Posted by holly on 7/14/2008, 10:15 am, in reply to "New mom of baby with PRS"
68.58.169.12
hey Jenn...congrats on your new baby girl! I know that this is a very scary and frustrating time for you and your family. My baby Kate was born april 1 and has isolated prs/csp. She also had a TLA at three weeks old. Those first few weeks seem like some kind of distant dream now. Those were perhaps the darkest days of my life. It is so hard to watch your child go through this and feel like you can't do anything to help them. My Kate is almost four months old now and a thriving/happy baby with a smiling/happy momma. It doesn't seem like it now, but you will get through this and one day offer another new scared mommy some words of comfort. I would love to chat with you via email if you want and could send you some pics of my baby and how she and her jaw have grown. Hang in there girl and remember to take a breath and most importantly enjoy your new baby!
--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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