Sunday, October 12, 2014

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.


Saturday, May 10, 2014

Good Ol' Gospel

When I need encouragement, I always revert to gospel music. Not KLUV christian type music, I'm talking Kirk Franklin, Fred Hammond, Donnie McClurkin.

Grant isn't a fan of the gospel music I have. All he hears is lots of clapping and cheering and repeating of the same lines over and over.  But that cheering and uplifting sound, those repeating lyrics - they speak to me. It might seem strange, a very white woman in Colorado listening to stand up and dance type gospel music on a regular basis, but it has been frequent on my Ipod this last 12 months. I think it was ingrained in me from my teenage days, listening to gospel (and lots of r&b and rap) on the bus on the way to track meets. And with Brandi, Carly and Kelsey, swapping gospel albums while traveling in my college track days. Whatever it was, it has stuck with me, and I always go back to that kind of music when I need a pick me up (yes I know....I just got very strange in the eyes of many. I'm ok with that).

Maybe it's because it's mother's day wknd or because it's May, but I woke up early this am, and today is a gospel kinda day. Thought I'd share some of the beautiful lyrics found amidst all the clapping and cheering in these artists' songs:
 
When I cannot hear the sparrow sing
And I cannot feel the melody
There's a secret place that's full of grace
There's a blessing in the storm
Help me sing it
There's a blessing in the storm

When the sickness won't leave my body
And the pain just won't leave my soul
I get on my knees and say, "Jesus please"
There's a blessing in the storm
Help me sing it
There's a blessing in the storm


When I cannot seem to love again
And the raindrops won't ever end
If you just hold on
Those clouds will soon be gone

There's a blessing in the storm
Help me sing it
There's a blessing in the storm

-Kirk Franklin

https://www.youtube.com/watch?v=J3YLn9xAq1c

Ooh child things are gonna get easier
Ooh child things will get brighter
Ooh child things are gonna get easier
Ooh child things will get brighter

Some day we'll put it together and we'll get all down
Some day we'll walk in the rays of the beautiful sun
Some day when the world is much brighter

if you're tired of the crying
if you're tired of people dying
if you're tired of the fighting
no more wars, no lying
all the people in the world
every boy every girl
you know it's not over until God says that it's over
come on
-Donnie McClurkin

https://www.youtube.com/watch?v=nUSY1ydMpi8

Here's another just for fun:
 https://www.youtube.com/watch?v=97hgMZFH5BM

And just to prove Gran't doesn't share my same affinity for this style of music, he just woke up and yelled from the bedroom "Is that Gospel? Put on a better wakeup song!!!"
G, You know you like it. :)
















Sunday, February 9, 2014

The "Are you kidding me?" month

Oh the irony.
On our way down to Dallas over Christmas, Grant and I had a conversation about how much we were looking forward to 2014 and starting afresh after a really rough 2013. And then January came.

In the last 5 weeks: we had a burst pipe attached to the toilet that flooded our house - our laundry room, hallway, guest bedroom, office and both bathrooms had to be completely remodeled (and are still under construction), we showered at the gym for a week, we moved into a hotel for 3 weeks, I got diagnosed with a clotting disorder, I tore my ACL skiing 4 days before a scheduled surgery, I had that scheduled surgery (a hysteroscopic metroplasty), and Grant's car got broken into.


Needless to say, things have been a little wild and overwhelming! But throughout the last 5 weeks, we have also learned some things that I think are invaluable, and I wanted to share a few.

1. Stuff is just stuff.
Material possessions being lost/ruined really didn't bother us in light of the health issues I had going on. We can live without nice stuff, even without a shower and be just fine thank you! Relationships and health are so much more important. And we are thankful that we haven't lost those.

2. We have invaluable, fabulous friends.
I have always wondered about having support in Denver, away from our close and wonderful families. I wondered how things would go if something went wrong and/or with having kids. But we have been incredibly loved by neighbors, friends, and our community group at church in a way I never expected in the last year, and especially in January. They have opened their homes to us, fed us meals, took care of me after my surgery, prayed for us, encouraged us with texts and letters, and even helped us pack/unpack our house! We would not have gotten through the last month without them and I could never express how much gratitude I have for them!

3. When someone offers to help, take it.
This one was hard for me. I usually am the one offering. I also hate to inconvenience people. With our miscarriages, I turned a lot of help offers down. But this time, we seriously needed the help. Feeling really weak and sick post op with no house and no working kitchen and on crutches = HELP!

4. It's ok to have help.
Also hard for me. I am the independent, I can do it on my own, type girl. So much so that Grant and I used to argue about me not letting him help when we first got married! I have learned so much humility through the last several weeks. God made us to help and have help. There is truly a season for both. I now understand that. And it has been a beautiful lesson.

5. God will give you more than you can handle.
You know, so often people spout out, "God won't give you more than you can handle" as some offhand type of encouragement when things aren't going your way. I disagree. The verse does not say that. The verse is not referring to that. The verse says he won't give you more temptation than you can bear. It's not talking about tragedy, misfortune, health issues, or house floods. It's talking about sin. I think it's the opposite. I think God gives you more than you can handle. I think He allows it as a sort of test, as a lesson. And then He gives you His word, His strength, His comfort, and His people to help you through the overbearing times.

Hoping that our uphill battle is on it's way to downhill soon. But so thankful for the love and support we are receiving and the lessons we are learning while climbing up our hill!








Saturday, December 14, 2013

30 for 30

2013 has been rough for us.

Many of you know this if you walk through day to day life with us, as Grant and I agreed a long time ago that we would always share our struggles openly so that we had appropriate support, love, and guidance throughout life's imminent trials. We really believe in the necessity of a strong community to walk through the goods and bads of life with you, which is a lot of why we choose to lead a "community group" through our church.

But if you aren't in our day to day lives, I never felt the need to share. I'm not really the kind that shares my every life's detail on facebook/blogs. However, it occurred to me tonight that maybe someone else that isn't in my immediate lifeline needs to hear my story. And so share I will.

I am supposed to be 9 months pregnant right now. I am also supposed to be 15 weeks pregnant right now. But instead, I am not pregnant. In fact, I just had 15 vials of blood drawn on Friday to try and figure out why I can't seem to stay pregnant. I have had two miscarriages this year, both at the end of my first trimester. I had two D&Cs this year, exactly 6 months apart to the day, one on May 22nd, the other November 22nd. December 19th is supposed to be my first baby's due date. December 19th is also one month exactly from when I found out we for sure had lost our second baby. December 19th will be a difficult day.

We know God is writing our story. But honestly, after this second miscarriage, trouble recovering physically from this second D&C, and less support this time due to other strife within my family and holiday distractions, I have been struggling to hang on to this promise the last few weeks. I have been at a loss of where to go from here. What to do now. I have felt very alone. I have been an emotional roller coaster. And then today, God spoke to me in an unusual place to help calm my crazy heart.

We were watching a 30 for 30 episode tonight and I had an epiphany through the life of Maurice Clarett. If you know who Maurice Clarett is, you would not find a correlation between recurrent miscarriages and the story of a troubled athlete let go from Ohio State for something silly, which spiraled him into a world of drug dealing/alcohol that led to 4 years in prison. But this story touched my heart. I related to Maurice and how lost he felt after not being allowed to play football. The only other time I have felt truly lost in my life was when I blew my knee out end of junior year of college, had two surgeries and couldn't really contend in track anymore. I thought being a successful athlete was my purpose at the time. And I feel lost now, perhaps because my heart's desire is a baby and I thought that being a mother should be my purpose right now.

But my epiphany truly occurred when Jim Tressel was talking about Maurice. Jim Tressel, Ohio State coach in the early 2000s explained Maurice's situation as: "Your goals constantly revise based upon your circumstance, but your greater purpose, your true reason for being, always supra cedes." Maurice's true reason for being supra ceded his bad luck and poor choices. It supra ceded his desire to be a player in the NFL. God had a greater purpose for him. He is now out of prison, a good father, a motivational speaker and working with Jim Tressel to empower young athletes to make good choices.  His life now is much more influential than his life could have been as a successful football player and I pray he chooses to let God continue to use him.

My greater purpose in this chapter of our lives will supra cede as well. It may mean I won't have children of my own blood, which could become a beautiful story. It may mean I do have a child in the near future and appreciate that child all the more after losing two this year. I don't know. But it was a great reminder that God is always working in our lives, in good times and bad, and always has a plan of where our lives will go if we trust in Him.

So thanks ESPN for this 30 for 30. Who knew it would touch me with my very unrelated (as it seems anyway) story. I will try to remember these lessons as we walk through the next few months, mourning the loss of two children in 2013 and trying to figure out what 2014 holds for us.

Thursday, November 21, 2013

De Ja Vu

6 months ago exactly from today, on May 21st, I found out that we had lost our first baby. Things had looked fine up to that point. Healthy ultrasound two weeks prior, healthy heartbeat, baby measured correctly. And everything just stopped at 11 weeks along. 6 months ago to the day tomorrow, on May 22nd, I had a D&C. It was horrific and tragic, but we chose to see it as a blessing. We believe that miscarriage occurs when chromosomes don't add up correctly, therefore, they are a blessing as the pregnancy stops before the baby progresses on too far and then later wouldn't survive or would have severe deficits and deformities.

Tomorrow, 6 months to the day after our first D&C, I am having another D&C.  I am almost 12 weeks pregnant, only things never looked right this time from our first ultrasound on. The pregnancy felt right - I have been very sick and tired, and with all the typical pregnancy symptoms. My HCG and Progesterone levels have been rising correctly. But the baby was not progressing normally on the ultrasounds. The baby was measuring behind. For the last three weeks we have begged and prayed and pleaded with the Lord to work a miracle inside me and provide us with a healthy baby. Prayed our dates were just off or we just had a little "late bloomer". On Tuesday, we found that His answer was not the answer we were hoping for.

A friend at work, who has also suffered multiple miscarriages and eventually had to go to other routes to have a child, was talking with me today. She said to me that she felt fertility problems of any kind, and definitely recurrent miscarriages, were a different kind of grief than most grief in this world. If you have gone through similar struggles, you would understand this. It's not just one event of grief, the miscarriage, the loss, but it's the little grief, the constant little things that cause recurrent grief over and over. It's the dates that you remember (I would have been this many weeks along, I would have been in this trimester today) every week from then on. It's the grief every month from then on, trying to get pregnant again and mourning the losses of your first tries all at the same time. Mourning when you aren't pregnant and mourning when you are. It's every baby you see or baby things you see in the store (or at work for me). It's every time you see a friend or a loved one get pregnant and have a healthy pregnancy, when yours just won't work right despite every effort. It's the due dates of your lost babies (for me, December 19th and June 14th will forever be hard days).

God doesn't promise us a life without grief or hardship. He doesn't promise us children or that things will always go the way we plan. This is hard for me as a planner. And this has not at all been my plan. But He does promise that He has a plan for our lives, whether it matches mine or not, one with a hope and a future. And He does grieve with us (I love the story when "Jesus Wept" as he heard his friend Lazarus died, even though he knew that Lazarus would be revived from the dead later).

Am I sad? Yes. Do I wish this were the way things happened with my life? No. But I also know that trials in life bring me closer to family and Christ than any other time. While we go through this again and are obviously devastated, we know God is writing our story. We know He has a plan and will see it on to completion, whatever route of having children His plan may be. And we know that the day we do have our first child, in whatever method that may come, will be ever sweeter because it has been so much work and tribulation getting there.