Sunday, October 12, 2014

What's in a name? 15 weeks

Trisomy 18:
The name doesn't seem so scary. But with it comes an error in cell division making our baby have three of the 18th chromosome and a long list of possible anomalies including mental retardation, heart defects, hearing impairment, organ dysfunction, low birth weight, slow growth, esophageal atresia and the list goes on and on. A lot of emotion comes with the name Trisomy 18. A lot of fear and anxiety and sadness comes with this name. A whole lot of unknown and trust in the Lord comes with this name.

This is the name we chose for our daughter. It means so much more to us than the three letters it holds. If you look up Eve, you will see that it means "life" or "living". This is why we chose it. This is our hope for our daughter. We want her to live. At first, this meant to me my single most prayed request over the last several weeks - please Lord let my daughter be healed and live. But I think as her diagnosis has sunk in, I want more than that. Yes, I still pray every day for Eve to live. For us to get some time with her on this earth no matter what that time looks like or how long it is. We pray we get to meet her alive. But I also want her to live metaphorically through me. I want her legacy to live, whether she gets to grow on earth or not. I want her lessons to live in me over time. I want to live better because she lived. And I want people to know she is already living, within me, as I carry her. We cannot deny she is alive. We have seen her alive in ultrasounds, heard her living heart beat, felt her move. She is already alive. And for that we are grateful.

I pray often that the Lord takes away the name Trisomy 18 from Eve. But if He doesn't, we still choose life for her. And we pray that her life is meaningful in whatever way He desires.  And we are proud to say that she is currently living.

18 weeks

I had two rather incredible things happen last night.

1. I ate an entire bag of powdered donuts at around 1am. Although eating in the middle of the night I must admit is not uncommon for me (even Un-pregnant this is a norm), eating an entire bag of straight up sugar and fat definitely is. It was quite the feat and I'm not sure if I should be proud or embarrassed. And to top it off what did I want for breakfast this morning? Powdered donuts of course. I had to get some at the gas station on the way to work.....sad.

2. I felt Eve move. I was so sad and somewhat panicked when the ultrasound tech told me a few weeks ago that my placenta is in the front and therefore I won't feel her move as much or as often because she really has to be pushing for me to feel it. How would I know that she is still ok and alive in there without knowing that she is moving? 4 weeks apart for an ultrasound is a long time when you have a Trisomy 18 diagnosis and could lose your daughter at any time. But laying still while trying to sleep, I am certain I could feel her. Little flutters in my belly that almost feel like she is doing flips. It was a great reassurance and exactly what I needed as we are at the midpoint in between ultrasounds and playing the waiting game.

So...while I yawned my way through a very busy day at work today and I felt pretty sick and sleep deprived this morning, what a great night I had. Donuts and connecting with your babe...what could be better? Flip on little Eve....and I will eat on. :)

16 weeks

Yesterday, we saw her.

It was the first time we have seen her since her diagnosis. I know that was only two weeks ago, but boy has it has felt like an eternity. I had a lot of anxiety I must admit. We are trying to live every day with no expectations, to live trusting in God's plan for this. But I've learned no expectations doesn't mean no fear. I know that she could leave us at any time, that she could look different than normal ultrasounds, that she could start measuring behind or have major abnormalities. And I am afraid. Really more afraid of losing her than anything else.

But seconds into our ultrasound, fear was no longer what I was feeling. No, it was joy. Seeing her flip around and wiggle about and to see her little heart beating, it was joyful. Not because of a good report, although she measured behind, her heart rate was normal, one of her little hands was open and she had no clubfeet. But the joy came before we knew these things. the joy came because she was mine, and for now, she is alive.

We know that yesterday's happy ultrasound does not mean she is normal. It doesn't mean she will survive. DNA does not lie and it's too early to see her heart or brain, the two areas that will likely be the problem, and sometimes the "markers" for Trisomy 18 are not even seen on ultrasound. But we are thankful for the little joys we are learning to find in this pregnancy. And yesterday's ultrasound was definitely one of them. Eve Elaine, you bring us joy baby girl.

16 weeks pregnant

Eve Elaine: 16 weeks, 4 days

A Winding Road - 14 weeks

If you saw my Facebook recently, then you saw my post of a quote from John Piper. I found this quote at the first of the year in the middle of a flooded house, a uterus surgery and a torn ACL. I clung to it then and must admit, while I have never read the book it came from, after months of this winding road, I still cling to the quote.

I know we are not guaranteed peace or happiness in life. I hate the "prosperity gospel" of the south for saying so. That is not what the bible promises. Not what Jesus came for. I know that the Lord refines us and we are given the chance to glorify Him throughout our trials and along our winding and troubled road. I just didn't know my winding road would have so many switchbacks and boulders and slippery curves all at once. That we would have so many trials and struggles all in the same year or two. And I could not have ever known this new one was coming.

You never think it will happen to you. Trouble starting a family? Not me - no one in my family has had that problem. A miscarriage? Nah - only 1 in 5 women have one. A miscarriage after seeing a healthy heartbeat? No way, less than 1% of women who see a healthy heartbeat on an ultrasound go on to miscarry. More than one miscarriage? Of course not - only 1% of women have more than one miscarriage at all. And this?....

What I have learned is that statistics never correlate with God's plan. And while I have no idea why, His plan for us is much different than our own once again. This third pregnancy, after surgery to fix some uterine problems that were causing our miscarriages, a completely unrelated issue has come about. At 15 weeks pregnant, our little girl was diagnosed with Trisomy 18. A girl. We are having a little girl, if the Lord allows us to have her. And if you ask me did I think this would happen? Absolutely not. 1 in 6000 births have Trisomy 18. 6000. And we had chromosome testing after our second miscarriage - we don't carry an increased risk for these problems. Our first two little ones were tested - they did not have chromosomal problems leading to their deaths. 1 in 6000. We seem to always go against the grain.

This is not what I envisioned for my little girl. I envisioned twirling in fancy dresses and running through fields picking wildfowers. Playing in the river downtown and learning to ski with her daddy. I envisioned boy craziness and prom dresses and a wedding someday. I envisioned a new best friend. Instead, I will have to say goodbye to my princess way too soon.

We pray we get the chance to see some of those things in this little girl. We pray for a miracle and truly believe in them. I see them at work in the hospital all the time. We pray for healing. We pray that we get to meet her. We pray for life. And if that is not the Lord's plan for her, then we pray that we glorify Him in how we handle all of this.

We have chosen to carry this through unto completion, whatever that looks like. I will literally carry this little girl along "switchback after switchback", through "the seemingly unknown trail through the mountains", until the Lord brings her home. Whenever that may be. We ask that you pray with us that she would be healed, that she would get the chance to have life and live it to the fullest. We ask that you would pray for us, that we would have peace and understanding as we are on this journey. Life truly is a miracle. We have seen that first hand while trying to create it.

"Life is a winding and troubled road. Switchback after switchback. And the point of biblical stories is to help us feel in our bones not just know in our heads that God is for us in all these strange turns. The life of the godly is not a straight line to glory but a dark and seemingly unknown trail through the mountains. There are rockslides and slippery curves and hairpin turns that make us go backward in order to go forward. But along this hazardous twisted road that doesn't let you see very far ahead and may even make you feel like you've been led to the edge of a cliff, God gives us encouragement and hope that all the perplexing turns in our lives are going somewhere good. Often when we think God is farthest from us or has even turned against us, the truth is that he is laying the foundation for greater happiness in our lives. God is plotting for our joy. He is plotting the course and managing the troubles with far reaching purposes for our good and for the glory of Jesus Christ. That is a sweet and bitter providence."
-John Piper

Don't believe in Miracles? Read Our Story

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.