Curveball (diGeorge diagnosis)

Saturday, February 27, 2010 9:59 AM, MST

Why did I say routine? I should have known better! I need to learn that life in the NICU is anything but routine.

Yes

terday was a difficult day. More issues to worry about, and it was supposed to be our special relaxing day visiting with the family.

I did just love seeing my girls. There was even a special story time in the main area of the hospital, and the girls were able to pick out a little gift for Cassidy and pet a special little dog. It gave them something to do while Daddy and Nana visited with Cassidy. We ate our sack lunch in the cafeteria. The girls told me about the daily little things happening at home which I miss so very much. Then we walked around the nearby mall, bemoaned the germ-infested play area, and did lots of hand holding and hugging. I can't imagine how difficult this is on them, because they have never been away from me for such an extended period of time. If it weren't for Kevin and my Mom, I wouldn't be able to be with Cassidy when she needs me, and I am so thankful that I can feel complete trust in them to take great care of the girls.

Right over the little wall that separates my nook from the one next door, a six day old baby is undergoing his second surgery. Again, I am reminded how thankful I am that Cassidy is stable right now. If we still lived in California, she would be recovering from her first open heart surgery already. And she is just such a tiny little thing, I cannot imagine how itty bitty her heart must be right now. I saw one of her absolutely miniscule veins that they were trying to thread for the PICC line, and how difficult just that small procedure was. Open heart surgery is just so hard for me to even consider as a possibility. Even though I know it is coming in the future, I am just not prepared to deal with it at this time.

I am sitting here, gazing at my baby, and wondering just what God has in store for her, for me, for our family, and just how she will impact the world. She is a tiny little package of potential. I know that no matter what future test results show, future surgeries hold, that God will carry us through. I am clinging to him day by day.

Forgive me if my entries ever seem to ramble! I always start an entry at some point during the day and then I get interrupted, lose my train of thought, and try to pick up where I left off without really reading back over what I have written!