Great paper on HLHS

On one of my Facebook Heart Mom pages there was a discussion about mortality rates associated with HLHS. These rates vary greatly from center to center/ doctor to doctor and can refer to death rates after surgeries or long term... all very confusing. One of the moms posted a link to a really comprehensive paper published in January of this year http://content.onlinejacc.org/article.aspx?articleid=1096837 that breaks down some HLHS facts.
I love these heart moms. I never could have found this without them and am constantly reminded how lucky we are to have been diagnosed in the age of the internet and social networking. To have been diagnosed 10 years ago would have been much scarier and lonelier. I am in contact with several HLHS moms that live in PA and they are full of helpful info about the area. We ate Smores at a great restaurant they reommended called Cosi the other day - we all had a great time toasting marshmallows at our table. I think we'll do more siteseeing this weekend too. I want to get our picture in front of the LOVE sculpture, see the Liberty Bell of course, and the girls have been BEGGING to go on a horse and buggy ride. It is such a surreal state we are in right now - site-seeing and marking down the days - 19 days until his due date - all the while we have this huge unknown brewing on the horizon. We have to take this time for us - for our family - and just live it. Build up some good memories and squeeze out all the together time we can. We are taking lots of pictures and probably giving into the girls a little too much but that's ok I think.