Posted by kyla
on 12/16/2010, 6:33 pm, in reply to "Re: anyone used nasal trumpets?"
204.85.253.253
Hi Brenda, Thank you so much for replying to the message. Sounds like your daughter had a rough time in the beginning...glad she finally got to a place that could help her. I know first hand how hard it is to watch your child go through so much. We thank God everyday for giving Will to us and we just try to stay positive. Best wishes to you and your family. Thanks again! Kyla
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:
: --Previous Message--
: My son was born 9/4/10 with PRS. We opted
: not
: to have jaw distractors and b/c nasal
: trumpet worked for him he didn't require
: trach. Chin has grown alot since birth, but
: still not enough to where he can support his
: airway w/o nasal trumpet. So far we don't
: know of anyone or any doctors in the us who
: have used this approach. We had a 42d NICU
: stay and he is at home. He recieves care at
: a large medical center in NC with a really
: great craniofacial team. We feel like our
: son is somewhat of a pioneer, it would be
: great though to talk to someone who knows
: what we are going through :-) Any help would
: be appreciated! thanks, Kyla
:
: I had my daughter 9/29/10 she was not
: diagnosed with peirre robin until she
: almosted died @ 4 days old. We had come home
: from a 3 day stay @ a different hospital
: then she was born at, we were told she had a
: partial cleft & were sent home. After
: losing almost a pound we were sent to a
: hospital that dealt more with babies to get
: her to eat. We stayed the 3 days trying to
: feed her & could only get her to eat 1/2
: a oz every 2 hrs we told them she was having
: trouble breathing but they told us it was
: normal. After she stoped breathing & was
: given mouth to mouth we went back to the
: hospital & we sent to the university of
: michigan which is where she was diagnosed.
: They ttried the nasal trumpiet, but her
: airway was too small so we had to have the
: distraction or a trech. We had the
: distraction done 10/14/10 she was in the
: PICU on a ventilator for 10 days, most
: horrible thing I have ever seen. She had
: withdrawls afterwards & it took 3 weeks
: to finally get her to eat right without a ng
: or g-tube placed. She now breaths wonderful
: & with high calorie formula & the
: special needs feeder made by medela she is
: growing like a "normal" baby. Good
: luck with the trupiet if we could of went
: that way we would of, but distraction the
: jaw may still be needed. We are nervious
: about the palete repair, but so thankful to
: have our baby her with us alive.
:
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