Nine days after being switched to CPAP, Gabriel has made it to the high flow nasal cannula! This means that his lungs are continuing to improve, he has less air blowing into his nose, he doesn’t have to wear awful head gear, AND mommy gets to pick him up any time she wants!! Today was the first time that I’ve gotten to hold him twice in one day! As excited as I am, Gabriel has a blood gas in the morning that will determine if high flow is enough for him, or if he needs to be on CPAP longer.
This past week has been about slow progress and the discussion of Gabe’s remaining NICU stay. Currently, the biggest concerns for the doctor (and areas of concentration for my little guy) are his liver, lungs, and oral development. Gabriel’s liver is “really sick”. He had to be on IV nutrition for his first 7 weeks before receiving any breast milk (due to duodenal atresia) and it has caused his liver to be very sick… I’ll know tomorrow if his liver is starting to make a turn around, or if they are going to get a liver specialist involved because of the damage. The “sick” is from high levels of direct bilirubin which causes him to be jaundice, but it’s not the kind that can be cured by phototherapy. So, he looks very yellow: eyes, skin, palms, gums, and roof of his mouth. He’s my little yellow submarine 🙂 We’ve been listening to that song by the Beatles in his room a lot lately from the Rockabye Baby Beatles CD. The doctor isn’t overly concerned with his liver because she thinks she knows why it’s “sick”; if she’s wrong, then it’s time to worry.
One of Gabriel’s biggest strengths when he was born was respiratory, but then he got sick with pneumonia. Ever since then (and after surgery) he’s had a very hard time weaning off of the breathing machines. Its been a slow process.
The last concern is Gabriel’s oral development. He needs to learn how to feed: suck, swallow, and breath. This can be a very big stumbling block for some babies in the NICU for various reasons. For Gabe, he has always had one or two tubes in his mouth, he’s been intubated three times, and he’s never been able to feed until the past 10 days or so (through a tube though). On top of the trauma he has had to his mouth and throat, he has Trisomy 21. According to the doctor, most babies with T21 are poor feeders.
Then there came the discussion of Gabriel’s NICU stay. The doctor is giving him a 50/50 chance at either feeding well and lungs healing and going home OR needing a feeding tube (G tube) surgically placed and require a breathing machine and oxygen to go home. It all depends on how his lungs heal and how well he begins to bottle feed. However, as a nurse pointed out, for the doctor to even bring up the G tube, it means she’s leaning in that direction. The point of the feeding tube is this: the best place for a baby to be is home, so if Gabriel is stable except that he needs a little aid to adequately breath and he needs a longer amount of time to learn how to feed, then he’ll be sent home with the necessary medical “things” in place. On one hand, the thought of another surgery makes me very uneasy, but on the other hand, I’m okay with whatever it is that he needs to come home. The best place for him to be is his home with mommy, not the hospital.
There are no discussions as to the length of time remaining at the hospital, just what it could look like. I’m still really hopeful that he’ll be home by Christmas, but “it’s gonna be a long road” seems to be the motto.