Daxon Tom Styler

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.

Around 2:00am I was complete and ready to deliver.  The Dr. told me not to push hard because he was small and fragile.  Thankfully the entire amniotic sac was delivered intact so his little body was perfect.  The doctor wisked him away and cut him out of the sac and did a quick exam and simultaneously our earthly angel Amy came in.  She was the bereavement coordinator and she was heaven sent.  The room was completely silent.  I describe it as horrifically spiritual.  Such heartbreak and sadness but I know he was near and the reverence in that room was something special.
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.

The next few days were so hard.  Physically and emotionally.  Shear disbelief most days.  We had a lot of arrangements to make as well.  We had a beautiful, reverent and perfect graveside service for him.
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.

My little Jade.  She was/is such a sweet little girl.  She was so aware of our sadness.  And so sweet to cuddle me when I would cry.  She was glued to me during the graveside.  She always remembers Daxon in her prayers and continues to amaze me and make me proud.

The love that has been shown to us by family, friends, ward members and mere acquaintances has truly been amazing and humbling.  We have learned so much about empathy, compassion, faith, Love, eternity, examples, peace and so much more than we could have ever imagined or learned any other way.  I have grown closer to my Savior than I ever have before.  I have relied on Him and NEEDED Him, and He did not leave me comfortless.  There has been countless ways He has shown His love for us and our family.  We know where Daxon is and will do whatever it takes to remain worthy to be reunited with him. I know I will one day have the opportunity to raise my Dax.
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."

Baby Boy

Oh baby Boy.  We love you so so much.  Our hearts ache for you.

I noticed around 16 weeks that I didn't feel like I was growing or looking as pregnant as I should but would brush it off and think, "It's probably because its a boy".  At our 16 week gender check, he was measuring about 5 days small, which can be totally normal.  

At our 22 week ultrasound, the sonographer let us know there were a few things she was concerned about and wanted looked at by a perinatologist...but not to worry too much.  She let us know he was measuring about 19weeks and 4 days (about 2 weeks small),  had some fluid on the back of his brain, and that he had a 2-vessel umbilical cord (vs. 3).  All 3 things could mean nothing... but could mean something.

On Dec. 21 we had our appointment at Timpanogas hospital and while we were signing all the paperwork to get signed in, I noticed on our sheet a whole lot of stuff we weren't aware of.."cerebral defects" etc... and I was wondering if that was really our sheet??  but then thought, "Maybe that is what they are going to be looking for".

During the ultrasound, the sonographer let us know all the positive things she noticed... "this looks great", "that looks great", "the spine looks great"..."I see both bones in both arms and legs" etc... she did spend a lot of time looking at his heart... and let us know she was having a hard time seeing the other kidney... but in no way were we prepared for when Dr. Ball came in.  It was like a sledgehammer.  He asked us if we were told about the organ defects and we said No.  Then he sat down and told us that our baby has several indicators of Trisomy 18 (meaning as the baby was being formed, a 3rd copy of the 18th chromosome was made throughout all or most of his cells, causing severe birth defects).  We had no idea what that meant and he explained how serious it was and that our baby's chance of survival is very very small and that he was sorry.  We sat there shocked.  And then the tears came.  Tom said he hated him at first with every fiber of his being for how blunt and straightforward he was with us!  And it was before he, himself had even looked at our baby!!  It was horrible.  But now, we realize that there really is no good way to tell people that sort of news.  And now we actually appreciate his straightforward-ness and he has been great at answering our questions and returning our texts quickly from his personal cell # he gave us.

He then did our ultrasound and showed us all the indicators.  More than twice the amount of fluid on the brain than should be there, dandy walker malformation (cerrebellum), only one kidney, cysts on the liver, wide set brain plexus, rocker bottom feet, one hand looking clenched with overlapping fingers, and a heart defect (outract valve).  All this confirming his thoughts of Trisomy 18.  He told us that we could do a blood test as a step one to confirm but would probably still want to consider doing an amniocentisis that would give us a broader look at everything and confirm.  We were in such a state of shock that I'm sure I don't remember half of what he said.  We knew we wanted to know for sure so we did the amniocentesis and I watched on the ultrasound the long needle going in just a few inches above the baby to draw out the amniotic fluid.  It was the longest 15-20 seconds of my life.
He let us know we should have results within a few days...hopefully before Christmas.
We left and Tom went back to work (which is so crazy to me, but I think at the time we were in such shock and it was so surreal that we just went about what we were planning) and I went to pick up the girls from Jenni's.  It was crazy though how many people reached out to us that day without knowing anything.... I got several texts from friends and ward members asking how the appointment went or that they were just thinking of me and wondering how I was.... so it was so strange that within the first day, our entire close circle knew what we knew.  Now I see that as such a blessing... we had that many more prayers for us on our behalf.  It was such an unreal, strange and hard day, it was like we had already lost him... but no, he is still here!  And for that I am grateful!!  and yes, I cried a whole lot that day but I don't think it really sunk in until the next day.  The next day was horrible, I could hardly function.  And the night before I subconsciously thought "well I guess I don't need my zofran anymore" and so I didn't take it and was super sick and puking the next morning....another cruel reminder that I am still very much pregnant and of what is to come is still coming but we don't know when.  I could ramble on and on about all the emotions we went through and are going through, but I won't.  There is no way to explain it.  It is a deep sorrow that I/ we've never felt before.

By day 3 we were feeling so much inexplicable peace and love from the Savior that we were doing ok.  We still hadn't heard anything by Christmas Eve but were somehow still able to have an amazing Christmas weekend with our families (that I will post about later).
That is another blessing we have realized.... when we first found out the news that anything was wrong... I was thinking "Really?? And right before Christmas??"  But now I see that that was the best timing.  I had 2 weeks off the salon, and could cut way back on LuLaRoe, Tom had lots of time off and we got to be together to cope and be around lots of family and friends which really helped boost our spirits.

The Wed after Christmas, I had an appointment with my regular OB.  He had all the results from the perinatologist ultrasound and fully agreed with the specialist and basically only brought me in to tell me that Tom and I need to start making a decision of what is most important to us... 1)having the baby born alive as the number 1 priority and inducing early for that, because with every passing day the chance of him passing and having a stillborn is greater... and that would probably result in a C-section. or 2) letting nature take it's course and more likely have a stillborn, but will protect my uterus.  Talk about a pill to swallow.  How do you even make a decision like that!?
We cried and talked about it for a long time that night but never settled on either scenario.  The only gut feeling I have right now is not to rush anything.

The next day, we got back the results from one of the 2 tests run on the amniotic fluid.  It is called the FISH test which tests for genetic problems and can also detect Trisomy 13, 18, and 21.... and it came back normal.  We (and the doctors) were now more confused than ever! That brought on more emotions and questions... "then what is causing these abnormalities??" "Is he going to be ok then if things can be fixed?" "is he going to live a life severely disabled?" "Maybe some of the things the doctor was seeing weren't really there?...maybe he was so convinced of what he was going to see that he saw what he wanted to see?"  "Maybe he will be a miracle baby!"  We had new hope but at the same time didn't know what to think at all!!
They told us that we need to just wait for the rest of the results to come in and that it should hopefully tell us more.

Again, we were blessed throughout all this to be able to be doing ok.  Some days were ok and we were able to laugh and have fun!  And some days were just downright hard. We went to Luke's birthday party and We were able to have a fun New Year's Eve party with some friends and it was great to be able to have that long night of girl talk and games.  And we were also able to have a fun family day on Monday and took the girls to the museum of Natural Curiousity and to lunch (I'll also post about that later)

When we got home Monday afternoon, my OB called and told me he got the rest of the results in and that our baby has Trisomy 9.  Again, another blow.  Another unknown.  He told me that he honestly didn't know much about it because it is so rare but that his understanding is that it is even worse than Trisomy 18 with essentially the same outcomes.  And so it comes back to that same question of what we want our priority to be in our situation.  So of course, when I get off the phone I start googling like crazy and there really is hardly any info on it!  It is only about 2% of all Trisomy! But the info I did find is terrifying.  And I didn't think to ask the Dr. while I had him on the phone if it was full, or mosaic, or partial... all have varying degrees of severity.  Full is fatal, and partial or mosaic would mean a life of surgery and procedure after procedure to try to fix all of his problems.  Tom was home that day for Observed New Years (THANK GOODNESS) because that was honestly probably the hardest day for both of us.  We thought it would be good to finally have an answer but it was just worse.  We were pretty cried and didn't even know what to say to eachother.... there was nothing to talk about.. just coping and feeling more scared than ever.

Tuesday, Dr. Ball's nurse called to let us know that we would be sent up to the genetic counselors at the U of U for an ultrasound and to speak with genetic counselors to go over everything with us.  I asked her if she knew if our baby had full Trisomy 9 or not and she read me the report that said that they normally like to test 15 chromosomes but for some reason they were only able to test 12 and all 12 showed trisomy 9. And that the chances of mosaic are small.  "So it looks like full".  She also said she was going to send my info to the Angel Watch organization that is a great resource to help parents with fatal diagnosis babies.
The U of U called today and we have an appointment set for next Wed.  So another torturous week of waiting.  I still think I'm in partial denial, so I am ready to see these specialists and hopefully get some more concrete answers and really start to prepare and understand what is to come.

So from what we know right now, our baby will be returning back home to our Heavenly Father very soon after he is born if he makes it to birth.  We are beyond heartbroken but are so eternally grateful to be his parents and feel blessed that such a special spirit chose to be in our family.   The eternal perspective doesn't make it all better but it certainly makes the unbearable bearable.  The eternal perspective, relying on the Lord, Faith, the Atonement etc. has all been "yes that's good and nice" up until this point...but now, we are clinging to it!  It is all that matters!  It is the only thing that is going to get us through this trial and I'm sure the many more that will come!

We have been SO BLESSED by the outpouring of love and support by family and friends.  It has seriously blown us away.  It has seriously made us want to be better people!  Now, when someone is going through a hard time, we want to be the people that DO SOMETHING!!  We've had people coming to check on us, sending flowers, bringing us dinners, calling, texting, and most importantly PRAYING for us.  I have always heard people say that they felt everyones prayers for them but never really knew what that meant.  But now I can truly say we have and do feel them and can literally feel them lifting our burden.  It has been an incredible testimony builder to me.  And somehow through this, it has increased our faith and I have never in my life felt more love from the Savior than I do now.  We don't know why and still don't know what is going to happen, but we do know that we will be OK and that there is a reason for all of this.  So we are just doing our best to carry on in Faith and live life a day at a time.