Trisomy 18. Two words I wish were not in my vocabulary.
This blog is dedicated to our sweet baby boy, Kellen Truitt who was diagnosed with Trisomy 18 at 28 weeks. He is currently 36 weeks and 5 days old. Everyday I feel him move and kick inside of me... Sometimes he gets pretty violent in there! :) Although we are unsure how long God will allow him to be with us we are making the most of it and taking it one day at a time.
If you are familiar with this condition 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 http://www.trisomy18.org/site/PageServer?pagename=whatisT18_whatis
Let me start at the 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 :)
Puppy Maya
Thor
Duke
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!
Everything was going great until about 10-11weeks when I began to get terrible, awful morning sickness. This morning sickness stuck around all day and still hasn't gone away. The doctor eventually prescribed me medication (that is completely safe) to ease the nausea and vomiting so I could eat. Some days are still better than others.
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%. 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 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 (and still are praying!) for complete 100% healing, we didn't just pray for him to live, we don't want him to suffer---we want complete healing! What a testimony our little baby could be for the Lord! 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? He can!
Now, I don't want you to think I have my head in the sand and more often than not I feel down and sad for the diagnosis of my sweet boy. I know what that an amnio is a diagnostic test and not just a screening. I know that the doctor's say his condition won't change but I will still hold on to my thread of hope. God holds that thread and I just can't let go until he tells me to and I see how Kellen's life unfolds. Kellen's life has a purpose- He is still a miracle! We will prepare for the worst but WE WILL keep praying for healing until the very end!
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 are 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.
Christina, if you ever read this just know that I appreciate you so much and if you ever wonder if you are making a difference--you are!
On Thanksgiving day we went duck hunting in the morning. Anyone who knows Wes, knows that he is AVID duck/geese 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 won't soon 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.
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I know it is hard to tell but it looks like he is smiling in this ultrasound |
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 want to remember and cherish every moment. To be honest I don't know if I would have followed through on the photos but Wes's sister and some of our other family members (I'm not sure who they are, but Thank You!) gave us a session with a wonderful photographer. I was hesitant at first and was really 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 actually a good time and they turned out better than I ever could have imagined! These are photos I will cherish forever.
Cynthi also offered to take photos of Kellen when he is born--no matter if he has passed or stays with us. I was so touched by this. She had been in a program called Now I lay me Down to Sleep. Great organization.
I also started reading a devotional called "One thousand gifts" given to me by RaeLyn (Wes's sister). Thank you by the way! It has been good devotional for me during this time.
There are other books I was given by our genetic counselor that have 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.
Christmas came and went and it was actually a nice time. All the festivities gave us plenty of memory making to do.
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
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.
I also had the pleasure of getting to know another lady from my town whose baby had been given a fatal diagnosis... Again, I don't want to share too much, but we laughed and cried together and it was good. It felt good 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 better and I hope we can get together again in the near future :)
Telling family and friends has been very hard for us. It is hard to talk about and I understand not knowing what to say. So if you are my friend and you are reading about this for the first time, I am sorry for not telling you sooner. It is hard to talk about. My emotions are still so raw. Please know that it is okay to talk about Kellen--yes, I may get teary eyed but I still want to talk about him. He is still with us and very much alive!
As I get closer to my due date it gets so bittersweet. I am ready to be done being pregnant and I so want to meet Kellen but I am conflicted because I know it means our time together may be drawing to a close. This is the hardest road God has ever asked me to walk. Thank You Wes for walking this road with me. You are an amazing husband. I know this is just the beginning of painful, wonderful journey but I know with God's help we can make it together.
We have had so much support from family, friends, church family and we truly appreciate all your thoughts and prayers from the bottom of our hearts. Also, I just want to say a special Thank You to my mom and my sister Darcie for being there for me. I don't know what I would do without you two!
Our next appointment with Dr. Z is Tuesday and next appointment with Dr. B is Wednesday so I will try to update you all on Kellen's stats at that time :)
I needed to let all this out and I hope by writing this blog I can honor and share Kellen's life no matter how long or how short. He is truly loved.
