Reflecting on My First Month as a Disabled Dad, Part 1

Mini-Series Description

It is so hard to believe that it has already been one month since Kass and I welcomed our twin boys to this world. It’s even harder to believe that, if Kass had gone to full term, these boys would still be sitting comfortably in her womb. July 4th marked month one spent with these incredible little guys, and what a month it has been! This will be a 3 part blog series where I reflect on early life with twin boys and a disability.

Part 1: Day 0

The first night was a whirlwind. Neither Kass or I thought that she would labor, but on June 3rd—after a wonderful day spent with family—Kass’s water broke. I was admittedly quite drunk. We both thought we had a few more weeks until our scheduled C-section, so I took the opportunity to drink some top shelf whiskey and port wine. I’ll tell you one thing, nothing sobers you up faster than finding out your boys want to come early. We rushed to the hospital with Kass’s parents and got settled in our triage room, anxiously waiting for the morning to move ahead with a C-section. I racked my brain with all of the possibilities, and selfishly obsessed over my fear of skin-breakdown, knowing that my best option was to stay in my wheelchair overnight. My parents showed up with our go-bags and supplies to help us get settled in our room. It was all hands on deck as my mom took over the responsibility of my care, helping me catheterize throughout the night. All of my anxieties melted away in the early morning hours as I realized I was about to meet my sons. Then came June 4th, welcoming Brody David Keller at 6:58 AM and Bennett Jackson Keller at 6:59 AM. 

Nothing will compare to hearing the first cry leave these boys’ lungs. Kass and I looked at each other and sobbed. Hearing Brody fill the room with a scream above the backdrop of Noah Kahan’s new album that was playing in the operating room felt surreal. We’d spent so much time looking at these boys under ultrasound, watching their lungs develop, praying they would be healthy. Now they both lay in their respective operating room bassinets, receiving their first vitals checks, syncing up the pitch and rhythm of their yells the only way twins can. They were here, and they were strong.

I stayed with Kass for a few minutes after they rolled the boys out of the Operating Room and to the Special Care Nursery. By all accounts, the surgery went perfectly. Still, there was already an emptiness as the bassinets left the room—our first time away from them. Kass told me to go check on them, so we kissed and I left with a nurse escort. It’d be sometime before I actually got the greenlight to enter the Special Care Nursery. It felt like an eternity sitting in front of the locked double doors, but in reality, it was probably only 30 minutes. Just enough time for them to get cleaned up, thoroughly checked, and set up with all their leads and tubes. Then, like Moses parting the seas, the security doors swung wide. As I rounded the corner, I was greeted by a nurse who let me know that the boys were doing incredible. I believe her exact words were “well, we certainly know that their lungs are healthy,” as the chorus of newborn screams filled the room once again. With that relief, my thoughts moved back to Kass who was getting “closed up” in the OR. Like a psychic, the nurse’s next words were that Kass was doing well and was settling in her room. I felt like a semi truck was lifted off my chest.

There were four other newborns in the unit as I entered the room, so I turned the speed of my power wheelchair down to its lowest setting. As I rolled to my screaming boys at a snail’s pace, I was once again struck by how strong their lungs were for being born at 34 weeks—such a blessing to know that these kids got their mother’s pipes. The boys were on opposite sides of the room, so at first I parked in the middle of the room, looking to my left and right as the care team moved through their process like a well oiled machine. My first thought while I moved my head from left to right was “holy shit, which one is Brody and which one is Bennett?” That’s when an opening formed, and one of the nurses waived me toward the bassinet. As I approached Brody on my left, I couldn’t believe how big he already was and how much he looked like his mother. I was even more impressed by the fact that he did not have a CPAP or nasal tube placed. “Could it actually be going this smoothly?” The nurse gave me a gentle warning that their premie skin was too soft to rub, but I could place my hand on them. I was sad that this would be my first experience with skin to skin contact, but I was so damn grateful that I was even in that room. I placed my hand on Brody’s abdomen, being careful to avoid the clamped umbilical cord that would become his belly button. That was the first time I had heard his screaming stop. 

The pediatrician approached me and told me that he was breathing freely on room air, but there was a high chance that he would need CPAP. She told me that the grunting breaths were common and not something to be concerned about. That’s when it hit me, I hadn’t been over to see Bennett yet. I felt unabashedly rude as I rolled away towards baby B’s bassonnett while the doctor, completely understanding my haste, followed and continued her update. As I approached Bennett, I noticed that he had a CPAP and his breathing was more labored than his brother’s. I double checked with the doctor, who had just finished explaining that Bennett’s umbilical cord had worked its way around his neck during delivery, and that it was a blessing that we had done a C-section. I watched his chest rapidly rise and fall, and just as I had done with Brody, I gently placed my hand on his abdomen and told Bennett how proud I was of him. As I spoke these words of affirmation, his grunting settled and his breathing steadied. This truly felt like a superpower. 

For the next few hours, I moved back-and-forth between the two bassinets, infatuated with my sons. Once I knew that they were settled, the nurses asked if I wanted some pictures to bring back to Mom. As they took borderline-professional portrait shots, I texted Kass’s mom on my Apple Watch to let her know that I was heading back to the room to check in. That first time leaving the Special Care Nursery was hard, but I knew Kass wanted to see pictures and hear the updates, and I needed to make sure she was good. 

As I entered Kass’s room, I wasn’t sure what to expect. Afterall, she had just gone through major abdominal surgery. I pulled the curtain aside to see the proudest smiling face I’ve ever encountered. She had received the same updates from the doctor that I had, so she was already informed on everything. I excitedly passed her my phone so she could see more pictures of the boys. That’s when it hit her that it would be some time before she could get to the Special Care Nursery herself. I cannot fathom that realization.

Her nurse told us that the Special Care Nursery has a program where they provide small cloth pillows that the mom and premies sleep with to trap their scents. They then swap pillows and learn each other’s smell while mom and babies recover apart. This felt like putting a Band-Aid on a bullet wound, but achieving this was my new mission. That was also when I realized that I had to pee. Through minor symptoms of autonomic dysreflexia, I left the room and rolled to the waiting room where my parents sat eagerly. I slid my cell phone to my dad and showed my folks the fresh set of pictures. They beamed over the images and told me how proud they were of Kass and I. We talked for a few minutes, then I called my grandparents and texted my aunt and my uncle to fill them in. That’s when my mom noticed my flushed face and goosebumps. It was time to cath.

I swallowed my pride, and we took the trip to the hallway bathroom to empty my bladder. I pushed the discomfort out of my mind, fully knowing that this was how I would get back to my boys for the time being. Afterward, I headed back to Kass’s room and explain to her that my tailbone was sore and I needed to get off of it for a few hours or risk a pressure-injury. She assured me that she was good and that her parents would be right by her side. We made the joint decision for me to go home, take a quick shower and get a few hours of rest while she did the same.

My mom and I loaded up in my wheelchair adaptive van and headed back to my house. There’s something extremely full circle about your mom taking care of you so you can take care of your own kids. All of my insecurities washed away. The concept of my care was something that I lamented over for the last year with my therapist. In that moment, none of it seemed relevant. The only thing that mattered was getting back to that Special Care Nursery and finding a scent pillow for Kass—after offloading my tailbone, of course. 

I woke up from a deep sleep, loaded my dogs into the van with my mom, and headed to the local doggy day care/border to get them out of the house for a week. Then we returned to the hospital where she dropped me off. I told my mom I’d see her in four hours for my next cath and rolled my way down the hall back to the Special Care Nursery. As I approached the double swinging doors, I realized that I was not able to reach the telephone to dial in. My first accessibility hurdle. It didn’t seem to matter because I crossed paths with the hospital chaplain who greeted me and congratulated me on becoming a father. I asked if she wouldn’t mind picking up the phone and telling them that I was there to visit the boys. Once again, the security doors swung open, and I rolled back into the Special Care Nursery, asking every nurse I encountered about the pillow program. Before I knew it, pillows were placed into the boys’ Isolettes and I had one on my lap to bring back to Kass. Mission accomplished.

As I rounded the corner, one of the nurses had Bennett in an elevated side-lying (ESL) position and was feeding him through his NG tube. It was so simple to them, but it absolutely wrecked me. I began sobbing, and I told the nurses how grateful I was for the love and care that they were providing my sons. Leaving your newborns to be cared for by someone else feels so unnatural, but the beautiful souls that work this job truly make it possible. I sat there for a few hours and made small talk with the nurses and doctors, again making it clear how grateful I was. As the day came to an end, I told my boys how grateful I was that they chose me to be their dad, secured Kass’s scent pillow, and rolled back to her room to eat a meal and retire for the night.

My parents came back late that night to help me transfer into the hospital bed that the ward had supplied for me. One of my biggest fears leading up to all of this was that I would feel like, and be seen as, another patient and not simply as “dad.” As I fumbled my way through describing how to open my portable Hoyer lift to my parents, my fears were starting to be realized. I got into bed the best I could, and my parents helped me turn and get comfortable. I was able to catch a few hours of sleep while the nurses came in hourly to get vitals on Kass. I did some breathing exercises to work through my discomfort, and closed my eyes thinking about how truly blessed I am. Day 0 was now behind me. What would tomorrow bring?