Never

Alicia's not coming home. She's not getting "better". We're all so very at the end of everything. Toby's so insecure lately. We're all so done. It doesn't mean we get to be finished.

She was expected to not have any more fluid on her lungs anymore. She still does. She could be on oxygen for a long time.

She weighs 6lbs 2oz now. But these things are neither here nor there for going home. Going home is all about taking food by mouth and gaining weight.

But she's started to sleep all day now, while I'm there. She doesn't wake up and take good feeds. She wakes up, asks for milk, takes a sip and falls asleep. The nurses say that she's up for hours at night. At night she gets her bottles or tube feedings if she can't finish. We're never going to go home. This is our lonely life.

Today the care manager came in and asked if I would like to take Alicia home and have a nurse visit every day (as opposed to twice a week). Yes. I would. She'll talk to Alicia's NNP in the morning.

And I'll stay home with Toby tomorrow during the day. Maybe. Then spend the night with Alicia when she's awake.