Day sixteen- Struggling to make sense

I have no idea what to expect from today. No good news anyway. Maybe some suggestions on how to deal with all of this. Supposed to be seeing the neurologist at some stage so maybe he will give us some more information.

Later- When we went into the nursery, Heidis cot wasn't in it's usual place. They had moved her into one of the private cubicles. Apparently her and the downs syndrome baby next to her are suspected to have some viral infection so they want to separate them from the other babies. I don't mind as I think it will be good to have a private space for now.
We saw the neurologist and he was no help at all. He was very vague and didn't really tell us anything. He spent most of the time talking about all the tests they could do to try and find out what caused this to happen to Heidi. I actually said to him that I don't care what caused it because it's not going to change the outcome.
The nurse that was on was much more helpful as far as practical things go. She is going to get us some info on tube feeding and show us how to do it.
The hospital chaplain came in too, and told us she is always available to talk.
The social worker came to see us but we were busy so I have to try and catch her tomorrow.

The nurse asked us if we wanted to take Heidi out in the pram, but I don't feel ready just yet. Maybe tomorrow we might take her outside when we take the other kids to the playground.

D and I really want to talk to someone about what the future implications are, but the doctors and nurses are only talking about the next couple of weeks and taking Heidi home. I want to know what our options are as far as long term care goes. I really don't think I can do it indefinitely. It will be hard enough for the next 12 months and that won't be too different (for practical purposes) from caring for a healthy baby. Anything past that is going to get very hard and I don't think my mental or emotional health would hold up. I still have to be a mother to my other children and I can't neglect them either. As much as Heidi is my daughter and I love her dearly, she is never going to know me or have any chance at a real life, but the others do.

We are still just trying to make sense of something that doesn't make any sense at all.