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, August 19, 2011

I need to catch up!!

I have been so busy lately!  I have been meaning to put up a post for weeks now, but here it is, a month later since the last one!  The big kids started school this week, and so far so good.  It is always hard after the summer to try to finagle lunches, drop offs and pick ups, work, etc. after you have been out of the groove for a while.  But we survived!

Nicholas is doing well.  He is nearly 6 weeks post op.  In some ways it feels longer than that, but also it feels like it was just yesterday.  He is looking forward to being able to do some of his favorite activities that he has been restricted from.  He has missed swimming, riding his bike, going to the park to play, and many other things.  We will probably be going to a swim party and a bounce house party this weekend and he is very excited to be able to attend these types of things....finally! 

Nicholas, Noah, and Sienna
Two weeks ago we went on a fun outing with Laura, Wayne, and Noah.  We went to Santa Cruz and spent "A Day Out With Thomas".  Yes, as in Thomas the Train.  The kids had such a good time.  It was great spending the day with family and just having fun. 

As for check ups with our cardiologist, he said that everything is looking good.  The pressure gradient between Nicholas' Left Ventricle and his Pulmonary Artery is still measuring the same as when we left the hospital.  His new incision is a bit bigger than before, but has healed nicely.  Much to my dismay, his sternum looks odd to me now.  But overall, I couldn't be happier at the way he has healed back into my regular old boy.