11
THE ROAD TO RECOVERY
WHEN I FIRST FOUND OUT the scheduled date for Mia’s big surgery, I felt the pressure of one particular aspect of her recovery—her eating. Even though Mia bounced back well emotionally and had no complications with her physical healing process, trying to feed her was not just a daily challenge; it was a meal-by-meal, snack-by-snack ordeal.
By this point on Mia’s journey, I had met numerous parents whose children had already undergone the bone graft surgery, some having the traditional procedure and others the less invasive method Dr. Genecov was now using. I had heard plenty of stories of how painful the procedure was and how long and difficult the recovery would be.
During our preoperative visit, we had met with a nutritionist who explained what Mia’s ideal post-op diet should be. I already knew Mia would need to be on a liquid diet for three months, and the nutritionist gave us a goal of a minimum of 1,500 calories per day. Because the body burns more calories than usual when it is going through a healing process, it was critical for Mia to get this amount of nutrition each day.
Although she was ten years old, Mia’s size was comparable to that of a seven-year-old. I knew that keeping her weight up wouldn’t be easy, especially since she has always been a picky eater. Finding nutritional liquids that she would actually be willing to consume would prove to be a challenge, as she liked only three liquids: Dr. Pepper, apple juice, and water—none of which would provide the nourishment she needed. I had talked with Mia’s pediatrician and with our team at ICI, and they assured me that the weight issue was something we had to take seriously. We truly could not allow her to lose even a few pounds.
Children with cleft palates are born with misaligned teeth. Mia’s teeth are positioned all over the roof of her mouth, clumped together on one side, with the other side almost completely vacant. It’s a long process to get the teeth where they need to be. As you can imagine, this makes eating extremely difficult for her. She doesn’t bite her food like most people do. She tears it or breaks it with her fingers and puts small pieces into her mouth. She has done this for years, and we’ve gotten used to the fact that it takes her much longer to finish a meal than everyone else.
I’m not sure why Mia has such a limited diet. She refuses to try anything new, including most sweets, and is very particular about certain foods. For example, she will eat processed fish sticks, but she will not eat fresh fish that Jase catches. This really upsets Jase, especially since he comes from a family who lives to eat! Even Reed and Cole throw up their hands in frustration because they think she is just being stubborn.
The list of food Mia will eat is very short: chicken strips or nuggets, macaroni and cheese, cheese pizza, a few varieties of Chef Boyardee, and a few things I make at home such as spaghetti and taco salad. That’s pretty much it. Knowing what I go through normally to feed her, I was extremely anxious about her upcoming restrictive diet. I anticipated a battle.
When we were meeting with the nutritionist, she had suggested Mia drink Ensure or Boost or a similar nutritional supplement. Mia’s eyes widened, and she began to shake her head fast at me in a silent but emphatic no, while I thought, Yes, we need to do this. I finally told Mia that if she refused to eat, she would end up back in the hospital—with a feeding tube. That was not a threat; it was a fact. She knew how high the stakes were.
Not only did Mia have to be on a liquid diet, she had to do it without letting anything touch or pass her upper lip. She could not use a straw or purse her lips on a spoon; she had to pour liquid into her mouth from a cup that rested on her bottom lip. That was difficult on its own! I could not blame her for not being enthusiastic about this recovery.
I’ve Got an Idea!
I had to get creative and expand her culinary choices. A couple of weeks before Mia’s surgery, I invited a few of her friends and cousins over for a “soup-tasting sleepover” to generate peer support for her. I decided to focus on soups because they are fairly easy to make and can be loaded with healthy ingredients. Of course, Mia had hardly ever eaten soup in her life, but I wasn’t going to let that stop the experiment. I was hopeful that some of the girls would enjoy the different varieties and say, “Wow! This is great!” so Mia would at least be willing to try them.
I spent all afternoon making four homemade soups, took extra time setting the table, and did every little thing I could think of to make it fun for everyone. This wasn’t merely a meal; it was an event. I admit I was hoping that the girls being there would work in our favor. All of them were really excited about this—except Mia. She did not think it was fun at all.
The girls sat around our kitchen table in their cute pajamas, ready for the taste test to begin. I didn’t identify any of the soups but asked them to figure out what kind it was and then to rate each variety on a scale of one to four, with one being not very good at all and four being a soup they really liked. I gave them a bowl of cheese soup because Mia really likes queso and cheese is one of the foods she will eat happily. I also made tomato basil soup from scratch, a spaghetti sauce soup based on Miss Kay’s homemade recipe, and a loaded baked potato soup, whipped and thinned as much as possible.
All of the girls loved rating the soups, except for Mia. All I wanted from her was a thumbs-up or a thumbs-down. She gave the cheese soup a wavering thumbs-up and the tomato basil a definitive thumbs-down. She did not like the potato soup at all. Actually, none of them did. (I guess mashed-up, liquefied potatoes aren’t appealing to anyone!) I expected her to like the spaghetti sauce soup because my spaghetti is one of her very favorite meals. She did like it, especially because I smothered the top with grated, melted cheese.
Mia’s friends liked three of the four selections; Mia, only liked two of the four, but I was thrilled. Good, I thought, I have two soups I can feed her for the next three months. Her menu was not going to have much variety, but I was used to that. I just wanted her to eat. With two soups that I could alternate, a plain homemade vanilla milkshake, and some Ensure she reluctantly agreed to drink each day, I thought we were off to a good start. We struggled all the way through that three-month period, but we made it. Not only was Mia able to maintain her weight, she actually gained weight! When Dr. Sperry found out about this, she mentioned again that Mia had accomplished another “first” in her career. While I was completely thrilled about Mia’s accomplishment, my joy was short-lived.
An Even Bigger Surgery
Two weeks after Mia’s big surgery, we returned to Dallas for a check-up with Dr. Genecov. He was pleased with how everything looked. “After she recovers fully,” he said, “we will start the process of the distraction surgery, which will take place within a year.”
That was not what I wanted to hear. I had hoped the ten millimeters of movement of Mia’s upper jaw might make the next procedure unnecessary. Dr. Genecov explained, “Her jaw is still eight millimeters deficient. It’s only five millimeters deficient from top to bottom, but a perfectly normal alignment is a three-millimeter overbite.”
“Instead of another surgery, could we try the headgear again?” I asked, hoping there might be another possible solution.
“Since Mia has had the bone graft surgery already, I don’t think it would be effective at all,” he replied honestly.
To help put my worry in perspective, I need to share an encounter I had with another mother the day before Mia’s bone graft surgery. Mia was undergoing her pre-op appointment with the hygienist before she and I met with Dr. Jeff. While my parents and I were waiting for Mia to finish, a mother approached me, saying she recognized me from Duck Dynasty. She went on to say that her son had just undergone the distraction surgery.
“We’ve been told that Mia will most likely have that surgery in about a year,” I sympathized. “How is your son doing?”
Hesitantly, she asked if I would like to see a picture of him.
“Of course,” I replied.
She showed me a picture of a boy, not too much older than Mia, with a metal device called a halo that encircled his head with an additional piece that went into his mouth.
It resembled Mia’s headgear, but this device looked much more uncomfortable to me.
“Does it come off at night?” I asked.
“No,” the mom said. “It is screwed into his skull.”
I instantly grew sick to my stomach. How in the world will Mia be able to deal with this?
When I asked the mom how her son was doing, she teared up. “Not too well. He is depressed. He won’t eat, and he refuses to go to school.”
As much as I wanted to comfort this struggling parent, I couldn’t. Thoughts rushed through my mind. I can’t deal with this right now. I cannot handle this. I have to concentrate on Mia and “the biggie” that’s staring us right in the face! Just when I was about to lose it, Dr. Jeff came to the door and called me to come back. I didn’t know how we were going to get through that future surgery. All I could permit myself to think about right then was the bone graft. However, the image of that boy became embedded in my mind, like it had been seared there with a red-hot branding iron. I did not want Mia to have to undergo that surgery, so I started praying fervently—again—for God to deliver us.
I decided right then not to tell Mia about the distraction surgery. Once her stent was removed after her three-month recovery, her orthodontist began placing braces on her teeth, just a couple at a time. We resumed our regular appointments with Dr. Jeff, and even though we still had to attend these visits, Mia was completely healed from her bone graft and was back to her everyday, normal activities. It was like a honeymoon period, an escape from thinking about the inevitable, and I was determined we were going to enjoy it. But no matter how hard I tried, I could not forget the unavoidable next step around the corner.
Good News and Bad News
A few weeks after the bone graft surgery, still recalling that picture of the little boy, I asked Dr. Jeff how certain he was that Mia would need the distraction surgery.
“Is this something she can live without?” I pleaded.
“This surgery needs to be done,” he answered sympathetically. “It will benefit her greatly, not only in terms of correcting her speech, but her profile will look completely different.”
Seeing the emotion in my eyes as I listened to his words, he added, “You are praying people. I’ve seen the results. If anybody can change this, it’s you guys.”
He was right. Our specific prayers had been answered before. Why wouldn’t they be answered this time? Again, I enlisted my support circle to join me in praying that Mia’s jaw would grow sufficiently that she would not have to have this surgery. Confidently, we started praying.
For the next eight months, Mia and I made the long drive to Dallas for appointments with Dr. Jeff every six weeks. The time and distance of these trips never bothered me. What was difficult for me was that almost every checkup involved some type of adjustment or procedure that was hard for Mia, such as pulling a tooth or adding a brace. Whenever I would start getting emotional, I had to remind myself that each of these measures, whether big or little, was one more step toward the best possible quality of life for my daughter. In an effort to make each trip more pleasant for Mia, I’d invite either one of her cousins or a friend to come with us, and we would usually include a stop at the American Girl store in Dallas.
On December 16, 2014, almost eleven years to the day that Mia had her very first surgery to correct her lip, we drove to Dallas for our annual checkup with Dr. Genecov. My mom was with us, and we met Bonny and her daughter, Tori, at our hotel the night before our appointment.
We turned in early after dinner. I didn’t sleep well at all, but I did pray a lot. I could tell simply by looking at Mia that her jaw had not grown the desired amount. She wasn’t aware of the distraction surgery because I couldn’t bear to tell her about it. It was practically impossible for me to form the words when talking to someone else about it. I knew I had to be strong for my daughter, but every time I even thought about discussing it with her, I would start crying. I decided that whatever Dr. Genecov told us, Mia and I would hear and deal with it together.
That night, I lay in bed praying, pleading with God to help me get through the appointment the next day with strength and courage. Lord, help me find the strength to hold it together for the sake of my daughter. Help me deal with what I am going to hear tomorrow so I can be the rock that my child needs. Help me . . .
The next morning, while everyone else sat in the waiting area, Mia and I met with the doctor.
“Well, I have good news and bad news,” Dr. Genecov said. “The bad news is that she needs this surgery, and we need to get it on the books right now. The good news is that I’ve worked with a company to invent a new device. Instead of using the halo, I can now do everything internally.”
What? Did I just hear what I think I heard?
He continued talking, but I honestly didn’t hear anything for the next few seconds while I tried to process this new information.
Seriously?! I can’t believe this! I thought. Where did this come from? I knew he was working on a better bone graft procedure before we needed it, but this just came out of nowhere! I tried my best to hold myself together. All I wanted to do was call Jase and tell him this news. Actually, I wanted to climb the nearest mountain (if there were mountains in Dallas) and shout it from the top of my lungs!
After thanking him profusely, Mia and I walked down the hall for our appointment with Dr. Sperry.
“Do you know what you just avoided?” Dr. Sperry asked, grinning from ear to ear. “A shaved head, the intensive care unit for a week, and a much longer recovery period.”
That was it. I couldn’t hold back any longer and let my tears flow. Mia looked at me in surprise. If I was embarrassing her, I didn’t care. It was for a good reason.
“Dr. Genecov has been working hard to perfect this procedure, and he has done it one time so far.” She looked right at Mia and said, “And I’m convinced he did that one to get ready for you.”
Mia smiled and said, “Cool.”
Mia had enjoyed her honeymoon period. She felt no stress or anxiety about the future, which was a great blessing. I was thankful that I had not told her about the distraction surgery and glad that my eleven-year-old daughter didn’t understand all that she had been spared because of this development.
When I filled in my mom, Bonny, and Tori on this unexpected and exhilarating news, they all gasped, then shouted and hugged me.
All I could think of was how grateful I was to my Father in heaven. He had done this. Why? I don’t know. But I knew He had chosen this moment for Dr. Genecov to perfect a new invention that would spare my daughter, at this exact time in her life, the ordeal of a device that would have had to been surgically screwed into her skull.
After getting to the parking lot, I immediately called Jase with this incredible news. Like me, he was having a hard time wrapping his head around it.
“How many of these has he done?”
I hesitated, then said, “One.”
“One? He’s done one? I don’t know about this, Missy.”
I quickly reminded him of Dr. Genecov’s success in the new bone graft surgery and said, “Babe, I think it’s worth the risk. He’s proven to us just how good he is.”
Jase is not one to make a quick decision about anything, but before our phone call ended he agreed that we should move forward with the surgery.
Never a Good Time
Dr. Genecov wanted to schedule Mia as soon as possible, but we convinced him to let her finish her competitive cheer season first. Mia had excelled rapidly in her gymnastic skills and was proud for her team that had advanced to two national competitions. We decided that we could push out the surgery date so she could compete in the first competition but not the second. Her team and coaches understood and were very sweet and supportive, giving Mia a framed picture of the team inscribed with encouraging words. We scheduled the surgery for March 27, 2015.
As you can imagine, our family calendar fills up quickly and extensively. We not only have our immediate family responsibilities, like ballgames, school duties, and church activities, but there are also professional responsibilities that include filming, as well as speaking engagements and national media appearances. Around the time of Mia’s surgery, these events included the Duck Commander 500 NASCAR Sprint Cup race in Fort Worth, Texas, as well as opening night of the Duck Commander Musical in Las Vegas, all of which would have to be put on the back burner. Jase and I would just have to figure out how to juggle it all, while keeping Mia’s health and well-being our top priority.
For me, the biggest conflict with the surgery date was that it fell on the same day as Cole’s junior/senior formal at school. The formal had been a big night for Reed two years earlier, with the highlight being a special ring ceremony. Juniors receive their senior rings and ask two special people in their lives to turn the ring on their finger. Reed had asked me to be one of those two people for him, which was a special honor for me. If Cole wants me there, I will reschedule Mia’s surgery.
“Cole, who are you planning on having turn your ring?” I asked.
“I didn’t get a ring, Mom. I really don’t want one,” Cole replied.
Seriously? I thought. Boy, are you your father’s son or what?
“All I really care about is getting some really good pictures.”
I knew Cole was telling me the truth. He is not about fanfare or rituals. But he did want to remember the night.
“Absolutely! I’ll make sure we have plenty of pictures of you,” I exclaimed.
As it turned out, I think he was the most photographed student that night. Since I could not be there in person, people texted, e-mailed, and tagged me on Facebook with pictures of him. Again, my friends and Cole’s friends’ parents did what they could to help us through this difficult time. Something as simple as taking pictures was priceless to me. Yes, Cole was completely fine with my not being at the formal, but he was also sad that he could not be at the hospital for Mia. I assured him that there’s never a good time for surgery, and he shouldn’t feel guilty about attending his event—all of us wanted him to go and have a great time.
Mia’s Confidence and Courage
On March 26, 2015, Jase, my parents, and I got Mia ready and headed to Dallas for a day of preoperative appointments. After listening to the details of the upcoming procedure and recovery, Jase and I quickly realized that, while enjoying a sense of euphoria after learning about the elimination of the halo, we had underestimated the seriousness of this procedure. During the two-and-a-half-hour procedure, Dr. Genecov would break Mia’s upper jaw into three pieces, move it forward about three millimeters, then secure it with this new device. After spending the first twenty-four hours in intensive care, Mia would be moved to a regular room for the next night and, if all went well, could go home the following day.
After a full day of information and filling prescriptions with much of our extended family in tow, we asked Mia where she wanted to have dinner. She chose the Capital Grille, a place that our extended family thought was perfect. I mean, who doesn’t love lobster mac and cheese?
Our sizable group was scattered among three different tables, and because the restaurant was a bit noisy, the kids’ table didn’t hear Alan lead us in the blessing. So Miss Kay went over to their table and led Mia and her cousins in their own prayer, thanking God for the food and asking Him to watch over Mia the next morning. After she finished, she asked the girls if they wanted to add anything. Mia said that she did. They all bowed their heads while Mia prayed for Mrs. Cathy, a dear friend of ours who was recovering from a recent mastectomy and undergoing chemotherapy for stage 2 breast cancer.
Miss Kay came over to me and Jase with tears in her eyes, recounting what Mia had prayed. “I just assumed she was going to pray for herself, but she prayed for Cathy instead.”
When I told Miss Kay that we pray for Cathy each night at bedtime, Kay said, “Well, I guess Mia thought there was no reason that this night should be any different.”
She also mentioned that she asked Mia if she was nervous about the next day.
“Not really” was Mia’s response.
“But what do you feel?” Miss Kay asked her.
“Nothing. I just don’t feel anything really.”
I guess I would interpret her response simply as Mia being at peace.
Jase, Mia, and I arrived at the hospital early the next morning to what seemed like a replay of Mia’s surgery one year earlier—same hospital, same preoperative area, and same room set-up. Over the next few minutes, her room filled up with people, including Reed and his girlfriend of three-and-a half-years, Brighton, who had both driven in from college. Mia loves being silly with them, and I snapped a picture of the three of them. Mia’s cousins also surrounded her to play a game of Old Maid, thanks to the deck Mamaw Kay pulled out of her purse. Everyone was cracking jokes, taking pictures and, well, just being themselves. All this activity helped keep Mia, as well as me and Jase, thinking positively and staying upbeat.
Mia opted to not take the goofy juice this time. She told me she wanted to be awake and alert so she could tell everyone good-bye as she was being rolled back through the operating doors. Whoa! I wasn’t so sure about this. Jase thought it was very brave of her and that we should let her do it. Reluctantly, I agreed.
Dr. Sykes, the anesthesiologist, said he would tell her every single thing he was going to do before he gave her enough gas to first make her silly and then to put her to sleep. She was all for it.
However, as Dr. Sykes rolled her away, tears formed in Mia’s eyes. I had to keep myself from shouting my thoughts, Wait! Are you sure about this, Mia? You don’t have to go in like this! Let’s rethink this goofy juice thing!
I watched Mia’s face closely to catch the slightest glimpse of her wanting to change her mind. There was none. Even though she was scared she pushed through, and Jase and I let her. We both followed the gurney with tears in our eyes, but she never saw them.
The surgery took almost an hour longer than expected, and just when I was about to rush the doors into the restricted area, Dr. Genecov came out to give us the report. Jase and I hoped, of course, for the same “textbook” report that we received after the bone graft surgery.
“It was a bit challenging because her mouth is so tiny,” he said. “I felt it was too risky to make two separate breaks, so I just made one. But I am very pleased with the result. She is going to do fine.”
As soon as he walked away, I cratered. I was relieved that the procedure was a success, but the reality of what Mia had undergone and the daunting course that lay ahead of us suddenly sank in. Once again, we gathered together, and Alan led us all in a prayer of thanksgiving.
Mia was completely out of it for the first few hours after being moved from the recovery room to her regular room. She did wake up from time to time to spit blood out of her mouth. The ICU nurse brought in a suction device to help prevent blood from draining down Mia’s throat, which caused severe nausea. Keeping the drainage to a minimum was an absolute must, as Mia started vomiting blood every hour or so for the first twelve hours. Jase said that if he had seen that happening in a horror movie, he would have said it was unrealistic. But it was real for Mia, and it was definitely not a pleasant experience. When the nurse saw the concern on our faces, she assured us it was completely normal after a surgery where the jaw bone had been cut.
Within the first two hours of being in ICU, Mia was using the suction device herself, with her eyes closed, which definitely impressed the staff. “I have had teenage patients who weren’t able to do that,” the nurse commented.
Once again, Mrs. LinDee had children from our church and school make decorations for Mia’s room, this time creating paper dolls with Scriptures or messages to Mia telling her to “be brave and keep going,” a phrase we used to encourage Mia and that we also use today to help bring awareness to all children with clefts. Mrs. LinDee told us that these dolls were a symbol of all of the children standing together with Mia. It was an overwhelming sight! Even though Mia wasn’t well enough to even notice them at first, before we left for home she was pointing to certain ones and asking me to read them to her.
At the time of this writing, Mia is still recovering from the distraction operation. After returning home from the hospital, I have had the arduous task of taking a tool that resembles a screw driver, hooking it onto two screws (one on each side of her upper jaw) and turning it one to three full revolutions each day in order to bring each piece of her jaw forward a little more.
To date, this is by far the hardest procedure and recovery period she has ever had. This has been a painful process for Mia, but again she has demonstrated a massive amount of strength and courage. Even though she has a few more weeks of recovery and is limited in terms of the types of food she enjoys, she never complains of anything other than minor pain. She says she wants to be brave, but asks me sometimes if it is okay to cry.