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. Finally we reached Taryn’s room. It was shared with a very tiny baby, about 3 months old or less. We had to pass through their room, and through a curtain to get to ours. We placed our hands under the automatic hand sanitizer dispenser (a requirement before entering any room at any time) and I caught my breath as we pulled back the curtain and entered. Baby Taryn was propped up, slouching forward over some pillows. She was sleeping peacefully. While her incision did look massive, it also was incredibly well done and looked far better than I had imagined it might. Tears filled our eyes as we gently reached down to caress her back and kiss her head. We each took our turn bending down over the lower side of the crib and talking to her. George and I looked at each other — we had made it to he other side.
We hung our Cranio Care Bears prayer chain on her crib, and after bringing some family back 1 by 1 (each time George and I trading out our space) we finally started to settle in. The nurses brought us back a small plastic package with hair inside. It was Taryn’s hair saved from her surgery. Her first hair cut.
You can’t eat in the PICU. It was getting late and with the very little we’d been able to stomach throughout the day, George and I headed to the cafeteria to quickly get a bite to eat. The nurses gave us a pager to take with us in case we were needed. I guarded that device with my life. Though the nurses told us to take our time, we didn’t.
The cafeteria food was always so deceiving. It smelled heavenly, but the taste nearly always disappointed. We weren’t complaining though. We had so much to be grateful for. After we shoveled our dinner down, we returned hand in hand to our room. As we approached our long hallway, we recognized the familiar cry of our baby girl and started to run. She had just hit the point where her pain medication dose lapsed and before they had the chance to get her a new dose she woke up in pain. We sprinted frantically into the room as the nurses gave her her next round of meds. George and I laid with her desperately trying to calm our shaking baby girl down by reaching over the edge of the crib on our tippy toes.
We couldn’t pick her up. Taryn was literally restrained and attached to the bed to ensure she didn’t accidentally remove her lines. Pain medication, IV, monitors, lights all surrounded her tiny body. There was a large drain that ran all the way across her forehead (under her skin) collecting the fluid from her head into a large bulb in the back. Needless to say, she looked intimidating. If we missed her pain medicine dose by only 10 minutes, trauma would ensue. It would go on for a good 20 minutes until everything kicked in and Taryn settled back down. These moments were the worst. I prayed to take the pain away. I prayed to take the pain on instead. I prayed for the time to pass quickly. I prayed for strength. The doctors and nurses were great. I don’t mean to imply that they were not doing an outstanding job. This was just the nature of the surgery, the age, and our experience. I knew more of this same reaction would be on the way. It continually seemed that as I eased one fear, a new one took its place.
The limited TV in our room played children’s shows. I put on a show about puppies to serve as background noise at a nurses urging thinking “How will this help her? She doesn’t watch anything on TV yet.” But in the end, I still put it on. It comforted me to feel like I was doing something to help her when I was so limited in my offerings. George attempted to sleep on the window seat. I attempted in a recliner chair. It took all of my active weight to make it recline — the minute I relaxed, it violently folded me up into a ball. We’d switch spots throughout the night. But the bottom line is, we didn’t sleep. Nurses were in and out, we were constantly fearing the pain med canyon, and even though our adrenaline had been running all day in overtime, it wouldn’t shut off.
For the most part, Taryn would just doze, hopped up with pain medication that worked so well even her eyelids closed super slow every time she blinked. It was on this second day that I was finally able to hold her. When the nurses told me I could, I was so excited, and so scared (such a familiar feeling at this point). Taryn had so many lines crossing in and out of her body. All I wanted was for her to be comfortable. I was worried I would disrupt things… but I desperately wanted to snuggle her. As the nurses placed her in my arms, I swallowed her up with my body trying to be as close to her as possible. I held her as long as I could. It felt amazing to have her back in my arms after 2 excruciating days.
Family came in and out through the next couple of days. Really much of that was a blur. George met Russell Wilson in passing (lucky!), and we struggled to remove ourselves from the room long enough to shower simply because we wanted to stay by Taryn’s side.
The little one next to us was in dire straights. The curtain between our rooms left little privacy and it was a constant reminder of how lucky we were. Every family we met, every person we met — we felt an immediate bond with. I prayed for them everyday. Their presence made me stronger. If they were in the hospital for this…. and we were only here for this… we knew needed to continue to be strong and grateful.
We knew we would eventually get to go home, and the depth within that thought was overwhelming.
Running on little sleep, George and I often felt we couldn’t enter back into Taryn’s room without crying. We would take turns trying to console each other and alternating being “the strong one.” He would cry. I would be his rock. I would cry, he would console me and be my strength. We needed each other.
Taryn’s face did swell considerably, but not as bad as we had been warned it might potentially be. Her eyes did not swell shut. Most of her surgery was completed on the back of her head. And while she did swell around the outside of her face and her ears, we were grateful she never was completely without eyesight.
On the 3rd day post op, Taryn’s aunt Amanda came up to see us. She brought a stuffed teddy bear to give to our baby girl. When Taryn wrapped her tiny hands around the fluffy bear something amazing happened. She smiled. This was the first time George and I saw her sweet smile since surgery, and to us it was a glimmer of hope and reminder of our once constantly smiling little one. Our familiar baby girl, she was still in there.
On the 4th day we were moved down out of the PICU. Once Taryn started progressing in her recovery, she progressed fast! We were excited at the prospect of a normal (still shared) room with a flat sleeping area that barely fit 2 people, but 2 none the less! As 8pm rolled around we snuggled in for some sleep for really the first time in our hospital stay. On queue, the poor baby we shared the room with started crying non-stop into the early morning hours. Nurses in, nurses out. Mom was crying. Doctors in, Doctors out. It was a mess. As much as we wanted to be somewhat annoyed, we simply couldn’t be. We felt so much compassion for our roommates. They had been in the hospital for months already and weren’t expected to leave until Christmas (remember this was before Thanksgiving!). Needless to say, we didn’t sleep.
The next day, we were finally cleared to leave! We bathed Taryn, and put her back into “real” clothes. We were on the verge of getting to see our other kiddos and getting back to our normal. I was a mess of emotions. George pulled the car around and I ran Taryn out in her carseat, ducking through the sideways Seattle rain. I buckled my seatbelt and as we started to drive away I broke down in tears – again. There was that gut-wrenching feeling – again.
However, this time, the root cause behind this feeling was the overflowing feeling of gratitude. We were leaving knowing so many of the families we met and babies in the other rooms we passed – were still fighting. Because those other families didn’t share the opportunity to go home, I wanted to be sure I didn’t take it for granted. I offered up prayers of thanks throughout our drive home. Being at Children’s offered us a very humble perspective on life.
The boys hadn’t seen Taryn at all since we left for surgery. By the time we got home, a good portion of the swelling had subsided. Both boys were waiting for Taryn as we walked through the door. When she saw them, she lit up like we hadn’t seen in days. It was like our baby was back. Her glowing reaction was amazing. She was home and she knew it.
Our sweet neighbor arranged dinners for us for a week. It was so comforting to come home to such support. It meant the world to us.
For nights after our return home Taryn slept with us in our bed. Many babies have post traumatic stress associated with the surgery. However, it wasn’t long before Taryn made her way back to her bed, and finally after a couple of weeks she slept through the night as if the surgery never happened.
There are times when I don’t think about the surgery at all. And of course, others where I am reminded of the trauma and the pain, the strength and the growth…
When I put sunscreen in her part and have to add extra in areas because her scar peeks through…
When I pull her hair up into a ponytail and I can see that her head shape is still a bit different…
When I put a bike helmet on her head, and it doesn’t fit exactly right…
All these reminders serve to keep me grateful. We are grateful for our baby girl, and every minute we have with her. We cherish her developmental milestones just a little bit more, because we are also watching for delays and we recognize the mountains she’s moving to be where she is today.
Do I have worries about her future? Absolutely. I worry she may be embarrassed of her scar when she is older (though she has hair galore to cover it). I worry she may have future complications (though it’s not likely).
But I settle those worries with my humble gratefulness to God for his protection and love over our baby girl. This journey we experienced was trying, and hard. It cut us to our core. And yet, through the pain we have found an inner strength and a new perspective on our daily gifts.
Don’t take the little things for granted. Because sometimes those little things, turn into big things and you realize just how delicate and important they are.