Feeding Tube Mommas
I'm looking for info. We have our NICU Follow Up Clinic appt on Thursday and I'm trying to prepare myself for the G tube discussion with the nutritionist at the clinic.
I'm so torn. H is on oxygen at home. He's gaining weight, but very slowly. Every specialist we see says the key to him healing completely is to "gain weight". I'm so sick of this response.
Part of me is scared for him to have surgery to have the tube put in. The other part of me thinks about the long-term benefits of it. Every day is a struggle as far as eating is concerned. We were doing pretty good until shots last week and now he's back to eating about 10-11 oz a day 
Given he's just over 8 pounds, but he should be eating closer to 15 oz to get his max calories for the day.
So if you don't mind, can you tell me about your experience with feeding tubes. Given the option, would you do it again?
Thanks in advance ladies 
Re: Feeding Tube Mommas
My son got his G tube at 10 months old. He actually was admitted to the hospital at 9 months old weighing 9 pounds. At that point, he had an NG tube for a month and we knew we had to go the G tube route, so it was placed a month later. He had gained a pound in just that month.
It was a very difficult decision to make, and I struggled for a long time. He had good eating skills (a good suck and swallow) but he just wouldn't.
I felt like giving in to it was a failure, but after it was done, I was so grateful that I did. Like kiki's son, after the tube, he stopped eating entirely and that was very hard to accept. it felt like we went backward. And we had to contend with more vomiting (he actually had something to puke then) but that also told us why he wasn't eating. He was feeling very bad.
But he was 15 pounds at a year (still tiny, but keep in mind that he'd gained something like 75% of his body weight in 3 months) and was growing again.
My son is now 3 and had his G tube removed in May. It was a very, very long road to getting him to eat (and especially drink...) again, but I do know that looking back, it was the right thing to do.
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I was just about to write a post about feeding tubes. I hope I'm not hijacking the post.
My DD won't eat much past 16 ounces in a day. They want her to have 18 ounces at 26 calories. She has severe reflux. She won't eat much past 2oz at one time. It's like she has a cut off or something. SOmetimes it's less. Sometimes, she refuses to eat anything. It's so frustrating. She's not gaining like she should. (Actually she's lost a couple ounces) I'm so worried she is going to end up with a feeding tube but I want to do what is best for her though.
Did you LO's have reflux? Did they eat well at one time and then stop? That's what happened with her. A couple months ago, she ate 4oz at one time every 3 hours. Then one day she just stopped. It's so frustrating. We have an appt with the GI tomorrow.
I XP this on the special needs board and got some more info.
Evan ended up with a g-tube after months of fighting feedings, and difficult weight gain - reflux is the devil. After he got an ng tube his eating by mouth got less and less until he didn't eat by mouth at all. Even with the feeding tube weight gain was a battle because he still vomited so much. He got a g-tube after 3 months with the NG, and in hind sight, I wouldn't have waited that long. NG's are not fun, they come out, they're not comfortable for baby, affect swallowing, and act like a wick for gastric juices. The whole time he had the feeding tube, we still worked towards feeding orally. His OT was our biggest help. At one point, the goal was just for him to be comfortable in his high chair. Eventually we figured out dietary changes that helped him feel better, and cut down the vomiting drastically. He started gaining weight better, and being more receptive to eating by mouth. After about 1 1/2 yrs with the tube we were able to pull it, and now he eats like a normal 3 1/2 yr old, better than some actually.
One of the big things I learned through all of this, is no kid eats well when they don't feel good. Weather it's just growing that needs to happen (believe me I know how frustrating it is to hear they need to out grow their growing problem!), medications that need to be worked out or something else. Most people just don't have LO's that feel badly for months on end, it's maybe a few days with a stomach bug. Babies don't understand that they have to eat to thrive, just that they don't feel good, and the food makes it worse, so they get a bad association, and eating becomes a battle. For us the more we battled, the worse the association, and the worse the eating went. Before the tube, I believe Evan was eating only what he HAD to, once the tube was in, he didn't HAVE to anymore, and it wasn't pleasant to begin with, so he stopped. It is true too, that getting all of what you need by tube does affect the drive to eat orally too. When Evan was ready to tube wean, we had to cut back his tubings to increase his drive, he had to re-learn hunger/full cues, and what to do about them.
Feeding difficulties are one of the most difficult, stressful, anxiety producing things I've ever dealt with in my life. I needed a LOT of support to get through it. Hugs to all of you who are dealing with this now.
I was hoping you would reply. Thanks