My Gorgeous Gracie

This is Tom posting.

I was told that’s it my turn to post, so here goes! First of all, thanks for all the kind words on the comments from Michele’s last post about keeping me in your prayers! I can’t truly express adequately with words just how grateful we are for the many prayers, the faith, hope, love, support, and sustenance that we’ve received and continue to receive!

This seems strange to share, but for some reason I feel like I need to today. Just after we returned back from seeing confirmation on the high risk ultra-sound that my sweet baby did indeed have HLHS, I was working at my office, concentrating on a work related issue, and out of nowhere, I felt literally surrounded by the comforter. This continued day after day, and it was a truly remarkable experience. It took me some time to realize that this was a gift that was being given to me during this time we have with Gracie. I can literally feel the prayers of love and support. At this awful time, when I’d rather be anywhere other than here, I am being buoyed up by all our amazing family, friends, neighbors, and new blog friends. I know that we have a lot of family members out of town that would love to be here to support us and we want you to know that we are being strengthened by your prayers. Thank you, thank you, thank you!

I also want everyone to know that we are willing to fight, kick, scratch, do anything necessary to give Gracie the very best chance at living a happy life!! So don’t give up hope, we’re not! Again, we don’t know where the road we’re on will carry us, but we’re absolutely here for the ride!!

Update on Gracie: She was listed this morning for a new heart. We’re so grateful for the wonderful, amazing donor family who gave our daughter a chance at life. And we're doing everything possible to help make this heart work for Gracie. This is probably her best shot. But we’re also grateful for the chance to possibly get a heart that has a little more giddy-up in it!

They’ve done the regular stuff with Gracie that occurs with ECMO babies….brain scans for bleeding, echo’s of the heart, X-rays of her lungs, etc. Dr. K. also did some work on her this morning, clearing an air pocket that had collapsed her right lung, and adding a couple of new chest tubes to help clear the excess blood. She remains stable, and is still recovering from the surgery. When I came in, I asked them to put a blanket over her, for some reason, I just need to see that she has a blanket. We talked to the ICU doctor this afternoon and he just wanted to get a feel for how we were feeling about the whole situation and what we wanted to happen over the next few days as far as what our wishes in regards to how long we want to do this. In talking with him further, he said that chances of her heart working when it never worked in the beginning are under 10 percent. The problem today is that she is bleeding quite a bit and they cannot seem to get it under control. Our response to him was that we want to give her a few more days and see how she is doing. We feel she'll let us know.

Thanks again to everyone for all you do!!