Posted by Lori
on 4/27/2009, 9:45 pm, in reply to "Just had baby with PRS"
68.248.227.98
Hi Maria. As you will see from this message board, every kid with PRS has a very different and unique story. I know of some PRS babies that were able to go home right away. My son Henry was premature and has a complete cleft of the hard and soft palate. It took the NICU doctors about a week to diagnose him with PRS. He had the jaw distraction surgery done at 4 weeks old. He was released two weeks later with an ng tube and an apnea monitor. Using the haberman bottle for feedings was a little tricky at first, but Henry was able to get rid of the ng tube within a month. Today he is six months old and you would never know he had any issues. The jaw distraction is very controversial, but for our situation it was the right thing to do. It fixed his breathing problem immediately rather than waiting for his jaw to grow and possibly needing a trach or g-tube in the future. Please let me know if you have questions on anything or just need someone to talk to. I know it is a very overwhelming time in your life, when you are caught off guard like this...
--Previous Message--
: I had a baby girl on 4/26/09 and she has PRS.
: She was transferred to another hospital
: right away. I am still in the hospital. I
: had a c-section and will be in the hospital
: for at least 1 more day. Any advice what to
: expect or about how long to expect her to be
: in the hospital? Also what to expect once
: she comes home. We are very overwhelmed with
: everything going on.
:
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