Bracing for Brain Surgery

All babies heads are big…reassuring words I heard and also ones that I told myself the week leading up to Holt’s first brain surgery. I remember the moment that I realized something was wrong. I had picked Holt up from the in-home daycare in our neighborhood that he had started going to. He was so tired the first couple of weeks that I picked him up, busy taking in the excitement of other babies during his awake hours during the day. On this particular day, he fell asleep on the way home and I left him in his carrier in the dining room and walked into the living room to pump. He was sleeping with his head turned to the left and his chin tucked down towards his shoulder giving me an unusual glimpse of the back of his neck up to the crown of his beautiful bald head. It looked big. Not just baby big, but big big.

It happened to be the first night that Steve and I were going on a date since Holt was born, meeting some friends at a local brewery while my Mom stayed with Holt. I couldn’t focus the whole time we were out, wondering if I could be right that something was wrong with Holt, a thought that would cross my mind daily for the next two weeks until his next doctor’s appointment. The next week was Thanksgiving and Holt was unusually clingy, tired, and wanted to nurse for most of the time we were at my brother and sister-in-laws. I talked myself into it being a phase, a growth spurt. He was only 8 or 9 weeks old after all, we were both still learning. The next week when we arrived at the doctor’s office, the nurse asked the same comforting question that we had heard in weeks prior, “is there anything you want to talk about today before we check out mr. holt?” I answered, “I want to talk about his head.”

Our pediatrician came in and looked at Holt – face-to-face, side lying, and on his belly. She looked deeply in his eyes with her light and left the room to make a call. When she came back she told me that she wanted me to take Holt to the pediatric emergency room, they were expecting me. Holt’s head circumference had grown some percentage beyond normal since our last visit. She asked me if I was okay to drive and I said yes.  She told me not to feed Holt because of the imaging that he would need to have done when we arrived at the hospital. He was already starting to squirm and show signs of hunger. I felt my whole body contracting – stopping the milk from dropping in preparation for my baby to breastfeed, pulling in and together to put my baby back in the car to drive to the hospital downtown, putting words together to make the phone calls to my job, my husband, my family to tell them what I knew and where we were going to find out more.

Within the hour we were sitting in the emergency room where we would wait for hours for CT Scans and then an MRI. It would be the room where doctors pulled up images of our baby’s brain and showed us the missing part of his cerebellum and the cyst that was there in its place causing hydrocephalus, excess fluid on the brain. This is where we learned about Dandy Walker Malformation, a diagnosis that can affect someone’s ability to move, their intellect, coordination, and the list goes on. This is the room where we began to grasp that the affects of Dandy Walker weren’t just for someone but actually could affect our one, our Holt.

Holt’s brain surgery was scheduled for the next day. They would place a shunt inside his brain that would drain the spinal fluid that was being blocked by the cyst. We were told that shunt surgery is “the appendix of neurosurgery” something that felt oddly comforting in the moment that I was grasping that my baby was going to have brain surgery in the first place. That night I spent the first of many curled up next to his little body inside a hospital crib, wide awake just watching him. He threw up for the first time that night, maybe a result of the anesthesia from the MRI, maybe the result of the hydrocephalus, but a first nonetheless.

The day of Holt’s surgery was the longest day I have ever lived. It was December 3, 2016. From the moment they wheeled him out of the room to the moment we saw him again was 8 or 9 hours. I had so much adrenaline and anxiety in my body that the hospital waiting rooms looked fuzzy. I don’t know if I heard or saw anything “clearly” that whole day. I kept making my family move around the hospital because I couldn’t stay in one place too long. When Holt’s surgery was finished, we headed towards surgical recovery. At the time, Holt was in the same surgical recovery as all the other patients at the hospital, no separation for pediatric patients, no privacy, just a line of beds with others recovering from having their bodies opened up in some way shape or form and separated by curtains. We would end up spending an equal amount of time, 8-9 hours, while we waited for a bed to become available in the Pediatric Intensive Care Unit. The staff on the recovery floor “weren’t equipped to have a baby there that long” – their words not mine. Holt cried and then I’d cry as I tried to nurse him as he was hooked up to wires and monitors. His incision was fresh and tender and made nursing or bottle feeding feel almost impossible. My mom and her partner Hank were with us the whole time. At one point I remember my Mom leaning over me and Holt as we lay in the bed and whispered she was going to head home and asked if it was okay. I wanted so bad to shake my head yes and tell her to leave, to rest, but my whole face squished up, tears came, and I instead responded, “please don’t leave me.”

We would finally make it to the PICU where an actual Earth angel took us into her care. She made a nest for Holt’s little body inside the giant hospital crib. I don’t remember her name, but I do remember her perfectly timed sarcasm and gentle delivery, giving me a dose of humanity at the exact moment I wanted to give up on it all. I curled up next to Holt in that hospital crib for the second night and the longest day of my brand new life was over.

I think growing older inevitably changes us. If we were rocks sitting just below the surface of a flowing river, over time the water would wear us down, smooth our edges, expose new colors and surfaces. If we’re lucky life’s river flows gently, a steady and constant current with the occasional storm that might bring about more rapid change. December 3, 2016 was one of those storms, it changed me in the matter of hours. I’ve spent a lot of time trying to attach myself to the version of me that existed before that date. More than four years later, I’m still getting used the way that storm weathered me, accepting what it exposed and learning to be comfortable with not only letting myself see it, but others too.