My Son Is Having Problems with His Nutrition

I have a newborn who has a g-tube...so we are at the beginning stages of what you have already gone through. My advice would be to go ahead and use the g-tube again to give him the extra calories he needs right now. Continue to orally feed him whatever/whenever he will eat. I wouldn't look at it as a step backward so much as a step that needs to be taken to make sure your little guy gets the growth he will need for the rest of his life. As long as he continues to feed orally as well as the g-tube, he wouldn't necessarily "backslide". Best of luck to you & your little man.

Hi H.,
My son was a 24-weeker and we had many problems getting him to be able to eat enough to gain weight. We were given the option to tube him and chose not to. He is now 6 years old and about 30 pounds. We just met with yet another nutritionist a couple weeks ago for a new plan. He eats a TON and a wide variety of foods but just won't gain weight. We've had lots of other tests to see if anything else is wrong but everything comes back normal. So far he isn't a candidate for Human Growth Hormone.

The reason we chose not to tube was that we thought he COULD eat. We misunderstood the tube to mean he COULDN'T eat. We were also afraid of language and sensory issues that tubed children often develop. Our son is very smart, articulate and only has a few sensory issues (which is pretty amazing for a former 24-weeker).

I can't say that hindsight is 20/20 on this decision because we don't know if what we did was the right thing. What I have since learned is that children have a narrow window for which they develop their fat stores and by not tubing him, he got enough to survive and grow slightly but not enough to build those fat stores. After this last round of appts. and tests I asked the doctors and nutritionists straight out if he will ever have the chance to make that up. I didn't really get a straight answer because I think it is kind of a crystal ball type answer but one doctor did refer to it as malnutrition - which scared me.

So, I would caution you to not think about going back to the tube as a step back. You will notice in every area of a child's development that it doesn't go in a straight line forward - it is two forward, one back, three forward, one back etc. I would assess how your son is going with language/speech (may be early to tell for a 2 yr. old with cleft) and sensory issues. If he seems to be within normal realms, I can't think of any other issues that would prevent you from going back to the tube.

It IS temporary. He won't be going to high school with a tube - I guarantee you that. If the tube is a bonus for calories and not interferring with other developmental milestones, I would say go back to it for a while and reassess.

Wow you and your son are SO Strong. The best person to sit down with and get advice from would be a nutritionist. I would look around for a good one and stick with them. As time goes on they may be the perfict addition to your team.
Things that I used to increse cal's in my daughters diet inc.
adding ice cream to every glass of whole milk
Pedia Sure
dried poudered milk added to soups

If the tube is already there it Could be helpful to help him get stronger, then he will eat better, down the road.

I wish you the best.

M.

You can get a caring bridge website at www.caringbridge.org

My son was really small and they had to find out how to get him to gain weight. They had him try Pediasure to add calories.

Just add butter, sr.cream, anything fattening to whatever you feed him.Worry about eating healthy later on.Will he eat McDonlads? I know usually bad advise but in your case I would. I totally understand not wanting to go back to a tube. My daughter was born 2mos. premature and I refused which was sort of selfish on my end but I refused to have my child behind I pushed and pushed. I was tough on her and made her meet most of her developmental goals and milestones as close to the correct age as possible. Just be persistant on it and don't give up. If he goes back to a tube just take it as it is and work to get off of it again.