over the hump, but can't get off the tube

[Anonymous]

My son was born 12 weeks early and needed a nissen wrap and G-tube to get out fo the hospital after a 4 month stay. The nissen wrap completely stopped his spit-ups and actually now he can’t even burp (though he could beforehand). Since he’s been home he’s been pretty happy and healthy and is now 7 months and 14 pounds. He was up to taking 2/3’s of his formula/milk via bottle, and in the past month has digressed to maybe half and worse every week. We felt we were so close to him being able to take all of his food from the bottle and get rid of the dang tube, and now we are going backwards. Very discouraging.

He get’s hungry and likes to eat, but his oral coordination isn’t the best. Now after 30-50 cc he gives up and wants to roll over a play and we give the rest of the feed quickly through a pump (no slow drips!). We have a feeding and phsical therapist supplied by the state, and everyone seems to be content to keep him on the tube and watch him grow.

Anyone have any suggestions or similar situations on how to close the G-tube chapter?

[Anonymous]

My daughter had a nissen just shortly before she turned 10 months old. her weight was only 16 lb 7 oz. Seven weeks later she weighed exactly the same and the surgeon wanted to put in a g-tube, but the ped gi wanted to give her one more month. somehow imanaged to get the weight on and we avoided the g-tube. She seemed ok for awhile, but we had a bout with esophageal thrush that had to be treated, then she got sick and stopped gaining weight–once again, a g-tube was suggested if she didn’t gain enough weight.

I managed to get the weight on again with pediasure and avoided the g-tube again. she continued to be failure to thrive, though, she developed obstructive sleep apnea and had her tonsils and adenoids removed a week after she turned two. she weighed 22 lbs at 2 years old. she has done really well up until this last year.

She never had any complications from her fundo–she was born with a hiatal hernia and her esophagus was getting ulcerated at 8 months. She cannot throw up—but she can burp. When she gets sick, she wretches and spits into a bowl. i give her soda crackers and carbonated pop to drink–(it helps me when i’m nauseated).

My daughter has had stomach aches and some wretching in the last year–so was tested for celiac–I have 3 other daughters with celiac and my husband and 8 of my kids all carry one of the main genes. that came back negative. This year she started getting aching joints, so she was tested for rheumatoid arthritis–that was negative and seemed to improve, although she still gets pain once in a while. she is getting rashes and cracks on her toes and rashes on her fingers–like i had at her age. She also has developed almost a chronic sore throat with a uvula that is wedge-shaped instead of just hanging down because of irritation. Not sure what is going on with her, we are seeing an allergist next week–but she is still a happy kid and doing well in school and seems to be growing normally—which is around the 20th % for my children.

Your son’s weight seems good and since he gets hungry and likes to eat, that sounds good. I am assuming if he is 7 months old, his adjusted age for being premature is somewhere around 4 months?

I know you said his oral coordination isn’t the best, but at one time he was taking 2/3 of his milk with a bottle—so you know he is capable of doing it.

I have identical twin girls who were preemies, only a month, but they gave them high calorie formula with a bottle in the hospital—when i brought them home, they did not want to nurse because it was more work to get their milk that way than it was with a bottle i’ll finish this i gotta run

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