Posted by anne
on 5/26/2009, 6:27 pm, in reply to "Re: Just had baby with PRS"
172.163.144.110
first let me tell you my daughter just turned 37. The reason I started with that is no one in the ICU ever talked about anything further than next week! My pediatrician had just retired and I didn't like his replacement so I had to rely on doctors I didn't know. I finally called my old doctor at home and he called the hospital for me. The best thing he ever told me was that she had YEARS of surgery. Jen had a class 2 cleft which left her with a speech impediment. She had a lip adhesion that failed and her feeding tube kept her tongue out of her throat. She was sleeping through the night before I was! So take a deep breath and relax now while you can (well try anyway)
Good luck!
Anne
--Previous Message--
:
: Hi Maria,
: 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
: --Previous Message--
: 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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