Here is our story about our beautiful angel, Eden Michelle. We were in the process of moving from Clive, Iowa to Frisco, Texas. We had almost everything packed and with a recent miscarriage we had decided to give away 95% of our baby furniture and other items. As I was packing up the last of a few “junk” drawers I happen to see a box containing an unused pregnancy test and it got me thinking…wow, I’ve been so busy with this move I had hardly noticed that my cycle was late. More as a joke to myself and not wanting to pack the test in the box, I took the test. To my surprise it was positive almost immediately! I was very excited, but also extremely nervous as I had progesterone problems that the Drs were trying to figure out. We were literally moving the next morning so I called my OB/GYN and asked their opinion continue with the supplements and find a Dr in Frisco as soon as possible.
After tons of research, I decided on a Dr that specialized in fertility and high risk pregnancies near the house that we were building. After tons of tests and blood work, we were told that the pregnancy was looking great! We were starting to get hopeful, but decided to wait to tell our girls or anyone else besides close family. As time went by, the Dr decided to have me go for bloodwork due to the previous miscarriage. I didn’t realize that with this Dr they automatically test for Down’s syndrome, chromosome abnormalities, etc. I had always opted out of it with my first three pregnancies. I was completely unaware of how much our lives were about to change.
The day was just like almost any other, I worked, picked up the kids from school, we were on our way to the grocery store to have a girl’s night in because Craig was in CA for work. My phone rang and a lady let me know that I needed to make another appointment; my initial blood work showed that there was a very high chance that our baby had Trisomy 18. I had absolutely no idea what that was or what it would mean for our baby. I didn’t want to scare our daughters, so I finished getting groceries and took them home to watch a movie. I immediately called Craig and unfortunately he was in a meeting, but said that he would call later and we could do some research then. My mind was full of thoughts like “will our baby need surgery”, “will the baby need extra care” never did it cross my mind “will our baby not survive?” We did not know how serious this was.
As I started my research, the first words that that jumped out were that Trisomy 18 “has no treatment and is usually fatal before birth or within the first year of life.” Those are the HARDEST words I’ve ever read.
As I’m sure it is with any other family that goes through this same situation, the next few weeks/months are a complete blur of emotions, reality kicking in on the seriousness of the situation, tons of Dr appointments, blood work, multiple ultrasounds, amniocentesis, waiting for results…waiting for answers…waiting for someone to tell us how to make the decisions that needed to be made. Praying…LOTS AND LOTS OF PRAYING! To make it even more difficult, we were 100s of miles away from family and any friends. We had just moved and didn’t really know anyone at all. No one that we could share our pain with. I hardly left the house besides taking the girls to school and Dr. appointments.
After lots of testing, we had a little bit of good news in this very sad and difficult situation. During an extensive ultrasound, they told us that our baby girl only had one “marker” of a typical T18 baby and they usually have 5-8 markers. She had the clenched fists, but did not show brain tumors, heart defects, rocker bottom feet, kidney issues, etc. The Doctors were cautiously optimistic that she would be one of the few that survived. With the percentages so low of babies that make it to birth, we were scared to be excited, but as most parents do we were hanging on to any hope we could.
Then one weekend I started having some complications and the Dr had us check in to the hospital early the next morning. One of the nurses helped me through some of it (as much as anyone could) as she had lost her son in a very similar way 4 years prior to Trisomy 18 and she specifically asked to have us on her service so that she could help us. After 15 hours of being induced and labor, sadness and feeling completely numb inside, Eden Michelle was born into heaven at 10:07 pm on October 7, 2013. The numbers 10/07 etched into my memory forever. What the ultrasound is not able to show is that babies with T18 develop slower in many ways and one is the abdominal wall. Her intestines herniated out (gastroschisis) and she was unable to survive that. Craig and I got about an hour to hold her before they took her and a part of our hearts away. We will never get that back, but I’m starting to think of those parts of our heart in heaven so that Eden has a part of us with her until we can all be together again.
The next few weeks continue to be a blur of meetings with the funeral parlor for her cremation, Dr appointments, and her memorial service. We had planned on letting off lanterns for her service by the lake, but the day was extremely windy so we had to switch to balloons. We held on to the lanterns and let those off for her on the 1 year and 2 year angel anniversaries. Through all of this our faith has been tested, but we know that although we cannot possibly understand why our beautiful baby girl was taken away, we do not see the big picture for our lives that the Lord has set for us. We know that she is now sitting in heaven watching over us and playing with her Grandpa O’Connor, great grandmother Olson, aunts, uncles, and many other loved ones that we’ve lost.
Her sisters, Calissa, Alayna, and Adalyn love to talk about her all the time and although it took some time for us to be strong enough to talk about her on a regular basis, we now include her as a way to honor her. On June 7th, 2014 we held our first fundraiser event Eden’s WOD held by Black Iron Crossfit in Frisco, TX. We have been so blessed to have their support along with the support of amazing family and friends. There is no way that we could get through this without them and although it never gets any easier, their love and support help us through every day.
Thanks to the wonderful support of Black Iron Crossfit and our friends the Long family, our 2nd Eden’s WOD will be held at 10am June 4, 2016 at Black Iron Crossfit. We are so excited to be able to honor our sweet Eden by raising money to help other Trisomy 18 families through the Trisomy 18 foundation. I know she is smiling from above to be able to help others!!