Ho hum ho hum. Sofia breezed through her NICU adventures whilst Mama was a sad, sad girl. But there was plenty of joy too. Just joy that felt rough around the edges.
From time to time, I will scroll through the dozens of photos I took of Sofia on my phone while sitting next to her crib for hours and hours. I pretty much always cry. Sometimes I rush through them, but sometimes I move slowly to try to remember. And, so, I can say definitively, they were right: you do forget. I remember it a lot shorter than it was though when I work to make it clear in my mind, my heart sinks. So I let it stay away.
I've done a bit of reading about NICU impacts on parents. I remember feeling very comforted when I read that it was reasonable to have post-traumatic stress after surviving a NICU stay. I felt that way, sometimes I still do. When faced with situations that feel potentially hazardous or surrendering control, I am definitely not smooth. My friend Lauren called it "disaster mode." I'd say that's an apt title, for I feel rushes of anxiety, heat, worry, sadness, shakiness. I feel like I'm drowning. And when it comes to protecting my daughter, I feel like a preying mantis of a mother, tall and mean-looking but thin as rails, and very breakable.
There were things that I saw in that NICU that...
I saw a lot of parents cry. I saw new mothers pour earnestly in cyclical rotation in and out of pumping rooms, all of us working to keep up a supply of breastmilk in hopes that things could be as we hoped. I saw infants smaller than they make dolls, and I remember thinking how they didn't look like real humans, they just looked like dolls. I saw tufts of red curls peeking above tubes and swaddles. I saw medications rolled in and out, all in little trial sizes. I saw grandparents and parents hugging, sobbing, smiling, laughing, wishing. I saw parents show up to feeding tube class with stained eyes.
I saw parents rush into the family waiting area, and tell grandparents that Baby Boy was brain dead. I was on the phone, on hold, trying to get some kind of inane business done and I just started to cry, witnessing this. I saw mom hugging her toddler daughter (now big sister), rolled up on the ground, and father telling grandmother how sad he felt. I saw them for another two days and then I never saw them again.
I saw surgery prep, big equipment, haughty doctors, all crowded around babies only about a foot long. I saw so many nurses, soooooo many nurses, some of them over and over again and some of them just once, for 8 to 12 hours, and then never again. And they saw me, in my most raw moments, telling them This is Not Acceptable, She Gets the Medium Sized Mask, pulling the elastic away from my baby's face.
I saw the outside of a CT Scan room. My husband and I sat on the floor while our daughter received something like 1/10 of the radiation she can be exposed to in her lifetime so that her doctors could see why she wasn't breathing right.
There was nothing normal about bringing a baby into the world and then sitting in limbo for weeks in the NICU. People would say congrats, you must be home by now, how is it? And I'd say, nope we're still here.
I saw multiple sets of parents be consulted about ECMO, extracorporeal membrane oxygenation, during which the baby's blood is diverted out her body through her neck into a machine to be properly oxygenated before going back in. I remember hiding behind my nursing screen, sitting next to Sofia's crib, reading furiously about ECMO on my phone, tearing up, while I heard parents being told their daughter might not survive without it.
I saw parents pity each other, smile little smiles at each other (big ones didn't feel too allowed), hug each other, waddle through c-section recovery together, learn to nurse and pump together, and relate. I remember I walked back to wash my pumping supplies at the sink in the back of Sofia's shared nursery room and another mom was there, crying, while labeling her bottles. I put my arm on her shoulder and I said It is Not Supposed to Be Like This. It's Okay to Feel Bad. And, then I remember, when her son went home, much sooner than Sofia did, and, full of jealousy, I resented that moment for days after, thinking...she should have been making ME feel better.
I remember the day when I started singing Alouette, a French tune I learned in 8th grade, to Sofia. I cried through my first singing. She became very still and listened sweetly. She still loves that song.
I saw parents stand weak and prone as video cameras were set up around their daughter to keep record of her seizures. I saw dueling red headed babies, both with congenital diaphragmatic hernias, across the aisle from each other. I saw parents reach into plastic shelters over their children. I saw them skim their breastmilk. I saw parents get tours of the NICU, like we did, with big eyes, completely confused and I'm sure completely unprepared.
The surrealness of the NICU is unparallelled. You walk around too fully present to think of any place else, but so wishing you could be anywhere else. I remember feeling so guilty: I wanted to spend every minute with Sofia, but I wanted to get the hell out of there. We made a little home in her NICU cubby, but I always hated every square foot of it.
I saw Mother's Day in the NICU. Everyone dressed up, taking pictures. In my pictures, Sofia has her CPAP mask on, but you can see I'm still beaming, holding her sitting upright. My Mom cried every time she first arrived to Sofia's crib and every time she said goodbye. There were very many happy moments, but it felt heavy and intense.
Nothing was more surreal than her last day though. It was a Sunday, June 5. She was two months old. Just hours before I was ecstatically jumping up and down, celebrating doctor's orders to send Sofia home, hugging the nurse practitioner, a little boy was brought via helicopter to the cubby catercorner from Sofia. He had CDH and, his body was not able to oxygenate his own blood. Many of his organs were on the top side of the body where they weren't supposed to be. His father, an orthodox Jew, prayed next to his crib. I heard him call his wife, the boy's mother who was recovering in a hospital, and ask her if she was able to come, baby might die. Rabbi family members streamed in and out. They apparently never received an ultrasound and so had no idea of the challenges their son faced. I heard the doctor tell him that ECMO was the only way to save the boy's life, and that he might not survive even with it.
And, all the while, just a few feet away, but emotionally on the other side of the earth, we were packing up to go home. Rushing because we had to go before they started surgery. They were bringing in the ECMO equipment and calling in the big name specialists to figure out how to put this little baby boy's body into the right place. And I was stacking congratulations cards and shoving nursing bottles into plastic bags. My husband and I were elated, but we felt sick still being witness to what was happening on the other side of the earth, the other side of the nursery. We were cheerful with nurses who had to then solemnly cross the aisle. Our friends came and said goodbye, but kept their backs to the praying father. My head felt tired, like it had been around the earth, across the nursery, but now on this side.
And the car seat went into the car. And we three went home.
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