Sorry it's been a while! We've been busy with lots going on. We got back from vacation on Friday evening. We had a VERY relaxing time! JUST what we needed at this point!
Today we had our fundraiser at the church. It was a HUGE success! We actually ran out of food at one point and someone had to run to buy more! So, a "good" problem as Laurie put it! Thanks to EVERYONE that helped with the event and that came out and supported the girls. Words cannot express our thanks!
Baylee's appointment in Boston is set for July 29th. We fly up on the 28th and will return on the 30th. I don't know if I put this in my last post, but Baylee had a check-up in Little Rock the week before we left to go on vacation. They did another Echo on her to try to measure the pressure in her heart/lungs. They were actually able to measure the pressure and it's NORMAL! Praise the Lord! This means that the Norvasc (blood pressure medicine) they have put her on is stabilizing everything at this point. This is very very good. The Hypertension Specialist still wants to see her and get their owns measurements with another full Echo and EKG. I think they will also do some bloodwork while we are there.
Anyway... I hope that everyone has been enjoying their Summer!
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!
4 comments:
I'm so glad to hear the great news about Baylee!
So good to hear from you! I was thinking you might have been on vacation, but wasn't sure. Good luck in Boston!
Wow. Sounds like good news all the way around!
I'm so thrilled to read the word 'normal' in relation to pulmonary hypertension.
Parker is battling the same issue. We go in for yet another EKG next month and then another right heart cath the month after.
Good luck in Boston!
Tammy and Parker
www.prayingforparker.com
www.5minutesforspecialneeds.com
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