The days leading up to surgery were such a blur. I committed myself to helping with family gatherings in an effort to turn my attention away from my fears. But let’s be honest here, no matter how I tried, those fears haunted me daily. Remember, our pre-op (which was an all day event) was moved to the day directly before surgery. Initially, I wanted to come home after the pre-op. I wanted to spend the night before surgery in the comfort of our own house, as a family, all together. I desperately wanted to cloak myself in the last minute, unchanged normalcy of happiness with my children. However, instead, we agreed to reserve a hotel in Seattle near the hospital, relieving ourselves from the potential struggle of the morning commute and uncertainties surrounding it (surgery check in was 6:45 am).
Looking back, we definitely made the right decision. At the last moment, George and I realized we needed to figure out a better transportation plan for our time in the city. I was leaving my car for my mom to use for chauffeuring the boys to and from sports practices, and trying to park George’s lifted truck in Seattle garages sounded like a nightmare. Luckily we had some sweet friends who loaned us their car for our travels (Big thank you to the John’s).
3 days before the surgery date we needed to start prepping Taryn for surgery, washing her hair with special shampoo and swabbing antibiotic up her nose. I remember the first time I put her in the bath and reached for the shampoo that had been staring at me from the shelf for the last couple of weeks in wait. It was really time. This was the moment when the proverbial start gun went off and the countdown clock commenced. Our official surgery start was time stamped and we were thrust into what felt like the point of no return. After binge reading through blogs and community forums on Facebook for Craniosynostosis, I attempted to pack for the hospital journey ahead. Standard toiletries, blankets, extra socks, phone chargers, pillows, sweats, for George and I. Button up pajamas for Taryn (ones that wouldn’t matter if they ended up stained in blood — chilling but true), her favorite blanket, bottle and most importantly the stuffed musical bear I had been putting her to bed with for weeks playing sweet lullabies. If her eyes ended up swelling shut we hoped this familiar toy would give her comfort. (P.S. any family members of Cranio babies, I’m happy to give more detail here to help prep with your hospital stay. Send me a note!) I kept checking and re-checking our bags, until I figured it will be what it’s going to be.
We left early in the morning after our dreaded goodbyes to the boys.
Naturally, we didn’t want the boys to be scared. George and I played our parental roles just right, but inside I was shaking, and my eyes were hot with tears. I remember tucking Taryn into her car seat, and somehow my feet kept moving, ultimately landing me in the front seat of the car. This seemed miraculous at the time because truthfully all I wanted to do was to yank her out, hold her in my arms, and pretend this wasn’t real. With the recent, unexpected passing of my grandfather still less than a week fresh, I was incredibly raw and equally weak at controlling my emotions. I felt trapped in my tortured imagination.
Before we knew it, we were at Children’s. George and I settled in for what was a long day of appointments. We started out with positive attitudes and strength shared between one another, and by the end, George and I were beaten down, emotional, terrified, and tired (and my memory is so vivid of just this exact emotion that I have tears streaming down my face as I write this). Please don’t take this wrong. The staff at Children’s is amazing, kind, and we are so incredibly grateful for them. Unfortunately, delivering scary news and making sure patients are informed of all potential complications is part of their job as well. They shared with us how all the things you don’t want to happen — could happen. Because after all, this is surgery, and this one is intensive. One of the many doctors came in and gently explained all the risks involved, reminding us a potential complication could indeed be death. This is one of those heavy pieces of information you know to be the truth, but hearing it from a medical professional was extremely hard (and yes, normal for any surgery, but still…). It was at this time they asked us to sign the operational consent form. The doctor turned to me for a signature and I couldn’t speak. I couldn’t do it. I knew George didn’t want to do it any more than me, but there was literally no physical way I was going to be able to make my mark. It felt like we were signing her life away. As I looked at him across the room with tears falling from my eyes — he knew this — I know that he knew, and he nodded his head that he would sign. In retrospect, this could have been viewed as the moment we agreed to save our daughters life. Instead of signing our daughters life away, we were committing to saving her life. But at the time, it was hard to see past the next 2 minutes, let alone the future. The medical team comforted us and stepped out for a moment as George and I both dropped our heads into our hands and cried. We hugged our little baby doll, obliviously crawling around the room, and we sent silent cries of prayer to the Lord above.
We continued to meet with each surgeon and their team, nurses, social workers, and other specialty clinicians in preparation of the next day. Taryn had her blood drawn again to test the speed of clotting (one more time). This was again traumatic unto itself because of her tiny, delicate veins. By the time we were finally done, it was evening. Drained, we left the clinic in silence and tucked a sleepy Taryn into her car seat in preparation of meeting my mom at the hotel just down the street. When we got into the car George and I broke down — again. Feeling helpless and out of control. Scared out of our minds. I looked at him and said “Let’s just run for the border, let’s run away.” I know how funny that sounds, but in the moment, I truly meant it. Heck, I even knew it sounded funny when it came out of my mouth, but it was what I felt at my core. I just wanted to run. But running wouldn’t do any good. This was our babies health we were talking about. I was feeling trapped and scared. Eventually, we collected ourselves and made our way to our hotel a couple miles (thankfully) away.
We checked in and met my mom who was staying with us. Anxious to get some food (or rather finally feeling like we could, or at least should, get something in our stomachs), we looked up the closest place for delivery pizza and placed an order. After a 90 minute wait amidst Monday night football fans and a snafu with the delivery driver, we finally received our meal. We ate, gave Taryn her final bath and antibiotics, and then settled into bed (not sleeping a wink), cuddling each other tight. I set my alarm to wake in the middle of the night to give Taryn her last bottle. A night never felt so long. Or so, I thought….