Special Needs

Feeding tubes

At what point did you know your LO needed a feeding tube? What did you try before it came to that? How old was your LO when they got the tube?

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Re: Feeding tubes

  • imagepreggersINschool25:
    At what point did you know your LO needed a feeding tube? What did you try before it came to that? How old was your LO when they got the tube?

    I knew Lily needed a feeding tube when she had been in the NICU for 4 months, taking feeds by mouth for one month, and still could not take a full bottle.

    They were giving Lily her m remaining milk by ng tube. But, we thought the ng was making it hard for her to eat by mouth. So, part of the reason we opted for the gtube so she could work on feeding without the ng obstructing her eating. We also discussed our options with the doctors and OT... They were pretty confident that if we left with an NG, we'd be back in a couple months for a gtube.

    Lily was 4 months old, 1,month adjusted when she got her Gtube. 1.66 years later, and we're still working on eating orally.
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  • I was in denial for a very long time. We took her home with oral feeding only - a month later she got an NG tube placed. We tried a few months without that but she wasn't gaining weight, so she got the g-tube at 7 months. She is still slow to gain weight, but it is way easier than the NG tube to deal with. She did fine with surgery, but it took a while to get her to do tummy time. Our PT rec'd using an exercise ball for her to do an assisted standing tummy time on. She is another food refuser. We can get a little bit of food on her pacifier. We use medicinal pacifiers as tiny bottles that she holds and feeds herself, but she is not interested in food or eating that much. She does put things in her mouth - chewy tubes and pacifiers - so not a complete oral aversion, but one to food.
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  • We had G hospitalized twice last week, for a total of 6 days, due dehydration from her eating refusal.  The first time she was in was for gastroentinitis (sp?) and then picked up RSV and an ear infection, landing her in the hospital for a second time, after being home for only a day and a half.  The second round, they were planning on doing a NG tube and getting some pedialyte in her, because her arms were so beat up from the first hospitalization (she was so dehydrated, and has 'crooked' veins, so they blew most of them out with the IV and bloodwork).  They had one good vein to try for the second time, and I insisted they try that first, before the NG, and they said if they can't get the IV in that one vein, that they were going to do the NG.  Well, they got it in, which I was glad, and so were the nurses, who knew us from the first stay.  They know that she is a refuser, and said that an NG tube would probably add to her oral aversion.  I am still contemplating a tube, and if we have to go through this again, I am sure the doctors will be more leaning towards it.  Our ped makes rounds at the hospital, and said that if she doesn't do well off the IV, that they were going to look towards doing.  So, long answer to your question, we have been debating a tube for the last year, but everytime she gets close to where her entire team decides she needs one, we give her one more shot, and she bounces back.  Not sure how many more she will get.  She will be 14 months old.  (many days when we were still really struggling to get her to eat, I thought that the tube would be so great, then oscillate back to thinking about the long term effects.  When she was 3-9 months old, she only drank 8-12 oz of BM a day, and ate no food.  Ear tubes helped tremendously, but the oral aversion was already built by that point, so she still refuses most food, and will eat about 18-22 oz/BM per day).

    Good luck with all.  I dislike having to contemplate tubes as well.  :(  I am here if you want to PM me to talk further.  :)

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  • DS got his feeding tube back in April so at 25 months old. He has a growth disorder that has feeding issues as one of the main problems associated with his condition. He has always been a slow gainer and a not so great eater but it was never enough to warrant a tube- he basically always just squeeked by in gaining what the dr's wanted for a bare minimum. Some of the deciding factors for us were-

    1. He had been in feeding therapy since he was 8months old and his eating skills were slightly improved but he just had no appetite. A kid with no appetite just does NOT want to eat and there is very little you can do to MAKE a child eat. 

    2. We exhausted the other options- appetite stimulants didn't work, feeding therapy had reached a plateau as far as his progress and what we could do, etc.

    3. Every time he got sick we ended up in the hospital because he is hypoglycemic and when a child is sick and doesn't want to eat or drink anything and their blood sugar tanks you end up with a week long stay in the hospital. Plus every time he was sick he lost the tiny bit if weight that we had spent months trying to put on.

    4. Many kids with RSS have g-tubes so we always knew it was a possibility. We were at our wits end with trying to get him to eat. He  had no other GI reason for not eating (normal gastric emptying, his reflux had improved, normal upper and lower GI, etc.) It was a huge appetite issue and from talking to many RSS parents it was a general consensus that their appetites rarely pick up and basically the kids eventually get to an age where they realize they have to eat a certain amount at certain times and just do that vs. eating when hungry. We couldn't risk waiting for Nick to get to that point since he was so young and SO thin.

    For us it wasn't a life or death decision but it was one where we knew it was inevitable, our GI who is very conservative was recommending it, our endo was recommending it and our nutritionist was also. I knew that since it was an appetite issue it wouldn't be a short term thing so we wanted to skip an NG all together and bypass the oral issues that can come with that. He did great recovering from his surgery- it's been a wonderful relief to have his tube in all honesty. He gets sick less often, the few times he has been sick since getting it have been SO much easier on everyone- I can just hydrate and keep his sugar up via his tube and not worry about forcing him to ingest anything orally. His blood sugar in general is more stable, his oral eating has actually improved because there is less stress about it, my mental health has improved b/c I am not constantly worried about feeding my child. Nicholas is lucky and so far has been able to be mainly tube fed overnight- he is on a continuous feed overnight (too add extra calories while he sleeps and to maintain his blood sugar overnight). He gets a few oz. bolus in the morning and 1 in the afternoon but the rest of the time he is disconnected from his pump and eating orally. 

    We aren't in a huge rush to get rid of the tube and I suspect that it will be a while  before we do- mainly for blood sugar maintenance and until Nicholas is old enough to understand that he just has to eat sometimes. His actual surgery went well- we were in the hospital for maybe 2-3 days since it took a while before he would orally eat and be tube fed without vomiting but since coming home there haven't been many issues. Other than the first week there really hasn't been much pain associated with it- we've traveled, gone to the beach/pool with it, there are really minimal risks with a g-tube in our experience. 

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  • Our situation was different because Lauren's feeding issues were a direct result of her being in heart failure. But she just could not finish bottles.
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