I’ve had a rough day today, so has Ramona. I guess I had it in my head that bringing Ramona home was going to be some kind of a Utopia. On the plus side, not driving back and forth is nice. On the minus side, everything else.

No 24-hour nurse to feed, change and bathe her, it’s all us. No hospital volunteers to rock her to sleep, it’s all us. No pulse-ox monitor to let us know if she’s desatting, we just have to take our best guess. Oh, and my goal of having all this together time as a family has been slightly hampered by the fact that Simon cannot be allowed anywhere near Ramona because of his non-stop desire to yank tubes out of her face, bang things on her oxygen generator and push her feeding pump around. I’m finding it hard to picture being able to take care of both my babies or even spend a significant amount of time with them both each day.

So I’m angry today. Really, really angry. It’s funny, I haven’t felt mad that Ramona is sick, mad that she wasn’t diagnosed sooner or mad that we have no idea what her long-term prognosis will be. Those things have made me feel dread, made me feel regret, made me feel overwhelmed. Today is the first day I’ve just felt really angry.

Now that we’ve beat the odds and made it home, I’m ready for a break that I’m just not gonna get. We managed to give her the 3:00 feeding, it took 2 hours to get it done and the meds and another hour to settle her down to sleep. Well she eats every three hours! That doesn’t leave a lot of time for Mommy-Simon time. And that every three hours? It’s round the clock. Right now I just can’t believe the hospital would send us home with such a big job.

But I know it’s not their fault. I know it’s not anybody’s fault. It’s just the way it is. So many folks have generously offered to take Simon off our hands for awhile. An afternoon, an overnight, a week. I just don’t think he should pay the price for all of this and get shipped off, away from his home and family. There doesn’t seem to be a good solution.

So I’m angry and snapping at everyone, mostly Andy and my mother, who have done nothing but be completely lovely to me through all of this. And Ramona hasn’t been an angel today either. Home must now be new to her I think. She just can’t settle down. She’s been fussing, crying, fidgeting for most of the day and evening. We haven’t been able to put her down for more than about 10 minutes.

I know that all of this will get better. That we’ll get smarter about the way we care for her. That she’ll most likely settle down and start sleeping better. That Simon will learn to control his cord lust. But right now I’m about as stressed and overwhelmed as I can ever remember being.

Thanks for listening to me complain,

Jane.