Night Vigil

This week has been brought to you by caffeinated soda and the Owlet baby monitor.

I'm so glad that Chris has had the week off.  We've been taking turns on "Night Watch" for Hannah.  It started the night before Christmas Eve, when Hannah's Owlet baby monitor kept signaling low oxygen (5 times in an hour, 8 times total). The second half of the night, she would cough and sputter in her sleep, and then choke on her mucous and have white foamy spit. We are getting uncomfortably comfortable with this process: She coughs and chokes, we hold her upright and pat her back while she tries 5 or 6 times to swallow, her eyes huge and confused.  We give her a few seconds to try to sort it out, then blow a puff of air in her face to startle her and help her get breathing again.

This overnight vigil has us fairly terrified. I was really sad at the prospect of spending Christmas in the hospital, but I had this gut feeling we were headed back there. (I had already spent Thanksgiving in the hospital, seeing as Hannah was born the day before).  But at about 4am on Christmas Eve, I got this crazy idea to have Christmas a day early in case Hannah and I had to go back to the hospital.  The kids were surprised and very confused that Santa had come a day early.  Audrey is on to us, and said that Santa couldn't have come because he brings cereal and puts beef jerky in Dad's stocking. She was certain he would really come the actual night of Christmas Eve. The bigger kids just kept looking at me like I was crazy, and trying to figure out why. (Haha, good luck with that one kids...you'll never solve me!)

The same thing happened again that night, with Chris and I taking turns holding a sleeping baby upright all night long, and thinking that this is ludicrous and certainly not a practical or sustainable way to keep a baby alive. I would stare at her in her cradle with a flashlight and watch her O2 drop on the monitor, waiting for the alarm to go off.  I wanted to see if she was turning blue, if she would recover on her own, and if it was upsetting to her (It wasn't-she slept right through). It looked exactly like Chris's sleep apnea to me.

The on-call nurse from the pediatrics office said to go to the emergency room if she stopped breathing, so to the emergency room we went.  My mom gave me this tidbit of reason: "If she needs to go to the hospital, take her, regardless of the date or hour. Dad had his appendix out on Christmas one year because that's the day he got appendicitis."

I stopped unpacking my hospital bag last time we came home, so that its mostly ready if we ever have to go back. Kinda sad, huh? Well fortunately, we did not have to stay! Dr. Henderson was actually on staff Christmas morning, which was great, because he knows Hannah's case very well. I had already decided to keep him as Hannah's Primary Care Physician (PCP). The ER staff monitored her oxygen (which of course was great by now), and did a swab for respiratory infections. The protocol was to keep her on the Owlet oxygen monitor at home and watch closely for lung retractions, indicating trouble breathing. (Her other breathing problem is already explained by the cricopharyngeal bar, and we already know there is nothing we can do about that at this point).

I asked about the suction clinic (Outpatient Respiratory Clinic).  Unfortunatley it doesn't sound like the kind of thing that would help Hannah. Its for respiratory infections, to get the mucous from the back of the nasal cavity. Hannahs problem is that she can't swallow her own saliva, and it's much lower than the nose-she would need to be suctioned every 20 minutes.

Soooo close.
I feel like she is trying to smile at us!

We came home with a new resolve to wash hands better and sneeze and cough into face masks rather than the ether around us.  Hannah did test positive for coronavirus, and by the symptoms, I'd venture to say that everyone else in our house has it, too. 

I have a theory about her breathing.  During the day, Hannah is in a pack and play in the living room, surrounded by light and noise. She wakes and naps lightly throughout the day.  At night she is snuggled tightly in a dark, quiet room, and can sleep much more deeply. That is why she has possible apneic episodes and doesn't wake up when she coughs and chokes.

Those two nights were the worst and fortunately the following nights were mostly better. She tends to sleep fine for the first half of the night, and then has more low-oxygen alerts and coughing spasms toward the 4-6 am hours.

I spoke with Dr. Schramm on the phone Thursday and he said there's not much we can do differently at this point. She's too little for surgery, repeating the dilation procedure is no guarantee of improvement, and the next level of care would be having her  intubated in the PICU for breathing.

We are tired. The status quo is not ideal. In fact it's terrifying. She de-sats while I'm holding her in my arms.  We wish there was some kind of intervention that would make this easier while we wait for Hannah to get bigger. In the mean time, we are going to consult with a GI specialist, a nutrition specialist, a speech language pathologist, do a motility study on the rest of her esophagus called manometry, and possibly a sleep study for apnea.

Finally getting some chubby-ish rolls on her legs.

I'm so glad I spontaneously bought the Owlet monitor one day when I was pregnant. It was not something I had ever previously considered spending money on. Ever. But now I think I was truly inspired, and that it showed up for sale on my Facebook feed at just the right moment on a payday.