30/05/10:Since the initial surgery, Raphaela has also had another one done to unclip the shunt they inserted and have an internal echo. She has pulled up quite well and currently they are just letting her rest herself up for the big challenge tomorrow of weaning her off the ECMO. She is behaving herself and her body is showing signs of improvement although they are now worried that the shunt is too big as too much oxygen is going to her lungs and not enough to her body. We will find out tomorrow whether they are right or not.
Raffy has lost most of the puffy look she came out with from the first surgery and is looking more like herself every day. I can now look beyond all the tubes and machinery and see my gorgeous girl again. She now squeezes my finger when I place it in her hand and sometimes she will even open her eyes for me and we will have a gazing contest with each other. I do find it a bit freaky that she can open her eyes and look at me when there is a big gaping hole in her chest and I can see her heart pumping. She started on 1ml of EBM an hour and is currently upto 4mls per hour. I can't wait till she is a bit better and can try breastfeeding as I am not liking all this expressing although I must say it is quite easy with an electric pump.
The nurses here are so fantastic and take all the time in the world to explain everything to me. They are so compassionate and are taking the best care of my baby girl.
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