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4/17/92 (Day 153) — Children’s Memorial Day 5

April 17, 2011

Can you spy the tiny baby amidst all that medical equipment? I know it's a terrible picture, but somehow the dark, underexposed image suits the mood of the time. Molly was now on the post-surgical recovery ward, a big, open room with lots of very sick children. We were booted out any time a doctor showed up, if any patient was in distress or undergoing any kind of test or procedure, and during rounds (at least twice a day for at least two hours at a time). The rational part of me understands that this is a big hospital with many very sick children and that they have designed things to work as efficiently as possible. The emotional side of me still flails against the helplessness we felt during this time. We had been so nurtured at Evanston, but at Children's, we truly felt like we were in the way, an inconvenience to the staff that they had to tolerate. I will say that our later experiences with this exceptional hospital (and there were many), were wonderful, and we are so grateful that they were able to fix Molly's heart.

We had no nursing on this day. Kenn stayed home with Isaac while I was at Children’s Memorial with Molly. Each day, the home nurses charted their care of Isaac and Molly, just as the nurses had on the NICU. Every couple of hours they tracked vital signs, intake, output, physical assessments and any medicine or treatments.

We did not chart when we were taking care of the babies on our own, with the exception of completing a form called the “Apnea Flow Sheet”. Apnea is the medical term for breathing disruptions lasting 5-20 seconds (if you ever have a question about a medical term that I may have casually dropped into a post, see the Glossary). Both babies wore apnea monitors, which would sound loudly if they stopped breathing. In theory, this was a good thing, but there were many false alarms, often waking the babies from nighttime sleep or a nap, and always scaring the hell out of us. After too many false alarms, even though you still jump and even though you (of course) still check and double check, there is a tendency to swear under your breath at the idea of being awakened from a semi-sound sleep for yet another false alarm.

On this day, Kenn recorded two apnea alarms, both in the morning (at 9:00 a.m. and 9:15 a.m.), both while Ike was sleeping and neither requiring stimulation to get him to breathe. This means they were probably both false alarms. We were still pretty new at caring for the babies on our own, and the alarms were mentally and physically exhausting.

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