Kira's Beginning

They say, "As long as it's healthy..." But, what if it's not? No one prepares you for your world to be turned upside down, for you to be blindsided by the birth of your sick or disabled child. My husband and I were teenage sweethearts, we have been together since I was fifteen years old. Two crazy kids who started their family young, having three amazing boys by the time I was twenty-five years old. I absolutely loved being a mom to boys, I absorbed everything dinosaurs, dirty, Tonka trucks, and Power Rangers. When I became pregnant with my fourth child, I already knew that it was going to be another boy, I was convinced that my husband and I could not create girls. Laying on that exam table, crisp white paper beneath me, bladder painfully full, the ultrasound tech moved the wand gently around my twenty week abdomen and asked if we wanted to know the gender. I already did, I didn't need her to tell me, but I answered her anyway, "Absolutely, yes please." She pointed to the three little white lines and said “This is a baby girl.” I could not believe it. In fact, I didn't believe it, not completely. My cousin was told she was having a girl, only to give birth to a boy that became the proud owner of a hot pink bedroom and flower embroidered outfits. I eventually trusted the imaging and went crazy with fabulous and exciting ideas of how I will do her nursery, what theme I wanted and the decorations. I wanted to go all out and throw Pepto Bismol pink on everything that would be involved with her. This was all new territory, and it was breathtaking. Her nursery was painted a light lavender, donning garden bugs, butterflies, and flowers on every wall. There were even large butterflies hanging from the ceiling. It was magical. The time came for us to meet our little girl. It was July third when I was admitted into the hospital. I had been in early labor for a few days prior, but I was an old pro at the tightening and relaxing of the uterus, I knew active labor had not yet begun. Still, during an assessment on that day, we could see that the baby's heart rate would dramatically decelerate with each contraction, so they decided to keep me and help labor progress. This was it! We had not yet settled on a name for this upcoming princess, my choice was Sophia, and I would often call her Sophie Bear as I rubbed my tummy. My husband's choice was Kira, after the character Kira Nerys from Star Trek. He was a bit of a "Trekkie.” I had some reservations with his choice of name. First of all, I can hardly pronounce it, my mouth wanted to say "Kara”, and if her own mom can't say her name correctly, how can I expect anyone else to? Secondly, name her after a Star Trek character? I felt as though he had truly lost his mind. I felt the same when he, my own mother and his sister thought it would be a fantastic idea to name her Liberty, calling her Libby for short, when it was realized she would be born on the fourth of July. I looked at all of them like they had two heads, asking what was wrong with them! Looking back, that actually was an adorable idea, and I was the crazy one, with quite literally two heads laying in that bed. Her heart rate continued to drop with each tightening of my uterus. She was being squeezed and wasn't tolerating it. They gave me a little oxygen and assured me this is normal. After about fourteen hours of active labor, she made her glorious debut into this world. She was perfect; so beautiful, and with SO much dark hair, nothing like her three bald big brothers. She cried a little, but it was weak. She moved a little, but not how a newborn typically moves once they are pulled from their snug, warm womb, into the outside world full of vast space and cool air. When she was fifteen minutes old, while still in the delivery room, my mom was holding her and I said, "Oh look, she's saying “no!”", she was moving her head in a side to side motion. I jokingly thought it was so cool, my genius daughter was one in a million! Turns out she actually is, well, even rarer than that, if you can believe it. However, unfortunately not for being able to voice her disapproval with her newborn body language. A few hours pass and she has yet to open her eyes, the nurse tells me that she is exhausted from the ride and simply does not have the energy. I accepted this answer. The length of time that I was in ignorant bliss would only last a few hours. During that time, we had family and friends arrive to meet our beautiful daughter, it was wonderful. When she was around six hours old, she developed a fever. The doctor let me know this can happen when babies get dehydrated. He had me unwrap her from the receiving blankets covered in bears and bunnies, remove her tiny white t-shirt and pink and blue striped beanie. Although I was a breastfeeding mom, he wanted her to have a bottle of formula to get quick hydration into her. Alone in the room, I offer my girl the bottle, she instantly choked on the milk and her skin turned blue. I panic and call for the nurse. The nurse comes in and tries the bottle herself. Again with the choking, skin going blue once more, at that point, I insisted the bottle be taken away. An hour goes by, I have my baby in my arms snuggling peacefully when I notice that once again, she is turning blue. This time, there is NO reason for it. At this point, there are enough red flags for a neonatal intensive care unit (NICU) nurse to come get her and take her for an assessment. At that time, the thought was that her eyes were still closed due to swelling and that she must have an infection somewhere. In my head, while yes, I am very afraid, I am thinking I only have a couple of obstacles here: she has to become coordinated with a bottle, and they have to treat the infection… not too much to deal with, eh! Soon after they rolled her out of my room, a man knocked on my door for the third time to ask me to fill out the form for her birth certificate. I had asked him to come back twice before, as I was still undecided on her name. Kira or Sophia, Sophia or Kira? This had never happened to me. With my boys, they were named before they were born, and that was that. But now, looking at her, I didn't FEEL her being Sophia, as I had while she was my Sophie Bear for the previous four months. But my girl needed a name, so I sat there, in my hospital gown, pen in hand, hovering above the line that was screaming at me to write a name on it. I hovered for what felt like minutes but was probably seconds. I finally just put pen to paper and what was written read; "Kira Jean Beauty Queen Prettiest Girl I've Ever Seen.” Okay, perhaps not all of that, but her name was going to be Kira. A day passes, and she has become still and quiet. Her eyes have not opened, she is not reacting to the outside world, and people are taking notice. On day two, I noticed her body doing a strange, almost shivering-like action. I told the doctor what I noticed, not knowing that he had noticed as well and that he had a thought-out conversation in his head, that he wanted to have with me. He gently asked me to sit and talk with him. Now, before I tell you what this conversation entailed, let me tell you that I thank our Heavenly Father that I had my mom by my side at that moment. She has been by my side from day one, and I really feel that I would not be who and how I am mentally and emotionally without her. She has been my rock throughout this entire journey. This unbelievable, agonizing, beautiful, painfully miraculous journey. My husband as well, we have to be each others rock, something like this can break a person, and believe me, it has tried too many times to mention. When I start to crumble, they pick me up by my bootstraps, and I can only hope that I do the same for them. The doctor sits me down and tells me that he suspects there is something neurological going on with Kira. He says he would like to do an electroencephalogram (EEG) on her brain. I had no idea at that time what an EEG was, but I was understanding that he thought there was something wrong with my daughter's brain... "WHAT?!" They do the EEG, and I only had to wait a few hours before getting the results, the horrible, gut-wrenching, disgusting results. Here again is where Jesus put another angel in my presence, my sister-in-law Kim. I had just walked into the NICU and was at the sink washing my hands when the neonatologist walked up to deliver the results of her EEG. If I remember verbatim, the conversation went like this; "Are they in?" "Yes." "What are they?" "It's very abnormal." "What does that mean? What does that mean? What does that mean?" This is where people talk about shock as being in a dream state. The room was literally spinning, everything went foggy, I went numb, and felt sick. My sister-in-law Kim walked in at that very second. Thank you, Lord. I sat down, and I remember the doctor having his hands on my knees asking if I can hear him. My husband Jim then came in, sat next to me, and I told him what the results were. All I needed to know was, "Would she make it?!" He could not tell me the answer to that. The doctor, my husband, and I continued the conversation back in my recovery room. We discussed what this could possibly mean for her, what tests they will be running, the labs they will be drawing, and he tried to answer the panic-stricken questions that were racing out of my mouth, to the best of his ability. Reflecting on Kira's first fifteen minutes of life, it's now clear that she was not that prodigy child flowing out of the womb knowing how to communicate, it was the first of her millions to come, seizures. Kira ended up being in the NICU for exactly one month. The entire time, she couldn't have anything more than a diaper covering her, as she kept her mysterious high body temperature. If you were to even drape a receiving blanket on her, her temperature would shoot up. She was placed on Phenobarbital for her seizures, and a nasogastric (NG) tube was placed for her feedings. During her first month, she would suck on a bottle or breast, briefly. She never did root, or open her mouth on her own, but, if you placed your finger in her mouth and pulled her tongue down, then worked the nipple in, she would start to suck, albeit not very strong or smooth. It was literally like trying to feed a sleeping baby, who started to suckle for a moment as they dreamt. I couldn't help but irrationally think that she would not be going through this, that she would be a "normal" (we don't use that word anymore, "neurotypical" is preferred) little girl if I had kept her name as Sophia. I was convinced that Sophia was not meant to go through this journey. I shared this with all of her nurses during our stay, who of course tried to rid me of this self-inflicting chastisement. I kept this ridiculous, unwavering belief for years. Somehow, Kira came home on oral feedings. I wasn't educated enough, or even fully mentally available enough, to realize what a terrible decision this was. One month after being home, I had to take Kira to the emergency department for very scary behavior. She was breathing incredibly fast, her back was arched, her heart rate was in the 220s, she had a fever and was sweating buckets. It wouldn't come to an end. This was different from the seizures that I had been trying to accept. What she was experiencing is called an "Autonomic Storm.” Our autonomic systems control our respiratory rate, heart rate, body temperature, and blood pressure. Think of it as your "automatic" system. She was also labeled as ‘failure to thrive’, not meeting the weight or nutritional standards that she should have. She of course was admitted into the pediatric intensive care unit (PICU), during this admission, the intensivist changed her anticonvulsant, and from that moment on, she lost what suck she did have. I would try the bottle here and there after this, but quickly became discouraged and depressed, and gave up my efforts. I very much regret 'throwing in the towel' on my girl, as her having any type of oral behavior is pretty much all that she was able to do. When Kira was three months old, she had a g-tube placed, a surgical procedure called a fundoplication (this prevents stomach contents from re-entering your esophagus), and a skin, muscle, and nerve biopsy done, in hopes of giving a name to what Kira was going through. During our first few months, we had just about every lab drawn, tested for every syndrome out there, all the assessments a professional can perform, but still, no answers. What EVERYONE agreed on, was that this child would not see her second birthday. Across the board, this was to be her fate. Even a doctor that I traveled to, to get 'new eyes' on her, told me and my husband to cherish every day, as she will not make it to two years old. What IS it with this magical number two, that doctors love to use?! Doctors have conferred with other specialists, and I, of course, have scoured the internet, searching for someone else like Kira, but alas, she appears to quite literally be the only human being like her. Nobody can find another human in a sleeping state since birth. Even blind children have their eyes open. She is a medical mystery. Today, Kira is sixteen years old and remains in a sleeping state, never opening her eyes. She does however roll them briefly during her seizures. Rarely, she will slit them open ever so slightly for a moment. She has what is called 'intractable epilepsy', meaning that regardless of what medications or treatments she receives, her seizures are relentless, they cannot be controlled. Since her first day of life, she has had seizures all day, every day. Some days are better than others, but never a full day of peace. On average, we get about two-four hours of her brain being at rest before it sparks back up and she starts clustering; seizure after seizure, until the next medication dose knocks them back out and suppresses them for another two, three, four hours. She has never had a purposeful movement, she cannot move any part of her body, she cannot speak, cannot eat, and she can hardly muster up a cough. If she isn't seizing, she appears to be asleep. If you don't know her, you think she is, and at an early age, she was nicknamed "Sleeping Beauty.” It is unbelievably frustrating and confusing that during a seizure, her arm will raise, her head will turn, her leg will lift, her larynx offers the sweet sound of a voice I will never hear speak, but if her brain isn't sparking, it's silence and stillness. What is being unlocked during those neurological sparks and why can't we locate that key? I have fully, I think, accepted that I will never have an answer to any of this. I have finally stopped praying for her to wake up, but instead, to just have a good quality of life. While I know there are powerful forces at work, pulling her back to me as I beg and plead when she is teetering between worlds, I don't believe that she is receiving that quality of life that I wish so badly for her anymore. I use to tell people that she is like an infant in the sense of tending to her daily needs. What an infant needs most is comfort, nourishment, security, and love. Kira could win awards for her cuddling skills. Unfortunately, she has been through and continues to go through excruciating, miserable things. Things that seem inhumane and so unjust. She has seen countless amounts of hospital stays, she has had a couple of handfuls of surgeries, and is now to the point where her body is just tired and not as resilient as it once was. This gorgeous, precious, amazing, innocent soul, does not deserve any of what she has to endure every single day of her life. In saying that, It also needs to be mentioned that I am so grateful to still have her with me, and trust me, I fully realize how selfish this sounds. I can’t bear the thought of the alternative, though the rational part of my brain knows I will have to. I will let my heart and brain work that one out. In the meantime, I will continue to shower my baby with all the love that I have inside me. I am trying every day to find a way to get her back to the days when she was stable and cozy. But is it really possible to rewind time? If only. Kira has taught so many people, so many lessons: lessons of love, of perspective, and rekindling or even lighting someone's low or non-existent flame of faith. Having been the lucky one to be called her mom, I am a completely different person than I was before this magnificent being was brought into my life. I have been molded into many different forms. Some for the better, some not that great, and in other ways, just changed - not for better or for worse. I want to say perspective has been one of the largest gifts that I have been given. This was imparted upon me by my mother when Kira was still in the NICU. Her words of wisdom hit me like a ton of bricks and have stuck with me, always bringing me back to where I need to be. Although my daughter is severe and our life gets unimaginably frightening, I now have the ability to be able to think, "It could always be worse." I am able to find the silver lining in the blackest of spaces. It is not always an easy feat, but I keep searching until I find one, because, there always is one. Sometimes you have to dig just a little bit deeper. As crappy as life may seem at the moment, as unfair and painful, as much as it can knock you down and take your breath away - take a pause, take a breath, and eventually you will find some good. If I find myself complaining of discomfort, I think about Kira, and what she has to endure, and tell myself to "Knock it off!" I have learned to treasure and really breathe in each moment. I make sure the people around me know how much I love them. Life is but a feather floating in the wind, never knowing how strong or calm the gusts will be. Never take people or moments for granted. This young lady is physically stunning. When she was younger, I would often find myself staring at her, wondering what she would look like with her eyes open, laughing, running, and playing, until it became too painful to picture. She has her dad's auburn hair, full, with soft waves. Her eyes are a beautiful grey-blue with lush eyelashes. Her eyebrows make women jealous, I'm jealous. I was a teen in the early nineties, when the pencil-thin brows were in, so I tweezed until the hair follicle finally said "Good riddance.” Her brows have that perfect arch that so many women pay to create. That perfect arch and those tranquil, beautiful “blues”, are also a perfect compliment to her daddy. Her lips are full, soft, and pink, almost heart-shaped. She has an angled chin and puffy Cabbage Patch doll cheeks. When in her presence, you can feel her, you know 'she's there’. On really amazing days, she will give me a little half 'Elvis' smile. Did you know that the act of one curling up a part of their lip could be the absolute best gift you could ever receive? Who needs all the riches in the world? No, this smile is it. When her mouth gives me that brief upward turn, my heart leaps with joy and gratitude. She is unable to respond to you, but I fully believe she understands, that she is aware. Her brain just doesn't allow her to respond. Have you heard of "Locked-in syndrome?” I believe Kira is similar to this situation, it's like a comatose patient awakening and repeating things back to you that transpired, or that were said while they were in the coma. Kira is not in a coma, she just won't ‘wake up’. We went on to have a fifth child, another boy. I know this sounds incredibly reckless and insane, but I needed to have another baby. I needed to see my infant crawl, grab for toys and reach milestones. I know that was a selfish state of mind, but my mind was not in a clear, rational place. Kira Jean has four brothers that love her to no end. They are incredible with her, and so understanding. With Kira's extensive medical issues and frequent hospital admissions, their lives have been dramatically affected. Now that the older boys are adults, we openly talk about what their childhood looked like. It's no secret that they did not have a normal childhood. They missed out on a lot of things, and they often had a depressed mom. Depressed, anxiety-ridden, scared of literally everything-so never letting them go anywhere-for fear of something happening to them, and exhausted. They did get more love than a mom can give though, flooding them with verbal "I love yous,” and hugs and squeezes all throughout the day. At the time, I thought this was enough. It wasn't. My sons are remarkable human beings. They acknowledge what I was going through, share with me their experiences of that consequence, but in the end, tell me that they know I did the best that I could do. I’m listening to their words and sincerely putting forth the effort, in not creating the same lacking with my youngest son, still at home. Our second home has been the hospital PICU. I have developed friendships and bonds with the doctors, respiratory therapists, and nurses there and It made me realize my passion. My childhood dream was always to be a nurse or a veterinarian. When I was pregnant with Kira, I started attending community college, beginning my path to becoming a nurse. Of course, I stopped attending when she was born. I finally became a licensed vocational nurse (LVN) last year, and it feels amazing to be able to call myself a nurse. I am currently attending community college, on my way to becoming a registered nurse (RN). The ways that the PICU nurses have been there for me in my darkest moments, shining even an inch of light for me, made me realize that if I ever put my RN license to work, PICU will be my home. Not only have they saved my daughter's life countless times, but they have also saved mine, figuratively speaking. It would be an absolute honor to be that same light for another parent who so desperately needs it. I have seen my child stop breathing too many times to count. I have seen her lips, fingers, and toes as purple as fresh grapes. I have to put a suction catheter down her nose & throat often. Her spine is curved to 130 degrees. She hurts. I hurt for her. I am not sure whose pain runs deeper. There are no words to describe the love that I have for my daughter. What mother can put her love into words? It's such a powerful, unbreakable bond, and I know that she loves me just as much as I love her. I make sure that I tell her that I know. She and I have our communication, though the outside world will not detect it, we know. Kira has a strength that you could not imagine. How can someone, so incredibly fragile, be so strong? How can she be such a powerful warrior, yet so delicate? I am in awe of Kira Jean Beauty Queen every single day. I could not be more proud to be her Momma.