Mary had her sedation first thing again today. It looks like we are on for 10 am tomorrow with the sedation team so we might be moving out today if they have a room. I sent a ton of stuff home with Wesley yesterday-after seeing how small the floor rooms are I knew we had WAY too much stuff. Mary is still ultra fussy. We did get her pain meds increased today so hopefully that will help. As she is more alert and feels better I think she is more cognizant of how bad she feels. Her IV came out of her foot yesterday so I tried to get her to stand up-and she was so shaky she could hardly stand. I think it really hit me then how long this is going to take to get her back to normal. I definitely think that getting full feedings through her NG tube is helping a lot-she is perkier and awake more now that she has enough calories. She's getting about 1200 calories/day which is great. But she has totally lost the desire to eat/drink by mouth. In reality she is back to newborn status. We had a great night last night-a 3.5 hour stretch which is the longest stretch I've slept in a week. Which is really sad! She has gone back to wanting to be held, it was really sad yesterday when she didn't even want me to hold her. I think she was just so miserable.
The visits yesterday went OK. I hadn't slept well at all the night before-I think we were up every 2 hours at least and she was fussy and I was just out of it. I've spent so much time just sitting with Mary in the last week, mostly here just by myself, although Wesley has been here a fair amount. It was so strange to see people and to be with Robert and out of the hospital and not fully centered on Mary and what she needs. We both took a nap afterwards and that helped a lot!
The resident said today that we might be doing this for another week/10 days. I guess we'll see what the plastic surgeon says tomorrow. I'm definitely staying for it tomorrow! The last 2 days I've left for the procedure since it's my only chance to eat breakfast.