Thursday, July 12, 2012

OVERDUE... to say the least

Hello all. I can't believe how long it's been that I've put a post up on the blog! BUT, I will say that no posts usually mean GREAT news. I'm happy to report that we are still living blissfully free of the hospital and Lilliana is thriving beyond belief.

We did have a ER visit about a month ago (due to some lower O2 rates and a VERY persistent couch). The conclusion was that she has a "leaky vain".... her pulmonary vain is attempting to pump blood up where it needs to go but it sort just fizzles down. She is on blood pressure meds now and that seems to be doing the trick.

BUT, the topic of her FONTAN (3rd stage of repair) was discussed, BOO. We had a cardiologist follow up appointment 2 weeks ago and are awaiting a consensus from the entire team and when to proceed with a heart cath and then the Fontan.

Life has been so real, normal, and for the most part quite medically worry free. I can go days without thinking about her heart and that is unreal! I'm slowly preparing myself for this bump in the road. I honestly think I went through the stages of grief again.... anger denial  and now I'm in a very calm place of just knowing in my heart all will be well.

Lilliana proves every single day the power of prayer! What a lovely little miracle.
dancing in her undies! LOL