Sorry to make my first real update a big one, but I figure there's no time like the present to keep everyone up to date.
Today we found out that Robbie has a hiatal hernia.
This is a condition in which part of the stomach bulges up through the diaphragm into the esophagus. It causes reflux.
We knew he had reflux. Actually 100% of preemies do. It's a matter of degree and treatment.
They weren't expecting this. The director of the NICU said that he's only seen this twice in his 18 years here. It's not related to his prematurity, really. It likely would have been present if he'd been born full term.
The only cure is surgery. They'll push the stomach back down where it belongs, then actually wrap part of his stomach around his esophagus and tie it down. When his stomach contracts, it will contract around his esophagus so that things can't be pushed back up.
The surgery is only successful 80% of the time, but it's all they've got. In 3-6% of cases, they'll actually have to do a 2nd surgery. The remaining part of the time, he gets some relief but isn't cured. All we can do is hope to be in that 80%.
In the mean time, they want to add something called a G-Tube into his abdomen. It's essentially a feeding tube directly into his stomach.
They tell us that it's something to get him home sooner.
There are 3 criteria for a preemie to be able to go home.
1) Breathing well. (Meaning he remembers to breathe all the time and can keep his oxygen up.)
2) Temperature regulation. This usually comes with size, somewhere around the 4lb mark.
3) Taking all his feeds by mouth.
Number 3 is often the thing that keeps babies in the hospital the longest. This would eliminate that.
The tube would remain in at least 5-6 weeks or as long as it takes for him to eat on his own. The nurses tell me most babies really only need it for about 2 weeks. But the way it heals, they leave it in longer anyway because it comes out easier then. It would be removed at an office visit and would heal on its own.
Right now, they're looking at Friday for the surgery. I still have several questions to ask tomorrow and they need to make sure his blood count is good enough to handle surgery (he might need another blood transfusion beforehand) but that's probably when it will be.
He'll have to go back on the ventilator for about a day. We have NOT missed the ventilator and don't welcome its return. We just pray we can get rid of it ASAP. But they'll leave him on it so that he can get good pain meds, so I know we need it.
Please keep us in your prayers. Surgery is scary in the best of circumstances. With his history of breathing troubles, it's even worse.
--Trish
Halloween
8 years ago
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