Did you know that 1 in 100 babies in the U.S. are born with a congenital heart defect? CHD's are the leading cause of infant death, and the #1 birth defect of live infants. The cause of most congenital heart defects are unknown, yet funding for research vastly lags behind childhood cancer and other genetic diseases.

Has your child been diagnosed with l-tga? I would love to talk with you. Please enjoy my blog and email me if you would like to join a network of parents of children with l-tga and other CHD's.




























Thursday, January 19, 2012

Back For More Testing...

As I start this post for today, I realize that I haven't kept up with this as much as I wish I could have...but such is the life of a busy working mother with four kids....with that being said....

Here we are, back at the children's hospital at Stanford, while our boy is in having his MRI and dual heart cath procedures today.  Nicholas has been doing very well, he is really growing and he is very active, even with his heart trying to slow him down.  Yesterday we met with part of his cardiac team here at LPCH and they said his LV function looked really good on the echo.  They mentioned that the gradient didn't look as high as expected, so hopefully some questions will be answered today during his cath to see what is really going on between his left ventricle and his pulmonary artery.  This will determine what the next step is....another banding?....wait to let Nicholas grow, therefore letting the band tighten naturally?....or the big Double Switch???

Nicholas with Clarice, getting ready to go in to MRI and heart cath
this morning. 

I have such emotions going through my brain right now.  I am so scared of that Double Switch.   I know that it will enhance his life, but the thought of what they actually do...it freaks me out.  I don't think there is a way for a parent to prepare for the thought of a surgeon taking your child in his hands and restructuring his heart. It is just plain scary. 

I will keep you posted....