Can't Believe It's Here

Kiya's birthday is this Sunday and I am overwhelmed with emotions. I cannot believe it has been a full year since the terrifying day of her birth. It is a strange thing to have your child's birthday also mark the worst day of your life. I have worked hard to bury the memories of her birth and the months that followed, but the arrival of her birthday has brought everything to the surface. I remember the boys births being the happiest days of my life. Bringing them home, feeding them and just focusing on my new baby. My experience with Kiya on the other hand was filled with fear, sadness and what seemed at the time like lost dreams.
The night of Kiyas arrival, Matt and I were preparing for an anniversary date. My parents had my boys so I had time to notice what was going on with my body. I noticed earlier that she wasn't moving as much. I jumped online and researched some techniques to get your baby moving. I drank some water and laid down, but still felt nothing. At this point I had an overwhelming, nagging feeling that I needed to take action. I left a message for the doctor on call, but after a few minutes decided to go to the hospital instead of waiting for him to call back. Matt and I casually arrived at the hospital thinking I was being my usual, overactive self. After the nurse found Kiya's hear beat we felt a sense of relief and were preparing to leave for dinner. A few minutes later the nurse came in and said that the doctor was not happy with the lack of variation in her heart beat. They took me to ultrasound to conduct a stress test. By this point Matt and I were getting worried. I remember trying to read the ultrasound technicians face to see what she was thinking. I left the room still unaware of what was about to happen. A minute later the doctor came in and told me that he had to take Kiya via emergency c-section. I immediately burst into tears knowing full well the implications of having a child 3 months early. I kept asking the doctor if she was sleeping, if that was the reason she wasn't moving. He assured me that it wasn't and they rushed me to the ER. I remember shaking uncontrollably. I have never felt so much fear in my life. They prepped me for surgery so fast I knew this was a true emergency. The doctor pulled Kiya out and I heard a silence that still haunts me today. She didn't cry, but the sound of Matt's cry was assurance that she didnt look good. As I was trying to see Kiya over the privacy sheet I say Matt fall backwards as the nurses rushed to catch him. The shock of the situation was overwhelming for us both. I couldn't see Kiya because there were so many doctors around her. Even in that moment we were blessed. Kiya was taken during shift change so we had double the amount of doctors and nurses than would have been there otherwise. Finally after I had been wheeled into my room, they brought Kiya by so I could see her for a couple of seconds before she was rushed to the UVMC NICU. My heart has never been so broken as when I saw her for the first time. I longed to be her mother and take away her pain. The following months were the hardest thing I have ever had to do. They told us it would be a roller coaster ride and it was. Matt and I lived at the hospital taking shifts and our boys were ripped from the normalcy that they had known. Every day we heard something new. Today she didn't breath well, she wont live past three days, she is severely disabled, she needs another blood transplant, her organs are failing and so on. The most devastating news was one week into our stay at UVMC. We were told that Kiyas brain had begun to bleed due to the life saving measures that were performed at her birth. I truly felt at this point what the scriptures describe as torment. I could not do anything but cry. I began to realize why the savior suffered so that he could succor his children. In that moment I was sure that he alone knew the depth of my pain and suffering. At one week of age I was allowed to hold Kiya for a few minutes before she was transferred to Primary Children's Hospital for her first brain surgery. She had so much equipment on her and I still had not seen her full face. I didn't see her entire face until she was two months old. Holding her was bittersweet as I longed to be with her and protect her. The rest is a painful history. Daily "tapping" (a needle inserted into her brain to remove excess cerebral fluid) and a constant hopefulness that she would not require a shunt. After three months of tapping her head a VP shunt was placed into her brain. We came home four days after the surgery and finally had our baby home with us. I am so elated that she has not required any revisions to her shunt. This month Marks nine months that her shunt has performed as it should. Another blessing. In short Kiya has had two brain surgeries, came home with an NG tube and eventually had a g-tube placement surgery. She is still not eating, but she is progressing all the time. We are now up to her tolerating almost two teaspoons of baby food. She will open her mouth without coaxing and the rate of her swallow is increasing.
Through all the hardship and pain I have found my invincible summer. Kiya is the joy of our lives. Her optimism astounds us everyday. She is patient, sweet and has a way of making me get lost in the moment with her. I cannot believe how much I needed her. I thank God for the opportunity to be her mother. Every fiber of her being is proof that God lives. There is no medical reason for her life. I love her with a depth that I cannot describe. I believe she was sent to teach our family and those around her. "We are as the armies of Helaman, we have been taught in our youth and we will be the Lords missionaries to bring the world his truth."