Learn about tube feeding here! We asked parents what they wish they knew before their child got G-tube fed and this is what they said. Please also check out our parent tipsfor helpful tips and views from parents. These stories are from real caregivers and their experiences. Thank you to everyone who contributed.
For other parents trying to learn about tube feeding, I guess what I wished I had known is that a feeding tube is not just a short term solution. Yes, it might immediately help the FTTFTT or lack of nourishment, but it is a long term process. The doctors really just seem interested in getting the kids the appropriate amount to grow, but don't even mention the stress of then trying to wean a child who becomes tube dependent.
Also, personally, the NG tube was much more stressful to our family than the g-tube has been. Our daughter pulled the NG tube out on a weekly basis and it really seemed to bother her. Although the g tube does require surgery, it is nice to not have it taped to their face, making their skin raw, etc.
I would tell other parents hoping to learn about G-tube feeding that I wish I knew that it would take 10 years before my child would eat by mouth again.
How painful it can be. We started out with an Ng tube, which made her reflux worse. The caps to keep it close would keep opening up when there a lot of pressure in her belly. And always had to check for placement that add air to the belly. At 9 months went to PEG tube. Sometimes the PEG comes out during the feeds and there is a lot of drainage. At 13 months went to a g button. They told me drainage will stop. Wrong she still had drainage no matter want. Also the g button would be easy to pull out which happened to me while on vacation on the cruise.
My daughter came home from the hospital tube fed, so there was no transition. However, I was never told about venting and that would have been helpful to know. I wish I knew that when I tried to learn about tube feeding.
Our daughter never spit up or threw up until being tube fed. She has done a swallow study and PH probe and doesn't have reflux, but a few times a week she will vomit a complete feeding. I wish I knew that when I was going to learn about tube feeding.
Finally, I'm not sure how typical this is, but my daughter's growth is still very slow despite getting tube fed all of the calories she needs each day plus whatever she’ll eats by mouth. In hindsight, she might have done about the same without the tubes.
I didn't realize my son would have increased reflux, decreased oral feedings, and granulation tissue. , aspiration and volume intolerance. I wish I knew that when I had to learn about tube feeding.
Also there was a lack of clear direction. Never sure if I should contact the surgeon, the GI, etc. I would call one, only to be directed to the other.
I wish that some medical professional would have discussed the pros and cons of all methods of feeding. All of the research about the benefits of different feeding methods was up to us. In our case, though, once we had the g-tube, we were given the phone numbers to an outstanding group of wound nurses who were very helpful. I so deeply wish that there was some kind of local support. Once you get the tube, you start getting your supplies every month and it just feels like you're on your own and the medical professionals are no longer concerned with your child. How much this would effective on her eating habits. How much Ng tube would affect her reflux. Also reflux would make her vomit smell badly.
When my daughter got GT, her local pediatrician's office didn't want to touch it and instead wanted us to drive 2.5 hours to the children's hospital for a 5 minute office visit. I would always get deferred from the pediatrician's office to the children's hospital, who would defer back to the pediatrician’s office. I also feel like, even though we are caring for the child, there should be some kind of support established for the mother. I've read in a professional article that more than 85% of mothers of children with feeding tubes are depressed and that depression is alleviated in nearly all cases once the tube is removed. This was certainly the case in my situation. The reflux! It happens at least 4 mornings a week for us. Sometimes small, sometimes large, sometimes multiple times. 2) The increase of poop. 3) How easily that little tube can be pulled out. Learn how to tape well and invest in mittens for nighttime. 4) Insurance companies can stink (but I think we all know that).
I agree with whoever said they had a lack of direction. We don't have a GI doc; we had to go back to the surgeon to get the button re-sized because our pediatrician didn't really know how to measure for a different size. You really need to learn about tube feeding on your own and not rely on one doctor to know everything there is to know about it.
Going down the slide on your tummy with a button is probably not the best idea.
How hard it would be to find nutritional information - our dietician was no help for the transition period between formula and oral feedings, for example, and couldn't figure out how many calories were even appropriate due to some of my son's other issues.
Although I never wanted to have to learn about tube feeding, I learned a lot from these boards and we're fortunate to have a close friend who has a daughter with a feeding tube. I wish we knew what granulation tissue looked like before we saw it on her. I thought her guts were coming out of her stoma! We were in the NICU at the time and we were doing our daughter's care, but we didn't really know how to manage the tube. For example, I didn't know that we could vent her by hooking up a 60mL syringe to the end of her extension and open the clamp to let her belly burp. We were told that her button would pop out someday and we should have another one handy to replace it. We didn't, however, know exactly how to do that. I think it would have been much less traumatic if the hospital had a doll or something to show newbies how to do it. There's a good video of Sara changing her daughter's button and even though we've changed our daughter's button a number of times, seeing how calm Sara and Olivia are, makes me realize that I was probably stressing our daughter out when I was changing her button. (Hyperventilating and chanting "EEK! It’s OK, EEK! It’s OK, it's OK is really not the best way to make a baby feel secure.)