An unknown answer to very difficult questions

First things first: an introduction. My name is Rebecca and I am married to Josh, we just recently celebrated our 2 year anniversary February 26th, although we’ve been together almost a decade. We have called Durham our home for 2 years together, but our hometown is Greenville, NC (Go Pirates!). I moved to the Durham area when I got a job at Duke Fetal Diagnostic Center as an ultrasound tech right out of school in 2009. Josh moved up here after we got married and he finished school at ECU in 2011. We have been members of The Summit Church in Durham for almost a year and I have been going for three years now. We are heavily involved in our church and have a very strong faith. Josh and I have always wanted a big family and we both have a heart for adoption. Our plan was to have two of our own and adopt two. We have been thinking about planning a family since we got married, but some obstacles were in our way. First, Josh needed to find a job and then once he did, we went on a mission trip to Haiti and wanted to wait until we came back to start trying. Once we started trying to get pregnant, I got pregnant almost immediately. I work at a high risk center and I know way too many terrible pregnancy outcomes. I think I may have been placed in this job so God would preparing my heart for what was about to happen…

This is my first blog post ever, unfortunately, so please bear with me. This also may be the longest blog post as I am trying to describe a complicated situation to people who may not know anything about it. I feel this is the most efficient way to share information about our current situation without having to repeat myself over. Today I am 13 weeks pregnant. I am due September 12, 2013. What should be the happiest and most peaceful time in our lives is shrouded by uncertainty and tough decisions. What makes my pregnancy high risk are the multiple birth defects I personally found, scanning myself, at 10 weeks gestation. If I get too technical in my posts, please make a comment below to ask any questions and I will clarify. I will try to explain without using all of our OB jargon. As a sonographer, I scanned myself on occasion to look at the heartbeat. February 18th when I got to work, I did just that and saw what I know to be abnormal findings and immediately called my team leader to come in to scan me. What we discovered are these exact findings: increased fluid behind the neck, extending throughout the body called a cystic hygroma, the liver and intestines outside of the body through a defect called an omphalocele and the heart not inside the chest where it is supposed to be, but pulled into the abdomen.  None of these findings give an accurate diagnosis. The diagnosis most likely is not a chromosomal issue, such as Down’s syndrome, but that cannot be ruled out presently. In my four years at Duke, I have never seen anything like what my baby has. A few of my coworkers at Duke that have been there longer than 10 years have rarely seen anything similar. What this baby has is extremely rare and spontaneous, meaning something went wrong while the baby was developing all these organs. If/when I get pregnant again, I have the same chance to have a baby with these findings as I did this time: slim to none.

I had another ultrasound today because the baby is a little bigger and we thought we could possibly get closer to a name for what this baby has. I am a visual person and understand some people might need to see pictures to understand what I’m saying. I will post some ultrasound pictures with explanations to help. The liver, intestines and stomach are still outside of the baby in the amniotic fluid. The heart is too small to see if there are internal defects, but it remains in the abdomen and a part of it might even be outside the baby’s body. The arms and legs themselves appear normal at the moment, as well as baby’s face (although it is still early to see everything). The biggest change from the last ultrasound is the baby’s spine. The baby’s spine is curved into a C from the pelvis to the legs. The heartbeat is normal, but we will not see the heart structure until at least 18 weeks to see if there are defects. 

What does this mean? Well, it means we don’t have any concrete answers to anything right now. This is, in a word frustrating. At ANY point in my pregnancy, I could have a miscarriage. I could have a stillbirth. I could birth a live baby, only to survive a few hours or days. I could have a baby that survives everything but the multiple surgeries this baby will have. I live every day with a question mark in this pregnancy. I, the doctors and science do not have any sort of answer. Some people have asked if my clinic or the doctors made a mistake. My answer to that is a resounding no. We all are trained in this specifically and I could not be at a better practice. In fact, if I was at a different practice anywhere in NC, I would be referred here. Some people have questioned how early I am and maybe things will get better once the baby is older. My answer is no, everything that is outside of the baby right now is not supposed to be outside. The spine is not supposed to be this curved. The heart should never be anywhere but the chest. I am not too early to see that this baby has a lot of obstacles to overcome in its fragile life. This is obviously DEVASTATING news but Josh and I have faith in the goodness of God and we know His reasons are beyond anyone’s understanding. Don’t mistake our strength in faith to be strength in life, however. We still need daily prayers for strength and to get through everyday. I don’t know if it’s harder on Josh or me. Josh works in a place where very few people know the situation. I work at a place where every single doctor, nurse, sonographer, receptionist and genetic counselor knows something is going on. I work with pregnant women everyday and will soon start showing and fielding questions. But, I work at a very open and supportive environment. This is hard on us both.

The only thing we need right now are prayers. And lots of them. We need a miracle and that’s the only way the news will get better in the future. Even though my faith is strong, this is a hard thing for me to grasp, coming from a medical background. Science says there is no way the liver, intestines and stomach will resend back into the baby’s body. The heart will never move from the belly. The spine will not straighten itself out. God says different. My God is a God of miracles and I personally need all the help I can get in believing it. Please pray with Josh and I and this unborn life. Pray that we have any sort of peace in sorting this out because right now all we have is time. And we wait…and wait…and wait. I’m not going to sugarcoat what I feel throughout this blog and this pregnancy. I will share my struggles and my faith.

When the doctor talked to Josh and I today (this doctor is one of the best Maternal Fetal Medicine doctors in practice), she said the best case scenerio given a medical background is that even if the baby survives the MULTIPLE surgeries to get everything back into the body, fix the heart, straighten the spine, this baby might not ever walk or have a “normal” physical life. We are not sure of brain function this early, because the brain hasn’t even started much of its developing at 13 weeks. She told us that if we are being realistic, we probably shouldn’t set up a nursery because even if this baby survives, he/she will spend many many months at Duke hospital. I want to honor this baby the best way I can. This blog is one of the ways I thought of. If I get to the late second/early third trimester, I’d like to have a baby shower. I want to enjoy every day I have with this baby while I can. This baby’s heart is beating…this baby is a LIFE and I am honored to be its mother and Josh its father.

What I am asking anyone who reads this is to pray on our behalf BOLDLY to God, asking him for a miracle that only He can give.

Let us therefore come boldly to the throne of grace that we may find mercy and grace in time of need. Hebrews 4:16

Here are a few ultrasound pictures from today’s scan. I will caption below. 3-7-13_34              Just a cute picture of baby’s hand. One of my favorites. 3-7-13_80    There was not a great picture of the omphalocele (liver/intestine pocket). There is a bulge at the bottom portion of the baby’s body. That circular structure is the liver/intestines that should not be in the fluid. 3-7-13_73      This is the curved spine. It takes a 90 degree angle off to one side. 3-7-13_7      One of the cute pictures of baby’s face. Look at that sweet nose/nasal bone.

3-7-13_35      This is not your typical look to a 3D. I got lucky and got my ultrasound the week we got two new machines. Look how real it looks!

3-7-13_37   People that can read ultrasounds might notice the baby’s thighs/pelvis coming out at them. That’s due to the 90 degree angle of the spine. The legs are sharply off to one side.

This may help some people, this may confuse others. Like I said, we may know a name for a diagnosis in the coming weeks, for now I don’t want to speculate. Take this at face value: none of this is good news. Thankfully God is very good.

In His grace,

Rebecca and Josh

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77 thoughts on “An unknown answer to very difficult questions

  1. Rebecca and Josh…I know the 2 of you do not know me, I am one of Sharon’s sorority sisters. I want you to know that I am praying for you both and your sweet baby. I pray that God hears our prayers and works his miracle to heal your sweet baby. I pray for strength for all of you to get through the tough times you are currently facing and the tough times ahead. I pray that God continues to give your baby the strength he/she needs to grow and develop and conquer the obstacles ahead. Please continue to keep us updated on the baby’s progress. If I can do anything for you, please let me know. A mother’s love starts from the moment you find out you are pregnant, that love is indescribable. Sending lots of love and prayers your way. ❤ Adrian

  2. We will remember all three of you in prayers. God is the God of miracles! You clearly know that already. Stay strong in The Lord. He is your strong tower. I have a beautiful song for you to listen to. Go to YouTube and put in “peace if God cover me” by Mark Condon.. Beautiful song!

    Take care and I will keep following your blog.

  3. My daughter in law Crystal sent this to me and I have probably met you through she and Cris. You sound like a woman strong in her faith and indeed it will take a miracle but I saw my son recover from brain surgery and a burst aneurysm , so I also know God is a God of miracles. I will pray for your strength of spirit and mind and for your precious baby!!!!

  4. Thoughts and prayers are definitely with both of you. I don’t know how to read an ultrasound picture, but I can see the deformities. I am on my fifth pregnancy, three were miscarriages. My aunt has spina bifida. I watch a lot of discovery health. I am a firm believer that if you have faith in God, your baby will survive and maybe even over come some the obstacles he/she will need to over come. Technology has advanced in so many ways that even my cousin at only 24 weeks had a baby boy and he survived and has met all his milestones without any problems. He is even bigger than his two old sisters. I believe, I know you believe. God is with you.

  5. HI! I’m friends with your cousin Rebekah and her husband Aron. I am praying for you, your husband, and sweet baby! I really appreciated your honesty, especially your comment about honoring your baby and celebrating her life. I miscarried one of my children and during my pregnancy people we’re cautious and said I shouldn’t get too excited or celebrate too much because I could miscarry. They could not be more wrong! I was gifted with carrying a precious life and even though I never got hold my baby or see her face, I praise God He honored me with her, even if for only a short time. Thank you for pointing out you can have great faith and still grieve and be upset, thank you for your honesty, thank you for sharing. I wanted to leave you some verses that helped me: Psalm 139; Psalm 94: 17-19 and also, I found good Christian music helped me greatly, sometimes just reading through the “comfort” section of the hymnal was an encouragement and blessing. I will pray for you daily!

  6. I read this blog from a frend’s facebook posting. I will pray for you and the baby. God is still in the healing and miracle business. I know a young couple who were given the same news about two years ago. They were urged to abort. They prayed and so did many others. The baby’s organs moved to the correct place and the fluid levels became normal. The result is a healthy, active 15 month old boy. They are pregnant again and will have another boy soon. Trust in the Lord. “My grace is sufficient for you. My power is made perfect in weakness.” 2 Corinthians 12:9.

  7. My name is Crystal (Bullock) Blease. I went to GCA & graduated with Daniel. My family & I will be praying for you and your precious little one. Each life is precious & God always has a plan, even when we can’t see it. “When you don’t understand, when you can’t see His plan, when you can’t trace His hand, trust His heart”.

  8. Rebecca and Josh, My daughter Allie Bullock, is a friend of your sister Katie. Our God is a mighty God! Your walk in faith, I am sure is making him very proud. Thank you for sharing your story and will be praying for you both and your extended families. ..Laurie Bullock

  9. Love that picture of our sweet niece or nephews hand! Sweet baby! We will continue to pray for you and hope for a miracle for your growing family. If there is anything we can do for yall – please dont hesitate to ask. That is what family is for – not just in the good but in the bad as well. It breaks our hearts you have to go through such heartache – but know you are not alone. We love the three of you so much!

  10. Rebecca and Josh, I went to school with Jamie Guess and I read this off her page. As I sat here reading your blog I am bawling my eyes out with a healthy baby girl sleeping in her room. Hearing this story and hearing stories of couples like you makes me realize how much you take for granted life itself. You and your husband will be in my prayers every morning and night. GOD has created this special unborn life and he is in full control!

  11. Rebecca & Josh- My prayers are with you and Baby. I believe in miracles and know our Lord Jesus will make your little one a precious little MIRACLE. The world needs more people like you Rebecca & Josh. Will put you on the prayer list at church. Bless you both

    • I learned of your family through prayer requests by Justyn Knox, a former student. You are in my prayers. Let us join in telling the mountain to move!

  12. As a mother who is currently expecting my 6th child, I can’t imagine the uncertainty that you are experiencing but as a Christian I will stand in the gap for you and your husband and pray. I pray for your strength and I pray for that sweet little life that is growing inside of you. Our God is still on the throne and he is a miracle worker.

  13. I was a preschool teacher before I retired.I had a little girl that was kinda like your baby.Her intestines were outside of her body when she was born.She had surgery a day or two after being born & now she is a normal healthy 13 year old.I hope this will give you some encouragement along your way.Prayers for everyone that all will be well with this baby!May God bless you!

  14. I’m pregnant right now too, and I can only imagine the heartache that you and your husband must feel! God is in control!–It’s the only thing that you can hold onto right now! He will never give you more than you can hold…with His help!

  15. Rebecca,
    I am so sorry to hear of the struggles you are going through. I know we haven’t been close for some years now, but my heart breaks for you and your family. I know you have been through more than most, so I have to believe there is a greater plan, even though we may not understand it right now. Your story is inspiring and I know that good will come from this, rather in research, discoveries, or a miracle. I am truly in awe of your strength and wish for you peace and comfort as you continue to carry this beautiful baby. Thank you for sharing and please, please let me know if you need anything. I’m just down the road and could join you for dinner one night.

    Take care. We will all continue to send prayers up!

  16. Dear Rebecca,

    My family and I are praying for a miraculous healing for your sweet baby, and we are also praying for the Lord’s peace that passes all understanding to come upon you and your husband during this time of great need. We are friends of Cris and Crystal Ugolini, and I saw your blog on her facebook wall.

    Wanted to leave you with the following scriptures:

    Let us therefore draw near with confidence to the throne of grace, that we may receive mercy and may find grace to help in time of need. (Heb. 4:16)

    And looking upon them Jesus said to them, “With men this is impossible, but with God all things are possible.” (MT.19:26)

    Jesus said to him, “If you are able (to believe), all things can be done for the one who believes.” (Mk.9:23)

    In Him —

    Ashley

  17. Josh, Rebecca, and sweet baby Shrader, We are all praying for you here in Ohio. You are so right that God is so much bigger than any of this! It may seem impossible, but God is the master of POSSIBLE!! I’ve seen HIM work some amazing miracles for our family!! We love all three of you so much and if there is anything we can do, please ask.

  18. Josh and Rebecca,
    My heart goes out to you and will pray for you. God has a bigger plan than we can imagine. May God give you comfort and strength. If you are Kimberly’s cousin I think I remember you…..I grew up with Kimberly.
    Prayers and Love,
    Christina (chrissy) Knight

  19. God has chosen you two as parents because He knew you would love this unborn one. Being loved is the greatest need of all. You are loving this baby and will love this baby whether life or death is the next step. I applaud you for your courage and your course of action to continue the pregnancy even though I am sure the medical world has offered other options. My heart goes out to you. Bonding and letting go at the same time are the most difficult of tasks. We are ill equipped. But the Lord promises His presence in your joy, in your suffering, in your uncertainty, in your anticipatory grief, in your shock, in your anger, in your acceptance. Is He giving and taking away if the baby does not survive? Children are a gift of the Lord as the scripture says. But, really, they are on loan. Parents of healthy or handicapped children all face a common challenge and that is the challenge of surrender. The God who, in love gave a beating heart to this child, alone knows the outcome of the coming weeks. Broken bodies are a part of the broken world we live in. I do not believe He caused this brokenness, but rather allowed it. May the Holy Spirit comfort you on this most difficult journey. May the Lord bless this beautiful unborn one with a sense of well-being for now, a sense of security and acceptance although imperfectly formed, a sense of Your presence.
    Father, touch this baby. We ask for a whole and healthy baby – able to fully function. We surrender all that we have, all that we hope for, to You. In Jesus’ Name.

  20. I will pray for your baby, husband and you. Put all in Gods hands, he will show miracles that only he can. I pray for a healthy baby, for God to give you strength through this chapter in your life. God bless you all.
    Vickie Sorrell
    Durham, NC

  21. A friend of a friend of yours (I think) passed your link along to me, knowing I too have been through very hard unknowns with my children. I don’t want to make this about me, but just let you know you aren’t alone and my heart breaks with and for you. We had twin boys 4 years ago, who appeared healthy after a complicated pregnancy (i, too, had doctors discourage me from setting up a nursery early on), but then they began having horrible seizures the second day of life. Our son Warren died at 19 days old due to a nursing error (she gave him his oral medication into his IV) and John came home at 3 months old. He had seizures through 9 months of age but is a huge miracle…now seizure free and medication free! We did later found out (After so many tests, doctors, invasive procedures, etc) that he has a genetic mutation and mitochondrial disease, but he is STILL beating all the odds and we also believe our God is a GOD of MIRACLES! We will pray for MIRACLES for your sweet child. Regardless, you and your husband have brought a soul into this world who is created for ETERNITY. Praying for you. PS I’m glad you’re blogging…was and has been so cathartic for me and a great way to get prayer updates out. And I hope you feel ZERO pressure to respond to me or anyone else!

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