So today was my cardiology appointment. Based on the lack of urgency the NICU placed on getting in for follow up to the cardiologist, my parents were assuming that the issues with my heart that were identified early on may not even be an issue any more. Two of the early problems (a VSD and PDA) did get better on their own. Yeah! However, after performing an EKG and echocardiogram on me the doctor diagnosed me with aortic valve disease. You can find out more about it at the link below:http://www.webmd.com/heart-disease/tc/aortic-valve-regurgitation-overview
The doctor told my Mommy that he wants to see me again in six months and nothing needs to change for right now - no activity restrictions, no medications, etc. However, this problem rarely goes away and most likely will get worse over time. In the future, I will probably need heart surgery to replace my aortic valve - which could be either a mechnical valve or one from a cadaver. It will probably be years before the surgery is needed and as it gets worse I will have symptoms of having a hard time breathing and getting tired much more easily. The doctor told Mommy this shouldn't interfere with my future surgeries (jaw distraction, cleft palate, hand).
Mommy did really well while he explained everything. She was fine the 30 minutes it took to get 3 blocks in front of UC Davis and another 45 minutes to get home to Elk Grove with me crying all the way. (Thank goodness for Lucille!) It wasn't until she had to call Daddy to explain what happened that she got upset. Mommy says she knows it will all work out in the end but she just wishes I could catch a break somewhere.
Mommy thought it was kind of ironic to find out the day before Valentine's day that I have a congenital heart defect. Actually this week is Congenital Heart Defect Awareness Week and Valentine's Day is Congenital Heart Defect Awareness Day. So to find out more you can go to this website: http://tchin.org/aware/
An interesting fact:
Congenital Heart Disease is considered to be the most common birth defect, and is a leading cause of birth-defect related deaths worldwide.
My parents are going to worry about the more immeadiate issues that I am experiencing right now (getting my travel pump & hearing aides) and cross this bridge when they come to it.
Peyton Nicole Smith
That's a lot to absorb so I think focusing just on what's next is a great idea. That said let me just plant a seed in your head. My sister-in-laws brother (or my friend) just went through a valve replacement with his son (I think he is about 9 yrs old now). They knew at birth that he would eventually need the procedure and the used pig tissue method. Anyway I plant the seed because they live there in Sacramento and the procedure was at Davis. They are a great family (dad, mom and 2 boys) so if you ever need a local resource let me know.
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