[tri-med] Re: Trisomy baby continous fed

Hi Kelly,
Welcome to our list.  This list has been a Godsend to me, among others.  I
didn't find it until my Caroline (partial trisomy 17p) was about 6 months,
but better late than never!!!

Caroline struggled for her first 6 or so months.  She wasn't supposed to
make it to term, she definitely wasn't going to survive a vaginal birth, and
there is NO WAY she would survive to see her first birthday.  Well, we
celebrated her third birthday this summer.  She has had quite a few hard
times, but right now (knock on wood!!) she is doing really well.  If you
want details, you can read her story on her website below.

Anyway, Caroline was fed by mouth until about 4 months old.  She had
horrible reflux and couldn't keep enough calories down to barely survive.
She was SO skinny and sickly for her first few months, I don't know how she
did survive.  Anyway, we got her g-tube at 6 months and ended up stopping
feedings by mouth for a while.  We tried to reintroduce them a few months
later, but she had developed such an aversion to feedings that we finally
resigned to the fact that she is happier being tube fed and it makes our
life easier as well.  We occasionally try giving her tastes of food, and if
she ever shows us that she LIKES food, we will be trying oral feedings like
crazy!

I am so sorry you are having such a hard time finding a hospital that will
help your Amos.  Caroline was treated in Pittsburgh, PA at Children's
Hospital.  I was naive at the time, but we never were treated any different
than any other child.  And I never thought twice about it.  Now that I have
heard such horrible stories, I think that we were so lucky!  Is it possible
for you to take him to another hospital where they will be more aggressive?
If they need proof that some of these children do survive and thrive, I am
sure our list can provide just a few!!!!!!

Good luck and take care,
Irene
Christina (4), Caroline (3 with partial trisomy 17p) and Kallie (1)
Caroline's site:  http://www.caringbridge.org/visit/carolinesmith

On 8/27/06, Kelly Rosberg <rosberg2@xxxxxxxxx> wrote:
>
> Hi, I am new, I have been lurking around, I was wondering if all trisomy
> babies are tube fed? My son is 4 months and has trisomy 18 (full). He
> has had heart surgery for 7 mm hole in the heart. he is doing well be
> the hospital will not help him much. He is in for phemona now. But is
> growing! How do you get them to change him over?
> Thanks for all the great information
> Kelly Rosberg
> Wausa Nebraska
>
>                   Building ___ooOOoo__ Rainbows
>                        www.trisomyonline.org
>                   Families Helping Families On-line
>
>


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

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