Kellen's Story

Trisomy 18... Two words I wish were not in my vocabulary.

Our sweet baby boy, Kellen Truitt, was diagnosed with Trisomy 18 at 28 weeks and although he lived just 3 short days we were given a legacy of love to share for the rest of lives.

If you are familiar with Trisomy 18 you know how heartbreaking this diagnosis is. For those of you who do not know, don't feel bad...I had no idea about this condition until I learned of Kellen's diagnosis. 

Here is a brief overview of the condition:

"Trisomy 18, also known as Edwards syndrome, is a condition which is caused by a error in cell division, known as meiotic disjunction.  Trisomy 18 occurs in about 1 out of every 2500 pregnancies in the United States, about 1 in 6000 live births.  The numbers of total births increase significantly when stillbirths are factored in that occur in the 2nd and 3rd trimesters of pregnancy. 

Unlike Down syndrome, which also is caused by a chromosomal defect, the developmental issues caused by Trisomy 18 are associated with medical complications that are more potentially life-threatening in the early months and years of life. 50% of babies who are carried to term will be stillborn, with baby boys having higher stillbirth rate than baby girls.

At birth, intensive care admissions in Neonatal units are most common for infants with Trisomy 18. Again, baby boys will experience higher mortality rates in this neonatal period than baby girls, although those with higher birth weights do better across all categories.

Some children will be able to be discharged from the hospital with home nursing support for their families. Less than 10 percent survive to their first birthdays."

This information was obtained from here

Let me start at the very beginning...

On July 18, 2010 I married my very best friend, Weston, and we began our life together. 

We spent the next few years with life's normal ups and downs all the while falling more in love with each other.

Our dogs :)

Thor

Duke

Maya

In July of 2013 we bought our first house and began remodeling... Let me just tell ya, if you want to test your marriage just try remodeling your home! Ha! But through it we are coming out stronger than ever.

At the end of May 2014 I found out I was pregnant. We had always known we wanted to have kids but had intentionally decided to wait so we could enjoy each other and strengthen our relationship. I was ecstatic and so was Wes! Our families were so excited about the news as well!

My pregnancy was uneventful up until about 10-11 weeks. It was at that time that I began to get terrible, awful morning sickness. This morning sickness stuck around all day and continued through my entire pregnancy. 

At 22 weeks we had our official ultrasound. You know, the one where they do all the measurements and tell you for sure whether your baby is a girl or a boy. We were beyond excited! We had been told possibly boy at an appointment with our OB during what they call a "scrapbook ultrasound". But they weren't 100% sure. So we had been waiting to tell family and friends until we knew for sure. Well...guess what? 

It's a...

But you already knew that! ;)

A few days later my OB (Dr. Z) called and told me she was a little concerned because the baby was measuring small and she had also noted choroid plexus cysts on his brain. She referred me to a specialist (Dr. B) at Maternal Fetal Medicine where they would do a more in depth ultrasound to determine if there were any other issues or cause for concern. Of course this had me worried! I immediately researched everything I could about the cysts and honestly when I came across Trisomy 13 and 18 I thought no... it's not those ones... not my baby... it's too rare. I found out that the cysts are fairly common and most go away by third trimester. I decided to leave it in the Lord's hands. I gave it to him because I knew it was out of my control. And I was at peace. When we went to see the specialist she didn't see any reason to be concerned and just asked us to come back for another ultrasound in 1 month to check progress. She wasn't concerned about his size. Thank you Jesus!

One month later we returned to Dr. B's office, this time the ultrasound took longer and something seemed to be wrong with his heart. At this appointment we found out that he has a hole in his heart (VSD) and that I had developed polyhydrominos- a condition where there is too much amniotic fluid. At this point Dr. B recommended that we do an amniocentesis so we have a clear picture of what kind of care he will need when he is born. We needed to know what kind of doctors to have ready if he needed surgery right away. This made sense to us so we made an appointment for the following week to have the procedure done. Up until this point we had declined all screening tests because we knew that knowing our child had a disability would not change our minds in carrying the baby to term. And honestly we thought we would never be in this position. It takes about two weeks to get the results from the amniocentesis and believe me, this was a very rough two weeks. During this time we visited a cardiologist who verified the VSD but couldn't quite see everything he wanted. The only thing we knew for sure was that Kellen would need surgery at about 3 mos. old to repair his heart.

While waiting on the amnio results we prayed. A lot. And I actually had peace.

On November 4th I received a call from the genetic counselor at Dr. B's office with the results of the amnio. She told me our baby had Trisomy 18 and although I tried my hardest not to break down because I was on my lunch break at work. Well, I couldn't. I cried. She sent me an e-mail with links to websites that explain the condition and shares other families stories. I ended up taking the rest of the day of work off and wanted so badly to tell Wes but knew I needed to let him finish up his day at work before dropping this bombshell on him. When he got home that night I told him and showed him some of the websites. 

We were both so shattered. 

We just stood there hugging and crying. We prayed, we asked God "why?" With this condition there is just so many unknowns---will he make it to birth? (that was my biggest question) what if he passes away before I meet him? What will he look like? How long will he live? Will he get to come home? Life just seems so unfair and we prayed to God asking "why?"

We prayed for strength and peace. We prayed for healing. We prayed for complete 100% healing, we didn't just pray for him to live, we wanted complete healing! I thought 'God created the earth and healed many broken and hurting and even dead people in the Bible, why couldn't He rewrite chromosomes and heal Kellen's body?' We held onto the hope that God is in control.

About a week after receiving this news I got a call from a lady named Christina who works for the hospital. Her job is to help parents who receive diagnoses like this. She is a brave woman for doing what she does. She has helped us tremendously! Especially with the things we never expected to be thinking about... I mean, instead of decorating a nursery we were now deciding on burial or cremation... it's really tough. She helped us with the "now what?" and "what if?" questions and never made me feel awkward or unheard.

On Thanksgiving day we went duck hunting in the morning. Anyone who knows Wes, knows that he is AVID duck/goose hunter! It has been a tradition for Wes and his dad to go hunting on Thanksgiving and this was something Wes had been eager to do with our Kellen when he was older. We decided Kellen should go hunting with his dad and grandpa--so we all loaded up and went that morning. It is a memory we will never forget.

My Grandma Opal was also back in town from Vancouver, WA for Thanksgiving so Kellen got to meet someone so special to me. She even got to feel him kick!

Aunt Kendra, Kellen, and myself on our Thanksgiving Day hunt :)

Grandpa Dan, Thor, and Weston

Weston and Thor

In early December we went to visit Dr. B again to see changes... that was hard. She told us that his left and right brain didn't look like they were connected and also his cerebellum was small. He is also measuring small for his age, which is common for babies with T18. At this appointment he weighed 3lbs 4oz. He was 32 weeks. All other problems that they were concerned about in the beginning also hadn't changed.

It was around this time that we had maternity photos done. When I first got pregnant I told Wes I didn't think I wanted to do any maternity photos and we were both fine with that. But things changed when we found out how brief our time could be. I wanted to remember and cherish every moment. Our wonderful family members gave us a session with a photographer. I was hesitant at first and extremely nervous when the day came because it was so bittersweet. It was actually really great. Our photographer, Cynthi, made us feel comfortable and somewhat normal. It was surprisingly a good time and they turned out better than I ever could have imagined! These are photos I will cherish forever.

Our genetic counselor gave us several books that helped me through this time, my favorite being "A gift of time". If you are currently going through a similar situation (and I pray you are not) I highly recommend this book. I'll warn you now though, I threw this book on the floor after I read the first few pages. It is difficult to get through but helpful in the long run.

Right before Christmas we met with a couple whose baby also had T18. I don't want to share too much but it was both good and hard for us to hear their story. It was difficult and I put off meeting with them for about a month but I'm so, so glad we finally did. 

If you guys ever read this, thank you for sharing the life of your daughter with us. It touched us deeply to hear your story.

Christmas finally came and it was a nice time. All the festivities gave us plenty of memory making to do and I made a point to start a journal with letters to Kellen. In my journal I told him about all the fun things we did and how much his dad and I loved and wanted him.

Frosting Christmas cookies with Aunt Jackie and Aunt Darcie, and cousin Payton :)

Every year we attend the Christmas program so Kellen got to enjoy all the beautiful songs and the orchestra.

Grandpa Dan, Aunt RaeLyn, Uncle Josh, and Grandma Laura were all apart of this wonderful program.

 Christmas Morning

I also had the pleasure of getting to know another lady in my town whose baby had been given a fatal diagnosis... I don't want to share too much, but we laughed and cried together and it was good. It felt nice not to have to explain myself and just know she understands. It is rare to find someone who can share a pain like this. It is so conflicting to be told to grieve your unborn child. I am thankful that we got to know each other and we still keep in contact. There is something powerful in knowing someone out there truly understands without saying a word, especially on the anniversaries.

Telling family and friends was very hard for us. It was difficult to talk about so one day I just started writing and this blog was the result. It turned out to be a great way of telling friends and family about Kellen's condition. It was emotionally exhausting to try to explain our situation in person and it was equally exhausting to pretend things were fine. I remember Weston and I were at the grocery store around Christmastime and we ran into some friends from high school. They were congratulating us (as it was obvious I was pregnant) and asking if we had the nursery ready and just the normal things people ask when you're expecting. Both Wes and I just went along with it because neither of us knew how to say what we were really thinking which was 'well, there is not much chance our baby will live once he is born... so no, the nursery is not ready...'. It was an extremely difficult time. For my co-workers I simply wrote an e-mail. I worked in a small office and knew that they would know something was wrong. Writing an e-mail helped me organize my thoughts to let them know about the situation without over sharing. 

At our January appointment Kellen weighed 4 lbs 13 oz. Because I had excess amniotic fluid Dr. B said she would rather not let me go past 39 weeks and scheduled an induction for Monday, January 26. It was such a bittersweet time. I was so ready to be done with my pregnancy but that meant my time with Kellen was most likely drawing to a close. How could I be excited for that?
We were able to have a 3D ultrasound done at this appointment, which was amazing! We got a sneak peak of our handsome little guy!

Sunday night before the induction I could hardly sleep knowing that we would be meeting Kellen the next day. I would finally see the tiny hands and feet that had been kicking inside of me. Monday morning I laid in bed for quite a while feeling my sweet boy move and kick. It was our morning routine. I finally got up and showered. I remember looking down at my belly knowing this was the last day and the last shower Kellen would spend inside of me. I cried most of the morning while getting ready. Wes and I prayed for Kellen to live and be healed. And we prayed for God’s will - which is sometimes a hard thing to pray for...

When we arrived at the hospital we got shown to the delivery room and I changed into a gown. Nicole was our nurse and she explained what was going to happen. I got hooked up to the monitors and Kellen’s heart rate was 160 at that time. At about 9am Kellen’s heart rate dipped down to 80. This scared us quite a bit. Dr. Z said she did not feel he would survive labor and recommended a C-section if we wanted going to see Kellen alive. We had originally planned to do a C-section if this circumstance arose but I just didn't think it would be so soon. Wes and I felt very indecisive. We prayed and felt so lost. I was scared. I was scared for my baby and I was scared for surgery. 

In the end we chose C-section and looking back I know we made the right choice. 

Things happened pretty quickly after that. Nicole got me prepped for surgery and wheeled me down to the OR. For the first 10-15 minutes Wes couldn't be with me and I was very scared. They laid me down on the table and I could feel myself starting to numb. At this point it seemed like there were quite a few people in the room. I remember looking up at the ceiling wondering if I could do this. I must have looked like a wreck. I was silently crying and praying and Nicole and the anesthesiologist held my hand. I was so grateful for them. Soon Wes came in and held my hand. I was SO glad to have him back with me.  

After a while I remember someone saying to Wes, 'look over [the curtain] if you want to see your son being born' and he did. I wondered what he was he seeing. He looked back down at me and said 'he has a lot of hair.' I just smiled. Then he said 'he has big feet.' All of the sudden Kellen was placed on my chest and I saw his sweet little face for the first time. I held his head and stroked his cheek. I examined his perfect little hands.
I was so overwhelmed with love.

He was perfect! After that I didn't care about the rest of the surgery and pretty soon they said they were done.

I didn't realize I could love someone so much so fast. 

They took Kellen over to the warmer and weighed him and clean him up a bit.

I was taken to the recovery room and they placed Kellen back on my chest. I was so proud. I just held him and looked at him. I could barely take my eyes off of him.

Our precious Kellen was born on 01/26/2015 at 2:26pm. He weighed 4lbs 9oz and was 17in long. Kellen was a true fighter with real strength. I was told that his Apgar score was 1 when he was born, then 2, then 3, then up to a 6. What a miracle!

After three amazing days with our perfect son, Kellen received the 'ultimate healing' and went home to be with Jesus. During our time together he got to meet his whole family and we cherished every moment- every soft cry, every cuddle and every kiss.
Holding my son while he passed into heaven was the worst pain imaginable. The helplessness of the situation left me useless and broken. I felt like my entire world had ended. Even though I knew Kellen's time would most likely be short on earth, nothing could have prepared me for that sense of loss. My chest was empty- I had nothing left.

On February 6th we had a celebration of life for Kellen. It was a beautiful service with a graveside balloon release.

Later, someone told me there were over 180 people at the celebration. Wow! I can't help but be joyful when I think of how many people cared and loved him! I was blessed with support from many loving and caring people and I don't think I could have made it through that first month without them. Losing my son tested my faith in God. I wondered why God didn't heal my son. The questioning stretched me thin and wore me down. But even through my struggling and anger God has walked with me every step of the way. I do not have all the answers and I fail daily. I just keep putting one foot in front of the other and God keeps giving me strength to keep going - even when I feel the world is crashing down on me.
I am amazed and proud at how many lives Kellen touched. Kellen truly made his mark on this world and I am so humbled to be his mother.

My intention in writing this blog is to let you know you are not alone in your grief. I hope to honor my precious son's memory by sharing my life and heart with you on my rocky road to healing and wholeness.

Love and Blessings,

Diana