Tuesday, June 2, 2009

Meet Lilyana

Lily was born on Feb 29th 2008, she is a leap year girl. She was orignally diagnosed in utero with HLHS. I (Mommy) prepared myself for what was to come. I geared up for 3 surgeries thinking we would have 2 in the first year then be good for a little while. But when she graced this world with her presences we would soon find out she was not only born on a special day, she had a special heart and a unique condition. She was born with Dextrocardia, which is where the heart is on the wrong side of the chest but what is unique with Lily is her heart is a mirrior image of ours. It is called Situs Invresus, meaning, all of her organs are flipped, not just her heart. Which is good, if everything wouldn't have switched, it would have caused grave problems. On top of the Dextrocardia SI, Lily has had a CoArc repair with a vein from her own wrist. She had a VSD that was repaired and caused a residule ASD. We have done nothing so far with the ASD, hoping that it will close its' self. She also has Aortic Stenosis , the valve has been ballooned and repaired several times but we reclently found out that the vlave is completely defected and will have to be replaced completely. So they will be taking her pulmonary valve and putting it on her aortic valve, then put in an artifical valve on the pulmonary side. On top of this all, we almost lost our precious CHD Warrior Princess to LVOTO- Left ventricular outflow tract obstruction.She had 6 blood transfussions durring that surgery alone, not to mention the ammount she had when she returned upstairs, along with the many other blood products. She is our Miracle, and blessing. She will be undergoing surgeries for the rest of her life to replace her valves. We get three to five years in between each surgery. She will be heading in this summer for her 4th OHS. After this one, we pray we are given as clean of a bill of health as we can get, and not worry about another hospital stay for years to come.


  1. Lily is just precious, keeping her in our prayers.

  2. what a strong lil fighter!! keep up the good work.