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4/20/92 (Day 156) — Children’s Memorial Day 8

April 20, 2011

This coffee stained page shows that our monthly home nursing schedule was a living document, constantly being updated and revised. Sometimes the nurses had to cancel or reschedule; sometimes we needed to make changes. Sometimes it was just a matter of shifting the schedule by an hour, other times it meant reworking the whole day. While it was wonderful to have these trained professionals taking care of our babies, it was also disconcerting. We usually had at least two different people in the house in any given day (often more). Sometimes it w as one of our regular nurses, sometimes it was a complete stranger. Imagine waking up in the morning and not knowing who you would meet in the hall. Our nursery was off our bedroom. When there was middle of the night shift, the nurses would walk through the bathroom to get to the nursery. It was a strange, sometimes tense arrangements, yet we needed this help desperately, especially with Molly still at Children's.

Scheduling the home nurses was a real experience. We were currently approved for 16 hours of nursing a day and generally opted for midnight to 8 a.m. so we could sleep and 8:00 a.m. to 4:00 p.m. so I could go grocery shopping or to doctors appointments. This daytime shift was especially important while Molly was down at Children’s. That left me alone with Ike at home from about 4:00 p.m. to midnight, as Kenn usually worked till nine or ten at night.

But looking at the schedule, nothing was ever that neat. There were lots of cross-outs and reschedules and fill ins to cover the time we needed. The first couple of days Molly was down at Children’s (April 13 and 14), we had quite a bit more nursing (almost 24 hours), which required overtime. It was so difficult managing two sick babies in two different places. Medically, Molly was well cared for at Children’s, but it was a lonely place and it broke my heart to leave her there. There were many days I rushed home from the hospital so the home nurses could leave on time. And, of course, no matter where I was, I was always feeling guilty about leaving one or both of them.

In the days before cell phones, there were a lot of stressful moments if one of the nurses was running late or had to cancel, or if I was stuck in traffic on the way home from Children’s.

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