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Kylee's Story
"Kylee Ann lays on the couch watching Rugrats just like any other 3 year old would..."
Her hands propping up her chin while she lays there on her belly with the most adorable grin on her face. Her long strawberry blonde hair curls a perfect little curly Q at the end as it flows down her back. She is just like any other three year old. She argues with her 5 year old brother, loves dancing like Barbie in the Nutcracker, and she will fight if you try taking her princess dress off before she's ready. I cannot count the times I have had to wake up in the middle of the night to take off the 'princess' dress made up of layers and layers of tulle, feathers and sequins. She would wear that anywhere if I let her. When I go in to take it off I say a small prayer for God to keep her safe and I secretly wish I could hold her in my arms like that forever. The first time both of them came into my world - I will never forget. Much like any mother --you will never forget the first time you held your children in your arms. The feeling of love and joy takes over. I laugh now remembering, but managing to get Kylee here; well, that wonderful day in May three years ago was the scariest and happiest day of my life.
Months before that day I had gone in to my OB/GYN's office for my regular ultrasound. They told us we were expecting a little girl. My family would be complete - one boy/one girl! We were so excited. I had to come back in to see my doctor, 45 minutes away from our rural Oklahoma town that next day. I told Shawn just to go on to work, I'll be fine. Just routine exam - and I'd get all my baby freebies and coupons! Yay! Sixteen weeks along...I had made it several weeks past the first trimester. The time every expectant Mommy breathes a sigh of relief! It was like it was meant to be. She was a surprise - no fertility pills this time...I thought it was altitude sickness at a wedding in Arkansas. All those hills maybe - well, I thought wrong. A baby girl is on her way - I was beaming!
I was sitting on the edge of the exam table, reading a "Mommy magazine" when my doctor came in. She handed me a card - I cannot remember if she even said hello. The card read, "Maternal/Fetal specialist". At that very moment my life changed course.
My heart dropped as I looked into her eyes as she said, "There is something wrong with the baby". Her eyes were so dark and serious. I cannot remember anything after that. I don't even know how I made it out of the building. I sat in the parking lot of the hospital and cried, and cried. I wasn't feeling sorry for myself - I was terrified for my baby. I called my mom. She worked a few minutes away. A man from her work brought her to me and she drove me home but not before she sat in the car and held me while I cried.
Until I saw the specialist our minds were flooded with questions and worry. Finally our appointment came. The doctor performed an ultrasound as we remained as quiet as the last few days had felt. He decided there was calcification on the openings of the left ventricle of her brain. What did this mean? How did this happen? Would she be ok? No one knew. The suggested an amniocenteses. Demanded it, in fact.
I remember laying there - trying to remain calm. I watched as the needle went into my belly - it got close to her little body. The cramping and contractions that occur and the emotion were all too much - I remember arching my back as I was ordered to lay flat on the table. I stayed right where I was...and could see the wall behind me - my eyes found a single cross. That's where I found my peace to relax and finish the test. My eyes remained fixated on the cross and I prayed.
As the weeks passed, I underwent countless ultrasounds and a gazillon non-stress tests. The Amnio informed us it was Cytomegalovirus or "CMV" - a virus - as common as the COLD!?!? What? How? Why didn't our two year old have problems? The doctor passed it off as a very common virus but there were so many questions but even the specialists didn't know how to answer them. After putting a name to the 'virus' it seemed her prognosis changed - from bleak to hopeful back to bleak again. It seemed no one really knew.
One day, as I sat in that dark room while they performed non-stress test, I watched the image of my growing baby inside my belly on the screen and finally cried. This tiny little person inside me, was she struggling to survive? Did she hurt? Why couldn't I help her? The doctor had never seen anything like what was happening to our daughter which made no sense. It was common so why doesn't this specialist know more? Why can't they answer my questions? Soon they decided along with the calcification, she had excess fluid in the ventricles of her brain. Calcification was also on her kidneys and her liver. Her organs were not healthy. The news just seemed to get worse and worse. I was told through the pregnancy she could be extremely mentally handicapped, blind, deaf, bed ridden, a vegetable state and could very possibly die. I was told to expect the worse at her delivery even to go home and plan her funeral. I wouldn't even consider it but I was impatient and ready just to have her here so I "had" to face whatever it was I was going to have to deal with. A couple nurses and one doctor thought they had the answer to it all - abort the pregnancy. One of the nurses informed me I didn't want that "burden". Three times I was talked to about ending the pregnancy. The final time someone brought it up I DEMANDED it never be brought up again! "If I have this baby for one minute or one year I will take whatever time I have with her". Why didn't they understand that? I know God wanted me to be this baby's Mommy, I know it! She was a surprise. We tried so hard to get our Dillon - after one very scary miscarriage we finally got pregnant with him and got him here - and even that was no easy task on my body. Soon another was on her way! I was supposed to be her Mommy - period.
I was in the grocery store one day and was checking out when a boy asked me, "is it true there something messed up with your baby?" I didn't know how to handle that. His voice seemed to be on the loud speaker and it felt as though everyone in the store was staring at me. I left. I just picked up my purse and left. I didn't grab my groceries. I said nothing. I just left and drove home. And then the rumors. Seems those aren't far behind...I was into drugs. I was drinking. I messed up my child. I've never done drugs a day in my life. How dare they? A night of drinks with friends certainly didn't create these problems. Why do people have to be so cruel? The funny thing was, in this small town, that boy at the store was the first one to have enough guts to ask me to my face. I feel bad to this day for him. That is when I decided I had to come to terms with what we were facing - out loud - so we had support. It wasn't something just my husband and our baby boy would have to deal with but our entire family and some in our community too.
To my surprise and disbelief -- most people truly cared. Some people would ask and I would happily tell how she is already loved so much and you could tell when they didn't want to know the gushy stuff they wanted the dark details but I just went on and on about her 40 different ultrasounds. Eventually, those quit asking - they didn't want to accept that "we just didn't know" any more than we did. Those we were around every day, coworkers, close friends, parents who took their kids to the same sitter; they were there - praying. They meant it when they asked or told me to try not to worry. They kept us lifted.
People prayed. It was hard to learn to deal with - accepting prayers from people for the first time in your life. I never had that before and we had an abundance. I feel Kingfisher, Okarche and prayers as far as Nebraska kept us going - even though in silence. We had people call us and very politely ask if it was ok to put us and our little Kylee on their prayer lists. People that knew us would come up and say we prayed for you today. We went to our church one Sunday when they prayed for us. It was almost more than I could handle. I didn't know how to accept whatever I was feeling. Prayer is amazing.
Eventually, it was time. April 11th - the day before the scheduled C-Section (if everything ELSE wasn't enough - she was breach). I went in for my regular ultrasound and non-stress test routine I had accepted as just a part of it every other day for the previous 4 months or so. My doctor informed me she wanted to do another Amnio. She was afraid her lungs weren't ready but it was up to me. The choices: the C-Section as scheduled tomorrow with no Amnio - risk more problems with her lungs or do an Amnio and know for sure if she's ready. I called my husband and spoke to him from her office. I was scared - again, I didn't want to do anymore tests. I begged - we can just wait until tomorrow and she would be here. I pleaded. Through tears and the best arguing I've ever done I gave up - they performed another Amnio.
That night, as I packed for the hospital and prepared for my Dad to arrive - my doctor called. Kylee's lungs are not ready. Still several weeks to go - if we take her now, we complicate matters. My reaction was horrible. I am ashamed to admit it. I bawled, cussed and cried at my doctor. It wasn't her fault. I had just reached the breaking-point.
I wanted my baby in my arms. I thought by the next day she would be here and the truth would be placed right before us to deal with. Our doctor was so nice through my abuse. She just calmly said, "I know - Janna. I'm so sorry." After we spoke I went to lay in bed. I was sleeping lightly when Shawn and Dillon got home. I heard Dillon's little feet marching across the floor as he ran to our room. My precious baby boy climbed up into the bed with me..."Hi my Mommy!" He crawled as fast as he could into my arms across the bed and hugged me. His grin was so big - always lit up the room (and still does). I held him as tight as I could. Right then was when I told myself - you have a family to be thankful for and a sweet baby boy who needs you. The doctor called to check on me later that night. Shawn had apologized for me (I am so thankful he did). He told me she was not mad and said the apology wasn't necessary. She also said later on when I apologized in person that she did the same thing (but to her husband) when she heard the news the baby wasn't ready. She did not want to make the call to me.
The next several weeks went surprisingly fast. I had a better grasp of it all or just came to terms with it. Maybe the fit I threw helped get me there. After months of traveling every other day or more to OKC -- including Sundays; we scheduled the C-section again. May 24th. The doctor promised no more Amnios - it's time to face the music.
May 22nd, my last test day. I had a non-stress test the day before and will have an ultrasound today. There's a new Ultrasound Tech and I'm used to them not being able to tell me anything about her condition but I can see on their faces the concern. Every time we get a new one I have to explain and calm them down so they don't panic. He shows me the hair on her head and how thick it is. She always has her little hand up to her mouth. I quit paying much attention to sizes and shapes of things - I just look to see what she was doing. After wiping the goo from my very large belly I get up and say, "Thank you! You just did my last ultrasound - I've got a C-section on Friday!!" He asked why a C-section?? I said because she's breach?! He made a face and said - no she isn't! I laughed and sarcastically said - I just saw her day before yesterday and she was. He made me lay back down to take another look. NOPE. (Welcome to Kylee's world) She's head down, engaged and ready for take-off. A sigh of relief - finally, good news, a natural delivery - thank you God!
Bright and early May 24th we walk in to the hospital, they have our room set up for a C-section. We have to argue that it will be a natural delivery. It seems two hours later when the ultrasound machine finally shows up to prove me RIGHT. The new tech started explaining how the ultrasound worked...I cut her off; explained she really didn't need to bother. I was having some pretty good contractions that the nurses discounted as Braxton Hicks due to anxiety. They were wrong there as well. Seems Kylee Ann was going to make her appearance May 24, 1999, one way or the other.
We went through the day just like any other expectant couple ready for their new addition. We were both concerned - but we knew soon all our questions would be answered and no matter what - she would be in my arms. Everything went fine throughout the day. Wasn't long and it was time to try and push. There were a lot of nurses rushing around my room. That's when reality hit. The doctor was there and we were waiting on the Pediatrician. I couldn't push any longer. NICU was standing by. No more pretending. I knew all of this prior to the day...I remember looking over and seeing my mom and mother in law standing in the corner. My mom with her arms around Brenda...chin resting on the top of her head. They took up as little space as possible just like they promised the nurses and doctors. I remember hearing a nurse tell them - no matter what happens, they would HAVE to stay out of the way. They listened. That one should go down in the history books.
The Pediatrician finally showed up. I was so scared to push. What was I going to be faced with? How would our lives change from just the three of us to - us four? Would she be alive? Would she stay alive? Would there be four? I was flooded with emotions. My heart wanted to burst with all the fear I held in my heart. It was time. I looked over at the picture I had of Dillon as my focal point. The doctor said - Janna, one last push and she will be here. I gained as much strength as I could and pushed. I pushed through tears and fear and emotions I don't think they have words for - the doctor told me to quit. The pressure was gone - I knew she had been born. Everyone in the room held their breath for what seemed like an eternity and then - I heard the most miraculous sound...she cried. She cried strong and loud. She was the most beautiful pink and boy howdy was she pissed off! They placed her on my chest and I just bawled with her. Everything and everyone seemed to disappear - all the worries were gone just like I knew they would be. She was here in her Mommy's arms where she belonged. I could take care of her now, no matter what. I cried, and my doctor cried (and said she's just as much of her baby girl as mine), and all those other doctors and nurses wiped tears away too.. Thank you God, she's here!
The entire time I was in the hospital with our new daughter, Kylee Ann, I slept a total of two hours. When someone else wasn't holding her I was. Watching her. Learning everything about her - all the things new moms do. We had a lot of visitors too - some who practically broke the door down to satisfy their curiosity to rush back home to be the town crier. Some still haven't spoken to me to this day. Others suggested I made it all up or was just overly dramatic. That's ok. The ones who matter were there in the right spirit.
The next day Kylee was scheduled to begin testing. The ultrasound was brought up by two young girls - it was obvious they weren't sure what to do. I could see for myself one of her ventricles was enlarged, but that was about all I could see. It was the next day before we found out the results. I cannot even remember which Doctor came to tell us, maybe there were several. I remember - it was amazing. The doctors were confused. The calcification had disappeared. It was gone. No traces. She was diagnosed with Compensated Hydrocephalus - which requires no shunt. Was it a miracle? Did the prayers work? Did all those people praying in our small towns we call home NW of this big hospital help make a difference? How could all those ultrasounds show something so obvious even to my untrained eyes and now - it's just gone? We thanked God and we took our beautiful little miracle home.
It wasn't long before life got back to normal. A healthy two year old and new baby in the house, right in the middle of wheat harvest; the focus turned to sleep deprivation, diapers, breast pumps and Barney. Soon it was time for me to return to work. Co-workers that were there with me through it all asked questions and were confused. I happily told people, she is fine, "Thank God".
Kylee turned 4-8 months old before we noticed she was beginning to lag behind. They kept a close eye on her at well-baby visits. Our Pediatrician scheduled her for an MRI. We were comfortable with whatever we had to face. The results came back, and the Hydrocephalus would remain compensated. There had been a small amount of damage in-utero; the part that effects different things but physically it effected the right side of her body. Our vocabulary grew to include Spastic Right Hemi-paresis Cerebral Palsy and Compensated Hydrocephalus in the left Ventricle of her brain. The excess fluid seen early on in her development in the womb was the Hydrocephalus. Still no word of the calcification. Her Ped/Neuro Surgeon at OU Medical Center assured us the damage was already done. Her head had grown to compensate for the excess fluid (the reason her head measured bigger on ultrasound - throwing her due date off). We would just have to wait and see how bad the CP is. So we waited...
The last few years Kylee has taught me more about life than I've learned in 28 years of living. She's just getting to the point in her life where she feels just a little different than the other kids. Her CP is mild. It only affects the right side of her body. So many other children have it so much worse. We have been truly blessed. I often go back to think about those nurses and doctor who suggested I end the pregnancy. BOTOX injections are hell on her. We see a difference but it's only temporary. There's not a fix. The injections are expensive and horribly painful on her - but a necessity right now? I guess...I don't know. If it wasn't for our insurance and amazing jobs, we would surely be in the poor house. Hit major medical every year since she's been born. Through the past 3 years she has gone through numerous testing. They have tested her eyes, ears, kidneys, and liver - everything you can imagine. She was two when she was diagnosed with Epilepsy. I could see her staring off into space quite a bit - no one believed me. I started doubting myself. Finally, my aunt saw it. I knew just by the look on my her face that she agreed. I was so thankful, I was starting to worry I was looking for trouble. Her Neurologist confirmed the seizures.
As Kylee grows I wonder if people/kids will be quite as understanding and sympathetic or if they'll care how or why she walks the way she does. I wonder if they will ever see the true miracle she is. We've lost friends because of it - one seemed embarrassed by her brace. I knew then what I was faced with - ignorance. The problem wasn't the limp, or the seizures or whether or not she's right or left handed...it's people. People just don't understand.
Kylee now takes dance class. She looks forward to it all week. She dances around the house in her princess dress and her slippers and adores her dance teacher, Miss Johanna who happens to hold celebrity status to Kylee. She also has her very first best friend, Fayth. Kylee has her own ideas, her own mind - and a strong, stubborn personality. She's tough. She doesn't let anything get in her way and her Daddy and her big brother are two of her favorite people on Earth (besides her Momma of course)...
...Years have passed since I began writing this. Kylee is almost 11 now and growing into a very beautiful young lady. She no longer takes BOTOX injections, seizure medications or attends physical therapy. The fight with the school for the therapy was exhausting. I threw my hands in the air and gave up the fight the day I left the school in tears when they suggested she no longer needed it - although our doctor prescribed it.
So we worked with a Pediatric Orthopedic Surgeon and he said - it's not worth the fight. We placed much of the responsibility on our own shoulders - stretching her every night, making her responsible for stretching. She's had two surgeries to lengthen her heel cord. She will require more as she grows on different muscle groups of her right side. For now, she wears a leopard print AFO (brace) which completely expresses the type of personality she has - she is her own person with her own identity and her brace is now an 'accessory'. She has a Pediatric Ophthalmologist as well. He watches always looks for signs of calcification during eye exams. She wears glasses (bifocals in fact) but they are always the most stylish frames and looks forward to contacts possibly this summer! She will not allow the CP to stop her. Now don't get me wrong, there are times she wants Mom or Dad to get her out of running 1.5 miles with everyone else in P.E. but it doesn't happen. She cannot now nor has she ever been allowed to think of it as a crutch. All in all - she's tough. She may cry when her feelings get hurt by a friend, or when she gets embarrassed at school by falling or whatnot but, she's tough; even though some teachers have told her she needs to toughen up. She's never cried after a single surgery and has only cried once about the CP and that's because her doctor put her back into a leg brace.
She and her brother still have an amazing relationship. Dillon has fought for her honor a couple times -- kids making comments about his baby sister won't be accepted. The Principal called me during one such incident and informed me to come get him but I was not allowed to discipline him. I didn't, of course - once I found out the story. That was Elementary school. We've moved up to Middle School now and boy/girl dances started this year. She has officially had her first dance with a boy! That little guy does not realize the impact he had on her.
But, I have learned it's not the kids who are cruel; it's the adults. Adults stare with no regard to feelings. Adults can be so rude. Adults are stupid sometimes and should learn empathy. I pray High School doesn't bring out the meanness in the kids. I won't take my kids out of Kingfisher Schools, though. These are the kids who know her story. Their parents are our friends, family and co-workers.
The most important lesson I've learned is - life doesn't always go as you plan it. Kylee's daddy and I are divorced now, but we have an amazing co-parenting relationship. We're still great friends and I am dear friends with his wife. In life - sometimes things just can't be fixed or maybe don't even need to be fixed. I've made so many new acquaintances and friends and have seen their children affected worse by CMV. To this day I cringe when someone says "God doesn't give you more than you can handle". I don't know if it's a true statement or not but I know this is how God planned it and maybe all it takes is a little more patience and understanding to get through it all? Or maybe, he handpicked us to be these very special Angel's Mommies.
And me?? Well, I'm still that Mommy with a stronger Faith than most would ever imagine or suspect. I don't have to stand on the roof tops and proclaim myself an amazing Christian, God knows I'm here. He gave me two of the most precious gifts on Earth...my Dillon and my "Kylee-girl". I get to be Mommy to two amazing souls - both who continue every day to teach me something about life and love; and for them...
~I am truly blessed~
- Shared by her mother, Janna