To our Cora on her 5th birthday

Dearest Cora, It’s been five years today since we held your body; your soul already residing in Heaven. It feels like a whole lifetime has passed since you’ve been gone. Your dad and I are completely different people after you. … Continue reading

Tiny white caskets and legacies

“Grief is the last act of love we can give to those we loved. Where there is deep grief, there was great love.” Since Layla, we’ve visited and laughed with friends for hours. I found myself in the grocery store … Continue reading

Because there had never been anyone like you…ever in the world.

Since our last blog post, we had a meeting with Carolina Donor Services about what Layla qualified to donate. We found out she qualified to donate her heart, kidneys, pancreas and lungs. All of these organs would have gone to … Continue reading

Preparing for Layla

I am currently 29 weeks pregnant. The day I delivered Cora, she was 29 weeks 5 days old. This thought is with me every day at work; it’s with me every time I go a few hours without feeling her … Continue reading

The worst kind of deja vu

I truly can’t believe I’m about to write this again. We have devastating news regarding our current pregnancy. Last Wednesday, I had an official ultrasound and the doctor was able to confirm my fears. Our baby is going to die. … Continue reading

Surprise!!

79Shrader (2)

We are very excited to announce our bundle of joy coming June 27th, 2014!!! No, this is not the adopted baby from Ethiopia…I am pregnant!

God has given us so many blessings, more than we deserve and we are just ecstatic to share this news with you all. We are continuing the adoption process, as adoption is not a back-up plan or a second choice. It is a first choice and both children will be equally loved and prayed for. We are so early in the process and it will take at least 18 months from now to receive a referral. We have to wait until our baby is 6 months old before we travel and that is the only preference our agency stated when we told them our news. We will most likely be bringing a baby/toddler to Africa with us to meet our Ethiopian babe.

We have also decided NOT to find out gender. It’s what we wanted to do with Cora, but with all of her complications we didn’t feel it was necessary. I have been somewhat anxious about this pregnancy, probably to no one’s surprise after Cora, but God has given me a peace about pregnancy in general. We left this pregnancy up to God’s timing and we are just overjoyed. We waited a little longer to tell family and friends and now the world and I am about to burst with the news! I am about 14 weeks, so I am still a little anxious about scanning myself at work. So far, everything looks fantastic, but we still have our anatomy scan at 17-18 weeks. We would appreciate any prayers for a healthy child and prayers to ease anxiety. I’ve never had a healthy pregnancy, so I feel like everything is new. We did not get to announce our pregnancy with Cora, since I found her complications at 10 weeks. It was more of “We’re pregnant, but…”. God is not good now that we have a healthy pregnancy…God has and always will be good regardless of our circumstances. Thank you for sharing in our sorrow and please join us in our rejoicing!

In Him,

The Shraders

James 1:17 Every good gift and every perfect gift is from above, coming down from the Father of lights with whom there is no variation or shadow due to change.

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