice for the first time since the surgery. Yes, everyone, I cried. I cried to see her face, to hear her voice. It was such an incredible moment.
Little Charlotte is doing great. We think she may be having some morphine withdrawal (pooping every 20 minutes is apparently a sign of that. Who knew?!). Other than that and a sore throat that seems to be bugging her, she seems to be doing well. She’s cute as a button, too. She was wide awake while we were there—she stared at us and held our fingers. Strong grip. The nurse said that she calmed down a lot when we got there. Poor little thing kept crying, almost falling asleep and then waking herself up. As we left for dinner, the attending doctor was ordering methadone and atavan to alleviate her little bit of distress and help wean her off the morphine. Or, as they say in the hospital, “to take the edge off.” I, of course, keep asking what they have to take the edge off for parents. Vodka tonic, please?
On the chest tube front: To date, the tubes have drained nearly 200 ml of chylous effusion from her chest, most of it in the first day or two. Our understanding is that for as long as even the tiniest bit is draining, Charlotte will have the chest tubes. And, that’s just fine with us. We want to be sure that every little bit of ick has been drained from her lungs and that it won’t start again. Chest tubes will keep her in the PICU, and now that she’s in a crib (did I mention that?), it’s hard for us to hold her with the tubes (because of the way they are wound through the crib), but these are small inconveniences if they mean that Charlotte will stay stable.