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.

Robotically, we packed up and jumped in the car for our 5 minute drive to the hospital. I remember it all so clear.  The lights of the cars passing by in the dark in the early hours of the morning. Taylor Swift playing “Shake it Off” on the radio as we tried to distract ourselves. The prayers rolling constantly through my head. I remember unbuckling Taryn from her carseat and holding her so tight before we walked into the building, breathing her in. It was time. It truly was here.

We checked in as usual at the registration desk, but this time they gave us a lanyard with our credentials, as opposed to the daily sticker. For some reason, this simple gesture was so symbolic to me in that moment.  We had credentials to stay in the hospital.  This was happening. I didn’t want that special privilege or those credentials. I sheepishly put the lanyard around my neck. I was so scared I was shaking. It felt like a noose, holding me captive.

We checked in next at the nurses station where Taryn was given her wrist bands and then walked to the waiting area.  George and I barely talked as we waited. What was there to say? We were terrified. We took turns holding Taryn tight. Kissing her head. Squeezing her tiny body. And before we knew it, they called her name. With extreme trepidation we took her over to kiss my mom, and it took everything I had not to let the tears fall. I feared if I started, I wouldn’t have been able to stop. A feeling I had come to know all too well over the past few months.

We walked down the long, zig zagging hallways to the OR prep area. Dr.’s and nurses in full scrubs were already busy at work. We navigated our way through them and into a room that had a door on rollers, a couple of standard chairs and a rocking chair. They let us know the doctor would be in in just a moment, and the door shut behind us. It felt like a prison cell to me.  Of course, it wasn’t anything like that, there were warm colored pictures on the wall, but in my mind, I felt trapped. The temperature was low and cool. I definitely was uncomfortable. I tried to keep Taryn occupied in the room as we waited, pointing out all of the different figurines on the wall mural. It was only 2 minutes or so until the team of doctors made their way in to check in on Taryn, to review her head, and to check in on us.  They asked if we were concerned about when they had to take her back. We were. They pulled together a medication to make her woozy in an effort to make our separation easier. I wanted some for me…..

When Dr. Birgfeld (one of Taryn’s surgeons) stepped in he was sweet, kind and reassuring. I tried to keep it all business, that is, until he asked how George and I were doing. Hot tears spilled down the side of my face. The words wouldn’t come. I sat there crying and silent, trying with all my might to speak, but I couldn’t.  He sweetly smiled and told us that they understand they are working on our most special little one, and how this is often hardest on parents.  The fact that he took the words out of my mouth did indeed make me feel better.  They left us to change Taryn into her baby hospital gown, and then swiftly came in to deliver the medicine to relax her to a “drunk-like” state. I realized I had been hoarding Taryn since we were in the room, and quickly handed her to George to snuggle. I’ll never forget him rocking her, holding her so tight in that chair, fighting back tears.

She lifted our spirits as she became comedic under the influence. She stared at George so lovingly, as she proceeded to play with his lips like they were the coolest things she’d ever seen before. This moment was a bright spot, as it actually made George and I laugh at a time when I didn’t think that was possible. Soon after, the team came in ready to take her back. It’s a good thing George was holding her, because he handed her over calmly and quickly.  If it was me, I’m sure I would have nearly fought the nurses and doctors – not wanting her to let her leave my grasp. They took her blanket and her binkie with them, which did wonders in terms of my comfort level. And like that they were gone. Taryn didn’t even flinch at the transfer. They left the room with her, leaving George and I alone to collect ourselves. We cried. We hugged each other. We felt so out of control; knowing we had to trust the life of our baby to these amazing doctors. This was finally it.  After a couple minutes we left the room feeling empty and headed to the nurses desk we were instructed to go to. There they gave us a pager.  They would call us throughout the surgery and give us updates. Though we had just sent her back, prep would take quite some time, so they let us know it would be quite awhile before they paged to let us know she was back in the OR.

We walked out of the maze of halls and back into the waiting room to meet my mom. I can’t explain the sense of lost control that I had at that moment, but it was so clear to me. I’m naturally a control freak. I like to prepare my own outcome, or at least know I’ve contributed everything I could to the success or failure. In reality I guess that’s where we were and exactly what we had done, but sitting back and just waiting, just trusting… this was a hard life lesson. We made our way to the cafeteria. People tried to get me to eat, but I couldn’t. George and I had agreed to participate in some genetic testing. Soon after we made it to the cafeteria we were called up to have our blood drawn. This was actually a nice way to break up the day. We had to be somewhere, to be doing something other than just waiting, staring at the pager. When it went off for the first time, I panicked trying to get to a phone.  It was the nurse telling us Taryn was all prepped and they were starting surgery. That whole time I was certain they were already working intently on her head… and they were just starting. I knew it was going to be a long day, but reality was setting in as to what I could truly expect.

Family was on their way up to meet us as we waited.  And… so was a certain angel…

You may remember I mentioned Shelby, one of the heads of Cranio Care Bears, in a previous post. She had coordinated to bring me my coveted Care Bear package to the hospital during Taryn’s surgery.  But here’s the thing…. on the day of the surgery, while I really wanted the Care package, I was worried about meeting with Shelby. I was concerned about sitting with someone who I didn’t really know during the time when I was at my literal lowest. I didn’t want to have to hold a legit and friendly conversation, when I all I wanted was to lay my head down on the table and cry. Secretly, I wished she would drop the package and then be on her way.  Little did I know, Shelby — she was our angel.  I truly mean that with every piece of my being.  I honestly believe she was sent our way to save us. She was easy to spot with her welcoming smile and purple CranioMom shirt. And from the moment she sat down, I wanted her to stay.

Shelby felt like part of the family instantly. She was calming and all-knowing in the best way.  I didn’t feel like I had to entertain her. She was just there for us, as a beacon of strength, someone who had gone through all the emotions we were going through. Someone who truly “got it.” My family all kept saying “she’s great, we’re so lucky she’s here.” And they were right. We tried to eat in the afternoon, and I think I did actually manage to down some food, forcing myself so I could be strong for Taryn when she came out of surgery. All of our pager updates had been very positive and regular. Thank goodness for those.

As we finished up our late lunch,  I felt the familiar buzz of the pager and jumped for the closest phone. This time the nurse said Dr. Birgfeld was waiting outside the OR and wanted to speak with George and I. My heart sank, my face went white, and I thought I might faint. I hung up, ran towards the table where everyone was seated and told them the news. I was ready to sprint for the OR.  I was sure something was wrong, something had to have gone wrong…. Shelby calmly smiled and said “Great! They’re done! He just wants to talk to you about how it went.” I can’t tell you how much relief I felt in that moment. Had it not been for Shelby, I would have sprinted down to the OR frantically.  She gave me breath, and George and I were able to gather ourselves and walk to meet the surgeon.

Dr. Birgfeld, all suited up in surgical gear met us outside the nurse’s station. As we sat together, the words “Everything went wonderfully” left his lips and for the first time all day I took a breath. She received a blood transfusion (as expected), but the surgery went well and they were just finishing up everything. I wanted to jump up and hug him, and from the look in George’s eyes, he wanted to do the same. We contained our tears, but the gratitude we felt was overwhelming. What do you say to the man who just saved your daughters life? We ended up shaking hands, as our gratefulness beamed from every inch of us.  They would be calling us in a couple hours to see her.

The relief was amazing. We knew we had a long road still ahead, but George and I felt the first little bit of peace in that moment and we tried to relish it. Hand in hand we walked back to meet our family and share the news. With a long wait still ahead, Shelby lead us to the other more comfortable areas of the hospital, the spaces we didn’t yet know existed and continued to aid in our passing of time. As I finally sat and went through the Cranio Care Bear package I was in awe with the amount of care and love that goes into each one.  Aside from sweet amenities meant to help keep parents and their babies more comfortable during their hospital stay, the most heartwarming piece is the prayer chain complete with personalized ribbons. Others have donated these ribbons, each with a different saying about prayer, strength, hope, etc.  Encouraging bits to hang on your child’s hospital crib. We cherish that chain, and we keep in Taryn’s room to this day.

Finally, we received word that Taryn was set up in her room in PICU, and we could go see her. I was so excited to be able to kiss my baby.  And also, so scared. I had no idea what state she would be in….







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