Thursday, February 18, 2010

The Olympics and Heart Disease...


So watching the Olympics last night, I learned two things: #1 The U.S. is fun to watch when we deliver on all the promises and prevent embarrassing media coverage... and #2 Shaun White was born with congenitive heart disease just like Jane! He had two open heart surgeries before he was 1 yr as will Jane - pretty cool! I was already a fan but just became an even bigger one.

So last week Jane had a catherization procedure (Cath Lab) where they basically put her under for a few hours, ran a line into an artery and were able to take pictures of her heart to see the things that won’t show up on a normal echocardiogram so that they know exactly what to anticipate for the next surgery. To be honest, taking a trip back to Rady’s for another procedure had neither Jen nor I sleeping well the night before... no matter how much time you spend there you just never get used to it. The procedure overall went really well; they said that everything that was done in the first surgery is doing exactly as it should, they were very pleased with what they saw and there are no new issues to deal with as we progress towards surgery #2. The only negative post surgery issue that came up is that it completely tossed around her sleeping schedule and she has been up at night pretty much every day since... we are slowly getting that in control at about the same speed I get out of bed in the morning...

The next surgery will probably happen sometime in March/April. This will be another major full open heart surgery to do some plumbing fixes on the heart and make permanent fixes to the stuff they did in the first surgery... Jen and I are both having a hard time coming to terms with the next surgery as Jane is obviously more aware of us and alert to her surroundings, but we understand the necessity of the situation and we have had the benefit of seeing how tough our Jane is.

Man she is so much like her Momma...

Other than that she is finally figuring out how to hold up the enormous thing on top of her shoulders (the pediatrician said her head was in the 75th percentile for her age) and we are starting to see her neck as well! She “talks” non stop, smiles at everything, laughs when Jen kisses her and she loves her time at night with me. (She told me so).

We have been keeping a good routine with seeing as much family/friends as possible and attempting to catch up on rest when we can but that part’s not that important...

Well that’s about it for now, I'll update again when I know the dates of the next surgery and thank you to all of you who are keeping Jane in your thoughts. She’s a really special girl, and we are looking forward to holding her hand through all of this and then watching her grow! (Not her head, that can stay where it's at).

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