I don't even know where to begin. Exactly 1 week after we got the diagnosis of Trisomy 9, we lost him. And lost a huge piece of our heart and soul. We were not expecting it or prepared for it. Everything was supposed to be understood and determined at our appointment with the U of U on the 12th, but that appointment never came.
This post is going to be the most difficult post I've ever done and I'm sure will be all over the place, and I'm sure it will be long, so bear with me. (I started it in February and finally came back to finish it now in August)
Timeline:
Dec. 13th we had our 22 week ultrasound and were sent to the specialist
Dec. 21 we had our appointment with the perinatologist where we were told that our baby had Trisomy 18 and had an amniocentesis to confirm.
Dec. 27th our "FISH" (genetic screening) results came back normal
Jan. 3 The rest of the results came back and we found out it is Trisomy 9
Jan. 8 felt no movement
Jan. 9 I went in for a heart rate check and he had passed away at 26 weeks.
Jan. 10 He was delivered at 2:10am
Jan. 13 He was laid to rest
4 weeks. 4 weeks?? How can that much have happened to us in 4 weeks? Those weeks felt like a literal eternity. The constant pit in my stomach, heart ache, worry, pain, sadness, and stress of those 4 weeks could never be explained. I honestly feel like I aged 10 years during that time. Looking at the calendar and pictures feels like some alternate universe like "Did that really happen to us?" "Is that really me and our sweet little baby boy?" He was wanted more than anything and my heart literally aches for him and longs for him everyday. I don't understand why this had to happen to us and I don't think I ever will in this life. But I do know that Our Heavenly Father knows and I will have to rely on that until we can be reunited with Daxon again someday.
The week he was diagnosed with Trisomy 9 was really really hard. The unknowns were worse than ever. He had already survived way past the time that babies with full Trisomy 9 make it. Knowing that any end result scenario of this condition was bad, whether he survived and was put through brutal procedures...or didn't survive...was just awful. We carried on as positively as we could but I know that I was subconsiously starting to put a wall up and block myself from getting more attached to him. I would even catch myself getting upset at his movements... like it was just a cruel reminder that he was there, but that he wasn't going to be here. In fact, it wasn't until after he had passed that I realized that his movements were definitely getting weaker each day leading up to his passing. I for some reason, didn't allow myself to recognize that at the time. I think I was just buckling in to a numb state of mind for the long haul until he would be born (In my mind, we still had weeks ahead and big decisions to make). Words can't express the immense guilt I felt that came about a week after he was born. I felt so guilty, sad, and upset at myself that I didn't try to bond with him like I should have. I would talk to him and plead with him and Heavenly Father... but I didn't savor or even notice every movement like I wish I would have. He was gone and it was too late. I thought I had more time....
On Saturday, Jan 7 my parents called to see how we were doing and asked me if I was feeling him move? I was busy at the salon that day and hadn't taken note of any movement. It got me thinking when was the last time I felt him move??? Friday night I think it was. So that night I paid attention and there was nothing... I thought of going in to the hospital but decided I would just pay attention all day Sunday for movement.
I KNOW that we needed to be there that Sunday. It was fast and testimony meeting and it was incredible. The testimonies that were given were just for us and what we needed to hear. Many in our ward knew about our baby and I know they were literally talking to us. Our ward has been through many hard trials this year and those that had passed through them were the ones bearing testimony of the Savior's all encompassing atonement. It was the spiritual boost we desperately needed to get us through what was to come.
No movement all day. I was getting sick to my stomach and I think I knew. We borrowed the Fowlers doppler that night and tried to find the heartbeat. We were hearing noises but not sure if it was my heartbeat or the baby's. We decided I would call first thing Monday morning for a heart rate check.
Monday morning (1/9/17) Tom went to work and I took Jade to school then Lainey and I went to the doctor's office. A doctor's assistant first tried to find the heartbeat but couldn't. I knew, but was still in partial denial. She told me not to worry too much, that she doesn't do this often and she moved me into the ultrasound room to wait for Dr. Skinner. I text Tom that she couldn't find it and I'm waiting for the Dr. As I'm sitting there waiting for about 15 minutes Tom text me back that he was getting off the exit. Thank goodness. When Tom walked in that door we just hugged and cried. The doctor came in a few minutes later and we did the ultrasound and saw our baby with no heartbeat. Shock and deep sadness set in as we made plans and preparations to go to the hospital to deliver that afternoon. My mom and dad came up as fast as they could to be with the girls.
We didn't have a birth plan or even a birth place determined yet. We were told we would deliver at Primary Children's if they thought he was going to survive for a while after birth to deal with all his complications and necessary surgeries. And we were told we would deliver at Timpangos if they thought he would only live a few minutes/hours as they are more comfortable with keeping the baby comfortable and preparing the family etc. But now that he was gone, it didn't really matter. I was stressing because we didn't have a delivery plan either. We were supposed to meet with a lady from the Angel Watch program to plan out how we wanted to spend our brief time with him.. That apt was set for the 20th. So after talking to our Dr. we decided to deliver at Payson. And he told us they have an amazing volunteer bereavement coordinator and so we felt good about that and she was truly amazing.
We got to Labor and Delivery around 4pm and the nurses were great for the most part. They put the medicine inside me to start dilation and contractions and man it kicked in fast. I got an epidural (2 actually, because the first one didn't do anything but shock a nerve!). And while we were waiting there was a lot of silence, sadness, surrealness, and a whole lot of outpouring of love from family, friends, and complete strangers through my LuLaRoe group. We talked with the nurses and doctors a lot about what to expect and how fragile his body would be. I was very scared about everything. Scared how I would react, scared about what I would want to help do for him, scared what he would look like, scared that the time with him would pass too quickly.
We just watched silently while Amy got him cleaned up ever so gently and brought him to us. Then the tears came. His little body weighed 1lb .5 oz. He was just so sweet. So perfect. Looking at him from the outside, it made no sense that he wasn't compatible with life. Why does 1 little chromosome ruin everything? All my fears were washed away once I held him. I just loved him. The way no one except a mother can explain. Instant and deep.
We took turns holding him, napping, talking, crying, trying to cope and make decisions over the next 9 hours. I'm so grateful we took the time in the hospital room that we did. Those precious hours with his body is something we will never get back.
By 9:00am or so, his body was not looking good. We decided it was best to not have the girls come see him. It was so sad to see him really leave us. He was born red and "plump" and over time he began to shrivel and go dark. How does one decide when it's time to let go? I didn't think I could. And then all of a sudden I looked down at him and the words "You're ready to go" just came out of my mouth without thinking. I started to cry and realized it was time and that it was him or the Spirit or something that let me know it was. We called the mortician and he came about an hour later. We wrapped him in a blanket from Grandma and said our final goodbyes.
Tom, both Grandpa's, and Great- Grandpa Probst each spoke for a few minutes and it was beautiful. I'm so grateful for these men in my life.
Daxon we love you so much and are so grateful to have you in our family.
In the time that has passed I have been able to look back and think about the tender mercies from Heavenly Father that took place during this whole thing and I want to list them so that I can remember:
*The timing was inspired. I was around the Holidays with family near and around when Tom and I could spend the most time together. And where I focus was more turned to the Savior.
*We never had to make the tough decision as to whether to deliver early to possibly have a chance at seeing him alive (and essentially ending his life early)
* Like I mentioned earlier, I felt a lot of guilt around 2 weeks after he passed. I felt horrible for not savoring every second I had with him. But at the temple a few weeks after, it was confirmed to me that Daxon knows that I love him. That I always have and that I always will. I needed to hear/know that.
*This trial does not effect our eternal family. My eternal family is still intact. There are trials much worse than death as far as eternity is concerned. I am grateful for my trial in that regard.
*This is a little tender mercy.. but another simple way I know God cared about me. My salon schedule is always very busy and so while in the hospital I began to stress about it. Well I looked at my schedule and I somehow had openings the following week and was able to rearrange everything without setting me weeks behind.
*All the sweet and thoughtful gifts, cards, meals, visits, acts of service were so amazing.
*While on a walk with Lainey about 2 weeks after we buried him, I was sobbing. Sunglasses on, ugly crying. I hadn't said anything to Lainey about why. After I got the tears out I felt relief and a few minutes later Lainey said, "Bye Baby Brother! See ya next time!!" Kid's are so in tune. I know he was with me.
*I think it was a major tender mercy to have a head's up. We had a little time to process what was to come. My heart can't even fathom the pain of going through this when expecting a healthy baby.
*The delivery went as well as possible. With the amniotic sac intact, he was delivered in good shape.
*Amy. She was amazing. She made us feel comfortable. She humanized Daxon where I felt the Dr. and nurses didn't. She talked to him and treated him like the beautiful baby he is. She was so giving of her time and efforts. Even though it was 2am - 6am. She helped us memorialized him with beautiful pictures, hand and feet molds and keepsakes. I will forever love that woman and she is going straight to heaven for what she does for families going through this.
*The torturous feeling of doom looming over us has lifted. All the unknowns are known. He is safe in heaven and we will continue to be ok. We are happy and grateful for all that we have and for all the lessons that Daxon has taught us.
I read this analogy on a blog the other day and it is perfect for how I feel and I'm sure will continue to feel the rest of my life. I'm sure the "stone" will gradually keep getting smaller, but it will always be there.
"The best way I can describe grieving over a child as the years go by is to say it’s similar to carrying a stone in your pocket.
When you walk, the stone brushes against your skin. You feel it. You always feel it. But depending on the way you stand or the way your body moves, the smooth edges might barely graze your body.
Sometimes you lean the wrong way or you turn too quickly and a sharp edge pokes you. Your eyes water and you rub your wound but you have to keep going because not everyone knows about your stone or if they do, they don’t realize it can still bring this much pain.
There are days you are simply happy now, smiling comes easy and you laugh without thinking. You slap your leg during that laughter and you feel your stone and aren’t sure whether you should be laughing still. The stone still hurts.
Once in a while you can’t take your hand off that stone. You run it over your fingers and roll it in your palm and are so preoccupied by it’s weight, you forget things like your car keys and home address. You try to leave it alone but you just can’t. You want to take a nap but it’s been so many years since you’ve called in “sad” you’re not sure anyone would understand anymore or if they ever did.
But most days you can take your hand in and out of your pocket, feel your stone and even smile at its unwavering presence. You’ve accepted this stone as your own, crossing your hands over it, saying “mine” as children do.
You rest more peacefully than you once did, you’ve learned to move forward the best you can. Some days you want to show the world what a beautiful memory you’re holding. But most days you twirl it through your fingers, smile and look to the sky. You squeeze your hands together and hope you are living in a way that honors the missing piece you carry, until your arms are full again."
