I'm so very sorry, Epic. I wish we lived closer and could give you the support you need in person, but we're at least here if not right there. It's so very hard. I am so sorry.

In her 3 days of life ltc has learned that if she makes sucking motions with her lips and fusses Mommy or Daddy will pick her up and tend to her. This led to no sleep for us last night when she didn't actually want to eat but just wanted to be cuddled. Eventually the nice nurse took her for a couple of hours so we could sleep. As soon as she was out of our room, she slept and didn't make any attempt to get anyone to pick her up or act in any way like she needed to be fed.

Ahhh, Epic, it's hard to traverse that space between suspecting it's the end and hearing it said.

That's exactly it. Thank you, David. Thanks all of you.

She's expected to stay at the rehab until sometime next week, while the Dr thinks (or can convince the insurance company) it's medically necessary to keep her to get her fluids evened out. So I'm scrambling a bit right now to figure out how I'm going to get her some day help while I'm at work and she's at home. She's got insurance to pay for home health care, but I've got to find someone - and the fine print in the insurance policy, we've got to pay for the first 20 days before the insurance kicks in.

I'm probably going to end up taking a couple/few vacation days and/or some FMLA leave to get things figured out and set up. Of course, it's just about the worse possible time at work for this to happen, but I'm afraid they're just going to have to deal.

And I think I got about an hour of sleep last night because my brain's in such a tangle. I feel really bad for those of you with insomnia - that feeling of looking at the clock that says 3:11 and feeling that sleep is not imminent, but it's too early to get up and in the shower, and maybe if I just close my eyes...

I'm sure I will find a way to make this work, just right now it's like an avalanche of crap I need to figure out. And while I'm trying to make myself just plan the next few days or the next week, my brain keeps periodically popping up with trying to plan the funeral and stuff that I absolutely don't need to deal with yet and would feel better if I could stop giving energy to it.

What a smart girl is ltc!

Emmett's godmother gave me some of the best advice for new babes, which was: Remember, they just want agency too, like anybody else. And the only way they can control their environment is by crying, or similar behavior which can be exhausting. But they're not trying to wreck your sleep. They're just trying to get a handle on the world.

Having warning is a double-edged sword, Epic. You can brace yourself, but then you have to wait for the resolution. May everything be as peaceful as possible.

I've told this story before, but years ago I did an article about an extremely premature baby. The baby had just come home and was attached to a heart monitor. In the middle of the night, the monitor alarm went off and the parents rushed in to find the monitor was detached. After a few nights of this, they put in a camera, which caught this tiny baby very deliberately pulling off the monitor, having learned that people would rush in and fuss over her.

Can you talk through some of this with your brother when he's here? Maybe he'll step up and if he doesn't, at least he'll know how guilty he should feel. You can always talk through it with us.

Can you talk through some of this with your brother when he's here? Maybe he'll step up and if he doesn't, at least he'll know how guilty he should feel. You can always talk through it with us.

Assuming this is for me. I've spoken with my brother. He's pretty clear about the limits of what help he'll provide. He's who I kept thinking of reading that Metafilter article somebody linked a week or two ago. He not only doesn't want to be a "caring nurturer", he doesn't grok the necessity of it. I was talking with him last night and I guess we kind of concluded that he and I have different levels of what amount of inconvenience we'll endure to provide comfort to her. I say she gets miserable if somebody doesn't visit her pretty much every day, he doesn't think it's necessary to visit every day (or week, sometimes) if it puts him out much.

And then there's the issue of the house. Mom lives with me, in the house we grew up in. She always wanted us to both inherit it, despite the fact that I've been the "helper" for a couple of decades now. But she had to put me on the deed to qualify for a refi a few years back, so it's just going to be mine. By that time she came around to being okay with it coming to just me, because of the level of care that's been increasing year over year. But he looks at it as it's okay that he's not getting any part of the house (though she has got a little bit of Life Ins for him), because I'm paying for it now.

So now that there's a bit more of a timeclock on it, I think he'll make a little more effort to see her more, but it's pretty clear he's not going to help ME. Not even enough to commit to visiting on a particular day so I can have a night off.

But he looks at it as it's okay that he's not getting any part of the house (though she has got a little bit of Life Ins for him), because I'm paying for it now.

Well, at least he's clear on that. And as much as it sucks, he hasn't given you vague promises of doing "something".

Well, at least he's clear on that. And as much as it sucks, he hasn't given you vague promises of doing "something".

True. As much as I'd like more support, at least there are very few surprises from him.

Part that is going to be exploring going off medication or seriously reducing it.

askye, if what you're doing isn't working, exploring other options is worth it. it's scary, though. But you're brave and smart, you've proved that. You can do what you need to do for yourself, I believe that.

As soon as she was out of our room, she slept and didn't make any attempt to get anyone to pick her up or act in any way like she needed to be fed.

heh heh heh. You guys are so pwned.

Emmett's godmother gave me some of the best advice for new babes, which was: Remember, they just want agency too, like anybody else. And the only way they can control their environment is by crying, or similar behavior which can be exhausting. But they're not trying to wreck your sleep. They're just trying to get a handle on the world.

That's wonderful, and I wish all parents got that advice.

After a few nights of this, they put in a camera, which caught this tiny baby very deliberately pulling off the monitor, having learned that people would rush in and fuss over her.

Awesome.

So I'm scrambling a bit right now to figure out how I'm going to get her some day help while I'm at work and she's at home.

Nursing homes can often recommend home health care providers. The hospital may have someone who can give you some advice or other help, too.

the fine print in the insurance policy, we've got to pay for the first 20 days before the insurance kicks in.

You might be able to get someone at reduced hours for those 20 days to help you out, then increase the hours as needed once the insurance kicks in.

So now that there's a bit more of a timeclock on it, I think he'll make a little more effort to see her more, but it's pretty clear he's not going to help ME.

Trying to find something positive to say, at least he's not promising things and then flaking out at the last minute, which would be worse, and at least he's not going to fight you for the house or the money, which would be horrible. He won't be helping you, but you know where you stand with him.

Today makes three weeks of ridiculous unnecessary stress that have made me seriously consider looking for another job for the first time in 14 years. My boss who always says, if you need help just ask for it! has responded to all my requests for help with nah, you can do it. Well, yes, I can, but I shouldn't have to. I feel like I'm on a raft that's rapidly sinking and my boss is in a boat full of those float rings telling me what a great swimmer I am. I'm hoping this will get better soon, because something's going to have to change, and I really don't want to have to get another job.