I'd Rather Be Boring

Oh what a night. Harper, Jeff, and I left the hospital around 7pm. We had a really great afternoon with a fun visit from Norah's best bud, Ava, and her family. We laughed, played, and compared medical notes. Even Harper was super social with Ava's sister, Aspen. In these photos, Norah is in the polka dots, and Ava is in the pink onesie. You're not supposed to compare (specifically with their condition), but Ava's parents agreed that Norah looked bigger, especially considering Norah is two months younger. Take that, insurance denial for growth hormone. It does work!

We had just enjoyed a late, hasty dinner when my phone rang a bit before 8. My reflex to the phone ringing is always nervousness. Yes, always. And this time, when I saw that it was South Davis calling, my heart sank.
It was Norah's nurse on the phone. They had walked in when they heard her vent alarming. She was slumped to the side in her bumbo chair, as if she had passed out. She was blue. Blue, blue, blue.

They pulled her out of the chair (which woke her), laid her down, turned up her oxygen, suctioned her, and talked her through it. She slowly came back. They weren't sure what happened, and why her oxygen saturation dipped so far down.

I tried to be rational. I reminded myself that there was a time when she'd desat more than ten times in one day, and tonight she hadn't even needed bagging. Jeff and I were unsettled, but we decided to give it an hour. I'd call after that hour before unnecessarily hopping into the car. Something nagged at me to go anyway, but I ignored it. Even though Norah hadn't had a true desat in months, I was trying to be rational, after all.

After the hour was up, I called. No answer. I called again about 10 minutes later, and someone answered after what felt like a million rings. The nurse was "not in the unit" and they took a message. Another hour later, and still no call... I called again, and she told me the nurse was swamped, and could she call me back? This was not acceptable. I told her no, that I was coming in. You better believe that got her nurse to call me from her cell phone, in Norah's room. By then, I was already on my way there, doing my best to drive calmly. I hate to say it, but I'm practiced at this sort of anxious driving.


When I got there at about 10:45, Norah was wide awake in the arms of one of our favorites there, our CNA Chris, and she was singing to Norah in a futile attempt to help her sleep. I like to think that Norah knew I was coming, and she was waiting for me. It is very unlike Norah to be up after 9:30pm. The photo (left) is dark, and probably impossible to see on some of your screens, but this is what I sent to Jeff. He was so relieved.

I rocked her for awhile, but she was still wide awake. Her vent was alarming again, so I asked the respiratory therapist to come in to replace part of the NeoSensor (the bane of my existence). When it goes bad, or when there is an accumulation of water, its reading becomes faulty, and delivers itty bitty breaths to her because it thinks she is initiating them when she isn't. Her rate was up to like 125 bpm. Go ahead, try panting that quickly and see how it feels. Not good. I could see and feel her poor little chest fluttering with these breaths, and trying to take some real ones in between. After they resolved the sensor problem, I moved her to my left arm (what I call "assuming the position"), and she all but instantly fell fast asleep. I snuggled on her until about 12:15, when I tucked her back into bed. I got home a little before 1am, where Jeff was still waiting for me, awake. Poor guy. But if I were the one at home, I wouldn't have been able to sleep either. I'm fortunate to have the best husband ever, who lets me fulfill my every need to be there with Norah, when I know he would love to be too. And yes, the poor guy had to get up for work just a few hours later.

So with all that drama, I didn't sleep till about 3am. I've had chronic nightmares since Norah was about 3 months old, and major bouts of insomnia. Though the antidepressants keep me from crying all day every day, I'm sure they don't help with my sleeping woes. The anxiety of our kids' well being, bills piling up, and now lately the added stress of trying to find a home fit for taking Norah home to, really adds up.


Everyone tells me that I'm amazing. They don't know how I do it. They send thoughts and prayers (our family is not at all religious, but we figure it can't hurt). But honestly? I don't want to be amazing. I don't want to be strong. I want to be average. I'd rather be boring. Of course the compliments and words of comfort are sweet, welcome, and even helpful. So please don't stop. I know life will never be "normal" for us, but I sure look forward to things being less crazy someday.