A roller coaster. That's the only way I can think to describe the last 4-5 months. And not just any roller coaster, one traveling at lightening fast speed, stuck in only "go", forcing you to take sharp turns, gut wrenching drops, climb steep hills and flipping you upside down over and over until your are physically sick. This has been our life. Starting a family has not been easy for us. But after 2 years, 2 miscarriages, lots of tests, and a uterine septum (extra wall in my uterus) diagnosis that we surgically fixed in January, we were hoping to finally be in the clear.
When we found out early June we were pregnant again, I spent the first 12 weeks holding my breath and begging the Lord to let my body be able to carry this baby. I was terrified of a miscarriage. I felt so relieved when we made it to week 13, the farthest we had ever made it before. At our 13 week appointment we decided to do the early screening tests, not really because we were worried - we had chromosome testing after our second miscarriage and were not carriers of anything - but more because I wanted the additional ultrasound for peace of mind that a third miscarriage was not impending.
We thought this ultrasound with yet another healthy heartbeat would mean we were finally getting off the roller coaster, when really, our roller coaster was just beginning.
The Ultrasonographer had just gotten a new machine and we were the first people to use it so when the baby's neck measured a little off, we all chalked it up to being that. Believe it or not, at 13 weeks, a large neck measurement can mean cardiac problems or chromosome problems so our OB, while he admittedly thought that things were fine, recommended we do a "Free Cell DNA Test". This is a very expensive blood test that can test the baby's DNA that floats around in my blood stream. It is 99.9% accurate in diagnosing chromosomal problems, is no risk to the baby, and insurance will cover it when your ultrasound measurements are off. We agreed to the test and figured if nothing else, we would get to find out the baby's sex early which would be fun!
The test was a sendout so I spent the next week trying not to be anxious while Grant simply spent it wondering if we were having a boy or girl. And then, I got the call while in Breckenridge on a work trip. My OB told me that we were having a girl, but that she actually came back positive for two different chromosomal anomalies. The first was Trisomy X. This meant she had three X Chromosomes instead of two. It caused no known problems and is more common than you'd think. But the second was Trisomy 18. Three of the 18th Chromosome that occurs in about 1 in every 6000 pregnancies. This causes the brain to communicate to the body incorrectly. It causes severe developmental and cardiac problems, as well as an entire list of possible other deformities. These babies were deemed "incompatible with life". 50% of them are stillborn before their due date and the other 50% that are born alive are not expected to make it past their first year of life.
And the roller coaster just flipped me and my world upside down.
Grant came out to Breckenridge to get me and we spent the rest of the day processing, crying, praying and walking along the river. We shared the news with our families, small group at church, and a few close friends, but quickly became overwhelmed with even saying it. Our baby would not live. We met with a Genetecist at Children's Hospital (where I work) two days later who gave us a very detailed picture of the possible futures of this pregnancy, and also informed us that 90% of the people with this diagnosis choose to terminate the pregnancy. Terminating was not an option for us. I am so thankful to God that we were on the same page with that first of many difficult decisions. This was not an option obviously because of our faith and belief that she was already alive, but also because she was our daughter and we wanted to meet her, whatever that looked like. While the doctors respected our decision, they were definitely surprised by it. I can't count how many times I was asked about terminating in the next several weeks of appointments with different high risk groups we encountered.
And the roller coaster then began it's extreme ups and downs.
We began weeks of research, appointments, tests, multiple ultrasounds, discussions and difficult decisions - from how we would want to deliver a stillborn to burial vs. cremating to NICU and palliative care plans if she lived. We dealt with people's unwarranted and sometimes inappropriate opinions and comments about our decisions. We dealt with crazy emotions, navigating how to handle questions about our pregnancy from strangers or acquaintances, how much to share with friends and family, and for me, the difficulty of working in the very hospital that I would now deliver and hope to meet my child alive. Work was hard. Looking pregnant every day knowing you weren't going to actually have a child was hard. Questions were hard. And the multiple decisions we had to make were very hard.We prayed for healing every day. We asked that of our friends and family. But we also prayed for peace, for guidance, for a chance to meet our daughter, and for strength to honor God and be a witness in how we handled this whole experience. We decided to name her Eve, which means life, and that became my single most prayer for her - that she would have life.
And the roller coaster takes another sharp turn.
Our "big appointments" came at Children's. The high def anatomy scan and echo-cardiogram of Eve's heart. After weeks of showing us things that looked off on the preliminary ultrasounds we had, astonishingly, they found nothing wrong that day. Nothing with her body, her organs, no fluid on her brain, none of the "typical markers" they should see at 21 weeks pregnant. Plus, previous off measurements of her limbs and head were gone. After a lot of prayer and discussion, we decided to do an Amniocentesis procedure to see if we could figure out why our DNA blood test and our recent ultrasounds were not aligning. I originally refused Amniocentesis because of the high risk for miscarriage/early labor associated with the procedure (when you've had the last 2 years that we have, 1 in 300 no longer sounds like a low risk). The procedure was as scary and uncomfortable as I'd feared, but my OB did a wonderful job and after a few days of lots of prayer against losing her, some scary uterine spasms and some unexpected bedrest, I was thankful that we did it. We just wanted off the roller coaster and were hoping this would at least help us figure out emotionally what path we were really taking. The doctors were thinking the Amnio would come back as "Mosaic" Trisomy 18. This is a less severe type of Trisomy 18 where not all the cells are affected. We were praying for healing, but still knew this was a longshot and may not be the path the Lord had for us. DNA doesn't lie, we had seen things wrong on previous ultrasounds, my doctors had never seen the blood test that diagnosed us be wrong, and it was even more unlikely to be wrong given we had two abnormalities show up and not just one.
And the roller coaster was stuck at the top of a steep hill, not moving, teetering like it just might drop.
This has been the longest week of my life.
A week full of prayer, tears, trust and fear. They said to expect the results around Thursday, and I knew in "hospital time" that meant Friday or even Monday. So I was surprised when my OB called me from his personal cell phone late Thursday night. He said he wanted to call to give us our results as soon as possible because he couldn't believe them himself. Our Geneticist had texted him the results before the paperwork was even faxed over because they were so unbelievable. Eve's chromosomes came back completely normal. All of them. No Trisomy X. No Trisomy 18. Nothing. He said the entire team of doctors were literally scratching their heads trying to figure out how this could happen. None of them had seen a false positive and this would mean we had TWO false positive results on our initial DNA test!!! Plus, we had seen red flags for Trisomy 18 in growth and development on our 13, 16 and 18 week ultrasounds and they just disappeared at 21 weeks! Grant and I know how this happened. We know it was the power of prayer and the Lord's mercy and provision.
Whether you believe these were true initial results at 13 weeks pregnant and the Lord healed our little girl, or you believe that we were the 1/10th of 1% that got the false positive in our bloodwork, both explanations are pretty miraculous. And we are beyond grateful. We thank you to those who have ridden this roller coaster with us, for your prayer, your shared tears, your meals, your sweet thoughtful gifts and support. We know that people have been praying for Eve from all over the country, people we do not even know. We want you to know that we believe your prayers are what has healed her, and we could never thank you enough for that. We ask you to continue to pray for her throughout the rest of this pregnancy, that we would finally be off the roller coaster and would deliver a healthy happy baby in a few more months. We ask you to pray as we have, that her life would be a wonderful testament to the Lord who blessed her with it. We love you all and it is with unexplainable joy that we are happy to announce (5.5 months into pregnancy).....
Coming Valentine's Day 2015.....our little miracle.....Eve Elaine Usry!!
PS - if you are curious what life was like in the midst of this last several weeks in more detail, I posted (on my blog but not on facebook) a few of the many blogs I had written and saved during that time. I wasn't sure I'd ever post them, but it now seems appropriate.
