Cecilia this morning:
Friday night I woke up screaming. I dreamed Cecilia died. Saturday night I woke up crying. I dreamed Cecilia needed a transfusion, but all the blood was gone...there was a long ling of willing donors, but none of them compatible.
I have been feeling so weak the past couple of days. I thank God that I found Sisters By Heart when I was pregnant. Their love + wisdom has got me this far and led me to other support groups. It is hard for me to reach out and open up sometimes, but even just reading and relating to others feelings helps. I've started to reach out more. I know I'm not alone and moms all over the world are in my shoes.
Mid week, last week, they had many failed attempts of placing a NJ feeding tube that goes to the intestine. They decided to wait for extubation. Since that plan changed, this weekend she was given a NG feeding tube, and threw it up. Her surgeon told me this morning they will be starting her on some kind of med to help her with that before reintroducing tube feeds again... and I'm assuming we probably have to wait for the vent to be gone but he wasnt clear on that part so IDK. She has been getting nutrients via IV, but she really needs the calories now, it will also help her recover better. He checks on her everyday and that means a lot to me! He is still really happy with how she has been recovering. Friday night I ran into the doctor that we spoke to after her prenatal diagnosis and he gave Karl and I the "trip to Boston" analogy (family knows the story). He asked how she is doing. I said, "I think we ran out of gas in new York!", and he laughed and reassured me we made it out of New York. Cecilia is now off Epinephrine, and Lasix has been turned off of her drip for a while now, though they still give her Lasix just not through the drip. 2/3 chest tubes are gone. I won't be surprised if the last is gone by morning, it's really putting out nothing. Her IJ is leaking and should be replaced with a new central line by now, since I signed consent this morning, and it still wasnt done by this evening. Reminds me to call her nurse and check on that status...I hate for her to be pricked again, but I have to admit I'm sort of glad that line is broken. Her neck must be so stiff from having limited positioning. The IJ has been there since June 30th. Once again, I am also glad for the weekend to be over. ;)