Sunday, October 12, 2014

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.


43 comments:

  1. This is an amazing story!!! A story of FAITH and HOPE and so much more!!!!
    Prayers for your journey......SO happy for you!!!!

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  2. What a beautiful, powerful reminder that God is in control. As someone that has experienced a miscarriage in January and then an ectopic pregnancy last month, I can relate to the heartbreak you must have been feeling for the past several years. I can't imagine the roller coaster you have been on, but am so thankful for the joy God has now given you in healing your sweet baby girl. Prayers will continue for the rest of your pregnancy and delivery!

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  3. Praise God for his mercies endure forever!!!!

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  4. Wow so amazing! Praise God! So extremely happy for your family and I will be praying for y'all.

    Xoxo,
    Summer Ann

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  5. Wonderful news! He is definitely still in the miracle working business! Oh & love the name, (Elaine is my baby girls middle name too)!

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  6. Praise God for healing your little girl! What a grander purpose in life she must already have set before her! Just imagine ��

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  7. I came across your story when a mutual friend liked it on FB! I had to let you know how amazing and inspiring it is to read! It fills me with so much hope for my own pregnancy! My husband and I have been on a similar roller coaster - elevated NT turned cystic hygroma at 13 weeks. We are still in the uncertain period of not knowing what could happen. Our formal anatomy scan is this week and our fetal echo in November! You have given me hope that miracles do happen and faith perseveres! Congratulations to you and your family on such wonderful news and best of luck on the rest of your pregnancy!

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  8. I have a bunch of miscarriages which testing showed to all be female with a chromosome disorder. We were told we were extremely lucky to have had my son and that we probably wouldn't have a live born child again and definitely not a girl. After much prayer and then acceptance of whatever God had for us, He saw fit to give us our sweet baby Jane. There's a lot more to it*, but it's beautiful how God works in these seemingly hopeless situations.

    *If you want to read the whole story, I did a blog post about it: http://thericharmedlife.blogspot.com/2013/08/what-makes-jane-our-miracle-baby.html

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  9. Sending praises and will keep you in prayer. We certainly have a big God - God is awesome, all the time!

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  10. Oh my. Incredible. Praise God for Eve's miracle. I have one almost exactly like this. At our 18-week ultrasound for our third child, also a girl, the radiologists found three markers for Trisomy 18. We were put through the same battery of tests, "incompatible with life" speeches, and scary appointments, along with the roller coaster of sobbing, grieving, joy at every kick that meant she was still strong, and constant prayer. We chose the name Raphaella for her, because it comes from Jehovah Rapha The Great Physician, and means "God heals." Then at yet another ultrasound with the perinatologist(this one at 30 weeks) the radiologist and perinatologist studied our girl from head to toe for an hour. At the end of the appointment the doctor said in what sounded like half exasperation and half incredulous awe, "I can't find a single thing wrong with your baby." Our Raphaella Grace just turned 4 years old 3 weeks ago and is the absolute picture of health and joy. <3

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  11. What an amazing story to remind us what a precious gift our children are. Your story sounds so familiar (uterine septum and 2 miscarriages). Best wishes to you.

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  12. This is amazing! you are amazing! The power of prayer and faith in our Lord is incredible. Thank him so much for your miracle Eve! Congratulations!

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  13. Thank you for sharing your story. As I was reading your blog, I was crying because it was as if my husband and I had written it. Our stories are almost identical. Change Trisomy 18 to 13 and its the same exact path and the same exact thoughts that we having been dealing with since May. Our baby boy Drew is set to be delivered in 2 weeks and against all odds he is healthy! Our God is an amazing healer and a miracle worker! We will be praying for you and your miracle baby!

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  14. It's possible they found cells from your previous miscarried pregnancies. http://www.scientificamerican.com/article/scientists-discover-childrens-cells-living-in-mothers-brain/

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    1. Thanks for this. They actually tested both of our first two babies for chromosomal problems and found none. But an interesting article!

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  15. Such an incredible story of God's awesomeness! Thank you for sharing!

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  16. Praise God from Whom all blessings flow!!! That is an amazing testimony to His grace and faithfulness! He has such wonderful, big plans for Eve to allow her such a beginning...and also for y'all to allow you to see a miracle (times TWO!!!). May God get full glory for the wonderful things He has done!

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  17. Hi Michelle,
    You don't know me, but I just read your news on Facebook. Congratulations! I was in a similar situation with my son, Will. He had hard and soft indicators in his 20 weeks ultrasound, including the larger next measurement. We had the Maternity21 testing done with my blood and everything came back as normal genetically. We also had echos performed inutero at 23 and 32 weeks. Each checked out great. The specialist even said his heart looked perfect on the 32 week ultrasound. He was born appearing happy and healthy. It took several weeks and many missed opportunities for diagnosis by 4 pediatricians, a family doctor, and 2 ER doctors, to determine that he had a coarctation of the aorta. He had surgery at 2 weeks and an angioplasty at 4 months. He is now a happy and healthy little boy. I'm sending you this message in hopes that you will request and echo be performed on Eve after birth. This miracle baby should have a long and healthy life. I just wanted to make you aware of our story in hopes that nothing is missed in yours. I wish you all the best and will be praying for Eve and your family.

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    1. Hi Lyndsey, you don't know me, but I just wanted to encourage you after reading your comment. My husband (now 30) was born with a coarctation of the aorta, and it was not diagnosed til he was 3 yrs old. He had surgery at 4, then another at 25, and he is doing well now, just taking an inexpensive once daily Rx to keep his blood pressure low. I don't know if the Drs every explained the late diagnosis to you, but when I was pregnant with my daughter, we did a fetal echo b/c of my husband's condition. Her heart looked great, but the Dr did say that a coarc actually cannot be diagnosed inutero b/c the heart changes after birth, and a coarc will not actually show up until then. I'm glad that your son was diagnosed within a few weeks after birth though; it shows that medical knowledge and technology has improved greatly over the past 30 years. My husband was only diagnosed because the Dr happened to check his pulse on his feet, and noticed it was much weaker than in his arms. The treatment options and survival rate for congenital heart defects are SO much better now, and I hope that your little one continues to grow healthy and happy! (Oh, and thankfully my daughter was born without any heart defects. It worried my husband greatly, because he was afraid he could pass it on to her, but I don't even think it's a genetic trait..?)

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  18. Thank you for sharing. I am so moved by your story and thought my last 5 month's have been hard. We share the same due date Feb 14th. God bless your family and baby Eve.

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  19. This is awesome! This is a story of our faithful Father, the Author and Creator of life!!! He works miracles every day! God bless y'all and your precious gift of a daughter!!

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  20. Thank you for sharing! What an awesome testimony! God has big plans for Baby Eve! My son has Trisomy 13. The prognosis is the same as Trisomy 18. We did not have a prenatal diagnosis. God has done miracle after miracle in his life. He will be 16 years old in November!! It is discouraging to hear that doctors still almost encourage termination. They only tell you all the potential problems but fail to share how much joy these babies bring their families as well as all who meet them. God bless your family!!

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  21. How much did you pray? My friends kid died, so I guess they didn't pray enough. It would be good to know the right amount! Funny that God keeps us guessing.

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    1. Alix, the Lord does keep us guessing but His plan is always soveirgn. When we lost our first two babies, it wasn't because we didn't pray enough. It was because His plan is different. I will never know His plan, but I trust in it. That's what makes him God. We would praise Him no matter what the outcome of this pregnancy. "The Lord gives. The Lord takes away. Blessed be the name of the Lord". -Job 1:21

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    2. What an awful thing to say... that someone's child died because they didn't pray enough. I hope you never said that to your friend. My son died and believe me I prayed more than you could possibly understand and I had hundreds of people pray along with my family.

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  22. Wow~this got my tears flowing and my prayers of thanksgiving going up! This touched my heart because I have a 5 year old daughter with Trisomy 9 Mosaicism and I have been where you were. Praising Him with you and for you. To God be the glory!

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  23. Amazing grace! God hears our prayers and miracles happen. My 2 year old granddaughter is proof of that. my son and dil were told she was missing part of her brain and that they should terminate. multitudes of prayers later she is totally healthy. Praying for you...

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  24. We have some things in common -- I'm also due on Valentine's Day with a baby girl. But our Grace does have Trisomy 18.
    Look up "confined placental mosaisicm." This is what I prayed for when awaiting Amnio results -- an explanation for why cell-free DNA would be abnormal and an Amnio normal. Sadly, my Amnio wasn't normal, so this isn't what I have. But it could explain your story. Not trying to take away the miracle of it -- I think "rescue cells" that result in confined placental mosaicism is actually quite miraculous. Blessings.

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  25. Wonderful! I know you said Eve means "Life". Elaine (also my daughter's middle name) means "light". So Life and Light. Perfect name for this little one!

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  26. We have a story almost identical. We suffered 5 miscarriages and were told our baby had trisomy 13, also incompatible with life. We opted to not do the amniocentesis. I did genetics testing on myself to see if I could have been the problem. After she was born in July, we did genetics testing on her. She does not have trisomy 13. I saw two perinatologists offices and neither had seen that happen with a false positive. I believe it was the power of prayer and God healed our baby too. Thank you for providing hope to others. Bless you and your family.

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  27. All that can be said is God is GOOD! Praise Him and give thanks for all the blessings He give us.

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  28. Wow, wow, WOW!!! Praise the Lamb!!! I believe it was complete healing & God's way to reveal himself to anyone who may question his miracle working power today! To Him be ALL the glory & may those you encounter during this pregnancy who may not know Him, see Him through you...what an amazing platform you've been given...40 straight weeks to just proclaim Him at any moment!!! A friend just shared your post on fb & I will be sharing it as well...God is so good!!!

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  29. My friend on facebook shared you story and I am glad that she did. So grateful for a loving Heavenly Father who granted you this miracle. Sometimes it's difficult to understand His plan for us, especially when His plan results in difficult trials for us to navigate. Thank you for your reminder that miracles still do exist. So glad I stumbled upon this beautiful story this morning.

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  30. I will pray that your Eve comes into this world healthy and thriving. My son passed away 8 weeks ago because he has Trisomy 18. It is something I would not want anyone to have to go through. While I wish we got the same kind of miracle while on a similar rollercoaster, our boy had several anomalies that prevented him from surviving. I still consider my son a miracle even though he didn't survive.

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  31. I have come across some literature that cells from each pregnancy can be found in the mother's body for decades after the fact. Perhaps this is why the lab tests were wrong? I absolutely believe God granted you this miracle, but perhaps that's why the mistaken lab results.

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  32. Praise God from whom all blessings flow! What a testamony to God as our Jehovah Rapha - The Great Physician who heals the physical and emotional needs of His people. Immediately, God brought Exodus 23:25-26 - "So you shall serve the Lord your God, and He will bless your bread and your water. And take sickness away from the midst of you. No one shall suffer miscarriage or be barren in your land; He will fulfill the number of your days." If you read all of Ex 23:20-33 it will blow you away! The Angel of the Lord tells the Israelites not to bow down to what the leaders or kings tell them to do, but they shall utterly overthrow them and completely break down their sacred pillars because of their choice to trust and follow God. As a result, v. 27 says, "I will send My fear before you, I will cause confusion among all the people." Wow! Because yall didn't bow down to those who whispered in yours ears "Abort" but trusted God as Jehovah Rapha - The Great Physician - "He took sickness away from the midst of you." Thank you for allowing your story to be used for His glory! Amen. (I am Jacob McDougal's mom and live in the Houston, TX area)

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    1. Praise God! Sooo very true I agree and am so encourage by your scripture references! Ebed story really has strengthened me. I have just been given the same prognosis. I am 12.5 weeks. I too had a miscarriage prior. Please pray for our little miracle. I am claiming it now! Praise be unto Him. Thank you everyone.

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  33. What an amazing Journey...Faith, Family and God's true Power. Bless you indeed, Cousin Shandra (Oregon)

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  34. Your story had just give me hope! I been told my 20 weeks old might have trysonomy 13 and I don't believe it cause I know God does miracles. My family and friends are praying and I have the Faith I will be holding my baby girl on February 2017!! Thanks for sharing your story.

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