Melanie's doctor said with a congenital heart defect (CHD) your chances for Downs, Turners and Trisomy 18 are increased greatly. We got a special test done and now we know it is not one of those things. Just a happy healthy HLHS Olivia in the oven.
We visited with Deb from Children's Hospital in New Orleans and she is a wonderful lady. We got a tour of the CICU and were very impressed with their setup. Their surgeons do all of the rounding during their entire care, the baby stays in CICU the entire time. They have a really great interstage program (home health 3 times a week, OT's, PT's, pulse ox machine at home, and a scale). If we don't go to CHNOLA I hope they wouldn't mind having us for our interstage care through the time between the 2nd and 3rd open heart surgeries.
Thank you Brittany Booth (Melanie's sister), my wonderful sister-in-law for helping to spruce up the blog.
So cute...I think she will be having a few nicknames. I think most Children's Hospitals have the same interstage care between both the Norwood and Glenn and then the Glenn and Fontan. Although...after the Glenn life gets a lot more normal. We haven't seen a home health nurse in 3 months and the only time she will be back is for Synagis shots in the fall and winter. I have a pulse ox, but haven't used it since we had home health...you'll get to a point where you can tell her pulse ox.
ReplyDeleteI will keep you all in my thoughts and prayers as you move along in this journey.