Help! 2 Year old: G-tube or NG-tube???

[Anonymous]

My DD is 2 and is only 17lbs 12oz. She was born at 23 weeks 5 days. She does not have a reflux issue, oral adversions, allergies etc.. she just doesn't really like to eat. They have tested her for everything: all negative. She can eat and swallow well, but some days she may only have half of a banana and a few cheerios. She got sick in January and was taking pediasure with benecalorie and maintaining her weight (hasn't change for 6 months until now... she's losing), but after she got sick she will only drink juice and no longer pediasure. We still add the benecalorie but it's not doing a lot. We have tried every trick in the book, honestly I think we have spent hundreds on food ideas and countless hours cooking up foods... only to have a few bites. So now they want to do a NG tube. Another dr says to do a MIC KEY... what do I do? Here are my concerns/thoughs

NG:

Pros:

NOT a surgery (I'm terrified of her going under... she was on a vent for 8 weeks of her life and her lungs were badly damaged, so it scares me).

Quick way to check if the tube will help her gain etc

Cons:

She's TWO I'm scared she will just pull it out all the time. She is going through a phase at night that she doesn't want to go to bed, so I'm scared that she will def try to pull it out at night.

Scared at night that the cord will tangle around her if we try to do night feeding,

Scared it will go into her lungs

Day feedings: scared she will pull it out, but at least I can watch her and have more control over it vs at night where I feel like I would never rest thinking something bad would happen

G-tube

Pros: it's hidden, not as easy to pull out

Cons: worried about mantainace, SURGERY, and any complications... feels more permanent

ADVICE???

[Anonymous]

We kept our child on toddler formula for a few years till he started eating regularly. I'd go to a feeding specialist first. And, try different supplements. Keep trying. A few bites is better than nothing.

[Anonymous]

OP, an NG tube goes directly into the stomach. There is no risk of liquid / food going into the lungs, unless you are dropping a new tube every time (unlikely). Also, there is no risk of tangling. The tube is pretty much designed that it’s taped to their face, so the syringe goes there. No risk of tangling.

Pulling out may be a concern, but kids learn pretty quickly to leave them alone, and in general, they’re pretty non intrusive to their lives. It’s a tiny tube from nose to cheek.

I’d start with an NG tube. If it doesn’t work, then Peg or g tube shiuld be considered. I wouldn’t go invasive unless you have to.

[Anonymous]

G tube.

[Anonymous]

One of my kids has eosinophilic esophagitis, and while we don't have a feeding tube, I know there are really good FB groups out there with parents who are working through these issues. Search "feeding tube support" and they should pop up. You don't have to have a feeding tube to ask for help.

Our experience may not apply here, but my DC tested negative for everything until close to age 3. Allergies, scopes, labs, etc., were all clean. For that reason (and this is just my window), I'd go with the least invasive option for as long as you can stand. Medical food (Elecare/Neocate) got us through the early years. But the child has to drink it, and I get the challenge there.

Sending you healthy thoughts and strength.

[Anonymous]

Anonymous wrote:OP, an NG tube goes directly into the stomach. There is no risk of liquid / food going into the lungs, unless you are dropping a new tube every time (unlikely). Also, there is no risk of tangling. The tube is pretty much designed that it’s taped to their face, so the syringe goes there. No risk of tangling.

Pulling out may be a concern, but kids learn pretty quickly to leave them alone, and in general, they’re pretty non intrusive to their lives. It’s a tiny tube from nose to cheek.

I’d start with an NG tube. If it doesn’t work, then Peg or g tube shiuld be considered. I wouldn’t go invasive unless you have to.

I agree with this.

[Anonymous]

My son had a ng-tube and g-tube and lots of feeding issues. I am sorry you have to deal with this - it is so hard. (My son is an ex-preemie and was in vent for almost two years and lots of other things - but feeding was the hardest.).

Just know that an NG-tube is not a permanent solution. It will cause damage to the nasal passage ways if used for too long (months). And yes, if it gets dislodged and you are unaware (you’ll be taught to check it) food could go into the lungs.

You have to do what you have to do to get her to grow - but also know that tube feedings will take away any desire she has to eat because she will never be hungry so you may have to go through feeding therapy after a while and after her weight it up.

You know your daughter best - all of it is hard. Good Luck.

[Anonymous]

An enterprising toddler or child can pull out a g tube. It's basically a balloon in the abdomen. So don't avoid a g-tube for that reason.

The surgery is super easy with the g tube.

I worried about this decision for YEARS. And after I did it, I wondered why I waited so long. Best decision my family ever made. DD went from 39 pounds to 53. (Age 12).

[Anonymous]

My oldest (10 now and 50th percentike) was 19lbs at 12 months and 20lbs at 24 months. She was born at term but did have feeding issues. Had a really hard time chewing. Super picky and uninterested. All she wanted was milk. We ended up doing very little (but worry) and she gradually went from 5th percentile (or under. Can’t remember) to 50th.

Since then I’ve watched so many toddlers barely grown between 12mo-2yo and end up fine.

We kept going back to the whole failure to thrive diagnosis and what that meant. She was in no way not thriving! She just didn’t eat much, and in the end I think that was ok for her.

Is your dd really not thriving?

How does her being so premature play into this? She’s small, but wow, she was born 16 weeks early! Do you think you might be getting too much intervention in this department because she was so premature? How much weight has she actually lost?

I see a lot of cons for both.

Side note: I obviously don’t know your dd’s whole medical history, but I’m impressed how well she seems to be doing. My df had a baby at 24 weeks 1 day, and she still has a trach (no vent) and has a g tube and colostomy but improving steadily.

[Anonymous]

An NG tube is uncomfortable and not long term.

The g-tube surgery is very quick, but may not be necessary. Your child will not get tangled in the cord at night. And will 100% gain weight.

Now this is very important...even if you baby doesn’t eat much you ALWAYS ALWAYS need to offer different kids of flavors. If you are eating tacos, frosting, soup, dressing, frosting, Chinese food, etc. Always let her lick the flavor off the spoon. Even if she doesn’t eat now she will know what food taste like. And this will help her want to eat later.

It will also help with the feeding therapist later. There is a intensive feeding program called Pedi Speech and Feeding Solutions in Leesburg. We used the program at age 3 after 2 years with a g-tube. Once he was at a good weight and he could afford to lose a little we stoped using the tube so he could feel hungry. Your baby must be hungry to practice eating with a therapist.

Remember if you decide on a g-tube you can use it when you need it and if she starts eating you you can just flush it with water (very easy) and keep it as back up until your little one is on track. We didn’t remove ours until kindergarten. He hadn’t used it for 8 month when we had it removed. He is still thin but eats 100% by mouth.

Good luck.