At our stay in Marshfield the doctors did a gynetic test on Lilly. Just got a call today that she has a doubled gene that has NEVER been seen before! It may be a heart baby gene. Testing hasn't been around all that long and most HLHS babies have other problems wrong...Lilly does not....Just her heart! Paul and I will go to Marshfield to have our blood tested to see if either one of us has this. If we do not, it may be a missing link in prediagnosis. They may even name it after her if it is proven!! Pretty Cool huh!
Oh and I have been fighting with Milwaukee today! They told me NOT to follow up AT ALL with them and to use my wonderful cardiologist up here. (Who thinks I am crazy and knows nothing!) When just 3 weeks ago they told me that they were going to handle EVERYTHING because of the comunication issues between doctors and us! I feel as though we are being torn between doctors and they are all giving us different answers to our questions and blaming the other! They better figure out what is going on fast or I will find a cardiologist elsewhere and just have Milwaukee handle the surgeries!!
On another bright note, Lilly is at 5.84 kilos (12.8 pounds)!!! 13 here we come!! I am all for this Pediasure she still throws up but it really doesn't matter with all the fat it has in it!! Pray for our Potter friends (Ellie), they are having a rough time! Thank you!!
We set up this blog to update about Lillyann's struggles and triumphs with Hypoplastic Left Heart Syndrome. Born March 24, 2009 ~ 1st heart surgery (Norwood) April 1, 2009 ~ 2nd heart surgery (Glenn) July 10, 2009~ G-tube placement September 22, 2009 ... 3rd heart surgey (Fontan) Sept. 11, 2012.
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