A year ago, our tiny newborn daughter was still in the NICU, where she spent her first 20 days learning how to breathe and feed while being cared for by a team of dedicated nurses and doctors.
There were long hours spent bedside, watching her sleep, waking her every three hours for monitoring, holding her every chance I got, doing anything I could to feel like her mama — e.g., changing her tiny diapers, taking her temperature, folding doll-sized clothes, holding her feeding tube when she was too tired to try nursing.
Some days I grew so discouraged I doubted when she would ever come home. I knew she would — by no means was she as sick as some babies there — it was just a matter of time. But I was so physically pained from being separated from her that I thought my heart would burst every time I had to leave her side. Every night as I fell asleep in tears or out of sheer exhaustion, I thought of our new daughter alone in her plastic crib too many miles away. I knew she was where she needed to be, but I wanted her home in my arms. Those three weeks were no doubt the longest of my life, and they took a toll.
We followed the routines of doctors and nurses who cared for fifty babies on the NICU floor. We had access 23 hours a day, with a half hour exception for shift change at 7am and 7pm. Most days we could only stay for about 8-9 hours and that covered only two (sometimes three) of her six feedings a day. I tried to be there for as many as I could, since feeding was her main issue. But when you add our commute and that we were still trying to maintain some semblance of normalcy for a sensitive and tired two year old, it was still a very long and exhausting day.
On day 20, the eve of the fall equinox, Baby Z was discharged after improving her feeds without a tube while maintaining growth, if just an ounce or two a day. They also needed the space. Every morning the pediatric teams determined the appropriate course of action for each baby under their care. They identified those in the best condition for potential discharge, to make room for other babies. Once Z was stable and improving, they said she would do better at home. And she did. While there, she struggled to feed. There were days even at two weeks old where there was no sign of improvement. Once home, she nursed like a champ. Now — while still small for her age and behind on some of her milestones — Baby Z is truly thriving.
In the days leading up to her first birthday, I began to re-live the trauma of my last days of pregnancy and her birth. Vividly, I remembered the gush of blood that sent me to the ER that fateful morning. I remembered staring at the ambulance ceiling and wondering how much longer I could keep her safe. I remembered missing Jaye so deeply that first night alone on hospital bedrest. (Thank goodness for blogging and twitter — my lifeline to the world that night, and many before and since.) I remembered my tears when they said she would have to come even earlier, within hours. Every year as Labor Day weekend approaches, I imagine revisiting those moments that led to her premature entry to the world.
Sense memory is a powerful thing. Stark fluorescent lighting above the operating table. Cold sterile stainless equipment. The smell of cleaning and medicine. The fierce tugging and dull pressure on my midsection. The feeling of suffocation as the blood drained from my body, before rejoining the living after fresh infusions of blood and oxygen. Mac’s calming hands on my shoulders and neck. Seeing her for the first time, when they held her up so briefly before whisking her away. Hearing her wailing lungs in the distance as the NICU team stabilized her. The delicate scent of gas as I wafted off to sleep so they could finish before I bled out.
I remembered begging for more ice chips in recovery, I was so thirsty. I remembered when they wheeled me in when I was so groggy and weak and I saw her, really saw her, in the isolette for the first time. She was so small, just over four pounds. I still see the monitors attached to her tiny fingers and toes. I can hear the incessant hum and beeping of the NICU.
Yet as we approached the anniversary of her birth, I chose instead to focus on what came next. The first time I touched her, I reached my hand (IV and all) through the isolette and she grabbed my finger. I felt a charge throughout my entire body. She responded to my voice, my presence. When the nurse handed her to me and I laid her on my chest, I never wanted to leave her side. The feel of her bare skin on mine was electric. My heart rushed warm love throughout my core. I felt no pain, nothing but deep love and profound awe.
Who was this little person? And how in the world did she find me?
Love. Awe. Gratitude. All in abundance.
So distinctly I remembered the anguish of leaving without her, every day, indefinitely. It was a visceral sort of sick, the kind you can only feel resigned to feel, because there is no other option. I remembered breaking down in the hospital when they insisted on my discharge, because I needed to be close to her. Reading some of those old posts brings me right back there, to the pain of not knowing when she would come home, whether she would eat well and thrive or not. But when we got word that she was up for discharge, my whole outlook changed. She was coming home.
We had a small birthday brunch for Baby Z, just family. Unlike the elaborate bashes we’ve had for Jaye, this was far more low key. It was all I could handle. My aunt — who started the first NICU parent support group at our hospital 42 years ago after her “miracle baby” son (born at 29 weeks) was among the first babies to use a CPAP (developed by one of his doctors) — found me in a quiet moment. My aunt knew what we had gone through, not only because they welcomed us in their home in the midst of it all, but because she had been there too.
“So, how does it feel?” she asked me, away from the eight loud little cousins dominating the rest of the house.
“It feels great,” I replied, unsure what exactly she was asking. Our girl had survived and was turning one, even though it didn’t feel like it yet (in my mind, she was barely 10.5 months old).
“No, I mean, how do you feel?” she asked again. “Is it all coming back to you? Are you reliving the trauma of it all?”
“Oh yes,” I replied. I explained how I felt in the days leading up to the holiday weekend, and that I was focusing on the positive moments, like holding our daughter for the first time, or when I first gazed into her soulful eyes, or remembering the first time she latched on, and so many hours rocking in the glider with her nestled into me.
“I remember all the worry,” she said. “Just being worried, about everything, every little thing.”
Of course. It’s what parents do. It’s always something. But with a preemie or a sick child, it seems that is heightened. Baby Z has had two colds, for instance, and I was so worried each time about about her little premature lungs filling up, or that she would lose weight because she wasn’t eating. They’re just more vulnerable. There is so much to fear.
We talked a lot about how that worry never goes away, how nearly 43 years later she can remember every trip to L&D before they finally said OK this is it, how she remembered her preemie son in his isolette, so tiny and frail, how still she worries about every cold he gets, even though he now has a wife and kids of his own.
“You never stop worrying,” she said. Any little thing can set you right back to that place, she explained. “It never ends.”
And yet. No one wants to live their life in fear. Worry takes a toll, and unfortunately, it does no good. So again, I try to focus on the positive. I try not to worry about her reaching those milestones. I know she will catch up, eventually. I try not to dwell on her past, or worry about the future. For now, there is plenty to do in the present. In fact, life is moving so fast I can’t even keep up.