As most of you know, unless you’ve been living under a rock, the Cook family has had another eventful week. One week ago today, Callie Anne had her 4th surgery, which was the first of 2 that will give her 10 fingers and 10 toes! Each surgery requires a full day of pre-op appointments where they do measurements, paperwork, bloodwork, and meet with the surgeon. We started out this time with a trip to the Dallas Arboretum bright and early Tuesday morning with another craniofacial syndrome mom and her little girl. If you are ever in Dallas in the fall, it’s definitely worth the visit. CA liked the pumpkins there a little more than she did at our local pumpkin patch and we got to visit with April.
After an hour or so of pumpkin heaven and many photos, we headed to Medical City Hospital for what we knew would be a very long day for all of us. (this isn’t our first rodeo!) The anthropologist at The Craniofacial Center, Dr. Kolar, got new measurements of her skull since surgery and was very pleased with the results. Her head circumference was actually ON the growth curve for the first time instead of way below it. Across the hall, they took more pictures of her hands and feet that will assist with the surgical plan, as well as help track the progress. We had about a 2 hour gap in appointments and we all got pretty restless!
When we finally finished up, we all took a little rest at the hotel before heading out to Lewisville to visit our friends and their brand new baby girl, Riley. Callie Anne had never met a new baby before and really wanted to play with her. And by “play” I mean lick her face and grab her ears. I couldn’t get over how tiny and precious she was and I honestly can’t remember my own big girl ever being that small, even though she was for the first 5 weeks!
Camma & Poppy arrived Tuesday night and we all began preparing ourselves for another big surgery day. It’s all becoming a little routine for me now and I’m becoming a master at packing just the necessities. She had an early surgery time for this one, so we were scheduled to be at the hospital at 6am. And that’s when the chaos began…
As we were packing everything in the car, somehow the automatic locks kicked in and Callie Anne was locked in the running car in the parking garage. Now this was already a tense morning and I was on edge just preparing myself for the surgery and stressful recovery. Hearing my baby crying and screaming inside the car and not being able to get to her just about put me over the edge. We all scrambled to figure out a way to get to her. I’m sure the poor hotel security guy thought I was a complete basket case because I was crying so hard I couldn’t breathe and screaming at everyone. Not my proudest moment. It was 6:00am (hospital check in time) and the locksmith said he would be there in 15 minutes. Needless to say, he wasn’t. I was humiliated as I called the hospital admissions desk in tears and told her that we would be late and we had locked our child in the running car. So, after calling the guy many, many times, we decided…40 minutes later…to just break the window. I truly think Butch and David got some serious satisfaction out of the whole tire iron smashing of the window and I kind of wish I had done it. I could have used the release! After clearing the broken glass out of the backseat and hugging my baby girl so tight that I’m sure she couldn’t breathe, we were finally on our way and were swooped right to holding only 45 minutes late. Everyone knew what had happened by the time we got there. I can’t imagine the conversations that took place before we arrived. How embarrassing! I was pretty much done emotionally already and didn’t have much left to deal with the fact that she was about to go back into surgery only 4 weeks after her cranial vault. Maybe that was a good thing. We took more pictures of her sweet hands and feet and sent her on her way.
I actually slept a lot that day in between calls to the OR for updates every 30 minutes. We were so blessed to have my mom and Butch there to take care of us. I don’t know how families without good support systems can get through things like this.
The surgery took a little over 5 hours and we were reunited in recovery. She was pretty doped up and out of it which I was fine with because I knew that as soon as she saw those big purple things on her arms and legs, it would not be pretty! They had to put the IV in her scalp because, well, where else would they put it? Everything was covered. It was a little strange, but I was able to overlook it most of the time. It’s amazing what isn’t a big deal anymore after your child has had her skull cut open and reconstructed! She did great coming out of the anesthesia, but did need oxygen throughout the night. She was ok until we got to our room. And then the real stuff started.
This little girl of ours is full of sass and independence. She was not at all impressed with her new accessories and made sure we knew it all day and all night. In the middle of the night she just sat herself up and let us know that she’d had enough. I’m so proud of her personality because I truly believe it will serve her well in her life. She knows what she wants and she is going to get it. She amazes me!
The next morning, Dr. Fearon came in, took the foam off, and sent us on our way. It’s truly remarkable how quickly he gets us in and out of the hospital. He believes that children heal better at home and it’s definitely proved true for our Callie Anne.
It was a very long and very trying ride home. Casts and car seats don’t go well together and she was really starting to feel the pain. David drove and mom and I had to take turns sitting with her in the back because I could only take a couple hours at a time seeing her in so much pain and frustration and not being able to help her. That first night at home was awful. Just awful. She was really hurting and couldn’t get comfortable. She would wake up thrashing around and screaming. I will have nightmares about it for a very long time. We slept holding her for the first 2 nights. I wanted to be sure that when she woke up hurting a scared, we were there to comfort her. Being home was difficult because she was in familiar surroundings, but not able to do all the things she could do before. My heart broke seeing the frustration on her face and the look in her eyes that just said she wanted me to fix it. And I couldn’t. She has since learned to play with several of her toys and enjoys the noise she can make by banging her casts on things. She was rolling and sitting herself up again by day three.
Throughout the week, we’ve all figured out new ways to do things. We are all learning to adapt to life with casts and are 1 week in. Only 2 weeks to go. Honestly, I think we are better off in the casts than we will be when we start the dressing changes on the skin grafts, but that’s a thought for another day. Right now, I’m taking one day at a time.
Callie Anne turned 11 months old today. In this 11 months, I’ve learned more than I have in my entire 33 years before her. She is the most amazing person I’ve ever met and I know that all of this will be worth it when she has 10 little fingers and toes to play with! A dear friend with a new baby told me today that I’m her inspiration. She said she thinks of my strength when she’s struggling with lack of sleep, spitting up, and feeling lost not knowing how to help her son. It was so nice to hear that and I’m thankful to be able to give her that encouragement. However, when I’m struggling with medical equipment, surgical recoveries, and feeding tubes, I think of another mom I know who is in the hospital with her baby girl right now going through chemo for a brain tumor. She inspires me and makes me know that if she can do that, I can do this. You never know who you are inspiring or speaking to through your actions. Motherhood is a beast. It’s the most rewarding and hardest job there is, and we are all in the same boat no matter what our specific circumstances may be. It really does help to stop and take a look at the big picture. I’m thankful to be an inspiration to other moms and even more thankful for the moms who are my inspiration.