Expectations & The Unexpected

It's been a little over 2 weeks since our palate repair, and we are so happy to report that Caroline is once again surpassing expectations. After each surgery, there is always an adjustment period- some more difficult than others. Her lip repair last December proved to be an extremely difficult recovery. Whenever I expressed this to her surgery team at our follow-up appointment, I heard, "Oh really? Well just wait until the palate surgery." So, as you can imagine, we weren't exactly looking forward to it. Well, in true Caroline fashion, she doesn't adhere to my plans. Nope, thankfully, Caroline follows her own and surpasses my expectations.

We received a lot of questions about our reasons for choosing to go with a different surgeon and hospital. I want to be clear that this decision was not made without some hesitation and even sadness. We have been through a lot in this first year with ACH. We have met many fine physicians, nurses, and ancillary staff, and formed relationships. Back in April, we made the trip to Dallas to consult with this new team, and when we returned, a nurse and friend from ACH called. When I told her we had been to Dallas, she just said, "Dr. Fearon? He's excellent." That was a difficult conversation. It almost felt like a break-up, but even worse. When you entrust your child's life with someone, you form a unique bond with that person. So, why leave? With the passing of our beloved Dr. Honnebier, we knew we needed to find a new craniofacial surgeon, preferably one that could manage her cleft and craniosynostosis, and  thankfully, we found him.

Surgery was scheduled for Friday, May 8th, so we spent most of Thursday at the hospital for pre-op appointments. Every single person we met was so kind and took time to make Caroline feel as comfortable as possible. We met with Dr. Fearon and he explained the procedure in detail. Whenever surgeons do this, I nod a lot and try to act like I understand everything they say, but really I'm not paying attention at all. I realize that sounds concerning, but this is where I rely on Josh and at least one of my parents to process this information for me. In that moment, all I can think about as I hold her is how I can reassure her and let her know how much she is loved. Then, he measures her head and I am so happy to tell you that, for once, her head has not grown over the past month! Also, he felt of her head and confidently said he believes the cranial pressure has decreased. There is no scientific explanation for this, so I credit God and you, her prayer warrior, for this unexpected, excellent news.

Two of the bravest girls I know. 

Surgery day has arrived. I can't describe all of the thoughts and emotions that race through your mind, and won't even attempt it. All I can say is that morning went very smoothly. We had the sweetest nurse caring for us in the holding area before Caroline was taken back to the operating room. We met with each doctor again, signed consents, and then it was almost time to let her go. For the first time, we are offered Versed for Caroline- although I wish they had some for parents and grandparents, too! If you aren't familiar with Versed, this is a wonderful, magical elixir that chills your child slick out. At this point, Caroline doesn't know or care where she is or what is going on- she is floating on the magical Versed cloud. The operating room nurse comes to take Caroline and when I hand  her over, there are no tears- from Caroline, anyway. We head to the waiting area and receive frequent updates that our girl is doing well. During her palate repair, she also had ear tubes placed by an ENT, so he comes out first to tell us everything went well. Then, about an 90 minuets later, Dr. Fearon comes out bouncing and smiling- that's always a good sign. After a few surgeries, you develop a knack for reading doctor's faces. Instead of the typical routine of getting the rundown from the surgeon and then waiting for 30 minutes for a nurse to come get you to take you back to your awake and crying child, Dr. Fearon takes us back immediately. He's a bit of a renegade but I like that about him. Caroline was still sleeping peacefully and he instructed us to let her sleep for as long as possible stating it would be much easier on her. Of course, I was happy to let her sleep knowing she likely wouldn't be so peaceful once she woke up. It's always difficult to walk back to the recovery area to a screaming and scared child. I realized then that Dr. Fearon wanted me to be the first person she saw when she woke up- and for that I am so grateful. When she finally woke up, the nurse wasted no time in making sure she was comfortable. She had an IV pain medicine ready to go followed by an oral, then another via IV. I really didn't expect her to eat or drink at all the first day, but wouldn't you know, Caroline the Lionhearted is sitting up gulping an orange gatorade 30 minutes later. Since it took some time for a room in the pediatric unit to open up, the nurse brought her a portable DVD player. So, there sits Caroline, drinking and watching Little Einsteins like nothing happened.

"Where's Caroline??" Playing peekaboo before surgery

Our mighty girl in recovery. They let her doll go back to surgery with her and when they got out, she managed to be wearing Caroline's socks. No one can resist playing with a doll.

Once we made it to the floor, the staff did an excellent job of keeping her comfortable and happy. They let us unplug the IV pole and take her for walks around the unit. Caroline isn't much for sitting. She has never been one of those "sit and rock me" babies. She prefers to be on the move- or rather you be on the move. She's just concerned for my health is all. I won't sugarcoat it, the first night is always rough. She didn't sleep but didn't want to drink and the only thing that kept her somewhat happy was her Mickey Mouse Clubhouse DVD. My sweet husband held her almost all night and let me take the couch. The crying, the beeping of machines, and Goofy singing about building a "birdie-house" over and over made us feel like we had entered the inner circle of Hell. OK, maybe not that bad, but it was pretty awful. The next morning when Dr. Fearon came in to check on her, she was clapping, playing peekaboo, and watching her Mickey Mouse. She had also managed to drink and eat, so he decided she was doing too well to be at the hospital. We stayed in Canton, Texas which is a tiny town about 45 miles from Dallas. We wanted to stick close to the hospital for a few days just in case. We were so thankful to have my parents there for support. Later that day once we got back to the cottage, they offered to watch her so we could rest. I assumed we might sleep 2 hours and do some laundry. Nope. We fell asleep and woke up 5 hours later. Yes, I have the very best parents ever.

We have only had a couple scares that first week home and, thankfully, Dr. Fearon is good about answering emails and calls to calm my worries. Overall, this has probably been the easiest recovery which was unexpected but very welcomed! So, next on the agenda, is getting used to this new palate and all that comes with it. She is currently fascinated with clicking her tongue and is  looking forward to expanding her food options beyond purees. We will have an MRI in June to help determine if she will will need a brain shunt and what type could be used. Then, back to Dallas in July for follow-up appointments.

All I can say to you is thank you- which never seems like nearly enough to express the gratitude my family has for you and your love and support of our Sweet Caroline.

First sit-down restaurant experience just 2 days after surgery. Had to bring the doll along of course, still wearing Caroline's socks. She had milk but was more interested in helping her daddy drink his sweet tea. It's in her blood, y'all.