Posted by Ashley
on 4/16/2012, 4:41 am
72.248.26.89
Hi there my name is Ashley I am 28yr old and a wife and mother to two beautiful girls. Gi is 3yr and Londynn is 36gestational age she was born on February 21 2012 at 28weeks into my pregnancy. She weighed 2lbs 10oz and 14in but they hadn't diagnoised her cleft until after they were taking out her life support tube out of her throat, and saw she had no roof of her mouth. That was a shock, but they said no worries it would be okay that this was fixable and now adays it just a memory. Well then the Craniofacial team came and they look at Londynn mentioned to me that she had a small chin and when I asked well what does this mean they said oh not a big deal just that her tonuge really doesn't have much room and will fall back into her throat, but its nothing to worry about. They made it seem like no big deal. I was told and under the impression my sweet daughter just needed to learn to eat from a bottle and then I go to the hospital one day and they leave a packet of papers that I didn't notice at the time that said Pierre Robin Syndrome. I didn't read this at the time because I thought it was information regarding her cleft palate and well I had already most of the information that is put out there lol. So the next day after getting a break from my second job and my 3yr old I read it and the pictures they had in there of the trachs and the information on it I was like OMG what the heck is going on. I was very angry how could they just leave this for me and not call me and tell me that this is what they were diagnoising her with. It was upsetting but they didn't realize that the hospital she was just transfered out of hadn't told me. I forgave them for that and now we are at the point where she is still spelling but because of her prematurity they aren't sure how much is central and how much is blockage. So she will have a sleep study in a couple weeks that will act as the base line and show us what is going on. So that is why I am here I have no support groups where I am, and would love to talk to some people who are going through or have gone through this. Thanks for taking the time to read this. Ashley
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