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.
--Trish
Thursday, November 6, 2008
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12 comments:
My babe has severe reflux and we have been through hell as well.
After trying it all (zantac, prevacid, etc...) the combination of Axid and Carafate is what has finally worked for us.
And now that she is eating solids? Forget it, she's a totally different baby.
Hang in there, Trish! It only gets better I promise!
FYI - this is non-offical medical advice, but don't give the carafate at the same time as his prevacid or prilosec. Carafate stops the absorption of other meds for at least a hour.
Oh man, can I commiserate. I can't imagine trying to reach a goal of an ounce/day.. it just seems unattainable. We're lucky if we get 4 ounces in 3 weeks. M's Reflux is also still horrible, even though she's on Prevacid twice/day. I know that it must be uncomfortable for her (and probably really affects her feedings.. or um.. attempted feedings), but so far our (ass of a) GI said there's nothing else that we can do. I know that the goal is to neutralize the acid, and that it doesn't necessarily stop it from coming UP - I just don't think any sweet baby should have to deal with that constantly.
I'm not sure if R is still seeing OT/PT (is he?). But the Haberman/Special Needs bottle really did wonders for M in terms of eating more efficiently. She would still tremble, fall asleep, etc. - but she was getting it down much quicker without an increased (choking) flow. You could also just buy one online, though they're about $25 for the nipple/valve contraption (you just attach it to a collection bottle or a Medela bottle). Anyway, just an idea - I had my doubts at first, but it was like a MIRACLE. Unfortunately, it was short-lived, but I know that has more to do with M refusing to even SUCK than the bottle itself.
You poor Mama. It would be so much easier, I'm sure, if he wasn't in pain. I hope with all of my heart that these new meds do the trick. You both deserve a break. Please let me know if there is anything I can do....
It sounds like this is all very hard... and tiring. But it will get better eventually. :)
Glad they are changing his meds. Hopefully, this change will work. Hang in there.
I just found your site today and wanted to share. I saw this yesterday about savings http://preemieparenting.blogspot.com/2008/08/prevacid-savings.html on prevacid- every little bit helps.
I don't know if the link will work so here is the info:
Calling all Parents of Preemies on Prevacid - did you know you can save up to $25 each time you fill a prescription for Prevacid?
Prevacid has a Beyond the Burn savings program that allows you to save up to $25 each time you refill your prescription. The program is free - all you have to do is submit some information and then they send you a savings card. The pharmacy will treat the card as a secondary insurance. Our insurance did require us to pay $25 each time so this program was love at first sight for me. I got the card yesterday and pretty much did a happy dance at the pharmacy counter when all I was charged was the tax for the medicine.
I hope some of you can take advantage of this program. It is actually for adults as well so pass it on to anyone you know who takes Prevacid. They do offer some nice tips, recipes, etc for helping stop reflux through dietary measures as well.
My daughter is 18 months old and still has reflux. She was nearly full term, so it is most likely hereditary.
We fortunately got on Prevacid right away, and it has been great. Fight to get him on it if you have too, the other mom I know who's daughters have reflux swears by it, and she had to go on everything else first before they would give it to her.
See if you can get samples of the prevacid to prove that it works, or hold you over until it gets approved.
I hope the new combo of medicines works! :) I hope he feels better soon
Reflux is wretched. Poor kiddo. :( Are they having you give the reflux meds 20-30min before a feed or with the feed? I really hope you can get approved for the prevacid. I have several g tube refluxers who are doing better on it. All this preemie stuff is so individual and by trial and error. I'm so sorry you and your son are still going through so much.
((((Trish))))
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