Sunday, October 5, 2008

"Just" reflux

Jaxon's upper G.I. and ultrasounds were both good. So his throwing up problem is strickly severe reflux. The specialist performing the upper g.i. told me that when he gets his NG tube out, he'll have less acid coming up into his throat. But that's a double edge sword since he has it in because it hurts him to eat, so he's not completely bottle feeding.
There has to be SOMETHING that we can do. The advice that he'll "grow out of it" is unacceptable. Since we've had him home, he hasn't gained a single ounce. He was weighed yesterday by a nurse at 5.5 lbs...he'll be 12 weeks old tomorrow!
I'm nervous he'll have to go back to the hospital if this remains. We can't even hold him often. Has anyone out there found something that helps this??!! 

9 comments:

ajanes said...

I'm a fellow nestie(ajanes - current 3rd trier). I've been following the boys progress. Can
I forward your blog to my sister? My niece has/had severe reflux. She's been fundoed and had a g-button for over a year to provide extra feedings. She also could not gain weight. She's was labeled Failure to Thirve until she was 18 months+. I know she might have some better advice for you. Feel free to email me at abbeyjanes_79@yahoo.com. There is such a difference between babies who spit up and those with severe reflux. Good Luck and I'll keep you in my thoughts!

Anonymous said...

Is he on any meds for his reflux? My mono-di girls responded well to Prevacid in the NICU. They came home and for a month or so, we continued the medicine. They eventually grew out of the dose so we just stopped it. They never were really bad refluxers but I have heard it did help other babies with reflux too.

Linda said...

I don't know if you've come across this website before, but maybe it could help. They have message boards too. I'm so sorry to hear Jaxon is still having such trouble. You guys are in my prayers.

http://www.infantrefluxdisease.com/

Nestie "Buttercup16"

nora said...

Hey lady, believe me.. I know that reflux is terrible!! by far it is the worst thing we have gone through, with the huge vomits, choking, and not gaining enough weight..and I agree with the others..there are things that can be done..different docs feel different ways about it..
Have they tried EES? Ronnie was on that from the NICU until a few weeks ago, and in the beginning I REALLY think it made a big difference, because we test drove stopping it, and he had huge pukes with every feeding until we started it back up. We also thickened his feeds, and he and Joey are both on Prevacid for the pain..but I know you know that the pain is only one crappy part about reflux..we have had to up Ronnie's Prevacid twice and luckily I think we might finally be through the woods..at almost 5 months. We are off the thickening, off the EES, but I'm too scared to stop the prevacid yet (we ran out once...oooooh it was a house of screaming babies).
I would push the subject with the docs to try and do more..I hope so much he feels better soon :(
Good luck, you are doing such a great job..
oh and here is a another website the preemie boards suggested to me
http://reflux.org/

Anonymous said...

Hi
I have been following your story from a link off of my friend's mono twins blog (Berg twins). A friend at work son had bad reflux as a baby. She found Prevacid to work wonders as well. They tried Zantac at first but Prevacid did the trick. They worked hard to find the right dossage and had to keep changing the amount as he grew but eventually he grew out of the reflux. I don't know if that helps . My aunt is a NICU nurse, I can ask her for advice as well. I'm glad that both boys are home.
Laura

ThreeRingCircus said...

Have they by chance recommended Simply Thick (a thickener that you add to his bottles)? Our son had the Prevacid in correlation with the Simply Thick. It's a tasteless, calorie-less gel type of a thing. Also, because he wasn't gaining as much weight as needed, we "added calories" to his feeds as well (you add formula to a made bottle or pumped breastmilk).

He eventually outgrew the thickener and extra calories, but continues on the Prevacid with what is now mild reflux. (Although he's over a year old and we were told he'd outgrow it by 9 months at the latest).

Keep your chin up, keep trying new things, keep pushing those docs. If you don't tell them the severity of the situation at home, they won't know... Keep on it, you're doing great. Jaxon appreciates all you're doing to fight for him since he can't.

Anonymous said...

I'm the first anonymous-we had liquid Prevacid compounded by a local specialty pharmacy.

ugabrat said...

My thoughts and prayers are with you. Have you tried adding formula (one especially for Reflux, Nutramigen Lipil)? Good luck and I pray that Jaxon will start gaining weight and getting thicker soon.

Kelly said...

I too suggest trying different combos of meds. My daughter is on Reglan and Prilosec. We were considering thickening feeds, but haven't had to. Different meds work for different babies so I would keep looking for what works best for yours.

Also please check out the tucker sling/wedge! I've heard it works wonders, and it certainly can't hurt and can even be covered by insurance

http://www.tuckersling.com/