Things have been a little nuts around here lately! We've been back from the beach for a week. We had a fundraiser at the church 2 days after getting home. We are so thankful that most of the food and items were donated. We had a fantastic group of people donate their time to help put this together. We THANK everyone for that!
This weekend was the 4th. I love this Holiday. We get to celebrate our FREEDOM!!!! And, I also love the fireworks and good southern cooking! YUMMY! Just a latest picture of the girls. I decided to change up the picture and theme for a while.
I've got to get with it this week and book our hotel room and rental car while we are in Boston. I'm anxious to get up there and talk to the Specialist. We are just thankful that Baylee is responding to the Norvasc (blood pressure medicine). Then, we will return on the 30th and turn around and head up to St. Louis on Aug. 19th for Blair's surgery on Aug. 20th. 6 weeks later we will go back to St. Louis for a 2nd surgery for Blair. We are going to be a busy bunch the rest of this year.
I hope everyone had a wonderful Holiday!
Hugs - Tiff
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Omphalocele and PPH/RVH
This page is for Baylee and Blair. Blair was born with a Giant Omphalocele on April 7th, 2008. She spent 7 weeks in the NICU at AR Children's. Amazed by the Dr's she came home at the end of May only on a little bit of O2 and no other medications. She was also diagnosed with a 3mm VSD of her heart. That has since CLOSED COMPLETELY and will not require surgery. Recently we found out that she was born with her heart on the right side of her chest. She had surgery on Aug. 20th without expanders. The Dr's were able to do a closure surgery with a bit of alloderm pulling the muscles together. We will be in St. Louis for a few weeks while she recovers.
Baylee is an energetic 4 year old. She loves swimming, her babydolls, playing outside and most of all her little Sissy! She is our little princess and we have been amazed at how well she has reacted to her little Sissy. She is WONDERFUL to her little sissy and loves her so much!
She was diagnosed on April 13th with a Right Ventricular Hypertrophy due to Primary Pulmonary Hypertension. In July we traveled to Boston to see a Hypertension Specialist. I LOVE this Dr! She is wonderful and answered all of my questions. She will have another Heart Cath on Dec. 1st to check the pressures in her heart again. She is now sleeping with a bit of oxygen just as a precautionary.
I hope that everyone enjoy's reading about our lives and if you learn something in the process that's even better!
Baylee is an energetic 4 year old. She loves swimming, her babydolls, playing outside and most of all her little Sissy! She is our little princess and we have been amazed at how well she has reacted to her little Sissy. She is WONDERFUL to her little sissy and loves her so much!
She was diagnosed on April 13th with a Right Ventricular Hypertrophy due to Primary Pulmonary Hypertension. In July we traveled to Boston to see a Hypertension Specialist. I LOVE this Dr! She is wonderful and answered all of my questions. She will have another Heart Cath on Dec. 1st to check the pressures in her heart again. She is now sleeping with a bit of oxygen just as a precautionary.
I hope that everyone enjoy's reading about our lives and if you learn something in the process that's even better!
1 comment:
I think you've been a busy bunch this WHOLE year! You are such a great momma, really, I admire everything you do for your girls so much. I'm so glad the fundraiser went well!
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