Reflecting on My First Month as a Disabled Dad, Part 2

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 2: Days 1-12

I found consciousness from the faint vibration of my Apple Watch against my half-paralyzed wrist. A 10 minute warning that my mom would be walking into Kass’s hospital room to start getting me out of bed. To my surprise, Kass already had the TV on and was watching Beachfront Bargain Hunt while a nurse checked her vitals. I had slept in a baggy hoodie overnight because the hospital room was kept at a low temperature and I have a difficulty regulating my own. I silently grew panicked when I realized the hood was wrapped tightly around my face. On top of that I had a pounding migraine, and my body ached from being turned to one side overnight. As I readied myself to ask Kass’s nurse for some personal help getting this death-trap of a hood off my head, my mom walked in. Thank God.

Now it was time to get up. I walked my mom through the reverse order of using the Hoyer lift to get me out of bed. Transfers with this portable Hoyer never go well, and this transfer was no exception. I landed in my wheelchair with my tailbone arched forward, curving my back awkwardly. Once I land on the high-profile Roho cushion, the air cells don’t like to move around, so I knew I would likely have bad posture for the rest of the day. Not that it really mattered, I knew once I got to hold one of my newborns, my posture was going to be shit anyway.

Kass already had her breakfast delivered by the hospital kitchen. Some incredible French toast with the basic fixin’s. Food sounded nice and I wasn’t sure when my next chance to eat would be, so I rolled to the hospital café with my mom. I scarfed down my meal, chugged a Gatorade, and texted Kass to see how she was doing. I was really interested in seeing the boys while I was out, so I rolled back to the room, grabbed Kass’s scent pillow and made my way to the Special Care Nursery with my mom so she could dial in for me. We said our goodbyes there and I rolled back into the nursery alone.

As I entered, a nurse helped me disinfect my hands with foam alcohol and took Kass’s pillows to the boy’s bassinets, swapping hers for theirs and giving me back the pillows that were kept comfortably under their heads overnight. I was impressed by how quiet the room was. All day yesterday it seemed like the boys were screaming. I wondered what had made it stop. The answer was obvious as I approached my sons: food. A nurse had just finished feeding Brody, and another nurse had just started feeding Bennett. Seeing my boys out of their bassinets being fed once again made me cry. Fatherhood has turned me into a big softy, huh?

One of the nurses smiled at me, and asked me a question that I had not prepared for: “do you want to hold him?” Caught off guard, I managed to choke out the words “oh, uhm, I’m a quadriplegic,” as if that mattered. She smiled again and politely told me to shut up. In the next moment, I had a stack of pillows on my thighs and a crew of nurses guiding Brody—in all of his milk-drunk glory—onto my lap.

I sat there holding him for what felt like an hour, each little squirm putting me into a minor panic. The eagle-eyed nurses assured me that all is well and that they were right there, ready to grab him, but my internal monologue kept repeating “do not drop this kid, do not drop this kid, do not drop this kid.” Once his brother finished his feeding, I kissed his head, the nurses took a few pictures, and I headed out to get the scent pillows to Kass. As I approached her room, I thought about how to tell her that I had held one of the boys. By all regards, that should be the mother’s first gift—some skin to skin and snuggles. With the boys being moved quickly to the Special Care Nursery, she never got that, and I knew she longed for it. I felt so guilty, yet so happy that I was able to hold one of the boys. It was a strange dichotomy of emotions.

When I entered the room, Kass’s parents were already there, relaxing with their youngest daughter while she received updates about her own recovery. I squeezed my wheelchair next to the side of the bed and handed Kass the pillows. She pressed them right to her nose and took a deep inhale. I thought “now’s as good a time as ever to tell her that I got to hold Brody.” As I said those words and passed her my phone so she could see the photos, I could tell it stung a bit. Not because I got to hold one of our perfect boys, but because she still had not had the opportunity to get up there and see them. Again, I cannot fathom processing that feeling, but she did it with grace and poise. I know she was happy that I was there for them. That’s all that matters.

By now it was right around lunchtime. Throughout Kass’s entire pregnancy she had been craving a turkey and cheese sandwich on an onion roll. To no one’s surprise, Kass’s mom whipped up a few of these delicious sandwiches and we had a nice lunch together in her room. That was right around the same time that a nurse came in and told us that Kass’s blood pressure had been stable enough, for long enough, and we could now go together to see the boys. Huge exhale.

It had now been over 24 hours since our fighters entered the world, and mom was more than ready. The nurse and Kass’s parents helped her transfer into the transport wheelchair, and we moved together out of the room, through the birth place maternity ward, down the hall, and right up to those double doors, where I knew two very sleepy and well-fed dudes lay in wait. I couldn’t wait to watch what would unfold next.

I lagged a bit behind Kass while the nurse moved us through the hand wash station and through the room. I wanted to give Kass her long overdue moment to see the boys and process things. I watched the same incredible nurses that had helped me hold Brody earlier that morning lay a pillow up on Kass’s lap and pass her one baby at a time. Kass sobbed and I welled up while she cradled Bennett and Brody, together for the first time since they sat in her womb. All was finally right in this world.

We stayed there for as long as possible, until Kass was due for her next vitals check and medications. It was tantamount that we took things slow, but I already knew how bad it felt leaving the Special Care Nursery for the first time. I prepped to see that emotion in my beautiful wife as we rolled back down the hallway. While I’m sure she felt sadness leaving for the night, it was placed well behind a huge, grateful smile. I am in awe of this strength. I always will be.

We came back and got settled into her room. Her parents returned and we showed them photos of our visit. Now that Kass had seen the boys, we wanted to make sure that our parents had the opportunity in the coming days. We asked them if they wanted to see the kids the next day. Of course they said yes! I met my mom out in the waiting room hallway for another catheterization. While talking with her, I asked her if my folks wanted to meet the boys as well. We set up a visiting schedule that made sense with the Special Care Nursery rules, and I headed back to the room. There, I talked with Kass about going home late and coming home early in the morning instead of staying in the hospital bed overnight again. It was simply not sustainable and I was putting my skin at a lot of risk by sleeping in it and by using my portable Hoyer lift. She agreed, and at the drop of a hat, her sister was there with an overnight bag, ready to go. I thanked Kameo for her help, gave Kass a good night kiss, and asked “can you believe we made those perfect boys?” And with that, day one was retired.

This was pretty much our day-to-day process up until Kass’s discharge after the weekend. I couldn’t believe her recovery from such an intense surgery. With support from her doctors and nurses, she healed up incredibly well. Next came the phase of this journey that we both knew would be impossible: going home without our boys.

If leaving the Special Care Nursery to stay in a room 100 yards away felt hard, you can probably imagine how being discharged felt. Going back to a home without our newest family members felt wrong in every way. The night prior, Kass and I had a heartfelt conversation about God’s plan and how He had His hand in everything. From being with her parents when her water broke, to her sister being available and working at the hospital, to my parents being available for my care, to our OB-GYN being on call that night, and lastly, to giving us two healthy boys. He had not led us astray, and we needed to trust His process.

We packed the van full of all of the weekend’s supplies which had accumulated during our hospital stay, a lot of it my own medical supplies. We spent the morning with the boys, helping them feed and switching off holding them. Then Kass and I went to the cafeteria for lunch and seized the opportunity to discuss further about how hard it was going to be to leave. I explained to Kass that our focus was getting her healed up and ready for what was to come so we could fully welcome the boys home. Framing it like this helped. The nurses in the Special Care Nursery framed it as “don’t worry, you just have the world’s most expensive babysitters.” I would have to argue that they are also the most loving and caring. Those boys were an excellent hands, and we both knew it. But still, it was going to be a challenge.

After lunch, we went back to the nursery and spent the remainder of the evening with Brody and Bennett, making small talk with the nurses who had become friends. My mom showed up to bring us home, so we told the boys to be good to their “babysitters,” gave them ample kisses, and somberly left the hospital to head home.

The dogs were still boarded, so the house was eerily quiet when we got home, adding to the melancholy of it all. Kass and I ordered a meal to the house for dinner, and it was business as usual. I caught up on text messages and emails that had been piling up while I was in the hospital, and we watched TV while we ate dinner. Then we got into bed, where a wave of emotion hit us. We had onesies hanging up on the closet door and a twin bassinet in the bedroom next to the bed. It was empty for now, but shortly it would be so very full of life. I went to bed that night with a mix of sadness and excitement. Another strange dichotomy of emotion.

For the next eight days our schedule was more or less the same. Wake up, load up in the van with my mom, head to the hospital, spend the day with our boys, lessons from the nurses, and home after dinner. We managed to work in some scheduled visits with my brother and sister-in-law and Kass’s sister. Eventually, coming home without the boys got easier. We were seeing them all day and had formed our own daily routine. On top of that, Kass was doing phenomenal. The doctors and nurses were giving us added leniency with each visit, ensuring that we were ready for the transition home, whenever that would be.

On Tuesday, June 16, we’d get our chance to break out of premie-prison. We were going home.