Posted by Julie
on 3/10/2009, 11:03 am
76.202.234.83
Hi everyone, I'm new to this message board. I've read a lot of the posts but never really get the time to post my own message. My daughter Ashley was born 12/19/08 and was diagnosed with prs the following day, after a scary night of failed feedings and breathing trouble while rooming in with me in the hospital. She spent 6 days in NICU while we fought to figure out how to help her breathe and eat. Thankfully she made some improvements and we were able to bring her home on Christmas Day, the best present I could ever have hoped for.
Like many of the other posts I've read here, Ashley sleeps on her stomach with an apnea monitor, had to be partially ng tube fed till last month when we switched from the Haberman bottle that she struggled with to the Mead-Johnson nurser with ortho nipple. suddenly she went form only eating10-20ml from bottle and having the rest tubed to taking an entire 60ml from the bottle over the course of a week. It was amazing what that bottle change helped her accomplish. She started gaining weight well and at her 2 mo. checkup her ped discharged her from ng tube.
Overall, I feel very happy and thankful that she is doing so well so far. I am however often catching myself looking for other problems in her, worried and nervous, waiting for the other shoe to drop so to speak. Probably because until now the only person I've had to talk to about things is my husband, but no one who's "been there, done that". Anyway, I've gone on long enough for now, thanks to anyone who's held on this long reading this
.
I do have one question b4 I go tho...anyone had any experience with a palatal prosthetic? It's kind of like a mouthpiece that covers the cleft to allow the plates to grow together some on their own. Ashley's plastic surgeon recommended it bc of her cleft being so wide I guess there's not much to work with. She got hers mid February, can't eat with it in so we remove it for feedings. But overall she seems so unhappy with it in I don't know what to do. Any advice would be helpful.
thanks, Julie
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