Day 4

Lily had another rough night Wednesday night. Even though she had the procedure earlier that day to keep the hole in her heart open, her oxygen levels were still not high enough. It was decided that she needed to go back on a type of medicine called prostaglandins. We were hopeful that the ballon septostomy would eliminate the need for these medications as there are some risks. However, the doctors decided she needed the prostaglandins and started her on them last night. This caused her to spike a fever of 102.7. By the time Lee and I got in there today her fever had subsided and her oxygen levels were right on target. Lori, her nurse today, used Lily's blankets from her great grandmother (my mommom) to make her nice and cozy. All of the nurses seem to have their own little tricks for making Lily more comfortable and more at home. Lee and I brought her an angel stuffed animal to keep her company and a special gift from one of Lily's first "heart" friends, Camden. I've connected with Camden's mom, Patty, through an organization called The Children's Heart Foundation (www.childrensheartfoundation.org). Camden sent Lily a special dog stuffed animal and you can see it in the pictures- it's her watch dog, watching over her in the CICU. Camden is 6 and has his own incredible story to share when he was as little as Lily. It's been so hopeful to hear his story and his mom has been an amazing resource and friend for me.

Lily's coloring looked great and by the end of today we were able to hold our little angel for the first time. It was a special special moment that we'll always treasure. There was not a dry eye in the place.