[tri-med] Re: considering a g-tube


----- Original Message -----
From: "Jackie Di Cecco" <Jackie.Di.Cecco@xxxxxxxxxx>

> Our daughter has full trisomy 18 and is 9 months old. She has been bottle
> fed since her 3rd day of life and while she has gained weight slowly, she
> has been doing OK.

Is your dr suggesting the g-tube?
Since she's gaining steadily and is able to bottle feed what is the reason
for thinking g-tube?

>We're
> trying to get some perspective from other parents who have made this
> decision. What are the pros and cons you've seen? Would you do it again,
> given the chance?

Our son Alex was born in June of 1987 (seems like the dark ages medically
speaking these days). We didn't know of his trisomy (took 6 weeks for lab
results back then) when we took him home from the hosp at 7 days old. At
that time he had no suck. I was trying to breast feed. What a stupid idea
that was with a child with very low tone and no suck!!!

Anyhoo.....we came home with no outside support (feeding, pt, ot, etc). As
first time parents we just went on instinct and brains. There was no
Internet at that time either. :0)

It took an hour to get an ounce or 2 into Alex. His gain was very slow.
Birth was 4lb and 12 oz and wasn't fitting into newborn clothing until he
was 7-8 months old. There was one bottle nipple that he did best with (tried
many) and we finally cut the hole larger so that we could squeeze the bottle
and drip it into his mouth. That's pretty much all I did every 2 hrs.  :0)
Talk about a labor of love!!!!! lol

We never had the g-tube offered as an option for us so we went with oral
feeding.

If Claire is gaining and growing with oral feeding than what would be the
advantage of g-tube feeding? There is a worry that going with a tube then
hinders oral progress. Also, with 3 adults in the household I would think
that the time factor for feeding wouldn't be a huge issue for you.

I know many on the list have done the tube vs oral and they'll have stories
for you too.

Good luck!
Michelle mom to Alex (15, partial trisomy 14 mosaic) and Molly (12)
MichiganUSA


                  Building ___ooOOoo__ Rainbows
                       www.trisomyonline.org
                  Families Helping Families On-line

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