Posted by aaron on 1/29/2008, 1:55 pm, in reply to "Dose my baby have PRS"
24.234.232.85
our daughter was born in dec of 06. she was in the nicu 30 days and we started talking to the doctors about a plan to bring her home. we met with a phenomenal craniofacial surgeon and he discouraged the g-tube and fundo in favor of a mandibublar distraction surgery. at 3 months they performed the surgery and it was gruesome. two weeks after the surgery she began using a haberman nipple to eat and we were able to remove the nasogastric tubes completely. she was still spitting up after taking her medications reglan and xantac. we had noticed that she didnt spit up as much before she was on those meds so we discontinued them and she began eating within one to two days. she is now 1 year old and has finished her palate surgery too. the surgery early on, in my opinion, was a lifesaver and prevented the g-tube and fundoplication procedures. we live in las vegas by the way.
aaron
--Previous Message--
: I hope some one can help me. On December 11 my
: son was born at 35 weeks 2 days. The day he
: was born the doctors told my husband and I
: that he had some kind of rare genetic
: syndrome that they had never seen before.
: Some of his characteristics were just like
: my daughter and husbands side of the family,
: smaller lower jaw, large cheeks, but others
: we couldn't explain. To date his symptoms
: are cleft soft pallet, bicuspid aortic
: valve, ulnar deviation of his fingers on
: both hands, one funny looking 2nd toe on his
: left foot, and slow GI motility. He is still
: in the NICU and is now past his due date.
: The doctors want to do a fundo and G-tube,
: even though he has been able to nipple all
: his feeds, and send him home. I'm worried
: that a fundo, which is a perminate surgery
: will make it impossible for him to eat later
: in life.
: Please Email me if you can help!
: Huhawkins@comcast.net
:
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