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Miranda Lynne – Born 29 October 2013

I’m sure my story starts off the same as most of everyone else’s, we had no idea that she had prs. On October 29,2013 my daughter Miranda Lynne was born via c-section. At 10:06 pm my little bundle of joy was here! Well that was very short lived, I heard a very faint cry. The next thing I hear is they are taking her to the nicu because she had a “hard” time breathing. Well after all was said and done they told me what she had been diagnosed with prs and a cleft palette.

We spent the first 2 weeks at Mary Washington hospital nicu, luckily we had a nurse who’s son also had prs, so she taught us how to feed her using the Haberman bottle. Everything seemed to be going good until she had lost almost a pound and the dr thought she needed a g tube..

So later that afternoon we were transferred to vcu (Virginia commonwealth university) were we met with the WHOLE cranial facial team the morning after we were transferred.

We spent another 2 weeks there just watching and growing.

While at vcu she had a nasal trumpet put in, which she still currently has and will have till we determine if she needs a jaw distraction or not.

On 11/27/2013 we got discharged! I have never been so happy! We were discharged with a nasal trumpet, a sleep apnea monitor, and a NG feeding tube. We now have weekly appointments at her pediatrician and every other week with vcu.

We have to keep a very strict journal of EVERYTHING she does. And hopefully time will tell what needs to be done, and she grows quickly with no other complications.