Well, today is the first day for me to be home with the girls. Baylee is playing dress up and dancing in the living room. Blair is sleeping and I'm making 1,000 phone calls for medical stuff. The home health nurse called me this morning. She will be coming by once a week for 4 weeks to weigh Blair and check on her. That way I don't have to take her to the Dr. every week. We do have an appointment with our regular pediatrician on Friday.
I'm doing okay... maybe feeling a bit overwhelmed, but I will make it through!
Blair is still having some gas issues. Poor thing... I feel so bad for her! I keep loading her up on gas drops, but she gets fussy a couple of times a day. I wish she would burp better!
Hugs - Tiffany
skip to main |
skip to sidebar
Background
Praying for Ryan
Praying for Karsie
My Peepers!
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!
2 comments:
I am so glad you guys are home! I want to come see you guys but I am going to wait awhile so you guys can get rested up! I can't wait to see you guys! Take care and see you soon!
I'm so glad to hear you guys made it home! Sounds like things are going pretty well for you, too. Yay!!
Post a Comment