Robbie had a follow up with the GI specialist today.
We actually saw the nurse practitioner. Turns out she has twins who were 26 weekers. We bonded. She was lovely.
The bad part is that someone has clearly not been keeping their moose fires stoked. He only gained 6oz in 16 days. Not enough. Ideal would be an ounce/day. Acceptable is 1/2 oz/day. We didn't get either of those. It's not HORRIBLE weight gain, but not good.
I guarantee he's not eating enough. He should be eating at least 60cc at every feeding. He generally gets to about 45 and just gives up. He's in pain. Flailing, crying, back arching, turning away from the bottle. The effing reflux is killing us.
What I've been doing is feeding him the 40 or 45 he'll take, then in an hour, after he's calmed down and digested a bit, feeding him the rest as long as he's awake enough to eat it. He's been eating 8 or 9 times/day. When it takes an hour to get a full feeding into him.... well.... it feels like ALL I do is feed him.
Add that to the fact that about once per week he throws up a little blood and the NP was sympathetic.
She completely changed his meds.
Instead of Mylanta, he'll now get a prescription version called carafate. Instead of simply coating, the new drug binds to the esophagus to keep it protected.
Instead of Pepcid, she prescribed Prevacid.
Unfortunately, my insurance won't cover formulary Prevacid. We're currently on hold waiting to find out if they want to change him to Prilosec or if the doctor can get the insurance to okay the Prevacid. Fun times with health insurance.
Hopefully when it gets straightened out, it does the trick.
As much as it's become standard, it's exhausting to have to fight through every feeding. To have to fight for every ounce.
It seems especially unfair to him to be in so much pain so often when he's already been through so much.
And I worry what his stomach history will mean to his future. People keep saying that most babies outgrow it by 3 months. Even more at 6. At the absolute outset- 1 year. He's 9 weeks adjusted now. I'd love for this to be the tail end of it, but I'm scared. Robbie has proven time and again that he does EVERYTHING on his own schedule.
Speaking of which, his G tube site did finally heel. At the 2 week mark, when it should have been healed, it was leaking worse than ever. But then it just stopped. Over the next week there was an occasional bit of crustiness, but that was it. But it's been fine ever since. He just needed a little bit of extra time. Like EVERYTHING ELSE.
It seems like we deserve SOMETHING to happen on time, right?
And of course, then I feel ungrateful. We've been so blessed.
The NP's son had a brain bleed, a perforated bowel, more than 4 months in the NICU. These are things we escaped. I know we've been so lucky. And reflux is something that probably would have gotten us even if he'd been full term.
But damn, I'm tired.