Meet my cousin, Erin. Well technically she’s Stephens first cousin but I claim her as my own. or really their family has claimed me, taken me in, made me feel like on of the originals. Erin has an incredible incredible story. I am so thankful for her for going through the emotional healing process of writing it down. I know it will bless you so much, and encourage those of you who are praying and asking God to do miracles in you or your children. I can’t say enough about Erin, and her precious Natalie, our goddaughter. They are the most special people. I pray today’s story both blesses + challenges you.
Anybody can change the world: I’m just a believer in miracles
Growing up, my mom always told me that I was a miracle. I was born with something called Pierre Robin Sequence. The odds of me being born with this condition were about 1 in 8,500. Pierre Robin is a “sequence” because of the sequence of events that occur while the infant is in the womb. The newborn’s jaw is receding, the airway is blocked by the tongue, and the cleft palate makes it impossible to form suction and eat from a breast or a bottle. I was treated for 30 days at Santa Rosa hospital in San Antonio, Texas, which is a three and a half hour drive from my native San Angelo, Texas. My parents tube fed me until I was three months old, and at that point I decided to reject the tube feedings with my stomach muscles (a story my mom commonly refers to when encouraging me to use my strong will). When I was 11 months old, I had my cleft palate repaired by Dr. Tom Jeter. My favorite story of my recovery was that my parents were at Santa Rosa Hospital in San Antonio, Texas, discussing my treatment, and they found out about Dr. Jeter. Up until the late 80’s, cleft palates were repaired with skin grafts. It was a pretty gruesome and very ineffective surgery. Many times the graft would be rejected by the body and the procedure had to be repeated multiple times. Dr. Jeter was on the cutting edge of a new treatment that would repair cleft palates by pulling together the roof of the mouth, sort of like a corset, and allowing the palate to grow into itself. Dr. Jeter, the one doctor who was trying out this new procedure, was located where else, but right there in my hometown of San Angelo, Texas. Dr. Jeter will always be a hero to me. He forever changed my life by being an innovator of his time. I am so fortunate to have absolutely no lasting effects from my Pierre Robin.
My story has always been told to me as one of celebration and faith, of people coming together to pray for me and my family to help us through my recovery. When I was fifteen, I had a follow up with Dr. Jeter to look at the progress of my recessed jaw. He said that medically, it was fine where it was, but he could perform a jaw distraction to pull it forward for aesthetic purposes. Without hesitation, I declined, knowing that God made me very special, recessed jaw and all. My family was always told that my Pierre Robin was not genetic, but caused by my positioning in the womb. I never had any concern of passing it on.
Flash forward 20-something years later. My husband, Jake, and I found out in June of 2009 that we were expecting our first child. I never knew until I read that positive pregnancy test, but I was born to be a mom. I had an effortless and beautiful pregnancy. I wanted nothing more than a triple decker peanut butter and jelly sandwich and a nap every day. There was a concern that I was carrying extra fluid in my uterus, but countless ultra sounds showed that everything looked fine. I truly believe to this day that God knew I had no business knowing at that time what was about to happen. My due date was February 19, 2010, but my little lady was in no hurry. Finally, on March 1, 2010, after three failed inductions, I was naturally progressing with my labor. When my water broke during delivery, it was a brown color, indicating Meconium. This is a situation when the infant has its first bowel movement while still in the womb, a danger if she ingests it. Because of this, a NICU team was present at her birth. It is little things like that; when I look back, I can see so clearly that God was in charge from the beginning. With two labor and delivery nurses, two doctors, four members of a NICU team, and my sweet Jake cheering me on, my very own little miracle arrived. Jake and I hadn’t picked out a name yet. We wanted to meet her before we decided. As soon as she came out, they rushed her over to the isolete and began working on her. Jake immediately pushed through the swarm of people, and I yelled to him, “What does she look like?” He yelled back, “She looks like a Natalie.” My sweet Natalie Elizabeth.
The doctor brought her over, but he did not hand her to me right away. He began to say words like recessed jaw and blocked airway. I immediately knew what was happening; Natalie had Pierre Robin Sequence. Through the fog of my 12 hour labor and all of the voices talking in the room, I felt like everything went silent when I took my baby in my arms. I whispered to her that I loved her and everything was going to be okay. They took her from my arms and wheeled her isolate away to the NICU wing. Jake left to go be with her, and I sat alone in that labor and delivery room, sobbing. All I could say was, “Help me,” a prayer that I would utter about a thousand times a day for the next 59 days. The wave of guilt that washed over me as the nurses were unhooking me is still, to this day, indescribable. From hearing the stories of my Pierre Robin over and over, I knew a good summary of what Natalie was about to go through. This condition came from my DNA code, and in that moment, I felt like everything that was happening was all my fault.
After I was cleaned up and unhooked, the nurse wheeled me down to Natalie’s NICU room (another God moment, in retrospect, is that the hospital I delivered in was attached to one of the most renowned children’s hospitals in the nation). Jake stopped us at the door with tears in his eyes, never a settling sight when you’re looking at your husband, and warned me that Natalie’s veins had collapsed when they were trying to get an IV in her, and there was an IV in her head. She also was hooked up to all kinds of beeping monitors and had a device called a Trumpet in her nose to open up her airway a little bit. Through all of the equipment, I saw the most beautiful, perfect creation. Jake and I cried, laughed, and loved on our new baby, just as other new parents do. That next day the parade of social workers, pediatricians, nurses, surgeons, and specialists came in and out, discussing Natalie’s care. We became so overwhelmed and confused. I’ll never forget when a speech therapist came in and introduced herself; my dad interrupted her by saying, “Funny that even a speech therapist is coming to evaluate Natalie, because for some reason, she hasn’t even said a word yet.” Amid all the emotion, stress, and confusion of that day, the inside of that NICU room exploded with laughter (clearly, another God moment).
The number one concern for Natalie in those first few days of life was her airway, which seemed to get worse minute by minute. I would hold Natalie in my arms, but instead of staring at her, I would stare at those monitors. Jake and I, along with Natalie’s team of doctors, decided to try a procedure called a Tongue-Lip Adhesion to open up her airway and give her jaw a chance to grow out a little. This surgery was the most minimally invasive option, but we knew going into it that the success rate was about 50/50. Being in the waiting room during her first surgery was the worst. We were surrounded by family, but I clung to Jake and just reminded myself to breathe, over and over. My life verse replayed in my mind about a million times, “For I am the Lord your God who takes hold of your right hand and says to you, Do not fear; I will help you.” –Isaiah 40:13. I knew one thing; I was not alone. Not only were we praying for Natalie, but a whole community of people from the west coast to the east coast were praying for that little one. The surgery went well, but the recovery was long, painful, and the procedure did not work. Natalie’s airway continued to deteriorate. Our second option for surgery became a choice between a tracheotomy and a jaw distraction. A tracheotomy would consist of putting a trachea tube down Natalie’s throat to allow her an airway while her jaw grows. The recovery from a tracheotomy is seemingly endless, and it carries a mortality rate of about 20%. A jaw distraction didn’t really sound much better, if you can believe that. In a jaw distraction surgery, the jaw of the patient is completely broken on each side and then wired together by an apparatus with two arms coming out behind each ear. The device is turned twice a day to widen the space between the points of the broken jaw, and as it heals, the jaw grows back together. A jaw distraction had never been done on a newborn at Phoenix Children’s Hospital, but they had a whole floor devoted to tracheotomies, so naturally her team thought that was the way to go. My mama instinct was new, but every time the doctors would discuss the tracheotomy, everything twisted inside of me and told me not to do that. We met with the treatment team, decided against their advice on the tracheotomy, and elected for the jaw distraction surgery, a long procedure and a seemingly endless recovery process.
This was my low spot. I grew tired and very angry. I was frustrated with God’s plan. Natalie was breathing on a ventilator, sedated on IV drugs that would knock out a grown man, and we, her parents, were helpless. I sat at that hospital day in and day out, by her side; and family and friends sat at that hospital day in and day out, by my side. We had three meals a week delivered by our church; Foothills Baptist. Jake described this act of kindness as being like someone throwing out a life preserver to a drowning person. What they did for us saved our lives, relentlessly being willing to help in any way, and nothing was ever asked of us in return. The day eventually came, after the gears were turned (which Jake did because I could not stomach it) and the bone had set, that the breathing tubes were ready to be removed. Natalie’s isolete was surrounded by her medical team and Jake and me. Her surgeon, the world renowned Dr. Davinder Singh (who is also an innovator of her time and will always be my hero) removed Natalie’s breathing tubes. We all held our breath as Natalie took her first one. She took a deep breath in and then wailed, obviously mad at everyone for putting those stupid tubes down her throat in the first place. After her tubes were removed, Natalie continued to heal and improve. Two weeks after her jaw distraction surgery, she went back into the OR to have the hardware removed. Within a week, we were taking our miracle home, with nothing attached to her but a feeding tube. Natalie came home April 28, 2010, 59 days after she was born.
Her next miracle came that August when we took her in for ear tubes. They performed a hearing test while she was under sedation and discovered that she had severe hearing loss. We immediately scheduled an appointment to get her fitted for hearing aids. I was devastated, but I fervently prayed for God’s will to be done. If it was God’s will for Natalie to need hearing aids, I prayed that she (and we) embraced this obstacle as something that just made her that much more wonderful. Natalie was sitting on my lap as the audiologist gave her a hearing screen to decide what hearing device would be best for her. The audiologist took a step back, apologized, and said she had to run a different test. After she read the results, she looked at me and said these words that I will never forget: “I cannot explain this Mrs. Coy, but your little girl can hear just fine.” Miracles. They are alive and well. Natalie has not failed a hearing screen since then. The cleft palate repair came in November, and Natalie breezed through it.
Natalie is now a happy, healthy, and SASSY three year old lady. She has a story to tell of strength, perseverance, and God’s miracles, just like I do. Her Pierre Robin will always be celebrated and discussed openly, and it will always be something that the two of us share. I am proud to show her, just as my parents were, those pictures that can be tough to look at, but that record a part of her journey. The IV sticking out of her little peach fuzz head and that intubation tube that was bigger than she was were all instruments of healing. My prayer for Natalie is that she knows God and feels God through the struggle that she was given when she was born.
Since Natalie’s birth, I have had a chance to share my story with countless moms, in particular two moms who have precious Pierre Robin babies of their own, and Jake and I got to share our testimony at our church and at my MOPS mom’s group. Natalie’s struggle is tough to re-live, but those bumps and bruises we acquired along the way heal a little bit each time I get the opportunity to share the story of my miracle and Natalie’s miracle. Really, God’s miracle.
My challenge to you is to open your eyes to today’s miracles. Share them, celebrate them, and get down on your knees and thank God for them!
you can find Erin mostly on Instagram: http://instagram.com/erin_coy