A Miracle 15 Years in the Making
Yesterday, my daughter Ava Shaw was approved for surgery. A life altering surgery that although I never gave up hope for it always seemed somewhat of an impossibility. To fully conceptualize the gravity of what is about to occur on July 23, 2021. Journey with me...
Ava entered the world on April 5, 2006 at 23 weeks, making her nearly 16 weeks premature. By definition she was coined an "extreme preemie". Ava weighed 1lb 11 ounces and was 12 inches long. In addition to her tiny size Ava was extremely sick. She had apnea, anemia, bradycardia, jaundice and was born with E-Coli (a bacterial infection that was killing fully grown adults let alone tiny premature infants with underdeveloped lungs). I could likely write a book on the events just leading up to her birth. It was chaos. One of the most memorable things is the conversation with my mom after the doctor told me that he didn't think I was actually in labor. I called crying telling him something was wrong. He told me that I was far too early and I was experiencing Braxton Hicks (labor contractions that mimic birthing). I hung up with him and called my mother frantic. She said, "Amanda, our instincts are never wrong. The women in our family have that gift. Trust it. What do you feel?" I replied, "I think there is something wrong." She responded, "Me too." I proceeded to the hospital. We were right. Something was very wrong.
When I went to the hospital, I went to the regular ER and sat in a wheel chair crying and waited. I had never gotten to the trimester where they told me to go to a different wing of the hospital because of labor. The staff wasn't rushing towards me because I didn't even look pregnant. No one could have guessed I was in labor, but I was. Turns out I had what is called an incompetent cervix. Years before, I had some precancerous cells frozen off my cervix, thus weakening it and when the weight of a child was added it could not hold and incited premature labor. The ER staff was shocked I was in labor. This was the start of surprising medical personnel, but it was certainly not the end.
The next few days were sort of a blur to me. There was talk of trying to keep me hospitalized for the remainder of the pregnancy which still had 3 months. There were shots to strengthen her lungs in case of early birth and countless visits from friends and family. I was given some kind of medicine that I think kept me pretty out of it but I may just have been in shock. One morning my mom and I were watching Good Morning America. Rascal Flats was performing their hit song "What Hurts the Most". I sneezed and my water broke. This was a game changer. After the water broke bacteria ensued. I became very sick and so did Ava. The entire bed rest scenario was out the window. The course of medications stopping labor switched to medicines inducing labor since we both were now at high risk of contracting sepsis and dying. Its funny how one sneeze could change so much.
I remember the doctor telling me that I would be in labor a long time. My stomach was too small to register labor pains, but I was certainly feeling them. I told my mom, "Mom I think we are closer than what they are saying." She remained steady that I should follow that gut of mine. I asked for epidural. The doctors thought I was getting it far too early. In fact my OBGYN was so sure, he went off to lunch and to shoot a few holes on the local golf course. With a room full of visitors at 4:20 pm on April 5, I told my mom that "I thought I felt something." She called the nurse. Her face was one that is forever burned in my mind. She began to frantically hit buttons and call for people. The entire room sat paralyzed, as a swat team full of hospital staff descended and in a frenzied pace began to assemble incubators and attach wires. The nurse shouted into the hall a name that eludes me and a woman with blonde hair, a pencil skirt and no badge shuffled into the room, grabbed the blanket below me and delivered the smallest creature I have ever seen: my little girl was here. We sat stunned. As soon as she came into the world, they ran her out in a plastic box that would be here home for the next 102 days. On Ava's birth records it says my OBGYN was the delivering doctor. That's not true. He was likely on hole 7. The woman in the pencil skirt is still unknown, but I hope the universe thanks her for me.
Ava is my one and only biological baby. I have nothing to compare her birth to0, only movies. This wasn't like the movies. There was no coaching for pushing. No mom cursing the existence of the father who had put her in this predicament. No shout of joy from the doctor that "It's a girl!" and not even a crying infant making their grand entrance into the big, bad world. We had silence, panic and a room full of people who likely didn't utter a word for minutes. Ava's aunt Heather had flown into town in case we lost the baby (which was likely everyone's feeling because of my gestation), and I remember her clearly saying, "I have never seen anything like that." After all, she would know, she had been working in a pediatric ICU for the past several months. Her shock made me uneasy.
The next few hours were more blur. I remember snippets. I remember Ava's dad bringing in a little pink bear that said "Its a girl" and the whole room aweing in relief of all the uncomfortable silence. I remember the doctor coming in with sun burned cheeks from his golfing escapade and saying that "Things were very dire. She was small. Real small." He explained that her life was basically a coin toss. Ava had 50/50 chance to survive the night. Things were not looking good. She and I were both on heavy antibiotics from the poisonous bacteria that flowed through our veins wrecking havoc on the parts of us that made us operable. That night, Will (Ava's dad) and I tried in vain to pump milk for her. He held the machine and I willed a body not ready for motherhood to produce things it did not have time to produce. We got a little but not much. We laid together side by side on the hospital bed, exhausted, fearfully aware that tomorrow we were either going to be parents or we were going to start planning a funeral for a life unlived. I remember never feeling closer to another human being.
The next morning, the nurses offered to wheel me to my daughter, I declined the wheel chair and with my legs still shaky from the sedation of the epidural, I practically ran to the window to view her. There she was! She was covered in dark hair. She was pitiful. There were so many wires attached to her but I thought she looked beautiful with her tiny pink toboggan. She had made it! I remember the doctor telling me we had a long road. There were so many things wrong and we were going to be visiting this hospital for a extended time. He wasn't wrong.
There is another book here. I could write so much about the 102 days of NICU visits. I could tell you about my father flying in from his station in Germany expecting to bury his granddaughter, I could tell you about the time my grandmother visited and my daughter was off all her oxygen because of an understaffed NICU and how she had to be resuscitated in front of her; I could tell you about the ensuing visit that the head of the hospital paid us to appease us so we didn't sue for malpractice (we had no intentions of doing this), and I could tell you about Gary Ashley: a distant relative of Ava's who heard about her and who came in and prayed over her in secret, daily, and who acted as an intercessory when I lacked faith. The stories are countless, awful and beautiful. But this blog is about the 15 year miracle so let me get there.
Ava's oxygen was always a topic of concern. In a NICU you are told daily about oxygen levels. On low days they deflate your hopes and on a good day you begin to picture a life or normalcy of a little girl with pigtails playing in a park just like other little kids. Well, the doctors explained that Ava would require surgery. I am iffy on exactly when this surgery happened in those 102 days but I think it was fairly early. The surgery was called a PDA ligation. There is a valve in babies that attaches to the mother while in womb and in extreme preemies this valve doesn't close like it is supposed to and makes them lose necessary oxygen. Ava would need this life saving procedure. I signed the dotted line. Days later she went under the knife. While the surgery was a success they had nicked her vocal cord and paralyzed it. Our baby was completely inaudible. Tears would stream down her tiny face, her mouth would gape wide open but no sound. "Will this last forever?" I asked with tremendous worry. "No." the doctor responded. "Her voice with strengthen, She will learn to compensate but it won't be a typical voice. She will never be a soprano." He joked.
When Ava was released we had a full oxygen tank, a heart monitor for her bradycardia and round the clock medicines. It was madness. She would regularly set off the alarms and avert everyone's attention to us. I got a lot of looks of pity in those days. To be honest, I can't blame them. It was a pitiful situation. Again, I didn't have the typical newborn experience. There was no crying infant late into the night. In fact, there was no sound at all. She was so small after coming home, even a sink seemed to swallow her whole. We used to bath her in the plastic throw up boxes the hospital sent you home with. The first night we were free of having to go to the hospital, Will went on the porch to smoke a cigarette and a bug flew in his ear causing him immense discomfort and an uncontrollable noise of something he detailed as "scratching on his brain." I stayed home with Ava as he made the all familiar trek to the hospital we thought we were free of to have the bug removed. He came home with it in jar and we instinctively knew our new norm was anything but normal.
In the early days, we had an appointment for what seemed like every body part for her. She had so many issues. She had brain bleeding that left her right side extremely weak and we were told her dexterity, balance and fine motor skills would suffer. They did. To this day she is a "lefty". In kindergarten, she used to wipe out on the tiny stools in the lunch room because it required balance for her to sit there. Monthly, we would go to the ENT. They would spray a numbing spray down her nose and stick a long device down her nose to view that paralyzed vocal cord and record scratch pictures of it to view. She would squall. Silent squalls. Mouth opened wide and tears streaming down her tiny delicate face. It was torturous. "There isn't much we can do but monitor." they would say. After one particular visit, I decided "no more!". I wasn't going to take her to get scoped anymore. I was going to throw my efforts towards our new norm. I did. We received years of speech, OT, PT and I became an expert in her IEP process so much so that I became the person to write them. Before Ava I had no desire to be a Special Ed teacher. None. But God knew better.
In 15 years, Ava has defied the odds. She is healthy, at times happy (she's a teenager: they have their own barometer for happiness). She is surprisingly outgoing, despite her inability to communicate effectively with others. I have learned a lot and adjusted even more. I used to repeat everything she said to people because I could understand her fully. In time, I realized I needed her to advocate for herself. "Describe what you are saying Ava, use your hands or easier words to help people understand you." I would tell her. She has done just that. Many would assume Ava would be shy. She isn't. She loves people. She loves to interact. A few months ago, Ava was trying to tell Alexa to do something and Alexa was not picking up what she was saying. I thought to myself, "If technology has advanced so much that we have talking devices in our home perhaps they have procedures to help my daughter. I was right.
On July 23, Ava will undergo the first procedure of potentially 3. She will be implanted with a temporary filler that strengthens the paralyzed vocal cord's ability to meet the other to produce sound. She will undergo voice and speech therapy to learn to talk with this implant and after 90 days we will explore two potential options and likely both to permanently alter this paralyzation. A miracle 15 years in the making. I could cry thinking about the last 15 years. We have endured so much just for a normal shot at life. People take for granted normalcy. They are consumed by counting 5 fingers and 5 toes they tend not to think of counting two functional vocal cords. But this was the life situation assigned to Ava and to me and to Will. We love our little girl beyond measure. As I write this, I realize that the surgery isn't really a miracle. Its a blessing! The real miracle that was 15 years in the making was her.
Ava, if you read this please know that you have defied odds from the first day you came in this world. Keep them guessing, baby girl. I love you I will be there every day I am afforded and looking down even after my time here is gone. Life didn't hand you typical circumstances because you're exceptional. It has been an honor being your mama.