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!

Doing Better

Norah has been doing fantastic. She hasn't had any other desats or crazy episodes like the one the other day. Thank you all so much for your care and concern via phone calls, text messaging, and blog comments - it means more than you know.

After that episode the other day, we're really wary of pushing her too hard. Of course we're anxious to get her home, but going too fast, too soon, would be detrimental to her progress. We may have to go slower than we had anticipated, but that's okay. We just want our girl to be safe and healthy. Although, after talking to a few experts (I'm looking at you, Janie), along with my mama's intuition and experience with the Drager vent (I know way more than I should, but sometimes wish I knew more), we think that the episode may have been caused by the cursed sensor on the ventilator. Her squished position in the Bumbo chair probably didn't help much either.

The good news is that the desat probably wasn't from Norah alone, rather an equipment problem. Regardless, no one likes to hear that their baby was slumped over and blue. I'm just grateful that it seems like they responded quickly. The Director of Respiratory really went out of his way to research the logs, including looking back at a camera down the hall that shows the events and times that the staff went into the room in response to those alarms. Talk about awesome, huh?

Norah is happy, playful, and full of smiles. Her current favorite activity is playing cars on the floor with Harper. We don't dare take those Princess Peach cars away from her without proper distraction, as it results in a temper tantrum almost every time. She especially loves one of them in particular. Isn't it funny how some people are drawn to "girly" things, and others are drawn to "boy" things? We love that Norah is drawn to both in one: a car... but a pink princess car. Harper is great at sharing with his baby sister... for now.

Norah continues to have good days and bad days with the home ventilator. Her record is 2 1/2 hours, but that was without the little humidifier that causes some extra resistance in the circuit. Think of sucking through a cigarette filter. Yes, I know many of my readers have never, and will never smoke (which is a good thing!), but that seems to be the best comparison. We found a new humidifier for her, a smaller one that puts up less resistance. It seems to be much easier for her, but she still gets worn out from the hard work. Some days she'll only last 5-20 minutes, but yesterday she lasted a good 2 hours and 10 minutes.

Family time on the floor. Harper is so sweet to share his Mario Kart cars.

Norah playing with daddy's iPad! She loves splashing in the tub, so I'm not surprised that she likes the virtual splashing too. You can see her sort of huffing and puffing away, as she was nearing the end of her tolerance of the home vent. She sure lets us know when she's done.