Before Zoë died, I was planning to write a day in the life of a NICU parent post. I wanted to have a detailed chronicle of what our day was like. Then the train derailed and it never got written. Now, before I lose that memory I need to get it down.
The alarm went off at 6am each morning so I could pump. We’d just gotten the system down. During the night, I pumped at midnight, four, and six for 20 minutes (the nap timer on my alarm clock goes in 10 minute intervals and since I dozed off while pumping, I had to set the alarm). Before bed each night, Shannon put a large ziploc back with three sets of pumping accessories next to the bed. My hands-free pumping band and the cloth diaper Zoë had slept on were between my pillow and the alarm clock. I had a full mug of water (as much as I hated everything about being in the hospital, those big plastic mugs with the straw and the snap-on top are the greatest) handy as well. The alarm would go off, I’d get propped up against the headboard, wrap the band around me, hook up the pump parts, turn it on, set the alarm, make myself drink the water, put the cloth diaper over my face, and exist in some sort of alternate place until the alarm went off again. Then, I’d nudge Shannon awake. His job throughout the night was to take the bottles, put the correct time on the labels, put them in the refrigerator, and put the dirty pump parts in soapy water to soak. We’d shower, dress, grab some breakfast, bundle up against the cold, and head out into the barely light morning to drive the 12 miles to the hospital. We took the camera with us every day and an insulated lunchbox with the bottles of milk I’d pumped since we saw her the night before. While others rushed down the highway on their way to work, we rushed to see how our little girl had faired during the night.
Parking at the hospital was a nightmare. We got good at our system though…Shannon would drive, navigating the tiers of the parking deck while I looked ahead, checking both the up and down ramps to find a space within easy walking distance of the elevator. I still had a hard time walking far uphill, so we needed to be close. A quick elevator ride, a dash across the street through the freezing wind that roared in the tunnel created by parking deck and various hospital wings, a quick spin through the revolving door. The walk through the lobby, past the line of nurses and doctors at the coffee stand, around the corner and through the hallway under construction to the elevators. A short ride to the first floor. Some mornings, the waiting room outside the elevator was full of families, waiting vigil outside the labor and delivery ward. Some mornings it was empty. We were usually there early enough that the NICU waiting room was empty and there were only a couple of mornings that we had to wait because someone was being admitted and the NICU was closed to visitors. Almost all of the secretaries knew us by sight, so we rarely had to say, “Simpson, Room 4B.” The secretary would call back to make sure it was ok for us to come in as we filled out our nametags, then she’d buzz us into the scrub room. Coats, scarves, gloves all got shoved into a locker, cell phones got turned off, the camera barely fit into Shannon’s jeans pocket. Set the timer on the wall, get a handful of the harsh surgical soap and start the first half of the three minute scrub. The water in the sink was either steaming hot or freezing cold…foot pedals turned on one or the other but there was no way to mix both. We got very good at turning on the hot and rinsing off as much soap as possible before it got unbearable, then switching to the cold water and finishing up before it got untolerably cold. Re-soap and repeat for another 90 seconds. Grab the lunchbox with the milk, all carefully labelled with her name, the medications I was taking, the time and date it was pumped and my initials. Ignore the fact that your nose itches so you don’t have to wash your hands again. Around the corner, through the door, down the hall past the rooms where some parents stay overnight, past the “resource room” where we spent that last hour with Lennox, around another corner, down another hall. A quick glance at the board to see who our nurse is for the shift. Down another short hall, fighting the urge to glance in Room 4A where Lennox’s bed had been. Funny how quickly that became a natural instinct to look. Now it was close to 8:45. Round the corner and see her bed with the giraffe cover over it. If we knew the nurse, she’d start giving us the update…how much she weighed that morning, how many times she’d pooped. Had they increased her milk that day? Did she have an x-ray this morning? What were her blood gasses? If we didn’t know the nurse, we had to show our wrist bands first to prove we belonged. We’d hand over the milk, the nurse would initial the bottles and they’d either go into the refrigerator in the room for use that day or in the walk-in freezer down the hall. A quick “wash” with alcohol gel and I’d open the portholes on the incubator to touch Zoë. Adjust her hat or her eye shade, put a hand on her back, talk to her. I’d sit in a chair by her bed while Shannon took photos and talked to her. Then, I’d reluctantly let him take a turn sitting next to her, but only for a short while. We’d watch her heart rate and pulse ox on the monitor. Shannon became really good at reading the respirator monitor as well, watching when she fought against the respirator or was breathing over it. He’d questioned the respiratory tech about every number on that machine, what it meant, what it did for her, what we wanted to see, when and why it might be changed, what each alarm indicated. We knew what each tube was for and how they were used.
We usually stayed until about 9:30. If the doctor was there and doing rounds, he’d stop and talk to us, letting us know how she was doing and if he had any concerns or if there were any tests/procedures planned for her. Reluctantly, we’d give her one last “hug,” tell her we loved her, wish the nurse a quiet shift, and leave. On good days, we chatted happily about how well she was doing, how good her color was, laughing about her silly faces, her diva-crankiness. On bad days, we dragged our feet, wishing we could stay with her, wondering why this had to happen, hating that we couldn’t make it better. On the drive home, the grandparents were called and given the daily report.
We’d get home around 10. Shannon would start work, while I pumped and had a snack. Work, pump, eat, work, pump, nap. I pumped every two hours when I was awake. The whole process, from getting the pump set up to getting the bottles in the refrigerator and the parts cleaned took about 45 minutes, with the actual pumping taking 20-30 minutes. I took a nap most afternoons while Shannon finished up his work day. We’d eat a quick dinner if we had the time, then by 7 we were back in the car, in the cold and dark, to head back downtown. Evenings tended to be more crowded, both in the L&D waiting room and in the NICU waiting room. More often we found ourselves sitting there doing sudoku puzzles, trying to ignore the reality show blaring on the television, until we could finally go back. Sometimes, I’d have to ask to be allowed in to pump (after the first few visits of having to go home sooner than we liked because I was in pain, I always brought my pump parts with me). On the nights when we didn’t wait, we’d have a repeat of the morning…scrub, get update, greet Zoë…then I’d go pump briefly while Shannon got some Daddy time. When I came back, we’d turn over the day’s bottles to the nurse and I’d get my turn in the chair. Later on in her stay, I started bringing her stories to read. I’d sit with the porthole open, my head pressed against the side of the bed, one hand on her back, one hand holding the book, reading while Shannon turned the pages for me. I read her books that had been mine when I was little. We’d say her name over and over, reminding her to breathe, to calm down, to let the machine do it’s work when her stats got out of whack. I liked the night visits best. There were rarely other people in there…just a few parents, mostly moms who were still patients…the nurses seemed more relaxed, able to spend time and let us really BE with Zoë.
We’d stay until 9:30 or so, then wish Zoë sweet dreams, again offer the nurse our hopes for a quiet night, and regretfully leave. On our way out the door, we’d fill my bag with my pump parts with more bottles from the cabinet. I was going through dozens a day. We’d go home and eat dinner if we hadn’t before we left, get the pump parts ready, and collapse into bed to start all over again.