Annabel was so bored today, continually grinding her teeth so of course, I was going crazy that they allowed us to unhook from all pumps an monitor and break free of this room. We went us a couple floor to a huge sun room. Then also that floor had a very nice playroom. Then I took her to get my dinner in the cafe on the 1st floor. It was nice to walk around a bit. This is a precious little boy that was wanting to play with Annabel. It was so fun to watch Annabel. I would put a toy in front of her and she was not so excited to play with it, but as soon as this little boy came over and started pounding on the keys she began to pound on it also. She was hardly smiling at us adults but yet she smiled broadly for him. His mother was very nice and I enjoyed talking to her in the playroom. He has something in his 16th chromosome like maybe 1 less, don't hold me to that but he has similar problems to what Annabel experiences. It is funny how just talking with an adult even briefly help you not feel so alone. She like me also had older kids not living in the home. At least she didn't ask me if I was Annabel's grandmother! This was a very friendly little boy Z, who is 6 years old. Wow, so is Annabel and what a difference. Annabel loves this attraction as it bounced up and down. Z wanted to hold her hand. Back in the room after a little bout of vomiting she is sitting up playing with her fireworks app on the ipad. I enjoy playing with this app also.
All in all today was a ok day. The best news of all is that we have our first culture back with preliminary results saying it is neg in the blood. Now all we need is 2 more days worth of negative cultures and then we can talk central line placement. Annabel isn't keeping anything down. I am sure the infection is part of the problem but it hopefully wouldn't keep us here. She has her own set of feeding issues and we work outside of the hospital with her GI doctor.
I had a nice sweet family, the West, who came by around noon and brought me lunch and dinner and several goodies. It was nice to visit.
Today wasn't my best day as I have begun to get migraine so often. It makes it harder to handle Annabel and then my tummy also became upset just for a few hours. Tonight I feel so much better. I do know that many of my issues stem from stress. For example I know that every morning we need labs drawn. I know I have to go through a few sets, levels of people that draw the blood. Finally, this morning I asked could NICU please come in. They called and they came over. They want the labs done at 4 a.m. so with so much trouble this morning Annabel was awake an agitated after they left. I was so tired when they all left out after 6 a.m. and Annabel just wanted to lay there and grind those pretty white teeth wide awake. Of course, I don't dare want to fuss at her so the stress internalizes and I am sure the migraines are brought on by the added stress. I know that coming to a new hospital 2 days ago added stress. I have to say it has been a pleasant visit and everyone is very nice.
HELP is arriving tomorrow in the way of my oldest daughter, Tara. Yea for Annabel and myself. The email, text, comments and phone calls continue and I know that she is being lifted up and for this I thank you. I am sorry if I haven't answered any of them as I seem busier here maybe due to the fact that they don't have any history with Annabel so there is someone coming in and out very often. But please know that I covet those prayers from you faithful friends.