Friday, June 29, 2012

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.


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