It has been 1 week since Callie Anne’s Cranial Vault Remodel (CVR) surgery. I’ve started composing this blog post several times, but couldn’t find the words to describe the whirlwind that has been the past week. I could never string together words to tell you how our lives have been tested, but I know pictures can say a thousand words. Some of these photographs are difficult to look at, but at the same time completely amazing! We are so blessed that a procedure is available that could give our sweet girl what she needs to develop and grow into the child God intended her to be, and even more blessed that we have been given the means by which to have it done for her. And those surgeons. They are brilliant!
We arrived in Dallas on Thursday, Sept. 19 for an all day pre-op event on Sept. 20. You can read all about it in the previous blog post. David’s mom, Sherry, flew in from Florida Friday and spent the weekend with us. All of my parents arrived on Sunday. They all got some snuggles in with our sweet girl before the big surgery. David and I are so very blessed with a fantastic support system and parents who love us unconditionally and support all decisions we make regarding Callie Anne’s care. We never have to wonder if they will be behind us because they always are and we love them all so much!
On the day of surgery, September 23, we all woke up pretty calm and collected. I think most people stayed that way…except for me. I pretty much lost it the second we walked in the door of the hospital and didn’t get it back together until…well…I still don’t have it all back together yet. However, what I do have is the most supportive and loving husband in the world! He has been strong when I wasn’t and allowed me to be strong for him when he wasn’t. The hardest part for both of us was the time we spent with her in holding right before they took her back to the operating room. I wasn’t really worried about anything going wrong because I have complete faith in our team and the nurse gave me a number to call and check in every 30 minutes which allowed me a small sense of control in a situation that was completely out of my control. What was so incredibly difficult, and what I can never really put into words, was the fact that I was handing my baby girl off with her adorable wrinkles that I had come to love so much and would be getting her back without them. I know this isn’t a cosmetic procedure and I have spent the last 10 months telling anyone who will stand still long enough to listen that our outside looks are not what make us who we are. Having a child with a craniofacial condition has taught me more about inner beauty than anything else ever could. But…I loved her wrinkles. I loved the huge ridge down the middle of her forehead. That was the face I’ve stayed up nights staring at since the first moment I met her. No matter how much I say, “it’s not about how we look,” I loved how she looked and I wasn’t prepared for that to change. But, it has changed and I’m dealing with it better than I thought I would. (I wouldn’t have been able to say that 2 days ago, though)
If you know our family, you know that we travel in packs. We had so many friends and family there to support us that we couldn’t even stay in the surgery waiting area because there wasn’t enough room! We waited downstairs in the atrium where we could spread ourselves out. These pictures are in the PICU waiting area where we moved when she finished surgery and we were anxiously awaiting our first peek. We had 2 surprises while we waited. One of my very best friends drove in from Little Rock to be with us and our phenomenal pastor, Don Morrow, drove over from Bentonville. We cannot even begin to express the gratitude we feel toward those who were there and the hundreds who weren’t physically there, but were praying and watching Facebook for every little update about our little princess.
And then the waiting was over! Dr. Fearon (the craniofacial surgeon) and Dr. Swift (the neurosurgeon) came out with smiles on their faces. We all gathered to hear the details. They said she did great, but looked like she had been in a bar fight. Dr. Fearon said it was definitely time for this surgery because her little brain was very squished! In fact, when Dr. Swift first cut the skull bone, the dura bounced up and got a little cut which bled. They took care of it, but all I could think of was her brain in a cartoon. The caption would say, “Ahhh, finally, room to breathe!” I was terrified of how I would react when I first saw her, but my only words were, “She’s beautiful!” I cried tears of joy and relief and just kept thanking the surgeons for such beautiful work!
The first time I held her the next morning was tough. Luckily, she only had 1 eye swollen shut that day, so she could see me. She was so heavy! She gained a pound and a half of fluid during her hospital stay and it felt like I was holding a 2 year old! Those first few hours were tough.
On the second day, she was moved to the regular pediatric floor and that’s when things really got hard. She was so uncomfortable and we felt so helpless. On the 3rd day, when both eyes were swollen shut, she was so over all the stuff connected to her!
And then the swelling started. Boy did she swell! I stayed overnight with her while David went to the hotel. I couldn’t stand to leave her and needed him to be rested for all of us. She woke up Wednesday morning with both eyes swollen shut. I can’t even talk about that experience because it was so very difficult for her and me both. That’s about all I can say about that. Here is the evolution of her swelling. While it seemed absolutely awful for us, we are told by so many other parents that her swelling went down incredibly quickly. For that, we are thankful.
All the other parents had told us to take her on wagon rides around the hospital and Dr. Fearon even said that was the best thing to do to help with the swelling. So we did. We hauled her little tail all over the place. To be completely honest, on one of the trips, David and my mom took her while I took a nap!
Since we’ve been home, we’ve had some wonderful friends stop by to visit and even bring us dinners. We are so blessed! In between visits, we’ve been doing a lot of resting…as you can see! CA is just now getting over the fever from the anesthesia and picked up a cold along the way, so she’s pretty drained. She also has some strange swollen tissue in the corner of her eye from one of the sutures below the surface and some swelling and irritation from some of the sutures on her head. I’ve talked to the team in Dallas and we are treating both and watching them carefully. I’ve been frustrated by her lack of movement, even though I expected it. She was almost crawling before surgery and now she’s nowhere close. Today was the first time we could lie her down on the floor or for a diaper change without her screaming with anxiety. It’s been rough, but each day we see a little more of her. She even rolled over and pushed up like she wanted to crawl today. I know it will be slow getting back to where she was and I’m working on being patient.
The main thing we keep hearing from everyone is how amazed they are at the lack of bruising and how discrete her scar is. It’s funny, actually, the bruises on her feet from the IVs are worse than the scar on her head! Also, Dr. Fearon is amazing and doesn’t shave any hair to make the incision. Here she is lying on the operating table with all her little ponytails to make room for the incision. Genius!
Today, Callie Anne turned 10 months old! She is also 1 week post-op. I can say that it has been much, much more difficult than I thought it would be, but we’ve spend a lot of time in prayer and know that we will get through it all. She is one tough little girl and continues to amaze us every day! Here is her 10 month picture and a comparison with her 9 month one. What a difference a month can make!