Monday, October 6, 2014

Post-NICU rollercoaster - A How-To

Hand to Hold just published a piece on surviving the post-NICU rollercoaster.

I wrote it. So if you want to see what advice I'd give on surviving all the medical complexities that can come AFTER the NICU, read here

P.S. If I haven't said it before --  I think "NICU rollercoaster" is a terrible term. Read the post to see why, and to see my alternative analogy.

I've started a one-woman campaign to get the nurses to stop saying "It's just all a part of the roller-coaster ride" and get them to be a bit more honest. "Yep, it feels like you're being jerked around. Because you are. It's hard. Just think of it like you're a giant yo-yo. See, isn't that fun? Oh, it's just disorienting and kind of mean? Yeah. That's the NICU."  A bit of honesty. The campaign's not working, but I have had small victories. Like two years ago when I got the nurses to stop using the roller-coaster analogy on me for a good two weeks. I think a wise NICU nurse wrote it in my charts. "NO roller-coaster analogies! TRUST me!"  Ranting here is just frosting on that cake.

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