I’m almost afraid to write this, but it was another hard day. 

Things started out well. I walked in this morning to her really upset. Yet, as soon as I held her, her heart rate went back to normal and she calmed down. ?  We then wheeled her to the OR, making jokes about PostMalone and Superbowl ads, where they knocked her out and sent a scope down to look at her airway.

The first bad news started when the ENT came back to meet with us. He said she definitely has tracheomalacia, a moderate case, so the best solution is just to wait and let her grow while keeping the CPAP on. When pressed for a timeline, we were told maybe they’d reevaluate in a month, but she could need to be monitored for three months. That was really discouraging to us, so Steve and I went on a walk to kind of clear our heads and think about long term life here. It is sad to think about missing the newborn stage. I also wondered how this would affect her development– no tummy time, no stimulation, limited touch contact, etc. 

Once we kind of felt in a better place, we walked back into the NICU just in time to hear another code blue called for her bedside. We went racing in and this time I was brave enough to stand by her. Every Thursday, we get kicked out of the NICU from 5:00-6:30 pm so it can undergo sterilization. Around 3:30 was the code blue and us rushing in for teams to see her oxygen and heart rates nosedive. Today’s episode was intense in a different way than yesterdays. Her oxygen dropped to the teens but her heart rate stayed in the 40s, which is better, but the hard part was that it was so much longer. By the time we were kicked out at five for sterilization,she was stable but not yet breathing on her own.They even called in the senior respiratory therapist and he couldn’t get her to come back either. As we left, her head was being poked and prepped for additional seizure monitoring and a mask likened to a scuba diving mask was about to be placed over her face to control oxygen and pressure to help her airway.

The nurse who called code blue also thought she saw a seizure again, so they decided to do a more intense, longer and formal, monitoring for seizure activity. They placed 28 tiny probes under her scalp to monitor brain activity, then they placed that scuba mask on her to try and get a better seal. It’s hugs on her, covered her entire face. The nurses called her an astronaut. For us, with the scuba mask on we called her our Navy Seal.

To be honest, yesterday and today have been defeating, we dare even say we even just feel broke. We’d felt discouraged, but tonight was a new low. It’s scary wondering how much worse it’s going to get, or how long we’ll be here, or if she’ll have an episode at any moment, or if she even knows if we are here. I’m literally flinching at every monitor ding and beep.

We came back in to see her have a million new wires and now four machines monitoring her. They sedated her again, because we can’t hold her or do much to help keep her calm. It sucks to keep pumping medicine in her, but it was so good to see her sleeping again. We have to remind certain doctors and nurses that she is a sweetheart. 

I wish we could say we’re completely confident now, but this new mask kept leaking so they switched to a different one, but that isn’t working perfectly either. If they can’t figure it out and there’s another episode, we’re probably looking at a breathing tube/ trach. Each new day is a new thing. Steve keeps saying: the night is darkest just before the dawn. We’ll end with that.