As if we needed a reminder of how unusual life has become, the moment came last night. A nurse spent an hour measuring Hope's head, marked it with red dots from a wax pencil, affixed a dozen electrodes and leads and finished with the piece de resistance -- wrapping her entire head and neck in a gauze mask to keep the wires from crossing.
It was tough to watch. Her little head was covered in wires. The gauze left her face exposed but covered her head and neck. My mind raced: This is freaking wrong, you shouldn't be 3 1/2 months and have a head full of electrodes to measure brain activity. She looked pathetic, but I couldn't decide if she looked more like a Depression-era football player or an onion.
Mo settled the debate.
"Hello my little Lancelot. Have you found your place at the Round Table?"
That was the one moment of levity in an otherwise long night during Hope's long-awaited sleep study. We don't get the results for a week, but we doubt they'll be good.
The study, which kept her in a surreally spooky clinic overnight, used electrodes, belts and other gizmos to measure the quality of Hope's sleep, especially her breathing and apnea. Those are the brief interludes when she stops breathing, catches herself and thinks "Hey! I'm not breathing!"
The fear is Hope's acid reflux is causing a blockage in her throat. Or perhaps her floppy airway, or laryngomalacia, closes during deep sleeps and suspends her breathing. Either way, we need to figure it out. Surgery is in her near future for ear tubes to help her hear, and her apnea could be cured by a surgical tweak during the same operation.
The study was about a mile from Beaumont Hospital in a non-descript office building that appeared otherwise vacant. It was all so strange. We got there about 7:30 p.m., had wait for 10 minutes to be buzzed in, then were led into a basement. We were ushered into a room that sort of looked like a hotel, except one with a camera that moved when you did and a loudspeaker from which unseen nurses and a neurologist could bark commands.
Big Brother was watching.
The study videotaped eight hours of sleeping, as well as brain activity, breaths through Hope's nose and the elevation of her chest and stomach as she inhaled and exhaled. A doctor will evaluate the results and make recommendations.
They might not be pretty. Hospital rules only allowed one parent in the room through the night. I stuck around 90 minutes, then hightailed it home. The ladies returned about 6:30 a.m. It was an especially bad night. Hope woke up about six times, was given supplemental oxygen through her nose because she wasn't breathing well and threw up all her milk about 4 a.m. Mo didn't get any sleep.
We're tempted to make excuses. The place was weird. The heating system was loud. How would you sleep if you were covered in wires and belts and videotaped? It was just one night. Swell questions, we know. But they're not going to change the results.
We have a lot of fears about what's next. We worry the cure may involve more complicated surgery or supplemental oxygen at night. But the sight of Hope covered in a spaghetti-strand tangle of wires reminds us yet again that we're way past the point of fear. We need to buck up and do what's best for her.