Meet Ryleigh, our CHD warrior. I was 22 weeks pregnant when we got the news that she would be born with a rare, life threatening heart defect called Truncus Arteriosus. In the final 17 weeks of my pregnancy we worked through the emotional grieving, preparation for our new life, and coming to terms with this health condition, that is not curable. As of today, she has had 2 open heart surgeries: her first at 7 days old (July 31, 2012) and her second one was on September 30, 2013 when she was 15 month old. In addition, she has had 2 heart catheterizations and there is another one in the next 2-3 months planned to place stents in her pulmonary branches that have severe stenosis.There is also another open heart on the horizon to fix her valves, which are currently leaking at a moderate to severe level. She is a happy girl despite all she has gone through. We did not expect her medical bills to be so expensive and with no assistance from any organizations - even though we were told this was life event and there was assistance from government agencies - they all shut the door to us, the system is broken and at times I feel punished. We were told she would qualify for insurance through the state that would help with the medical bill, so we did not work to get her on a pre-existing plan when she was born - big mistake. It has left us with mounting piles of bills. While we have piles of bills now for previous care, I am pleased to say for 2014 she is moving to a new insurance plan that has better coverage and lower out of pocket costs! here is her blog to read more about this sweet girl and the journey we have traveled to now.
Her blog: http://oursweetryleighandtruncusarteriosus.blogspot.com/
About her family:
I work full time in higher education, I teach college courses online as an adjunct, I have been doing this for 3 years now and work part time for 4 different colleges, so you could say I have 3 FT jobs! I love what I do because it enables me to stay home with Ryleigh and care for her.
Her dad works full time in HVAC and also loves what he does, except when it is 100 degree outside or below 50 degrees.
Her big brother Cael is 7 and is in 1st grade - he has been the one who has had the biggest adjustment, he loves his baby sister and in the middle of not truly understanding her broken heart and knowing that one day she is here and the next she may not be - that is hard for a kid to understand especially when he loves her so much.