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how do you know when your child no longer needs to be tube fed?
My daughter has been on a feeding tube since she was born. She's had the NG tube, PEG, and now Mic Key button. After her heart surgery, they found that she was a silent aspirator, and it was unsafe to bottle feed her. She's now 2 and has worked with an OT twice a month, but mostly my husband and I have been working really hard with her on her feedings.
Lately she has been eating very well, just like a "normal" kid. She's scheduled to start an intense feeding program in October, but the way she's been eating lately, I don't think they'll keep her in the program.
When did you know that your child no longer needed to be tube fed? When did you know to take out their button?
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Re: how do you know when your child no longer needs to be tube fed?
I wish I was at this point with Carter, but congrats to you! Sounds like you have made great progress in the feeding area!
I would document what she is eating everyday for a week or so and then talk with your GI doc or nutritionist to see if she is getting enough calories for her age/size. Your GI doc should be able to guide you as to if and when it would make sense to take out the button.
What did you work on in particular with your daughter to get her to eat more orally? My son only takes small tastes orally and seems to choke/gag on anything more. He has airway issues from his heart defect, so it is very scary for us. We had a swallow study done at 5 months and he was not aspirating. We are starting with the feeding specialist team at the end of September. He is also having a bronchoscopy and endoscopy done at the end of October to look at his airways and see if there is anything physically wrong that is holding him back from orally eating.
Any advice would be much appreciated! It seems like you have done great things with your daughter to get her this far!
These are some of the things that would be important for that decision :
How much food does she take in orally?
Is it enough to sustain her at this age?
And how do you know that she's not still silently aspirating? Out of curiosity, what types of things did you did you to work on feeding without being able to tell if she was aspirating? (my daughter has silent aspiration as well and is on a g-tube)
When was her last swallow study done? Did it show aspiration?
Do you have a GI or feeding/g-tube clinic that follow her? I wouldn't want to take the g-tube out without their graces.
Our surgeon won't take my sons g-tube out unless:
the dietitian has signed off on it. (BTW, she won't. He had 2 weight losses, then a small gain, and then another loss)
The GI has to write a letter saying they feel the tube is no longer needed.
and the surgeon said he wants (and the GI agrees) that we need to be able to go 3-6 months without using it--no venting, no feeding.
We were almost at our 3 month mark and I had all our final tube appts made when he stopped eating and we had to tube feed for 3 weeks. The end of September will mark our next 3 months of being orally fed 100% (hopefully) so we'll see.
FWIW, my son had a Nissen/Fundo 7/15/09 which is why he has his g-tube. I'm sure different drs have different standards and depending on the child and their medical needs and history.
We have had 2 swallow studies done in the last 6 months and both were very rough, cause she freaked out, screamed, and wanted me to hold her and didn't want to eat or drink. when we finally calmed her down she was able to eat and drink and passed the swallow study without any evidence of aspiration.
We had been seeing nOT at a children's hospital as well as getting services through the state with Infant and Toddler Program as far as eating. We basically just tried everything, every way, everywhere. We found that the highchair gave her some anxiety issues, i guess from being pressured to eat. so we would eat dinner in the living room using our coffee table. we rewarded her with her favorite show. if she took a bite, we would play her show. if she didn't we would pause it.
but we found she did the best, just by us showing her how happy we were when she would try things. i would literally do a cheer and jump around the living room every time she took a bite. she thought it was funny, so she would keep taking bites.
she's always been so particular though about what she ate and would only eat crunchy textures. i honestly, don't know what has caused the change the last few weeks, but she's been scarfing down spaghetti, mac and cheese, and rice. it's unbelievable!!!!
we have a GI appt. in 3 weeks, so i'm curious to see what's going to happen next.