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.




























Friday, November 19, 2010

Ignorance is Bliss

Yesterday we got the official instructions in the mail from Stanford.  I cautiously read through them and I, being one who desires to understand the ins and outs of everything, feel reassured that we are in the best hands and feel confident that we are doing the best thing for Nicholas.  My dear husband, however, feels even more scared about the future after reading these pages and pages of information. 

This is the scariest thing either of us have ever faced in our lives.  Nicholas has never looked sick.  Only when he is really active can you hear him struggling to breathe and his lungs rattle and he coughs.  But otherwise, he is just a normal kid.  So it is very difficult to accept that you are about to put your child through a very scary, and somewhat unknown outcome of a surgery.  He has no idea what is going to happen here in about a month.  But it will surely change all of our lives forever.  I can only hope and pray that it is successful and that Nicholas will be one huge step closer to having a long and normal life. 

I will continue to research and learn about this defect to fill my craving of knowledge.  But sometimes I think it is just as simple as being present, not filling your mind with all the details, and that is the contribution you make to the situation.  Lorenzo and I are like that.  He is my rock and has been there for me since the day I met him.  I don't doubt that we will make it through this...we just will deal with it in our own ways.  I will be the rock for this one.

2 comments:

  1. Wow Brenna!!! I'm so proud of you!! This blog will be such a great outlet for you - and will be great for the rest of us heart moms and dads to walk through this with you! I'm so glad we found each other....you're whole family is in our prayers.
    And just a side note - I was beginning to train for a half as well....before the diagnosis. I've totally let it go. Thanks for being an inspiration for me! If you ever get a CHD race going, I'm going to join you!!! It's a promise!!

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  2. Brenna,
    Our last surgery was at Stanford. I'd be happy to chat with you about our experiences and answer any questions you might have. Maybe we could grab some coffee? Call or email me if you are interested. :)
    Andrea Himmelberger
    MLH of Sacramento
    a_himmelberger at hotmail dot com

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