[tri-med] Re: Question

----- Original Message ----- 
From: "Jim vega"
> With this all being new to me -- did any of you breast feed your babies??
> How long??

Alex had trouble with the suck swallow co-ordination when he was born and
was tube fed immediately after birth. Not knowing what was wrong with him
they told me I had to be feeding him by either breast or bottle before he
came home.
By day 8 he was "sort of" breastfeeding using some sort of fancy nipple
shield - problem was I couldn't take it home with me and they weren't
available for commercial sale (DUMB!!!)
So we came home and I expressed, put it in a bottle, gave him whatever he
could take and then used an eye dropper to feed him the rest drop by drop.
I did this express and feed routine for 3 months when he finally learnt how
to latch onto the breast (I tried every feed believe me).
Alex then became "breast fed" until he was 12 months old. At 12 months they
took his tonsils, adenoids and uvula out to help stop the obstructive
apneas.

Unfortunately it also destroyed his ability to swallow and all the ground we
had gained since birth was gone overnight.
Alex was very task specific - he had learnt to breast feed but he had no
idea how to get milk from a bottle and was a long way from using a cup
without aspirating. To get fluid into him it had to be from the breast.

I just didn't have the strength to do it all again, plus I needed to wean
him onto something because it was thought I had cancer and I couldn't be
breast feeding during either the treatment or testing stages.
So feeling like a total failure I opted for a g-tube. It was the best thing
I ever did for Alex!!

He became totally g-tube dependent (he has T-18 he's not stupid - he soon
realised it was a lot less work to be fed by tube) until he was about 5.
Even though I wasn't actively pumping anymore we had enough frozen breast
milk for him to have breast milk exclusively for another 3 months. After
that he went onto formula, actually a predigested formula for a couple of
months and then I put him onto a pureed diet through the g-tube.

I was probably an idiot for pushing the breast feeding for so long but I was
determined and it was "something" that I could do for Alex (or so I
thought). It also helped a lot with the bonding (I had bonding issues with
Alex that were totally unrelated to the trisomy, bottom line though was I
loved him by I didn't want him either).

Anyway for what its worth that was our experience - I hope it helps.

I have not lost my mind - it's backed up on disk somewhere.
-- Unknown

Keep Looking For Rainbows!!
   _--_|\
 /Karen \
 \ _.--._ /
          v Karen, Mum to Alex (8 years, T-18 Mosaic)
http://members.optushome.com.au/karens

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

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