Sunday, December 21, 2014

Christmas Reflections

I've been wanting to write for awhile. People have asked how we were doing and some asking me to write but I just never got the urge to. I think I have hesitated partly because we have been in a whirlwind of events between baby planning and the holidays, but mostly because I didn't want my  blog to be a big emotional mess....and I have been an emotional mess as of late.

I do think a lot of my crazy emotions are pregnancy related. You really have no control of the raging hormones within you. Most recent examples would be crying because Panera Bread was closed, crying because I didn't fit into a certain outfit, crying when hungry, and I must admit, just last night I teared up in the movie Elf of all things, when Buddy saved Christmas. If you know me, you know tears would never happen for any of those reasons normally!

But there is an element of multiple emotions linked to our story, pregnant hormones or not. I still have moments, mostly when by myself in the car or the shower, of overwhelming sadness, joy and awe all at once.  Moments of reflection on all that we have been through this year, thoughts of what it would be like to bury my child or deliver a stillborn. Lots of tears. And then more gratitude than I've ever felt before that losing her is not the story we will have, that we will get to have a child soon. More tears. A sense of wonder of how she could be healthy after all that we saw in the first half of pregnancy. More tears. It's in these quiet emotional moments that the fear creeps in as well. What if she isn't really healthy after all (although at all of our OB appointments since we got our reversed diagnosis, she has looked 100% healthy and normal)? What if something goes wrong with delivery? Or after? This kind of fear is so not what we have been called to and I have to pull myself out of it often.

"For God did not give us a spirit of fear, but of power and love and self control"  -2 Timothy 1:7

Have you ever thought about the Christmas story in relation to emotion? Christmas has become so much commercialism that I think that sometimes the actual Christmas story takes a back seat. Maybe it's because I'm pregnant, maybe it's because of the gift of life we have recently been given, but I have really been thinking about all the feelings involved in the story as Christmas nears. Think about how much fear Mary and Joseph must have felt throughout all that they were called to. Fear of criticism and what others would think when she became pregnant before married, fear when there was no room in the Inn for her to deliver the baby, fear of being the parents of a savior, worry about if that would be well received, fear of all the unknown. Think about all the other emotions they must have felt. Gratitude that the Lord picked them and provided for them step by step along the way, joy as they met their son, wonder as they realized he was their savior. So many emotions.

I'm not at all trying to compare our story to the greatest birth story ever told, but I do think that our perspective is so different this year, that I may for the first time really be able to understand the story in a different way. And while I have heard this story my entire life and truly believe it is real, our situation this year certainly makes it feel more real. I understand what it means to get a gift you don't deserve better than I have before. I understand the roller coaster of emotions within it all, what it must have felt like to walk through all of that. I understand what the verse within the story means when it says "Mary pondered all these things in her heart". I can't even begin to imagine how weary Mary must have felt traveling in her third trimester, and what it could have been like to deliver a baby in a stable, not to mention the crazy emotions she must of felt knowing who she was giving birth to!

I'd encourage you this Christmas to think about the true meaning of it. To remember that the people within that story were real and to try and reflect on what it must have felt like. I'll tell you really thinking about what it must have felt like sure does give me more understanding of the wonder and awe of it all. It really is an amazing story.

I leave you with the quote my pastor used today at church when talking about the story of Jesus' birth. "It's a crazy story, that people should think is weird.......unless it was real". Don't forget how real the story really was as you go about all your Christmas activities. And don't forget what it meant for all of us!

Merry Christmas everyone!

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.

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

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

Here's another just for fun:

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!