Posted by Jenn on 7/16/2008, 9:27 pm, in reply to "Re: New mom of baby with PRS"
70.108.103.229
My daughter's name is Maya. Thank you so much for your responses. It is so wonderful to hear from other parents who have gone through the same or similar expereince. I'm feeling so scared and lost and just can't beleive how this could have happened to us. We were keeping it pretty well together until we got the results of the hearing tests. It would be so great if it was just fluid on the ears in the end but these were pretty intense tests that were done and lasted for more than an hour. Were those the same tests you expereinced? I will email directly as well becasue I have a ton of questions. Thanks again!
--Previous Message--
: I could have written your post myself 21 mos
: ago. Same deal...PRS, cleft palate, in NICU
: with breathing and eating issues, failed
: newborn hearing tests, learning to eat
: slowly and being tube fed in the meantime.
: Yup, that was us.
:
: Kate got the tongue/lip adhesion Vicki
: mentioned at CHOP in Philadelphia. For Kate,
: it didn't work and she ended up trached. I
: hadn't found this website, and didn't use
: the internet as a resource. If I had, I may
: have realized there are different doctors
: with different options and opinions out
: there. Kate was decannulated (got her trach
: out for good) this past July 4th. She's
: doing great, a bright, happy, adorable and
: smart little girl.
:
: I've learned a lot the past 21 mos, and I'd
: be happy to chat with you about all of it.
: Email me at faywrayy@yahoo.com. I can also
: show you pics of Kate so you can see how
: much her jaw has grown out.
:
: Let me know Jenn...and hang in there! And
: what's your baby girl's name???
:
: One more thing...Kate's hearing is fine now.
: She had tons of fluid in her ears and that
: caused her hearing to test off.
:
: Angela
: --Previous Message--
: My baby girl was born 10 days ago and has
: been
: in the NICU ever since. She has a very small
: chin and cleft palate in the soft part of
: the roof of her mouth. Her tounge falls to
: the back of her mouth and blocks her airway
: so she has to always be on her stomach. We
: just got the results back from her hearing
: tests and they were not good. We're not sure
: of all the details but they are pretty sure
: she has severe hearing loss. I'm looking to
: connect with other parents that have a child
: with these same issues. I live in the
: Washington, DC area. I would love to hear
: from anyone who is willing to chat with a
: scared mom and share their stories. We have
: no idea yet when we can bring our daughter
: home. She has to improve with breathing and
: feeding. She is able to take part feedings
: by the bottle and part through a feeding
: tube...we are using the Habbermen bottle. If
: anyone can share other resources and/or has
: any advice or stories for me, it would be
: most appreciated. Thank you.
:
:
:
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