Tube Feeding Stories

My daughter got an NG tube placed at 5 months for FTT while waiting for her open heart surgery at 8 months. The doctors said that the feeding tube would help her grow to handle surgery better, and with the heart failure she was too worn out to eat enough. I wish I had taken her to feeding therapy (BEFORE not after getting the tube) or just kept nursing every two hours as long as it took.

A lot of people told me that once she got her heart repaired, she'd eat like a champ. Well, she never did. She got a g-tube placed at 11 months. She used to drink up to 3 ounces of formula at a time, but now, even though I have ALWAYS offered by mouth first, she's tube dependent and only drinks water or pedialyte by mouth.

She eats fine and no longer needs feeding therapy, but she just doesn't eat enough (only nibbles) and the doctors won't "let" me restrict her formula intake because she still isn't on the growth chart.

In response to your request for tube feeding stories, ours is like many others. In our situation, we decided on the feeding tube because our daughter was working so hard to eat that she was burning all of the calories on that alone. She needed to grow and we needed to be able to feed her safely. Initially, my thought was that we would just keep working with her and the Haberman bottle (for cleft palate) and we'd all learn together. Eventually, we realized that forcing her to eat with her mouth was not helping her. She was using all of her energy and we were always worried that she was aspirating. It was the right decision to have the tube placed.

Our tube feeding story is like most others. My daughter kept being admitted to the hospital because of her weight issues. At one month old they told me she a failure to thrive. We were also dealing with vomiting issues that her doctor would never treat her for. She has reflux. She was eating like a normal baby would to get her to gain weight. It was best to put the feeding tube in her. Of course I cried when they put the feeding tube in. It was a tough decision but I'm glad I made it.

We are in the middle of creating our tube feeding story. My 3 1/2 year old son currently has a NG tube, and we're going to have to make the decision soon as to whether to move to the G tube. So far it's been a fairly simple process- we love the calories that he's getting on it (700-900 per night), and the fact that he's gaining weight.

At first there was definitely some learning to do- the hospitals trained us on how to use the pump, check tube position, and change the tape on his face and things like that. Still, it was very scary for the first few days as we checked the feeding tube position at home and plugged him in to the pump. And for my son, there was definitely a learning curve as well, as he got used to the feeling of the food going through the tube to his stomach. We had several really sleepless nights as he adapted.

Overall, our tube feeding story has been a positive experience. The tube did get clogged once and we had to go to ER where they tried to clear it and ultimately had to change it. But that's only happened once in the month we've had it. The only other problem we had is when my son got a terrible cold with cough and was coughing so much that he would throw up. We had to discontinue feeds for a couple of days until he got past that.

The feeding tube has stayed taped in place, and my son hasn't ever tried to pull the tube out. I don't think he even remembers it is there. That was our big concern when we got it- how do you get a very active 3 1/2 year old to not mess with a tube on his face. But it's been a non-issue.

The only thing that I get tired of is all the looks when we're out in public. We definitely get a lot. A few people have asked about the feeding tube, which is fine, and we've explained that it helps him eat.

I would tell other parents considering a NG tube to give it a shot. It's not permanent, and it's a great way to get a few extra pounds on your child and see how they are going to tolerate non-oral feeding, before going through surgery and g tube placement.

Many parents share their tube feeding stories on the forums. I would recommend parents researching tube feeds for their children join a tube feeding forum such as the one on baby center or inspire.

Join our Forum. Make an appointment with us.

Return to Feeding Underweight Children Home from Tube Feeding Stories. Return to The Feeding Tube page.

New! Comments