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OUR BABY GIRL!

THERE’S SOMETHING ABOUT PREPARING a room for a new baby girl that is especially exciting for most mothers, and I was no exception. Something about the softness, the daintiness, and the frills and femininity of decorating for a daughter was very special to me. When we first found out we were having a girl, I was especially looking forward to two things—dressing her in beautiful clothes and designing a beautiful nursery for her.

Once we found out about Mia’s cleft, though, I had to spend a lot of time learning about the medical aspects we would face once she was born, and while I continued to shop for her, I could not devote as much time as I had hoped to designing a sweet, comfortable room. Besides, finances were tight for Jase and me, and we knew we would soon be facing many more medical bills than usual with a newborn.

Thankfully, Miss Kay loves to shop and decorate, and she was eager to help with her new granddaughter’s room. She and Phil did not have much money then either, but she was happy to sacrifice other things to help me with Mia.

One day Miss Kay scheduled me to work at Duck Commander until late in the afternoon. When I arrived home, I could hardly believe my eyes. Without my knowing it, she arranged a complete makeover of Mia’s room. My sister-in-law Korie, Melissa, and some of my friends had completely transformed it. The walls were painted a beautiful mint green, several pieces of furniture I already owned had been painted white, my great-great-grandmother’s rocking chair had been reupholstered, and the new white baby bed Miss Kay had bought for us was covered with pink and white linens. In addition, Miss Kay had found an antique baby carriage and filled it with knickknacks and books to accessorize the room.

Walking into that room for the first time was extremely emotional for me. My family and friends had spent an entire day working hard to surprise me and bless Mia, and Miss Kay—knowing she could do nothing to change the medical challenges we were facing, did what she does best—provided comfort in tangible ways. I was so proud of that room that day and for years afterward. Every time I entered it, I sensed the love of the people close to us. For eight years, except for getting another bed when Mia outgrew the original one, I left the room close to the way it was the day I first saw it, keeping the same love-crafted decor even when we moved everything to a new house during that time.

When I asked Miss Kay recently about her choice of decor, she said, “I was drawn to antiques for Mia’s room. For some reason, when I thought about her, I also thought about the pioneers. I could not get away from remembering everything I had heard about the pioneer spirit, the attitudes that enabled people to go through hard times and pull together and fight and overcome their obstacles. When I went antiquing and saw pretty, old things for Mia’s room, all I could think was, She’s going to have a pioneer spirit. Certain things are not going to be easy for her, but she is going to pull through it all and overcome her challenges and be a blessing to a lot of people.

Miss Kay was exactly right about her granddaughter. Almost immediately after Mia was born, Miss Kay and the rest of our family would recognize her strength.

September 12, 2003

Although I had already given birth to two babies, including a C-section with Cole, something about our daughter’s birth felt surreal to me. I remember being wheeled into the operating room, but then everything seemed to happen in slow motion. Maybe one reason it seemed unusual was that Cole’s birth had happened so quickly and with a lot of stress, only to be relieved by laughter and excitement when Jase barely made it to the hospital from the duck blind. Mia’s birth was filled with anxiety and questions, specifically whether God had healed her in the womb as we had been praying for, and if not, how severe her cleft was.

Dr. Davis and Jase were the first two people to see Mia once she was delivered. I knew we were dealing with the worst-case scenario when I heard Dr. Davis’s tone of voice as she said, “Oh, Missy, she’s beautiful.” To me, her comment sounded more consoling than joyous and relieved. I instantly thought, She doesn’t know what else to say. She’s probably trying to prepare me for the considerable facial defects that our baby has.

I had not seen my baby girl yet because I was behind a sheet. Eager to hear Jase say something, anything, I called his name: “Jase . . .”

“It’s the lip and the palate,” he said, knowing I needed to hear the truth. He was right.

Within the first minute or so of Mia’s life, I heard her cry. She did not take an extremely long time to utter her first sound, but long enough for me to think her cry was a bit delayed. When she did make a noise, it was not the strong cry many babies make. Even though her cry was less robust than that of other newborns, someone in the room said it was still healthy.

Dr. Davis held her up for me to catch my first glimpse of our six-pound, nine-ounce baby girl. At that moment, she opened her mouth wide and I could see the crater where the roof of her mouth should have been. I knew in that instant that our entire family had begun a long journey that would be quite difficult and painful at times.

Within seconds after Mia cried, I realized that things seemed to be turning chaotic in the room. “What’s going on?” I asked. No one answered. I heard snatches of conversation among the medical staff who were rushing Mia out of the room. All I could understand was something about her not breathing. I could tell that Jase was torn between staying with me and going with Mia.

“I’m fine,” I told him. “Go with Mia!”

Lying on that gurney while Dr. Davis finished sewing me up and not having any idea what was happening with my baby was excruciating. I silently prayed for God to intervene in Mia’s life at that very moment. While the pediatrician and medical staff were working on Mia, Jase was asked to wait outside.

In the waiting room, our family and friends were anxiously watching for Jase to appear, just as he had twice before with our boys. This time there was no baby in his arms. He opened the door and saw thirty-five to forty people, all waiting with questions in their eyes. Not knowing Mia’s condition and seeing the size of the crowd left him speechless and teary-eyed.

Jim Moran, one of the elders from our church, led a prayer with the whole group. This is what our church family does. They show up. They pray. They serve. To this day, I don’t know who all was in that waiting room, and I’m not sure Jase can even remember, but I do know that none of them were there for themselves. They were there to support us, to let us know that they loved us and were there if we needed them. Jase needed them at that very moment.

Because of the various conditions and complications that can be associated with cleft lip and palate, Mia could have had a serious condition, though Jase and I did not know that at the time. We had no idea what was going on with our baby behind those closed doors. Was something wrong with her lungs? Had they not developed just as her mouth had not developed? Was she unable to process oxygen for some reason and subsequently not able to breathe at all? The previous thoughts of dealing with the ramifications of having a child born with a cleft were quickly set aside. Jase and I were now consumed with praying—no, begging—God to deliver our baby girl to us.

Thankfully, the medical staff soon discovered her breathing troubles were due to “wet lungs,” a somewhat usual occurrence after a C-section, in which a newborn consumes amniotic fluid during the procedure. Normally, an infant would not be rushed to the neonatal intensive care unit (NICU) for wet lungs, but the doctor sent Mia there out of an abundance of caution.

Even though Mia’s issue with her lungs was relatively common, medically speaking, it was not common to Jase and me. A few minutes later, a relieved Jase reentered the surgical area with the update that the medical team had diagnosed her with wet lungs. We were overwhelmingly grateful.

My mom arrived at the hospital while I was in recovery. She entered while the on-call neonatologists were educating me on my new baby’s condition. However, I quickly realized that these specialists were nowhere near up-to-date on their knowledge of cleft lip and palate. One of the doctors told me that my baby’s cleft lip would be repaired in about a year and the palate would be repaired at about the eighteen-month mark. When I told her that actually the lip would be repaired at three months and the palate between six and eight months (something I learned from talking to Sue at ICI and from reading on the Institute’s website), the doctor replied in what I considered a very patronizing tone, “No, one year for the lip and eighteen months for the palate.” Instead of arguing with someone who was unaware of the advances that had been made in recent years regarding this condition, I passively said, “Okay, thank you.”

These “specialists” left the room, and Jase and I shrugged. That experience only reinforced our decision to drive Mia the four and a half hours to ICI, the place we knew was right for her.

Love at First Sight

Once a baby enters the NICU, getting him or her out is not easy. After I spent time in the recovery room and then was moved to a regular room, I asked a nurse, “Would you bring my baby to me, please?”

“I’m sorry,” she replied. “Your daughter has to stay in the NICU until she meets certain physical standards.” NICU is not like a normal baby nursery, where babies can be taken in and out and friends and family can see her through a window. Only immediate family members—two at a time—were permitted in the NICU. That meant all of our extended family and friends who came to support us and see Mia when she was born went home without even getting a glimpse of her. But the staff reassured us that once Mia was well enough to leave the NICU, she was well enough to go home.

Jase and I quickly learned that the standards Mia had to meet before she was released would be quite challenging for her. She would need to consume a certain number of ounces of formula each day, but we did not know whether she would be able to suck since she did not have the roof of her mouth.

To make matters worse, because I had undergone a C-section I was subject to the hospital’s postoperative rules. One of those rules was that I could not leave my room until the next day. Since Mia could not leave the NICU and I could not leave my room, both of us lost important, precious bonding moments together during the first hours of her life. Every time I thought about her lying in an incubator all alone with no one to comfort her, it tore me up inside. Fortunately, Jase didn’t miss a minute of visiting hours that first day. He and my mom grabbed every opportunity they could to see Mia during the first twenty-four hours of her life.

My mom took pictures of Mia in the NICU and brought them to me in my room—a sad substitute for actually being able to hold and talk to my baby but the best anyone could do. In one of the photos, Mom had put a stuffed animal into Mia’s bed with her. Because I knew how small the plush toy was, I could easily figure out how tiny Mia was.

The next day a nurse offered to roll me to the NICU to see Mia for the first time. The anticipation of that visit made my heart churn with so much love and so many questions. I did not like the idea of having to be pushed in a wheelchair (again, hospital rules) or the thought of being seen by other people in the hospital. As the nurse rolled me past other parents with healthy babies, I could feel their sympathy, as though each one was thinking, Oh, that poor lady. She doesn’t have her baby.

Though the lights in the NICU were dim, I saw Mia clearly, hooked up to various tubes and wires. But I also noticed that she was not connected to nearly as many tubes as other infants were. This gave me an immediate sense of comfort and gratitude.

When I leaned next to her, I was surprised that her mouth was closed. She was sleeping like any other baby, peaceful and content. The cleft in her lip looked like little more than two minor cuts, which made me wonder for a brief moment if she might really be okay. But the appearance of the cuts betrayed the serious problems inside her mouth, problems I knew would take surgeries to correct. Still, having tried to prepare myself emotionally for the severity of how her mouth might look, in that moment, I was shocked to hear myself say in the privacy of my heart, “She is beautiful.”

Tough Timing

Because Mia was born earlier than expected, she was in the NICU during teal season. A type of duck, teals migrate about two months earlier than other ducks, so the two hunting seasons are separate. From my perspective, teal season is as demanding as duck season. Jase’s hours at home are just as short, and the stress he feels is just as high. As I explained previously, hunting was a major source of food and income for our family at that time in our lives, and Jase could not simply skip teal season because we had a baby in the hospital—any more than a doctor could stop seeing patients or a firefighter could decide not to fight fires. Jase’s missing work was not an option for us. Besides, the duck blind was where his dad, uncle, and other good friends were every morning. I knew that these men were a huge source of comfort and encouragement to Jase during this time, and he needed that. We both did.

Every night, Jase came to the hospital and slept on an uncomfortable vinyl pullout bed until about 4:00 a.m., when he’d leave to go hunting. I was traumatized and extremely emotional over Mia’s situation, and although being at the hospital at night was stressful for Jase, he wanted to be there. He was so torn between the need to make a living and the desire to be with his family.

My parents kept Reed and Cole that week, and the most difficult part of being separated from them was that Reed had a school project due that I had planned to work on with him. He was looking forward to molding a dinosaur from clay, and I was looking forward to it too. Having my mom step in and help Reed was difficult for me to accept—not because she wasn’t capable, but because I wanted so much to keep being a good mother to Reed and Cole, even though I was facing the biggest challenge of my life.

My parents took excellent care of the boys, and in the end, the dinosaur project turned out wonderfully. Reed had been envisioning everything in his head for some time; he knew exactly how he wanted it to look and was determined to recreate his vision. The only help he needed was finding the right creative materials at the store. I think the project helped take his mind off of my being at the hospital and temporarily put aside his own worries about his new little sister.

When Can We Leave?

The NICU was equipped with all kinds of specialized bottles for infants with clefts. They had bottles with accessories to pump milk directly into the mouth and bottles with custom nipples designed for cleft conditions. Mia could not eat well with any of them and, as a last resort, she was given a regular bottle and a regular nipple. Of all the choices, it worked the best. She had enough tissue behind her upper gum line to be able to manage it. She did manage it, but with a lot of choking, coughing, and gagging. Feeding time became one of the most, if not the most uncomfortable thing to endure during the first few days, weeks, and months of her life.

Our goal was for Mia to be able to take in 20 cc’s, which is not even one ounce, in one feeding. When she accomplished that, we could take her home. She reminded me of a tiny bird, mouth wide open, trying desperately to receive nutrition from her mother. It was a long and arduous routine, each time feeling like little progress had been made, only to have to do it all over again in a couple of hours.

As much trauma as our child was having to endure, our experience in the NICU was much better than the situations many people go through, especially those whose infants face life-threatening circumstances. Still, Jase and I wanted to get her out of the NICU as soon as possible so we could get her home where she could be held and soothed as much as she needed, not merely a few times a day. I definitely needed to bond with my baby, and I knew she needed to bond with me too.

Finally, on the sixth day of our hospital stay, Mia weighed five pounds, fourteen ounces, and had been able to take 20 cc’s of nourishment. Woo-hoo! She was ready to go home!

A kind nurse snuck Mia into my room several hours before we were scheduled to leave the hospital. Prior to that day, only Jase and I, my parents, and Miss Kay had seen her. When word got out that Mia was with us, Alan and Lisa, along with Korie and her children, John Luke and Sadie, as well as Reed and Cole all came to the hospital for the big reveal.

It was wonderful watching our boys and extended family members dote on our baby girl. Korie held Mia for a few minutes while all the kids checked her out, touching her little toes and playing with her hands. Korie told me later what happened on her ride home from the hospital. When she asked her kids what they thought of Mia and her cleft lip, Sadie (who was about six at the time) replied, “There’s something wrong with her lip?” She didn’t even notice anything different. That was a huge encouragement and comfort to me. I had been apprehensive about how people would act or what they might say when they first saw Mia. I had no reason to be concerned. The way our family responded to Mia relieved my stress and anxiety.

The Robertsons are exceptional in the ways they embrace people and accept them as they are, and they relate to people in big-hearted, open-minded ways. The way they dealt with Mia’s situation was truly inspirational to me. When they saw Mia for the first time, they ooh-ed and ahh-ed over her as they would have over any other beautiful baby. They were genuinely excited about the new addition to the family, and they loved her instantly and completely. I could tell they were not trying to act a certain way toward her in order to console me or make me feel better. They were not gushing over her in ways that came across as phony or insincere. They meant every single one of the kind, encouraging words they spoke, and their happiness over her birth was deep and true.

No one tried to convince me that the challenges we faced with Mia were okay; everything about Mia really was okay with them. In fact, it was more than okay. They thought Mia was wonderful. I had observed these inspirational qualities of love and acceptance in the Robertsons for years, but that day my awareness and appreciation of their loving nature went to a whole new level.

At one point, the nurse came to check on us and was aghast when she saw all the people in the room! We were busted. She told us that everyone had to leave immediately. I knew we had broken the rules, but for me the chatter and excitement of our family were exactly the emotional boost I needed as we prepared to take Mia home.

After Jase left to take Reed and Cole home, my parents arrived with one of our friends. My mom and friend helped me dress Mia for the first time, a special moment for me. Her going-home outfit was the same one I had worn thirty-two years earlier when my parents took me home from the hospital—a dainty vintage dress with matching bottoms.

Home

I was so glad to get home with Mia. Both of us had been in the hospital for six stressful days, and I could not remember ever being so relieved to be back in the comfort of my own home, with my husband and all three of our children together under one roof. Jase and I knew our time at home would soon be interrupted by a trip that would last less than thirty-six hours, but would profoundly affect the rest of our lives.

On the day Mia was born, in the midst of the drama involving her wet lungs and her unexpected move to the NICU, I still remembered that we were supposed to call ICI in Dallas to let them know she had arrived. My primary mission at that time was to “get her fixed,” to start the process of repairing the cleft as soon as possible. As I placed the call, I fully expected them to tell us to come to Dallas within a week, so I was surprised and disappointed when they asked us to wait seventeen days because Dr. Salyer was overseas.

We learned that every time he operated on a paying patient, he also did surgery on a child whose family did not have the means to compensate him. Typically, his gratis procedures took place outside the United States. When Mia was born, he was treating children in Germany. We admired what Dr. Salyer was doing for others, although waiting even a day longer was difficult for me.

As excited as Jase and I were to have Mia home, we were both nervous about caring for an infant with special needs. We remembered the night we brought Reed home from the hospital, and neither of us slept because we had never had a baby before and were afraid something might happen to him. We wanted to be awake and alert if he needed us. With only six feet separating our two bedroom doors at the time, we heard every coo and cough Reed made.

One time during that first night, Reed sounded like he was choking. Jase flew out of bed and made it to Reed’s crib in two leaps—quite a feat from a waterbed! There was absolutely nothing wrong with Reed. We were two brand-new parents learning how to adjust to caring for another living, breathing human being who was now entirely our responsibility.

Mia’s situation was much different than Reed’s, but Jase and I felt the same type of anxiety that accompanies bringing home a firstborn. Reed was born healthy in every way; she was born with certain challenges. Because Mia did not have the roof of her mouth, she had to be sitting straight up when she ate, which is not a natural position for a newborn! Once she had milk in her mouth, it often ran out her nose. Understandably, we were concerned about her breathing and choking, and about other functions involving the mouth and nose, such as swallowing. We learned to keep her head raised at all times, either holding her with her head up or placing her in her crib with a rolled blanket under the mattress to elevate it.

Eight years earlier, when Reed was born, I had bought a set of cute little four-ounce bottles. Reed had such an appetite that those bottles became too small for him the day after we brought him home from the hospital. When Cole came along, I pulled out those bottles again, and it wasn’t long before I had to switch to bigger ones. Before Mia was born, I thought the four-ounce bottles would be perfect for her, and I was excited about using them. But when she came home, those four-ounce bottles looked supersized to me. I could not imagine her taking a whole four ounces; our greatest hope was that she would simply drink one ounce per feeding.

Being able to feed her with a bottle at all, even one ounce at a time, was a remarkable accomplishment. Weeks earlier, when I had spoken with Sue at ICI, she had warned me that the hospital staff would most likely try to convince Jase and me to put Mia on a feeding tube soon after birth. “Don’t do it,” she advised us.

She explained that once babies begin to receive nourishment through a tube, they stop wanting to eat naturally, to the point that they almost give up. “Stand firm on this,” she told us. “The hospital may say that a feeding tube is best for your baby, but it is not. An infant’s nature is to suck, and your baby needs to suck, even though it will be difficult for her and she will have to work extra hard.”

Sue knew what she was talking about. On the third day in the NICU, after seeing how little Mia was eating, the doctors strongly recommended inserting a feeding tube in her. We staunchly refused, hoping we were doing the right thing. That one piece of advice served us well. To this day, we are deeply grateful that someone shared that life-changing advice for our daughter with us. Even though feeding her made our first days at home quite difficult, we prayed about it, trusted God with it, and were able to do it.

Before Mia was born, I had planned to let her sleep in a bassinette in the master bedroom. When we brought her home, the bassinette was still in our living room, and we left it there. She spent much of her time in it, right in the middle of everything else going on in our home. In every way, she was the center of attention.

As we made our way anxiously and carefully through the next several days, we tried our best to prepare ourselves for the next phase of Mia’s journey: our first trip to the International Craniofacial Institute. Because of the distance we had to travel, we decided to leave home the day before her appointments, spend the night with my brother and his family near Dallas, and then return home after her appointments the following day. Before we left we had no idea what our visit to ICI would hold. We simply knew Mia’s future well-being depended on it.