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Preemies
Any FTT moms or g-tube moms?
My little peanut has been having a really hard time gaining weight. Mostly he just doesn't eat enough. He has awful reflux which is definitely part of if not the whole problem. He is only 12 lb at 6 months adjusted and he has been there for the past 3-4 weeks. His pulmonologist coordinates most of his care so he is arranging for a scope of his upper GI tract and airway. He said it could just be severe reflux or it could be eosinophilic esophagitis. We had to talk about the possibility of a g tube or a gj tube. We are stressed and anxious. I feel like the poor kid can't catch a break. I guess I'm just looking for some support or success stories...
TTC with unexplained IF since 8/2007
6 losses, one beautiful perfect boy in our arms
This discussion has been closed.
Re: Any FTT moms or g-tube moms?
My son has had a g-tube since he was 10 months old (he'll be 3 next week. Hoping to get the tube out soon- maybe even this week!)
He also had horrible, horrible reflux and just a lot of stomach issues. Eventually we figured out he was allergic to corn and reducing his corn intake helped somewhat, and then with age, his reflux eventually settled down (though he was 2 before I could be reasonably certainly he wouldn't puke.)
We struggled with the decision to get the tube for a long time. We were all just miserable. He was hungry all the time so he cried, but then cried when he ate because it hurt. He was ~10 pounds at 9 months actual (6 adjusted) and hospitalized for FTT. Then he had the surgery at 10 months actual. He was still under 15 pounds at a year old, but once he stopped puking so much (which honestly, I don't think would have happened without the tube. The tube allowed us to severely slow his feeds down to get him to tolerate them) he gained weight quickly- actually getting kinda fat for a short time there.
At that point, we started working on weaning off of the tube, which has been a very slow process for us, but I think we're finally there. He hasn't been tubed since February and he is gaining on his own. He's still very skinny (about 23.5 pounds at 3yo) but healthy now, which I couldn't say before.
You are welcome to shoot me an email with any questions - triciajoy@yahoo.com
or please join us over on the private board www.thepreemiepalace.com there are several other G-tube moms (and GJ moms) who would be more than happy to share their stories as well.
My Blog
I'm a former g-tube/FTT mamma. Evan came home eating by mouth, put on 5lbs on his own, then started having troubles with reflux....coughing and swallowing in his crib, increasing spitups that eventually turned to vomiting. He started to fight feedings more and more until he refused to take the bottle all together. We tried an NG tube for 3 months starting when he was 6months old 2 adjusted, desperate to "help him learn to eat again". What I know now that I didn't know then is no kid will eat when they don't feel well. The g-tube was really hard to accept, but in hind sight, very much needed. The NG affected his swallowing, made him more defensive of his face as we were having to put it down sometimes up to 6 times a day depending on how often he was puking it up or pulling it out.
Evan had several tests, admissions for FTT and at one point was on IV feeds again with a team of GI docs scratching their heads as to what was wrong. He had orders to come home on the TPN IV feeds, at 18 months old. In the end we found out he can not handle corn syrup products, nor too much pasteurized dairy fat. Corn syrup is in the most hypo-allergenic formula's like elecare, Evan puked till he was dry heaving on Elecare, and that's a big part of how we found out what was bothering him. Once we eliminated that from his diet, he felt better, his puking decreased drastically, he grew better, became more receptive to eating by mouth, and we started to tube wean. He's been tube free for just over a year now, is growing and thriving and has even jumpped up on the growth charts.
Anyway, I'm not sure if you're thinking/feeling it, but you're not a bad mom. None of this is your fault. Hopefully you won't need one, but if you do, getting a g-tube doesn't = failure, nor does it = for life.
Big hugs!
We haven't dealt with FTT. But, Lilith has had her g-tube for about a month now. She is still vomiting about once a day, but we are boules feeds. And, if I recall, she did not have a problem with vomit when she was on continuous feeds.
I know the decision to get a g-tube is a hard one. When it came to our circumstances, Lilith wasn't eating much orally due to her extreme oral aversion (she had been on the ventilator for a very long time before she got her Trach). The NICU was prepared to discharge us with an NG tube. But, Lilith hated her NG tube. Like the PP son, the NG would come out several times a day (mostly from her pulling it out). And, just like the PP mentioned, the NG tube made it even harder for Lilith to eat orally. When the NICU suggested that we could get the g-tube (since it was unlikely Lilith would eat orally for several months), then we had to do what we thought was best for Lilith's development (it isn't developmentally appropriate to eat with a tube down one thraot constantly).
The pump for the g-tube is relatively easy to operate. And, not too hard to maintain. The biggest problem we faced, was just trying to get the feeding bag and pump to stay above Lilith's stomach when we had to go out.
I think the other moms in this post have posted some really helpful information. I'm a relative newbie so I don't know if I can be much more help. But, if you have any questions that I could answer just let me know.
I haven't been on this board in a long time (sorry ladies) but someone from the preemiepalace dot com sent me over to offer support. My 28wk 6day severe IUGR, severe reflux/GERD twins were FTT and weighed 10lbs at 10mos old. At 11mos we were admitted to the hospital because of the FTT and spent 3 weeks quite literally fighting with the doctors about whether or not to do the G tube or GJ tube. In the end we went with the GJ tube. The docs also pushed us VERY hard to get a Nissen (also called a Fundo) which sort of ties off the esophagus where it meets the stomach so that they can't reflux up food and thus can no longer vomit. We opted not to do the Nissen because aspiration has never been a problem, and thank god we made that decision. We've dealt with copious amounts of vomit (x2) including vomiting in their sleep multiple times each night. It has been a long ans slow road, and we have much more work to do, but we're finally on the other side of the bumpy road. We are now two and a half years later (the boys are 3yrs old now) and Cameron has been officially tube free for 5months, while Evan is finally starting to eat solid foods and will hopefully be off his feeding tube by Thanksgiving.
Life is very busy so I've let my blog fall to the wayside, but hope to pick it back up soon. I've tried to document our experiences there, so feel free to check it out (see link in siggie) or email me at Taylo2Babies at gmail dot com if you have questions.