Party On

Kiya's birthday party was a great time. I think that I processed enough of my emotions concerning the events of her birth that I was able to focus on how great it is to have her in our lives. We ate a family dinner and then had birthday cake made by her dad (I found this very endearing). She ate a little ice cream and we had a blast.

Happy Birthday!

Happy one year old birthday my little baby bird! I cant believe you are one year old! Kiya this last year has been one of the happiest and saddest of my life. The miracles I have seen with you have greatly blessed my life and I have no doubt your Heavenly Father wants you here for a reason. I know you have very important things to do here in this world. Kiya, you have the ability to lift up a sad heart and bring light to darkness. Anyone who has been around you can feel the beautiful spirit you bring. I have to think that the way I feel around you is how it will feel to be with the Savior someday. Just a loving peace, innocence, and beauty you posess. I thank you for that. Through you, I have really been able to feel the love of our Heavenly Father. I know you wont remember your birthday, but I hope you can read this someday and realize how special you truly are. Daddy loves you! I look forward to a great second year with you. Happy Birthday!
Love Daddy

P.S. You are absolutely gorgeous!


Happy Birthday my sweet angel. I cannot believe this day is here. I am so glad that you fought to stay with us. Those who are lucky enough to know you are amazed by your spirit. I know I am in the presence of greatness when I hold you in my arms. You were born with nothing and have given us everything. Watching your courage has been the most amazing learning experience of my life. I would still change everything if I could, but you seem at peace. A simple look from you calms my anxious thoughts. I hope you know the depth of the love I have for you and that I realize the gift. I cannot believe after 100 years of no baby girls, Heavenly Father trusted me with amazing you. My eyes have been opened to a new world filled with amazing kids and parents who have overcome the odds and accept their trials with grace and fortitude. My perspective of whats important is a lot different now. I don't sweat the small stuff because the big stuff is so big. I am so grateful that you haven't had to have a shunt revision since your shunt was placed in January. I am so grateful that your g-tube is working, that you are getting enough nutrition and growing. I am grateful for both modern and unconventional medicine and to live in a country with the best medical access in the world. We have been through so much together in your short life. You have had to endure more than most people do in a lifetime and I sit at your feet in awe. I know you are an angel. You teach me things from a higher place. Even when you were 2 lbs I saw such an amazing life in your tiny body. I will never accept anything but greatness for you. Your daddy and I will do anything to ensure your life is happy. You are in the world, but you are not of the world.

I love you so much -Mommy

A video of amazing you

For The Record

I wanted to have a record of what Kiya is doing at age one since I cannot seem to remember anything and I don't want to forget how she is proving every doctor/statistic wrong.

Things I can do at 1
*I can hold my head up
*I can smile
*I can laugh
*I let mommy and daddy know I want to be held by kicking my legs and whining
*I can grab one foot at a time and hold it for a bit
*I can bear weight on my legs
*I can bear some weight on my arms while they are extended
*I still hate being on my tummy (who wouldn't with a g-tube)
*I can roll to my side and back to my back
*I can mimic mommy and daddy with the following gestures
-shake my head "no no"
-move my mouth up and down while mommy is yapping
-I show anticipatory excitement during peek a boo (a game which no longer scares me)
*I can say baba and dada (I am making mommy work for mama)
*I am kind of a ham and I know everyone adores me
*I can grab toys and bring them midline with both hands
*I can rock back and forth supported
*I like my corner chair and my foam chair
*I can eat 2 tsp of baby food if I am in the mood
( I don't make mommy feel bad when she eats a lot trying to show me how to do it)
*I can give enthusiastic hugs
*I have so many gifts and can make everyone around me smile and feel special!

Goals for this year
*sitting up
*willingness for tummy time
*core strengthening
*improving fine and gross motor skills
*muscle tone strengthening in all areas
*have a desire for toys and a desire to move
*get mommy to lighten up
*hire a housekeeper so mommy looks like a wonder woman

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."

I Believe In Magic

A couple of weeks ago I took Kiya to a chiropractor out of desperation. Her vomiting has been a problem since birth and I have been racking my brain for answers. I took her to a chiro in Bountiful that grandma squishy has had success with. Don't worry I wasn't having her bones adjusted or getting needles in her back. I explained Kiya's medical history to the doctor and he looked a little overwhelmed. Apparently most of his infant cases involve colic. At this point I was feeling a little colicky myself. For the exam the chiropractor had me hold Kiya while he tested her energy through my arm (i know it sounds super wonky). After he identified her weaknesses through me he got busy tapping away on her head and body. When I left the appointment I was not planning on ever seeing this guy again and wondered what I just paid for. Here is the unbelievable thing, Kiya has not thrown up since she went to this chiropractor. It has officially been 11 days. She has never gone that long without vomiting before. She also opens her mouth now for food instead of me trying to prod her to do it. This happened immediately after the appointment. Her swallowing has improved and I am able to get a little more volume in. The doctor said he worked on the nerve system that controls swallowing, bowel and balanced her energy. I think he is a magician. Matt and I could not be happier! This is such a huge blessing! I have since taken Kiya back to Dr. Olsen for laser acupuncture. I feel like I was guided to take a leap of faith and try such an unconventional approach to her vomiting issues. What an answer to prayers!

A day at the park