Day twenty- telling our family

Saturday morning and we don't have much planned for the day. Going in to see Heidi and hopefully see the doctor too, then Colleen is coming in after lunch to visit.
When we went into the hospital yesterday morning, D took the kids up to the Starlight room while I sat with Heidi. I picked her up and just say holding her and rocking her. The nurse came in and said the neuorologist was coming in around 1pm. Jenny (the hospital chaplain) came and sat down for a chat which was nice. I got to go over some things with her (an informal counselling session), and felt better afterwards.
When she left I changed Heidis nappy and the nurse tube fed her while I held her. The social worker stopped by to let me know that Dr H would be coming in to talk to us around 1pm aswell, so I rang D to let him know. I went up to the Starlight room to watch the other kids while D came down to sit with Heidi and wait for the doctors. He got there just as they turned up so he got to talk to both of them.

The neurologist confirmed everything that we had been told about Heidis condition. They still want to do a few more tests to rule out genetic causes, but they mentioned one possible cause is the umbilical cord becoming constricted and cutting off oxygen to her brain for a short time. D mentioned that there was a huge amount of amniotic fluid during labour and birth, and they said it would have been due to Heidi not swallowing it like a healthy baby would, so it built up. It makes sense now, and I know I did get bigger quite quickly in the last couple of months of pregnancy. None of this information changes the outcome but it ties things together.

I rang dad and S to let them know we were bringing Heidi home to die, and they were both really good about it. D rang his parents and it was more of a shock for them.

I hope it's not too long before we can go home. I know it is going to be the hardest thing we will ever face, but I don't know how we will handle it until it happens. I never thought my baby would die- can't imagine it even now that I know it's going to happen. Too hard to think about at the moment so I'm not. Just doing the stuff that needs to be done and holding it together for the sake of Heidi and the rest of the family. When we get home I will feel safer and more comfortable and will see what happens then.