Lilly was taken off the ventilator today and is successfully breathing on her own. Her drainage chest tube and IV in her neck were also taken out today. Her blood pressure was high for a while due to agitation, but is stable now. She is finally able to take breast milk - she is getting 6 cc's of milk every hour through an NG (nasal gastric) tube. Her color looks good and she continues to be alert when not in pain/on pain medication. Unfortunately, we still can't hold her due to the RA tube in her heart (measures heart pressures) and central line in Femoral artery; hopefully these will be removed within the next few days (decision to be made by surgeon).
Please continue to pray for Lilly and our family. We are praying that she will be out of ICU within the next few days and moved to a regular room.
About Me
- Lilly Elizabeth
- My daughter, Lilly was born on July 10, 2008. After 10 days of having our beautiful baby at home, we were quick to realize our world would be changed forever. We were told that Lilly's heart did not form correctly and she would have to have several heart surgeries througout her life to fix this problem. He first surgery was when shhe was 17 days old. We then soon discovered that Lilly has a chromosome deletion, known as DiGeorge Syndrome or VCFS. Our little angel is doing great and grows more and more each day.
2 comments:
That is good! We are all missing the little down here. I was starting to get worried because no posts were made. Any more decisions on time??
I just found your blog. I'm a Truncus mom myself, but my little guy is 20 months old. I would like to add this link to my page, so that my other "heart friends" can check up on you all with recovery. It sure sounds like she is doing amazing! My son was in the hospital for three months when he was tiny, but had a lot of complications. You can check out his page if you like, and I will be checking up on you every once in a while to see how she is doing. She sure is adorable!
Ashlea (Caden's mom)
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