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Preemies
anyone sent home with a G-TUBE?
James is having his surgery on wednesday to put his ostomy back together, also a double hernia and circumcision. i was told they might decide to do a g-tube while he is in surgery (they will decide before surgery but while they are in there it is a good thing to do) and im thinking why? they havent even given him a chance on bottle feeding (he was bottled for 3 days and then stopped because of stoma complications) im really nervous about the g-tube so any information you have would be great.....
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Re: anyone sent home with a G-TUBE?
Olivia was sent home with a gtube and still has it 2 years later. She has severe lung disease and reflux which is why she got in the first place. If you end up getting one for James there are several of us who can help you with how-to's, questions, etc.
Here are some things I would consider:
1) Having the gtube doesn't mean you have to give up bottle feedings. IF you decided to have one put in than I would make sure that bottle feeds still remain the primary way of feeding (as much as possible) with the gtube being used for any extra calories, etc. needed.
2) You could wait to have on put in and see how he does with bottle feedings. It sounds like it hasn't had much of a chance and he could get it quickly once has has recovered from surgery.
3) The benefit to getting it done at the same time is that he is only put under once vs. twice. But that shouldn't be the only determining factor. A gtube surgery is actually considered minor so it wouldn't be as huge of an undertaking if it had to be put in later.
4) Make sure you have the doctors sit down with you and really see discuss options, specifics, plans, etc. Don't let them pressure you into a decision. A gtube may ultimately be the best thing for your little guy but you should have all the information and feel comfortable with it before going forward.
I hope that helps for starters. My son's birthday is today so I don't have a ton of time. I'll be on later if you have more questions. And Lstaylor and Triciajoy both have kiddos with gtubes too.
Robbie has actually had one twice. And I still semi-regret it the first time.
Like you, Robbie was never really given much of a chance to get his feedings down. He'd only been nippling for about a week when they found he had a stomach deformity and needed surgery. They really didn't even ask me. They just said "we're going to do a G tube at the same time."
I was NOT okay with it.. I questioned, questioned, questioned, questioned.. Ended up having a screaming match with a nurse over the whole situation. It wasn't great.
That being said- Robbie woke up from surgery and demanded to be fed by mouth. Literally, it was used while he was still out from surgery (he took forever to wake up) but as soon as he was up, it was never used again. They took it out 6 weeks later and let it close up because he was eating great.
I then spent months agonizing over guilt that I'd let them do it when he clearly didn't need it.
Then he stopped eating. And I truly wished he'd had it. Eventually, it had to be put back in. (It was put in in August '08, taken on October of '08, put back in March '09.)
Fortunatley they were able to reuse the same site so he didn't get a new one. And we've been using it ever since. He's now 99% G-Tube fed. This time, because he didn't want to eat to begin with, he gave up completely.
PP covered everything I'd want to say as far as questions. I will say that if they tell you there are no side effects to the G-tube.. they're wrong. It can lead to increased reflux because it changes the shape of the stomach a bit.
Eventually that improves, but be aware that they are doing surgery and they are making changes to his stomach. The docs at our NICU acted like it was just no big deal at all, but I still do feel like it is.
My Blog
Ditto to Preemie Parent and TriciaJoy. My boys did not come home on G tubes. They suffer from severe reflux/GERD and were able to eat by mouth until January of this year when they flat out refused to eat at all. We were made to feel pressured into getting tubes in both babies, and in the end the boys did get the GJ tube (where they feed straight into the intestine instead of the stomach) and then in June they graduated to the G tubes they have today. You're LO is so young that oral aversion is not as likely and he may never have the aversion as long as you continue to make the eating by mouth the primary way to eat as much as possible. As children get older they develop oral aversions and sensory delay issues to textures and this makes eating solids difficult. The process to overcome oral aversions and sensory delays is the hardest and most time taxing process. You are ahead of the game on that right now because he's so young, but you must continue to insist on eating by mouth.
Have they done a swallow study, EDG, or any kind of biopsies to verify the need for the G tube yet? Have they given you reason why he needs the G tube? I would not recommend the G tube unless they have checked everything possible out. Three days of eating by mouth is nothing in the grand scheme of things, they have to give him a chance to figure it out. It may take him at least a week to two weeks to really master eating and they can always do a nasal G tube instead of the belly one.
Please don't hesitate to let us know if you have any questions about anything at all. We've all had experiences that can probably answer most any question you have, from how to deal with the tube day to day, to the different kinds of formula, to sensory and oral motor activities.