Paige Elizabeth Seymour
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Following a normal pregnancy Paige Elizabeth was born on Thursday July 3, 2003 at 12:27 P.M. She weighed 8 pounds 15 ounces. Immediately after she was born it was quite normal, my OB had my husband cut the cord and then she put Paige on my belly. After a minute the nurse from the nursery took her to evaluate her and do the APGAR. As soon as she flipped her over onto her back she began to gag and struggle to breathe they immediately began to give her oxygen through an ambu. They then began to talk about her tongue, my OB asked what was wrong and they nurses told her they weren't sure, only that her tongue was very far back causing breathing problems and that she had a cleft soft palate. The nurse gave her to me after they had her breathing right but she then started gagging again and they took her away from me.
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She was then transported to another hospital because the hospital that she was born at didn't have a NICU. After a day in the NICU at our hometown hospital she was transported to a children's hospital 3 hours away from our home. Everything was so devastating. The doctors there checked her over and diagnosed her with Pierre Robin Sequence. She was trached at 5 days old and she also had a G-Tube placed. She stayed there for 14 days and she finally came home on July 18, 2003.
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Now she seems normal to us we are used to the trach and G-tube (but that doesn't mean that we like them very much)! She is developing on track and is growing very well. Today, August 25, 2003, she discovered her tongue; I was so thrilled that I started crying. She has been playing with her tongue and moving it back and forth and side to side all day long!!! I LOVE IT! This is a very good sign for eating and possible decannulation in the future. I will keep you posted.
Update, October 2003: Paige is 3 months old now! She is doing great, she is ready for a Passy-Muir valve, which she will be getting in a few weeks. At her last doctors visit they noted that her jaw had grown some, which they and we are very about. We are currently working on her feeding issues, she is making some progress but not much as far as that goes, but otherwise she is as normal as any other 3 month old.
Update June 2004: Paige is doing great! She has been eating babyfood since 4 months old! She had her soft palate repaired on April 6, 2004, now she is a different baby! She can drink from a sippy cup, even with a valve, and she eats everything I will let her! She is scheduled for a sleep study on August 16, 2004 to see about decannulation!
Update, September 2004: Paige went in for her sleep study. They took the trach out bandaged over the stoma and hooked her up to all kinds of wires, she slept overnight for 9 hours while monitoring every aspect of her breathing and brain waves. She passed her sleep study with no obstructions and her O2 Sats stayed in the 90's. The doctors OK'ed the trach to remain out seeing no reasons to keep it any longer! It has only been a few days, but life is so different now! I love to hear her voice, she babbles and talks all day long, it is music to my ears!
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