September 6, 2012. Jonathan had come out of the surgery to place his central line. It had been put in successfully. Then he had gotten really sick. Lethargic, barely moving, continuing to retain fluid, and with an elevated blood cell count. He wasn't even willing to hold my hand any more. We were worried.
I wanted to ask the nurses to be my primary, any nurse, really, but I was too exhausted emotionally for that, too. I felt like the process of getting a primary nurse was some sort of elaborate dating game. I ask, they accept, we tell the head nurse. But nearly every time, they were unable to be primaries for one reason or another. And I worried -- what if they don't like me or my baby? Then they have to make excuses on the spot, or they take us, but I don't want someone to primary for us that doesn't like us.
Or there'd be that awkward moment when a nurse I didn't get along well with would keep hinting that having a primary was a really really good thing -- as if she wanted me to ask her to be our primary, when I didn't think I could handle her bubbly personality every day. So I guess I didn't want just any nurse. But almost any nurse would have done. I wish I could have written down my top five nurses so that they couldn't see who recommended them. And they in turn could write down their top five kiddos, and the scheduler could see if there was a match without any feelings being hurt. But that wasn't the system.
And meeting new nurses was exhausting. One day when I came in one of the new nurses had asked how I was doing. "Fine," I'd said, "Tell me about Jonathan." "NO," she responded, "really, how are YOU doing? You're important in this, too."
I didn't want to talk about me. I was a basket case. But explaining that to a stranger that I'd maybe never see again that this NICU thing was really really hard wouldn't help. It wouldn't help me get information about my son. And I wanted information, that's how I cope. Look overwhelmed, and they'll sensor their information, trying to be kind. Look inquisitive, and they'll continue to explain. That's what I'd learned. So I pushed the conversation back toward my son again.
A few days later I came in for the evening shift and helped get my son ready for bed, lifting him so the nurse could change the sheet. "And how did that feel?" she asked with a broad and enthusiastic grin as I set him back on his bed, "wasn't it so nice to be able to do some little things for him? To hold him up?" I think I glared at her. He was seven weeks old. I'd been doing this nearly every night for almost two months. It felt the same as it always felt. It's why I came in every evening. She was acting like this was my first time, like he'd just been born. Maybe he looked that small, but he was nearly two months old. I wanted my old nurse back. The one that would joke with me and be straight with me, and NOT ask me to emote. I didn't want to emote. That took too much energy.
So I stopped going in at night, or taking only every third evening, and sent Steve in instead. "If you like the nurse," I said, "ask him or her to be Jonathan's primary."
And Steve did. But it didn't seem to be getting us anywhere.
On top of all the new nurses, my eight weeks of maternity leave was just about over. That meant going back to work. Going back to work and leaving my son in the rotating hands of strange nurses. I wasn't thrilled.
At a staff party a coworker offered that maybe this would be nice, going back to work full-time. Maybe it would help take my mind off things. This coworker was right, in part. The NICU was becoming all encompassing and exhausting. I was burning out, and school would force my brain into another realm, maybe help me not to worry constantly. But what if he needed me? I was Jonathan's only mom. Yes, the nurses were competent and caring, but (since he wasn't getting consistent care) they didn't know him. I did. So instead of giving a "yeah, you're right," my coworker (I'm afraid) got a glare. Or maybe I was more charitable and gave a nod and walked away. Honestly, I can't remember that day too well.
There was sunshine at the staff party, I remember that. Rippling on a lake where some folks had taken out a paddle boat. I'm not sure if I swam, or even went on the boat. There was good food. I remember being allowed to sit and bask and eat caramelized peanuts on the deck, with coworkers who purposefully did not ask for details about Jonathan or how I was feeling. Instead they just let me sit.
Steve was a trooper. He and another friend watched to be sure my girls weren't drowning as they looked for shells in the shallow end of the lake. He also just let me sit. As if things weren't so bad for him. But I knew they were. Perhaps playing with the kids was his way of relieving stress. Either way, I was allowed to sit. And some of the worry melted away for a few moments. My nerves felt less fried. I do remember that. The sunshine, the good food, it was what I needed. That's all I can remember from that day.
After I went back, the nurses passed on to each other, every shift, why I wasn't there. "They both work full-time," they'd say, "and they have two other kids at home." They'd excuse me from not being there, try to tell each other "no, this one is cared for, his parents just can't make it during the day, only every night."
I guess NICU abandonment is an issue. I guess they were saving us from a social work call? I never quite figured out how those politics worked. But one of us was there for two to four hours every evening. That was our requirement, our promise to ourselves and Jonathan. We'd be there. Every day.
I didn't want to leave my son. But what choice did I have? Even if my family didn't depend on two incomes, if I quit my job, I'd still have to care for my three year old (as we'd not be able to afford her childcare). I couldn't go into the NICU for a full day with a three year old, so it wouldn't do Jonathan any good. And then there was the issue of viability. We still weren't sure he'd make it. His life was hanging in the balance. To lose a job I loved and a child I loved both in the same year -- it would be too much. One step at a time. And I couldn't ask for an extended or unpaid maternity leave. They could only grant me another month, and he'd still be in the hospital long after that. No, I wanted to save the unpaid portion of my three month leave for when he came home. THAT is when I'd want to use that.
So maternity leave was a few days from being over, my son was very sick and still like a water balloon, Steve was back to teaching, the girls were back in school or preschool, and I was preparing to go back to work. Steve and I wouldn't really ever get in good talks for a while after I returned to work. We'd either be working or caring for the girls or caring for Jonathan. That would be our lives, split except for while sleeping or hurriedly eating breakfast and managing our schedule. But we had to make this work. This was our new normal, this was the next three to six months of our lives.
We estimated that we had another two to four months of this ahead of us. That was too long to live in crisis mode. One day at a time. Jonathan was sick, but not as sick as when he had NEC. Dad had made it out of surgery, the cancer had been removed. Now he was recovering. As far as I was concerned, that meant we weren't in crisis any more. Just really worried. I made the linguistic switch (from "crisis" to "concerned") so that I could settle. Maybe just a little. Maybe just an illusion of settled, if not actually settled. All I knew was that if I heard one more person talk about being "in crisis mode," I'd snap. This wasn't a crisis. This was our routine. This is how we'd survive. This is how we had survived for the past eight weeks. We'd make it, because we had to.