My father-in-law is constantly asking me how I am doing it (juggling everything with Grace being in the hospital and the frequent ups and downs she has been experiencing these last few weeks) I always respond by telling him that I just do, I have no other choice. But today at the hospital I just don't know anymore, coming up to the hospital I have always been able to comfort Gracie, I have always been able to make her smile and help her feel comforted and lately all she wants is to be left alone and to be in her swing. I know that she is still sick and just had a central line placed through her groin, but this is still so so hard. I feel like she doesn't need me any more, that it doesn't matter any more whether I come or not. The nurse today said that she thinks that her swing is her safe place because nothing bad ever happens in it, but my arms use to be that safe place and I feel like now she just fights it when I hold her...I always thought that the thing about Grace that was the best is that she wasn't like so many of the other heart babies that hate to be held, but perhaps being in the hospital this time around she has developed that nasty characteristic.
I know I'm probably over reacting but it sure is hard, I just want my baby back, I want her eyes to light up the moment she sees me and a big smile to cross her lips. I want her to want me to hold her and comfort her and cry because I put her down, not because I am holding her. I just want Gracie to come home and to be allowed to care for her again.
From a medical stand point Grace is doing ok, no fevers since yesterday and her CRP levels dropped from 17 to 5.5 overnight. Though the doctors say she seems to be acting better, I'm not buying it (besides they are only in the room for 5-10 minutes) she is sleeping so much, not really smiling and has no desire to play. I just have to remember that we are moving in baby steps---Gracie baby steps.