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Re: Just had baby with PRS
Posted by Rachael on 4/27/2009, 10:28 pm, in reply to "Re: Just had baby with PRS"
As Lori has already posted every child with PRS is different, you will be hearing that a lot I know it can be overwhelming my son is now 10 months old and doing great. He had a more severe case of PRS and a lot of difficulty breathing. He was in the NICU for 7 weeks and had the lip to tongue adhesion and later a g-tube placed.He was released from the NICU only to be re-admitted 5 days later because the LTA failed. Thankfully we were transferred to All Children's Hospital in St. Petersburg where they did the jaw distraction it looks and sounds horrible and scary but it saved my son's life and he actually tolerated it better than the lip to tongue adhesion and was in far less pain. You are already probably having to make a lot of difficult decisions concerning your baby and I can't imagine how heartbreaking it would be to be in different hospitals. I admire your strength. You are already doing a great job, the best advice I could give you is to gather all the information you can about PRS and this site is one of the best. Do what you feel is best for your baby, question everyone, and everything. Dr.'s and nurses are people too. Get 2nd or 3rd opinions if you think they are necessary, and find a Dr. who has experience with PRS babies. Also try to enjoy your baby challenges and all. God bless, and congratulations
: 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
: --Previous Message--
: I had a baby girl on 4/26/09 and she has
: 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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