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 13, 2011

Some exciting news! And Nicholas turned 4 years old!

I took Nicholas to his third cardiology appointment since we got home from Stanford and at the previous two appointments his gradient was measuring consistanly at around 30mmHg.  But on Tuesday this week, we finally saw Dr. Wright and he took another two echos and he found the gradient was about 45mmHg.  I AM SO EXCITED about this!!!  I was feeling a bit discouraged that everything we have gone through so far was kind of in vain, but 45mmHg is double from what Nicholas started from.  And to make it even better, Dr. Wright thinks that it is even higher, but Nic's anatomy and his tenderness around his incision makes it hard to get a true, accurate measurement.  He thinks we will probably be looking at going back to Stanford in a few months for more Cardiac Catheterization and another MRI so they can get an accurate measurement inside his heart and then decide when to do his next PA banding.  Hopefully that band is doing it's job and getting Nic's LV ready to take over systemic pumping....
On another note, Nicholas celebrated his 4th birthday on January 9th.  Happy Birthday to my big boy!  We enjoyed the company of Nonna and Nono Degano and Nic's cousin Noah and auntie Laura and uncle Wayne.  I attempted to make Nicholas a "monster truck cake" and it turned out pretty cute.  He liked it at least! 
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1 comment:

  1. Carole HiebertFebruary 4, 2011 at 9:13 AM

    Happy Birthday Nicholas! I'm sorry we're late - for some reason I wasn't getting the blog update alerts. That a pretty amazing cake! WOW! I'm really impressed and I better not show it to my boys.....they'll want one today!! So thrilled about the gradient! That is awesome news! We still haven't seen much change (and almost a year post-surgery!), just need to give him time to get bigger! So glad for your update!! Talk to you again soon!

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