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.




























Sunday, July 3, 2011

Surgery Looming

We will be heading to LPCH on this coming Friday, July 8 for pre-op, then Nicholas will have his second Pulmonary Artery Banding surgery on Monday, July 11.  He has been home for this last week and will be home this coming week, in somewhat "isolation" to hopefully be as healthy as possible going into this. 

I feel like I have been somewhat of a space cadet lately....I have a very hard time focusing and I feel like my mind wanders and I am worrying and worrying all the time.  I know that we need to do this, but it is so hard trying to get ready for this again.  We have been lightly discussing "surgery" and this time we will hopefully prepare Nicholas better.  We have been collecting some "projects" that he can keep himself busy with while he recovers in the hospital, and he seems like he understands that these are for post surgery, not for now. 

I think I have all the arrangements made for the other kids, but this also brings a lot of stress to my mind.  I am most worried about Sienna, as she is little and a little crazy!  I keep telling Ny that I trust her to take care of Sienna, but that I absolutely do not trust Sienna!  She is a busy little girl and has no fear of anything....I hope she will be ok.

I will try to update often....thanks for any prayers!

1 comment:

  1. Oh my! I'm sure that busy little Sienna will be in good hands with teacher, Auntie Ny and her family; as well as PaPa George. Don't worry about her and brother Beau. Just concentrate on the "mission" at hand. Love you all, Cindy

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