Monday, July 16, 2012

Spoiled by the PICU

Norah is so close to being at her baseline. She's just one tiny setting away from getting there, and they are going to wait quite awhile to change it. We have a care conference tomorrow. We'll discuss the short- and long-term plans, which I'm almost entirely certain include going back to South Davis Community Hospital within the next couple of days. (I'll send out birthday invitations once we know for sure!) We'll also decide on agreed upon protocol for managing things like illnesses, transport, etc. 

I'd be lying if I said I wasn't a bit nervous about the meeting. I almost always cry afterwards. This time, I know I will, so I've been preparing myself by chatting with some of her caregivers about it. Jeff and I are going to bring up our concerns of Norah's safety at South Davis. Don't get me wrong - they saved Norah's life when they did CPR for those nine long minutes in November (and I will forever be beyond grateful to them). We know how much they love Norah. But South Davis isn't the PICU, and we know it isn't supposed to be. Simply put, the PICU has spoiled us. They've set a tough standard. At South Davis, we worry about vent management as well as their response to acute situations. I want to do everything we can to avoid anything that remotely resembles the awful state she was in when we arrived at the PICU. Here's the thing: if we didn't bring up these concerns now, and something awful was to happen to Norah... or if Norah was to die.... I would never ever forgive myself. I've been thinking about this a lot lately. It may have triggered a need for me to seek out an Ambien prescription.

My emotional sensitivity has been overwhelming these last few weeks. Before visiting Norah today, I dropped Harper off at the park with his Auntie Emily and his cousins Logan and Emma. Emily and I were chatting at the park, and I found myself fighting tears. I was surrounded by kids having a great time at the park while their caregivers sat on blankets on the grass to watch them have fun. In that moment, I didn't envy them. But I felt this severe longing for Norah to be with us. I wanted her to laugh and smile with us. I wanted to nuzzle her in the shade and giggle at her brother's shenanigans. I wanted to have to stop her from crawling into trouble. But none of those things are our reality. Norah is still in the hospital.

It sure is a good thing she's feeling better, or else that would make things so much more difficult. Below are a few photos from the last couple of days. She's back to her perky, smiley self, but she's begun to develop a little "stranger danger" as well as separation anxiety. Needless to say, it makes it so much more difficult to leave her at the end of the day.

Music Therapy was a blast! Her feet were twirling, her entire body was bobbing, and her smile was shining! She had the best time! ...And wow - the therapist and intern were amazing musicians!

Food? YES PLEASE! Norah finally got to start eating again. Her Speech Therapist was ecstatic with Norah's progress. She was beyond enthusiastic about eating, and it showed! And can you believe the pigtail cuteness?

Her nurse Angie, Norah, and I had a blast watching soccer and playing on the floor. Go Seattle Sounders!

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