Hi again,

We are having good days and bad days but Allie's weight is not improving. She hasn't gained in a week and I am soooooo tired of trying to feed her all the time. We took out her NG tube for two days and on day 1 she did great, but on day 2 she was awful and today is even worse. She won't eat in her sleep anymore so that's out. I am on the verge of a nervous breakdown if something doesn't give soon.

So, the doc says if she hasn't gained by next week, he will schedule the surgery. She will first get a PEG tube and then they will move to a button about 10-12 weeks later.

How bad is this going to hurt her? How long does it take to heal? Also, she is not crawling yet, so is this going to hurt her tummy time? She already hates being on her tummy so will this make it worse?

Thanks,
Christyn

It's so frustrating, isn't it? Our son was in the hospital for 6 days after g-tube/fundo surgery. I assume it would be less in hospital/recovery time if no fundo. He was back to his usual self very quickly after coming home from the hospital. Unlike most moms on here, we prefer the PEG over the button. We did not particularly like the catheter the surgeon put in immediately following surgery (it was supposed to be in for 3 weeks, but fell out week #2 so they put a PEG in at that time). Tucker does terribly on his tummy but I think it has more to do with the fact that he wasn't able to be on his tummy for the 1st 5-1/2 months of his life (hospital/surgeries, etc). He tolerates tummy time with g-tube (either button or PEG) as well as he ever has tolerated tummy time. Our GI said that the g-tube shouldn't affect tummy time one way or the other. I think the button was a little better for tummy time than PEG, since it's flusher to his body. Good luck. I hope Allie gains weight this week so you don't have to go this route...although it was a lifesaver for us.

Daniel was walking when he got his G tube, so luckily we didn't have to deal with the crawling issue. And for some reason (because he has a genie button?), his PEG was converted to a button after only four or five weeks. And the button was much nicer than the PEG. After getting the button, the site never seemed irritated or leaked, and I think that only happened because the PEG pulled.

So, I'd say D was feeling like himself within a week, maybe even sooner. He really did well with it. He even slept on his tummy most of the time, even right after the surgery, and it didn't seem to bother him.

When my sons had their gtubes placed they had buttons put in with the initial surgery. My one son did have to go to a peg for some time though. I will say that I found the button to be much easier to use.

As for recovery my boys did well and seemed to be up and running withing a week of the surgery. I do know that we had some problems with my one son trying to find a formula that he could tolerate. That is the biggest issue we had with the recovery.

I do wish you luck and hope that if the surgery needs to be done than things go well for you.


Melanie

Max had his G tube placed when he was 5 and a half months old. He recovered very well and quickly. They put in a MIC-Key right away. At the time he got it he did not get very much tummy time either but we were just cautious for about the first week or two and used a boppy to prop him up and take pressure off his tummy.

Babies are amazing though, they bounce back very quickly.

Good luck with your little one, take care.

Vicky

Hi Christyn
Hope you see my other post to your earlier question. Larissa was up and at it in 24 hours. She didn't even complain of pain, except when you pulled on the tube. The peg was annoying, only because it dangles and gets the way, I prefer the mickey and hear there is even a flatter one. Larissa seemed to instantly develop the nack of avoiding bumping the mickey. She slides off the bed and couch and instinctively leans over to one side a little more. When she was crawling with the tube hanging between her legs, she never to my knowledge caught it...certainly never pulled it out. She doesn't ever like being flat on her stomach..reflux, but she doesn't avoid or cry when I touch or hold her around the middle.
The worst thing of the gtube was the granulation and oozing at the site. But after a few months we sorted that one out. I think that is the only negative I can see. Now that her granulation has gone and site itself is dryer, she can even tolerate me taking it in and out to check the water without crying. Initially she did not like me to do that and would really scream, the site was quite sore because of the granulation and silver nitrate treatments. A wonderful mom gave me a recipe for a "miracle cream" which healed up her granulation and we have been good since then.
Also,now she is older, we have an older doll with the hard body which we have put an old mickey in and she feeds her dolly when she is fed. It is really quite fun to watch .

Good luck with you decision, Find out if there is a GTube support group in your area and call some mom's. Go see a tube fed baby, I met a little boy who had finished with his and talked to the mom and saw his belly after it had healed up. That made me less apprehensive.

Christyn
The surgery went pretty well for us also. Emily was sore after it was placed but I was very much into having the nurses keep up with pain magament. They wanted to give tylenol then if it was worse something stronger and the first day she was very sore so we did tylenol and then we did morphine for 12 hours and that got her over the hump and she was doing alot better with in 24-48 hours. we had the peg tube first and then went over to the button in about 3 months later. It was nice to get the button in. The peg tube was ok also. Anything was better then the nd tube! Just keep a onesie on you kiddo and it will keep the tube out of the way when it is not in use. Emily didnt lke her tummy either but soon got use to it and started to crawl and everything with it. Now she has the button and sleeps only on her tummy. Your baby wil do great!!! I hope you feel better about it any questions feel free to ask good luck beth