Discouragement

I don't know.

I'm weary.

I don't want the next phase of all this. That's what this is. It's not the end. It's the next part. And the next part feels like it's all me. I want Alicia's nurses to come visit. I want her NNP to stop by regularly.

I do really want her to come home. I could cry if I said that out loud. I want to be with my daughter all the time. And I really know her. It feels so good when I step back into her room in the morning. I know my daughter very well. I make pretty good guesses about how much she ate and when she'll be hungry again. She has the most spells while feeding when I wasn't paying attention. She'll be very safe with her mama. And that is a huge responsibility. I feel like I could go sick with responsibility.

The last two nights she's lost weight. That's a bad thing. We pretty much know that it's because we cut the number of supplemented feedings that she gets. Now we know that we cut it too much.

I'm so very aware of how fragile she still is. At first the fight was against the ventilator, blindness, bleeding on the brain, underdeveloped vital organs. Now it is just against food. Weight. Strength. And it feels no less serious. I was still thinking that we'd just bottle her up and come home. Not so. About ten hours a day of breastfeeding and two bottles is all the strength she has. And for her, that's giving her all every day. And that doesn't cover the day. So she'll come home with her feeding tube still in, but her NNP makes it clear that it's not normal for her to let a baby go home like this. It's really me who's said, "Please, let's bring her home."

'Sober' would describe me. Ignorance would be the better bliss.

She did have another eye exam today. Her right eye is still mature, of course, and the left eye isn't. It's really very close though, and the eye doctor believes that she'll be just fine in 100% oxygen. In short, he gives the okay for her to go home as far as her eyes are concerned.

And she had her hearing exam. Just part of discharge. She passed.

Tomorrow she'll have her final head ultrasound and her car seat test.

Friday she'll have a lung x-ray. Just more discharge stuff.

Friday we'll decide if she's really going home on Saturday. We're willing to let that date go by if she's just not ready.

Today Alicia was actually needing more oxygen than she has in a long time. Most likely that means she's just tired. That sounds like nothing, but . . .

Her mama is tired too. And I'm going back tonight to spend time trying to bottle her. I spend all my time there during the day breastfeeding, so I'm never around to give her a bottle. Wish me sleep.