Hands off!!

Weight check = ?? Lilly was weighed last night when she was checked into the pediatric intensive care unit. Her weight was up from that morning. But today they still had not checked her weight by the time I left the hospital a bit after 7:00 p.m.

The unit Lilly is in now seems pretty stressful. Well I guess it's more Lilly than the unit itself. I was so happy to see my wee little girl today. I went to her bed and started talking to her and touching her. She looked at me and started fussing. I knew she wanted me to pick her up. (At home she will do that - turn her head towards me and start fussing when she hears my voice.) The nurses were very accomodating and moved Lilly's machines around so that we could sit in a chair. It was quite an ordeal to move her. Lilly was so covered with tubes and wires that they wanted her to be on a pillow in my lap. Lilly didn't like that. (The main way she likes me to hold her is upright against me.) So she started getting really worked up and then ended up having her gasping breathing problem. (They said her trachea was obstructing.) I couldn't calm her down and she started panicking which made it worse. So they took her away from me and gave her a sedative. It took awhile but she finally calmed down and went to sleep, though not before pulling out her feeding tube, which was now in her throat.

So how disappointing is that - to be in the room with my baby and I was afraid to even talk much to my husband because I didn't want Lilly to hear my voice. When I called my husband tonight to let him know I was home from the hospital safely he said she was fussy again and it was just breaking his heart that he couldn't hold her and comfort her.

Another disappointment to me was that Lilly's IV had been moved from her hand to her head. (The vein in her hand was collapsing.) And because they plastered tape on her head they shaved that area. Now I'm glad the tape won't hurt as much when they pull it off, but I hate her losing any of her dark hair!

The doctors are trying to get Lilly's surgery date moved up. (It's currently scheduled for this coming Thursday.) We should know tomorrow if this is possible. They are trying to keep Lilly stable and ready for surgery now. They stopped her feedings (milk by tube) yesterday evening and have her hooked up to the IV to get nourishment. I hate her not eating the good milk, but they wanted her stomach empty so she could be ready for surgery. They did say for the Pulmonary Artery Band surgery that her weight isn't as important.

One of the nurses called Lilly "feisty" today. She really is a fighter! Our little Miss Firecracker. She'll be 3 months old before too long. (October 4)