George and I prepared ourselves as best as possible as we headed back to the PICU to see Taryn for the first time. Only 2 people were allowed in a room at once. We walked hand in hand down the curvy hallway, so anxious about what waited ahead. Taryn’s room was in the very back. As we passed the other rooms, I nervously peeked inside. My eyes scanned the surroundings, darting from room to room. I tried not to look. It felt like I was invading others privacy. But, it was impossible not to wonder about the other patients, the other families, and the other trials flowing throughout this ward. Continue reading
The morning alarm came all too quickly. My adrenaline spiked the moment it went off. We took turns taking a quick shower and dressing in our comfortable clothes as we prepared to settle in for the long day ahead. Taryn was happy and as sweet as ever. Meanwhile, the pit in my stomach nearly swallowed me whole. I tried not to think about what was about to happen to her, now only hours away. I took pictures with her in the hotel room. A nice round of selfies, because, well… I wanted to remember what she looked like right before surgery. And because I was so scared at what might happen next that I wanted pictures to remember her by. You may sit back and think “that’s dramatic,” but it was my truth in that moment. Continue reading
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). Continue reading
With our new date upon us, I was quickly trying to arrange everything to be as organized as possible. Tying up loose ends at work. Putting Taryn to sleep with a sweet bear that played music to give her comfort in the hospital in case her eyes ended up swelling shut. Organizing who was going to watch the boys, what days, letting teachers know the circumstances…. on and on. Amidst all of this, I was reminded of just how out of control we truly are, which of course, is horrible for me at any time given my personality, and even worse given, well, all of the circumstances surrounding my reminder. It was horrific, heartbreaking, and simply put, too much.
The way I consumed information started to change. I joined a few Facebook groups for craniosynostosis searching for comfort from others who had gone through the same experience as us, and yearning for the reassurance of positive outcomes. While I didn’t actively participate in these groups at first, I did constantly read stories, feedback, suggestions as much as I could. Real stories, real outcomes, real successes. It was here that I learned of an amazing organization, Cranio Care Bears [please check them out at CranioCareBears.org] and donate if you can!
I had no idea what to expect when we first visited Children’s Hospital in Seattle. I had heard wonderful things about the care there, but had never had to put it into perspective as a mother of a potential patient. We packed up early morning, and left plenty of time for the rush hour commute to Seattle. I was worried about trying to navigate my way around the hospital. And apparently, as I drove, I absentmindedly drank a TON of coffee. By the time we arrived, I was sufficiently jittery and well caffienated (on top of nerves). My concerns about being able to find where I needed to be in the hospital were cured when I was met immediately by the reception team ready to direct me. Continue reading
You’d think from the title of this post, George and I were doing Crossfit. How I wish we were. Instead, we were running around trying to determine the next best course of action for our baby. Not long after diagnosis, our appointment to meet with the Neurosurgeon was set. This appointment was different. We were cool, calm and collected. I had done my research. In my mind this appointment was an interview. We knew Taryn had to have surgery, now we were trying to make sure she received the best care.
There’s been an unusual lapse between my last string of posts and this post. At first, I didn’t think much of it. But as more and more time started passing, and I felt the urge to write to get this one out of my system and move on, I found myself in a strange state of paralysis. And then, it hit me. This next post would be the diagnosis. The day when everything became a reality. No more what if’s (in regard to what the diagnosis would be). No more, maybe it’s not true’s. This was the date when our fears were confirmed.
We didn’t have to wait long for the CT scan appointment to arrive. Thank God. As we waited, I lived in a private, tortured state. To the outside humming world, I appeared fine. Inside, I was falling apart. On an nightly basis I would frantically and neurotically research online, consuming anything and anything about Craniosynostosis.
This was a day of the unforeseen. We all have days like this. When something occurs, so out of the expected, that there’s not really a way to put your reaction into words. Taryn and I headed to the medical facility in Tacoma. I was familiar with this campus from taking my oldest son there when he was young. I felt prepared for the drive, prepared with the small details as to where to park, and ultimately, prepared to hear that my daughter may need a helmet. When they called us back to the exam room, I wasn’t nervous. Not at all.