Fifteen Days Adjusted

Over the past week, we have been reminded that you don't stop being the parents of a preemie when you leave the hospital.

Things were going swimmingly until Tuesday morning. I was quietly munching my cereal at the breakfast table, when I heard Lisa issue an urgent distress call from the upstairs bedroom. By the time I hit the top of the stairs, she had given routing instructions: "Get the bulb syringe!" I dashed to the nursery to fetch this little plastic item. When I reached the bedroom, Lisa had Miles face down over her knee, cajoling him to breathe. She took the bulb syringe and plunged it into Miles' mouth and nostrils, sucking out bits of mucous. Finally, Miles started to quietly sputter and it was evident he was breathing again. He slept heavily the rest of the afternoon and did not recover his energy until the evening, but otherwise showed no ill effects from the incident.

Lisa explained that Miles had been laying next to her in bed, just coming out of sleep, when she noticed that he suddenly stopped breathing and began staring into space, his eyes half shut, limbs flexed out tensely. When she inserted the bulb syringe into his mouth, his tongue was blue. Not a good sign. Fortunately, she had been right there to revive him. But revive him from what? That remained the question of the week.

Initially, we suspected that he had been choking. Miles has some digestion/reflux issues, and it's possible that this triggered the episode. But over the next few days, after consulting with a multitude of doctors, a number of competing hypotheses emerged, such as a seizure or an apnea event.

Needless to say, we were completely shaken by this event. We had been home for ten days, and largely settled into a routine. Previously, Miles' handful of lingering medical issues had seemed very manageable. Suddenly, we feared that this incident could have resulted in tragedy if Lisa had not been in the room. We had to puzzle over what had occurred and whether it might happen again. Suddenly all the nervousness and uncertainty of Miles' first night at home returned, with an added layer of menace. Any sense that we were in control of events vanished.

Lisa took Miles to see the pediatrician that afternoon, and a string of appointments followed over the next few days. Although there was no repetition of the incident, as a precaution Miles spent Thursday night under monitoring at Children's Hospital. After all of his struggles in the NICU and Special Care Unit, we felt terrible about readmitting Miles to the hospital, even for just a night. But it turned out that Children's is a bright, cheery place, and Miles enjoyed a fairly comfortable, uneventful stay.


Then Friday night we participated in a "sleep study" at Overlake Hospital. This involved Miles being hooked up to a spaghetti of monitoring cables while he attempted to amass the required six hours of sleep notwithstanding his obvious discomfort. Mom and Dad also struggled to sleep in an adjacent bed, with less discomfort and less success. Lisa claims that this was one of the worst Miles days thus far . . . he was inconsolable with over thirty probes pushed onto the surface of his little bald head.


Nonetheless, the monitors gathered a vast array of data on Miles' breathing, heart and brain activity. We are not sure whether any of these tests will tell us what happened last Tuesday. Actually, there is only a very slim chance that we will ever know what happened to little Miles on Tuesday. We can only hope that it was a one-time event, or at least that it was somehow less serious than it appeared.

We took Miles home again Saturday morning. After a long sleep, he seems to have recovered his bearings and looks fairly relaxed. His feedings are going more smoothly. This morning he took his first full meal via breast. He continues to grow in leaps and bounds, having cracked four kilos (8 lbs., 15 oz.) Gradually, our nervousness is receding a bit as we return to our new routine. Still, we are a far cry from breathing easily.

We are discovering that parenthood is a very uncertain business. Part of it is learning to live with a certain level of fear. At the same time, there's no joy that compares to having our little boy home safe with us. We just have to do everything we can to keep him that way.