131207 - UK

Neil went to the hospital alone. Yesterday we were suddenly told she had to go to a heart scan at the other hospital. Her heart scan went fine. But they need to check again 090108 because of a new noise from her heart which scares me a bit this time. There is a long time for January now.
I was sad I couldn’t go with them on her first trip out in the real world. I thought about cancelling my doctor appointment but to when? Next week we are at the hospital with Mary Ann and then we should get her home, so I better get it over with my doctor appointments and so. I need to be able to concentrate on her appointments as well now.
Therefore I dressed Mary Ann in new clothes. I didn’t want her to go out wearing the hospitals clothes saying: “Belongs to Aalborg hospital”. That was important for me. So I dressed her last night because I knew she was not going to be washed before after she has been out. I guess Neil told the staff that it was important for me. Because when I came tonight they had marked her papers with a note for all to see: “It’s important for the mum that Mary Ann wears her own clothes on her trip to the other hospital”.
Just for the record: It’s more important for the mum, that Mary Ann’s nutrition program is being kept as arranged! I wonder if they need at note for that as well. I’m so irritated AGAIN, because again they changed the bottle to one of theirs. So we are back where we started. If she can’t suck on our bottles how can we get home for Christmas then? Most important of all, we have planned and organized everything so we can stay with her from Monday next week. But there’s nothing to stay there for if she still needs the tube because they confuse her with different bottles all the time. The purpose for us to stay with her also in the nights where to feed her all by our selves with our own bottles 24/7. We should just use these days to get to know her routine.
Finally I have found something to wish for at Christmas: a big neon sign saying “Use own bottles!”