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
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