[tri-med] Re: Question

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

Hi :o)
It's Penny again :o) I'm going to cheat here and paste in a detailed email
from years gone by describing our experience with that chapter in the book
of trisomy :o)

>>>When Devon was born he weighed 6 pounds 8 ounces...when he came home at 6
days old he weighed 6 pounds 2 ounces...I've always been told it's quite
normal for any child to lose weight the first couple of weeks.
Now...Devon had a cleft palate which made feeding a real challenge. He had a
wonderful sucking reflex but it was an unproductive suck because of his
cleft. The OT came in while he was in NICU and tried a variety of bottles
and nipples...he did best with a MEAD cleft lip/palate nurser with a
silicone orthodontic nipple. The bottle was a short, oval, soft flexable
bottle that we had to gently squeeze as he sucked so that his suck actually
produced results! Feeding was an exhausting and continuous process for 9
months until he had his cleft repaired. I really really wanted him to get
breast milk because I believed that to be the best possible start I could
give him but he could not nurse (too frustrating and not productive).
SOooooooooo....I had to offer him each breast for 5 minutes to stimulate
milk
production and then bottle feed him.
It took an hour an a half to get an ounce and a half into him!!! After
bottle feeding him, I had to pump each breast which took about 40
minutes...it was then time to start the process all over again. It isn't any
wonder that I was so fatigued and exhausted. Now...by the time he had his
cleft fixed he was up to 5 ounces in an hour and a half and we were tickled
to death with that!!! The best thing that kept us going was that although he
was in the 5th-20th percentile, he DID continue to gain weight....albeit at
a slower than normal rate. I could only keep pumping for 3 weeks because I
was so exhausted I did not adequately empty each breast and I got
mastitis...VERY painful...VERY ill from it...I had a fever of 104 and truly
thought I was dying! I agonized over stimulating my milk to come back as I
discussed with the "lactation specialist ladies" but like Michelle...I
decided this was an aggravation and frustration I could do without...and
besides...I felt like Elsie the cow hooked up to the double pumper electric
breast pump :o)
We then switched to Nutramigin formula which seemed to
be better for gas and constipation issues ( we tried several formulas). At 9
1/2 months he weighed 12 pounds ? ounces...2 1/2 months later at 1 year he
weighed 15 pounds (after his cleft repair at 9.5 mo). He also started taking
6 ounces
in 20 minutes within a week of his cleft surgery!!! At 2 years he weighed 25
pounds...at 3 years he weighed 35 pounds...at 4 years he weighed about 39-40
pounds and now at 5 years and 4 months old he weighs 43 pounds (. OH MY
GOSH!!!! I just went to measure him and he WAS 41 inches tall back a about
6-8 months ago...he is now 43 inches tall!!!!!! That explains why he can fit
into his jeans again from last year (minus the cuff)...last year his pants
had gotten a little snug but he's gotten taller and less beefy...although he
has lovely muscle defintion in his thighs and calves (unlike his mother
:o)...he has grown up so much...he's even lost his extra chins and his
little tummy that he had :o) No more babyishness :o( Although he looks so
cute in his levis :o)

OK....now this is present day again and Devon is about 4 ft tall now and
weighs 54 lbs :o)
Love,
Penny...devoted wife to Joe and "Mom" to Nick (13 yrs...lover of fudge,
rollercoasters, Yu-Gi-Oh, Fishing, Legos, Popcorn Chicken, Pizza, cheese
sticks, chocolate icecream w/ovaltine sprinkles) and "Mommy" to Devon
(AKA-Stinky Boy, The Chief or Devonrude...Lover of Bear, Elmo and the
Muppets, Barney, Blue, M&M's and food in general, 8 1/2 years old (6-15-95)
!!! Full Trisomy 13 w/balanced translocation 5 and 13)...Trooper...our newly
adopted child (our infinitely patient and loving 7 year old male yellow
lab...adopted into our family 12/13/02 :o), Snitch and Lil' Dude (Nick's
turtles :o)
:o) DeLand, Florida
Meet our family at http://www.trisomyonline.org/victor.htm  (Compliments of
my dear friend Karen!
And last but not least, check out the homepage I made!
http://www.geocities.com/penvic4/Penny_sPage.html
The stone that was rejected by the builders, has become the cornerstone
(Psalm 118)

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

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