Introducing: Shrader party of four

DSC01492

I know what you may be thinking…no, I’m not pregnant. BUT, Lydia is going to become a little sister to a 3 year old BIG BROTHER! We have received and accepted our referral just this week! This happened A LOT sooner than we were expecting, judging by the number that we were given on the list of waiting families. We were warned sometimes this happens due to our qualifications (how old the child is, how many we are approved for, special needs) and we could bypass some families waiting on the list for infants.

Honestly, when I got the phone call at work that we could have a child if we accepted him, I was pretty overwhelmed. I didn’t know the timeline for travel and thought we may have to leave immediately. Were we ready? This little boy is 3. We have never raised a 3 year old, nor a boy, and this was a whole new world. We’ve obviously considered this likelihood, but theory and practice often require a different approach. We accepted this referral on Monday after much prayer, deliberation, and talking to many people in our lives with good advice. And honestly, this was probably one of the most stressful weeks of our lives. We had made up our minds that this phone call would come in mid Spring 2016. It was unsettling to jump the timeline up by 9 months, but that’s kinda how these things work.

We are excited, for sure, but we are also overwhelmed, nervous, and scared now that this adoption has taken the next big step toward reality. Its been a far off notion for so long. We’d set the ball rolling and have plenty of time to prepare. Well, we are rolling now. We are about to become parents for the 3rd time to a 3 year old little boy from another country who may have all sorts of special needs that adopted kids typically have. Are we ready?

Adoption is totally a Gospel concept. We, as sinners, can be overwhelmed by the notion of giving this little boy a home but nothing we’ll encounter will surprise God. He has woven this little boy’s story to include us as his family and that brings us immense joy. There will be hardships in the coming years, so please keep us in your prayers.

We have committed to doing this adoption with as little debt as possible, and so far God has blessed us to be able to do that. We still have about $25,000+ left to finalize the adoption of this little boy, including round trip plane tickets to Ethiopia for 2 separate trips, lodging for two weeks, transportation, food and paperwork fees. We have saved enough money to cover most of this next wave of expenses, though there are expenses and eventualities after the adoption that we haven’t paid for.There may be medical costs for any special needs he may have, clothing/toys/carseat expenses, counseling care for him as he’s grows and asks tough questions. On top of those, the loss of income associated with helping get him adjusted to life in the States by staying at home with him. When we told family and friends this week, the first and most frequent question we got was: “what can we do to help?”

First is prayer. Pray that we exemplify the gospel throughout the rest of this process. That we would live out all those things that Christ and His word have taught us. Pray for the health and well being of this little guy who’s world is about to change. Pray for the process and people involved that everyone would act in the best interest of the child at all times. We don’t ‘want’ to adopt, because it means that kids are out there growing up without birth moms and dads. Way better to have no orphans so no need for any of this, but the reality of a sinful world is that we need to care for those who can’t care for themselves.

Besides covering us in prayers, we would love it if we could get people to donate to our Lifesong account. To donate, click the link in the prior sentence to donate via PayPal (3% of your donation gets taken out) or send a check to Lifesong at Lifesong for Orphans, PO Box 40, Gridley, IL 61744. 100% of the check goes to our adoption account and checks should be payable to “Lifesong for Orphans”. In the memo, put Shrader adoption account #4591. We currently have over $700 and if we receive $1,300 more in donations into this account, our church will match our account with a $2000 adoption grant. This would help us tremendously with expenses incurred in country and after the adoption. If you can’t donate money but would like to help with physical needs, we would also love any hand me down clothing, toys, etc (whatever you need for a 3 yr old boy). He will have his own bedroom (currently our guest bedroom) and we currently have a bed, but not much else.

This referral has taken us by surprise and neither of us dealt well with that. I know eventually we will come around to that gung-ho attitude about it, but we’re still adjusting to the shock. Yet our God is a good God and He will provide us with everything (and more!) that we ask. Right now, we’re in the planning stages and there is A LOT to plan in the coming months. As far as our timeline goes, we will be taking two 1 week trips to Ethiopia when we get our court date. We will most likely be traveling in about 6 months (March) for the first trip to meet him and to go through their courts to get legal guardianship. Then we will come back to the States for a couple of months and take our 2nd trip (May) for a week to go get his exit visa and leave the country with OUR boy! Most likely, we won’t be taking Lydia with us which is a devastating thought to me. I know she will be either with our family or friends and will be taken care of, but we have never spent a night away from her so a week will be horrendous without her. However, the idea of juggling 2 toddlers on a 14 hour international flight gives Josh a bit of a wild eyed look, so a week with the Grandparents or cousins might be better for all parties. Please pray for our hearts as we make that decision.

I cannot at this time show you a picture of him or tell you his name, but I can assure you he is ADORABLE. Everything can change in an instant, Ethiopia could shut down and out of respect for his privacy these are the only details we can tell you. He’s a boy, he’s a little over 3 and he has been in an orphanage for 2 years of his life.

These are some prayer requests/physical needs we have going on at the moment:

  • Pray for this little boy who is without a family in an orphanage. I don’t know when they will tell him about us, but he has already gone through immense trials not having a family. Going to get him will be so scary for him, because we are all strangers. We’re taking him to a foreign land with foreign people, food, customs and even language.
  • Pray for our hearts that we focus on the Gospel and parallel our being adopted in Christ’s family to this experience. It may be the hardest trial we’ve ever had to go through.
  • Pray for Lydia that her little mind will eventually understand this is a great thing for her as well. She loves kids, especially older kids, so I have no doubt she will love her big brother immediately.
  • We would love to get $2,000 in our Lifesong account so that we can have it matched for expenses after the adoption.
  • We could use material things for a little boy: clothing (3-4T), shoes (not sure size yet), toys, books, carseat, etc. We would definitely accept hand-me-downs (except for the car seat). If you personally don’t have any, please share our need with friends/family because they may have hand-me-downs. We would also take brand new clothing and shoes as well if you feel so inclined.

Finally, we just want to extend a thank you to all our family and friends who have supported us through this process. You guys have enabled us to be bold about our faith and about the importance of adoption and orphan care. Thanks especially to our church family for having a heart for adoption, answering our many questions and leading by example. I know we wouldn’t have made it to this point without all of your help and support.

James 1:27 Religion that God our Father accepts as pure and faultless is this: to look after the orphans and widows in their distress and to keep oneself from being polluted by the world.

We love you guys.

Josh, Bec, Lydia, and #4 (coming soon to a venue near you)

Scary finances

Folks, adoption is expensive. Not just expensive, but we could buy a really nice car for what we are spending on this adoption. Every country, including the US, has different fees and they all add up to tens of thousands of dollars. That being said, we are hardcore fundraising starting NOW. We racked up over $4,000 in scarf sales through my Etsy shop last year (visit the shop here) and will be attempting to raise more funds through the store this upcoming fall. We will be brainstorming more fundraising opportunities, such as designing T shirts to sell, BBQ/pancake/spaghetti dinners, adoption yard sales, etc and we are also going on a relatively tight budget in case we don’t reach our fundraising goal by the time we fly to Ethiopia. We know the enormous cost of an adoption and while we believe God can move mountains and 100% fund this adoption through other means, we are willing to sacrifice a good amount of our savings to bring this child home. The one good thing about being on a waiting list for years for a referral for our particular country is that we have all that time to raise funds.

We have also been approved for a matching grant through The Summit’s Orphan Care Ministry. If we raise at least $2,000 through online/check donations via Lifesong, our church will match it. WE NEED YOUR HELP TO DO THIS. Lifesong is an organization that exists to help adoptive families fund their adoption through grants and interest-free loans. Here is how to give to our matching grant fund:

 PLEASE NOTE THE SUPER EASY “DONATE NOW” BUTTON VIA PAYPAL AT THE TOP OF THE BLOG

GIVE BY CHECK: 

Please make check payable to Lifesong for Orphans

**In the memo please note your gift preference with our family number #4591 and Shrader family.**

(if you don’t put the memo, we may not get your donation)

Please mail checks to:

Lifesong for Orphans

PO Box 40

Gridley, IL 61744

GIVE ONLINE:

Go to: www.lifesongfororphans.org/give/donate

Click: Give to an adoptive family

Complete online form and fill in #4591 in Acct # and Shrader family in Family Name fields

**Please note that PayPal will charge an administrative fee (2.9% + $.30 USD per transaction). Your donation will be decreased by the amount of this fee. Individual donations $250 or more and yearly donations totaling $250 or more will receive a tax-deductible receipt. Receipts for donations under $250 will gladly be sent upon request. Lifesong is a 501(c)3 tax exempt organization.**

Our fundraising goal date will be September 8, 2014.  However, our account remains open and donations will be accepted until our child is home or adoption is complete – whichever is later.

In an effort to be transparent through the adoption process and honest with people donating to our fund, we have included a breakdown of what we have already paid and what we owe. We have currently raised all of the money for the expenses so far from the Etsy shop and donations. Here is the breakdown:

All fees below are paid and taken care of:

Homestudy: $1500

USCIS Immigration/Fingerprints: $900

Agency application fee: $250

Agency fee upon application acceptance: $2,667

Miscellaneous fees (mailings, notarizations, homestudy fees, dossier fees): estimation around $300

TOTAL we’ve raised so far: $5, 617…which is AMAZING

All fees below are yet to come:

Agency fee at completion of home study: $2,667

Agency fee at completion of dossier: $2,667

Homestudy update fee (after birth of new baby): $800 plus costs of background checks and fingerprints

Dossier fee: $625

USCIS application fee after referral: unsure

FedEx account to send the dossier to Ethiopia:  $345

Crossings training: $200

Referral fee (1 child): $12,000 ($8,000 each additional child)

Foster care fee: $750

Airfare for two trips to Ethiopia and back (at least 4 adult round trip-maybe 1 child, 1 child one-way): $9500

Hotel accommodations (2 1 week stays): $700

Parent visas: $80

Transportation in Ethiopia: $500

Adopted child’s US Visa: $230

Food (per person): $200

TOTAL: $31, 264

I’m going to be honest here. Looking at that number almost gives me a heart attack. Adoption is definitely a God thing. The waiting is difficult, the cost is enormous and the paperwork is a bear. Being obedient to the Word means caring for the orphan. This does not mean every believer should adopt or foster. Caring for the orphan could mean helping fund an adoption, supporting adoptive families in your church/community, joining the Big Brother/Big Sister organization, being a guardian ad litum, etc. We are very blessed to have a church community that emphasizes orphan care with our Orphan Care Ministry, because we realize a lot of people go through this process alone. If you are reading this and realize you are not in a position to adopt, please consider helping to fund our adoption and/or pray for our process. It takes a village to raise a child and you can be a part of ours.

 

In Him,

The Shraders

The Dreaded Dossier

I knew a dossier was an official document related to international processes before we began the adoption process. I did not know if we would be required to complete one for our adoption, nor did I know how much stress this one word could place on a person. I heard about all the paperwork involved in completing an adoption, but I thought it would be integrated with our home study (which, thanks to our case worker and agency, was a complete breeze). Turns out, every international adoption requires a dossier. The purpose of this post is to answer  questions about our place in the process, and hopefully clue in any potential adoptive parents.

The domestic adoption process is significantly different from the international process. There is a similar home study (pretty much every detail of your childhood and marriage/relationship/child rearing skills), but you may have to write it yourself, depending on the adoption agency. From our limited experience, this seems to be a fairly different process for domestic than international. For a domestic adoption, you collect pictures of your family, your house, likes/dislikes and put them into a book for the birth mother to look through when choosing families. In our home study, we had forms to complete but our case worker met with us three times to help fill out our biographies and write about our relationship and home environment. That written study is then submitted for approval. Once approved, there was no biography picture book for us to fill out, just the dreaded paperwork. Contrarily, completed homestudies for domestic cases can then move to agencies to be potentially paired with a child.

After reading of some requirements from countries other than Ethiopia, I realize we may actually have less paperwork. We have lots of documents that have to be originals, some we have already collected for our home study that we have to obtain and complete again. Almost all of these forms have to be notarized and most have to be original “certified” copies. Looking at the list, I have a mini panic attack, but we soldier through and have been steadily working through the list, checking off forms one by one. I want to take my time, ensuring we do it correctly the first time, as it can delay the whole process. Then the tricky part comes in; all forms have to be no more than 6 months old at the time of submission. Some of the forms leftover from the home study have exceeded that time frame by now. Which means we have to obtain them a second time. It is an all-together frustrating and stressful time of the adoption. However, this is the bulk of the pre -child paperwork for our adoption. There will be paperwork in the future, but not this much and not at one time.

I’m trying to step back, breathe, be as organized as possible. Take it slow instead of rushing to get it all turned in, like my Type A personality would usually approach tasks. Adoption is a challenging process for everyone, period. It’s a lot of politics, paperwork, and emotions all wrapped into a helping a child. Since we don’t have a referral for a child yet, so we don’t have a specific person to focus our motivation on. We constantly need to remind ourselves that this is worth it. All the stress and red tape is worth a child’s life.

In our particular situation, the fact that I could go into labor any minute adds to the already stressful circumstances. Getting the nursery ready, having showers and working full-time distracts us from completing a good amount of the paperwork. Finding time is difficult. Most of the documents we’re waiting on are ones  we have to send off or complete during our work hours. This is awkward to manage while I save up time-off for maternity leave. Our goal is to get everything in by the end of July, within our 6 month window for most of our paperwork, the homestudy particularly. If you’re reading this and you were considering adopting, it’s important to read and consider the necessary steps before you make a huge commitment like this. If I hadn’t had friends that just went through the process and a church family with answers, I would be incredibly lost.  I felt it could be helpful to others to compile a list of all of the paperwork we have to complete for the dossier:

Note: This is for our agencies, foreign and domestic, and Ethiopia, not a comprehensive universal all situation/countries list.

1. Letter of intent: This is a letter, written, signed and notarized to the Ethiopian authorities stating why we are adopting, why Ethiopia and what kind of life we can provide for a child here in America.

2. Original, certified birth certificates: Normally, this wouldn’t be a problem, except for the fact that I was adopted by my stepdad and have had to track where they keep my birth certificate.

3. Original, certified marriage license

4. “Good Conduct” letters from the Local Police Department: This is a signed and notarized local background check from your hometown. (This is after doing a national background check, with fingerprints…twice, and a state background check.)

5. Original medical report: This is also notarized by a doctor during a physical exam. The agency sent us a pretty general form to get them to fill out.

6. Two original copies of our home study, which also have to be notarized.

7. USCIS approval (I-171H): This is our immigration approval. We had to fill out paperwork and get fingerprinted for the second time, to be approved to bring a child into this country.

8. Letter of employment verification stating hours, compensation and years work signed and notarized for both parents.

9. A letter from our bank stating we are in good standing with them, signed and notarized.

10. A financial statement form signed and notarized: This is a standard form the agency sent us to find out our debt-income ratio.

11. Letters from each health insurance agency stating we have a policy.

12. Letters from our life insurance agency stating we have policies on all members of the family.

13. Three letters of reference: We already turned in three letters of reference for our home study, but these should be new. They should be from friends and family favoring our position to adopt, also notarized.

14. Obligation of adoption-reporting commitment: This is a standarized form the agency included for us to sign and get notarized.

15. Three original Power of Attorney forms, signed and notarized.

16. Color copies of passports

17. Passport photos of both parents

18. Tax returns from past 2 years. 2012 and 2013 for us

These are all the paper forms we have to include and send to our agency through Fed Ex, who then sends it to the Ethiopian agency’s US headquarters (West Sands), who then sends it to Ethiopia. If we have even a small, minuscule mistake they will send it back to us and our referral will be delayed that much longer. Once the dossier is approved, we are then in the looooooooooonnnnggg waiting period for a referral. Waiting for a referral for a child can be anywhere from one to two years, provided Ethiopia does not close to international adoption (see Russia, Congo, Guatemala).  I’ll refer to this time as the “raise as much money as humanly possible for our waiting child and try not to freak out” period. Essentially, we may be driving everyone crazy with our fundraising ideas (more on the cost of our adoption and how we’re financially planning to conquer costs in a later blog post).

If the process so far sounds overwhelming and stressful, you understand our pain. If it doesn’t sound overwhelming, dive right in and show us how it’s done. Top that with a new baby (any day now) and two full-time working parents and our stress level is through the roof. But, this is such a small amount of our lifetime joy with this child. This paperwork will bring a child with no family to love and care for them, into a loving and caring home. This process will hopefully show this child, as well as others around us, what lengths God went to for His children and the beauty of the Gospel. I am stressed, yes, but I am also excited and nervous to enter this new phase. I feel like once we begin the waiting process, we are officially adoptive parents. That referral means a new member of our family and that is worth every bit of stress.

In Him,

The Shraders

dossier

We are adopting from….

adoption

 

That’s right, folks. We decided on Ethiopia about a month ago and thought of a cute and fun way to announce it via a photo shoot with the lovely Sara Davis of Sara Davis Photography. Here is the link to her wonderful blog: http://saraedavisphoto.com/life/rebecca-and-josh-adoption-announcement/. I have known Sara for a while, even before she started her photography business, when she took some pictures for my best friend’s wedding years ago. She is a wonderful person and very generous (she gave us this photo shoot!). She originally wanted to take maternity pictures when I was pregnant with Cora, but the timing never worked out. She offered to take pictures just for us, and I thought…why not use this opportunity to tell everyone about our adoption?

 

We are currently in the VERY early stages of our adoption to Ethiopia. I’ve had a lot of questions, but the main one is “now what? what’s next?”. Now, we continue to fill out massive stacks of paperwork, write checks to our agency and wait. We are currently almost finished with our home study (we have our last meeting scheduled in one week). Once that is finished, we have to sign some agency agreements and get started on our dossier. “Dossier: when used in the context of adoption, this term refers to a set of appropriately authenticated and translated legal documents which are used in international adoption cases to process the adoption of a child in its own country by the adoptive parents, or for the adoptive parents to obtain the legal custody or guardianship of the child in the foreign court, so the child can be brought by the adoptive parents to the United States for adoption.” This is the massive paperwork I was referring to and this will allow us to adopt in Ethiopia once it is accepted. After the dossier, we wait for at least a year before we get a referral. Once we have the referral, they check the child’s family background to make sure the child is the definition of “orphan” by poverty or by death (meaning they have no relative willing to take them in). We then travel to Ethiopia for a week to meet the child and go to court. We then have to leave the child in Ethiopia, fly back to America while they process the visas and fly back for a week to pick them up and bring them home.

 

We have to be somewhat specific in our dossier for age, gender and medical needs of the child we are adopting. Right now, we are not preparing for a specific gender and we would like a child under 5 years of age. We also have to decide if we would like to adopt a child who has been tested HIV+ or not and are undecided. As Sara said in the blog and from the information I gave her, Ethiopia has one of the highest orphan populations than any country in the world. The children have mostly been orphaned due to parental death from AIDS. Here are some extra facts about Ethiopia:

 

  • The Federal Republic of Ethiopia is the second most populous country of the African continent.
  • The economy in Ethiopia heavily depends on agriculture, which in turn relies on precipitation. The country is marked by a negative trade balance: the volume of imports is roughly three times that of exports. Coffee beans remain the most important Ethiopian export commodity.
  • Ethiopia is one of the poorest nations in the world. The country’s Gross Domestic Product (GDP) per capita is roughly 1/135 that of the United States.
  •  On average, Ethiopians have a life expectancy of only 54 years. Nearly two-thirds of Ethiopia’s population remain illiterate.
  • Almost half the country’s population is undernourished and 39 per cent face a life on less than 1.25 US dollars a day.
  • Ethiopia has only 3 medical doctors per 100,000 citizens, one of the worst figures in Africa. Only one in three Ethiopians have regular access to potable water and the sanitation coverage is very limited.
  • Demographically speaking, Ethiopia is a very young country: around 45 per cent of its population are less than 14 years old.
  •  The country’s infant mortality rate is at a staggering 109 per 1,000 live births – one of the highest in the entire world. Only 6 in 10 births are attended by skilled medical staff. An estimated 830,000 children in Ethiopia have lost one or both of their parents due to AIDS.

 

The reason I give all these facts is to show what drove us to adopt internationally. We had a VERY hard time deciding between domestic (adopting kids currently in foster care) and international adoption. The deal breaker for us is that a lot of children, who are adoptable through the foster care system are not usually healthy, or under 5 years of age. We know we were not ready to parent a teenager, much less one who may have behavioral, developmental, medical or all three issues. I think in the future, we will consider adopting through the foster care system a little more seriously. For now, we both work full time and will continue doing so after adopting. We know we don’t have the resources for fostering or adopting through the system. It’s not that the child would not be right for US, but WE would not be the right parents for the child. We decided not to adopt a baby domestically, because there is a long waiting list and we decided it would not be fair for us to take a spot on the list, since we are able to conceive on our own. Josh also helped me decide international adoption by saying that kids in America, while it is a very tough life, will live to see their 5th birthday. Internationally, that is often not the case. American orphanages, as in receiving state funds,do not exist like there are around the world.  Once we decided international, this decision became easier.

 

We eliminated all the countries that had more than a 2 week travel time, as we both work and I needed to save weeks up to spend time with the child when we got back. This eliminated a bunch of countries. Other countries eliminated us. China (Josh’s heart was set on it) required $80,000 in net worth, among other requirements, that we did not meet. Haiti (both our hearts were set on it) required we be married 10 years and one of us had to be at least 35 years old. Countries make their own adoption requirements and some are very lenient, but others are stringent. Here is the website that lays out the country requirements for adoption. Travel, time and country specific requirements did most of the narrowing down and that left Ethiopia. I’ve had a heart for Africa after reading Kisses from Katie and after friends adopted through Uganda. I was ecstatic to find out we could adopt from Ethiopia. I’ve heard what a heart-wrenching situation the country is in at the moment. Ethiopia is not a Hague country. *The Hague Convention is an international agreement to establish safeguards to ensure that intercountry adoptions take place in the best interests of the child. The Hague Adoption Convention applies to adoptions between the United States and the other countries that have joined it*. This means that they can shut down adoptions in the country at any point in time because of suspicions of corruption. All it takes is one family or one incident to cause all other adoptions to be put on hold. This is currently happening in the Congo. That is a very scary prospect. Adoptions can then be dragged on for years and years when this happens.We have to trust in God that if this does happen, He is working in it for His good.

 

We see a long road ahead of us for the adoption. The minimum time it will take to get a referral (not go to the country) will be 18 months. That is a long period of time to wait with no word. We are ready, though. We have prepared hearts for the long, possibly tragic road ahead of us.  We are not adopting to replace Cora or because it is a trend. We are adopting because we were adopted into God’s family and He commanded that we take care of orphans. We are following His call and are preparing our hearts. We love talking about our adoption, or adoptions in general! We have several friends and church families who have adopted. Please contact us with any questions you may have, especially if you are considering adoption. We are very blessed that our church has a mentoring program to match us with other families who have gone through the exact process or agency we are with. We know how important that wisdom can be. We are excited…nervous…apprehensive…ecstatic…joyful, you name it! We cannot wait to bring this child or these children home!

 

In Him,

 

The Shraders

 

PS. Here are a few pictures that were not included in Sara’s blog that I love:

53Shrader[1]   29Shrader[1]

28Shrader[1]15Shrader[1]

64Shrader[1]05Shrader[1]

74Shrader[1]

It’s my birthday, buy a scarf…support an adoption!

Yes, this is me shamelessly endorsing our Etsy shop. I’m turning 30 today and even though everyone says it’s the “new 20”, I’d like to move on to new and more exciting. 29 was a rough and exciting year for me personally and it included the decision to adopt! We have met with our social worker for our 1st home study meeting of three meetings. We are also waiting for acceptance into our agency and the country we’re adopting from (TBA soon) and wait. And wait. And wait some more. We have learned that process of acceptance and waiting will cost us around $5,000 + so just within the next couple of months so….we need your help. Please buy scarves. Lots of them…for gifts and for yourself, for Christmas, ski trips, photo shoots, anything. Until we get a Lifesong account and the little DONATE NOW button on our blog, that’s the way we have to raise money. Don’t worry about scarves getting sold out, we have some already ready in inventory and I will relist items as they sell. And, guess what? There are now CUSTOM ORDERS available! There will be a custom order listing for the Cora Chain and Ashley Chunky Infinity scarves, you can buy it and pick a color listed, or send me a message BEFORE you buy the listing to request a color not shown and I can let you know if I can find it. Also, if any of you have purchased a scarf, I would love some feedback. It makes my shop look more “legit” and I like to hear back from customers! So far, I have sold 61 scarves! I am so amazed and excited by this. I never imagined I would sell more than 5 scarves when I first started the store. We have raised a great amount of money for our adoption so far, but unfortunately it is still a drop in the bucket for our $30,000 + adoption. We will continue to be creative, instead of just asking for donations (although that will occur too). Thank you to all who have purchased!!

Buy a scarf, help bring home a child.

https://www.etsy.com/shop/RememberMyChains

                                chain wheat green mustard

In Him,

Rebecca Shrader

Cora Kimberly Shrader

I went into work on Monday July 1st to do as I always do, scan myself and check on sweet Cora. As I started scanning myself, my heart stopped after I realized her heart was no longer beating. I couldn’t believe it; I’d had this moment of fear several times throughout the pregnancy but her heart was always beating and she was always wiggling on the screen. I scanned her the previous Friday and saw her heartbeat and watched her move. I asked a coworker to come scan me, as I was trembling and needed confirmation. She confirmed the worst and as we both started tearing up,  she stepped out to get the doctor. Up to this point in my pregnancy, I thought no matter what, I would be getting a C section. I knew there was a chance for a classical C section because she is so small, which would mean only C sections for my future pregnancies and a much longer recovery time. She suggested that I have an induction of labor instead. Not only was this a change of plan, it was scary. Not only did I just lose my daughter and Josh and I would not hold her alive, but I had to go through labor. I was not been prepared for this, but I trusted the doctor more than my fear and headed home to wait until I could have a room around 4pm. Josh left for work before I did, so I called him and told him the news so he could come back to meet me at our house.

The wait period from 9 am to 4 pm at home was horrible. I wish I could have slept, as I would not get much that night, but there was no way I could calm my nerves to sleep. Once we got into the hospital, we quickly got a bed and started the induction. Originally, the doctor told me it could be 24-48 hours to deliver Cora, so we settled in to our room and began contacting family and friends. I was in the hospital for the long haul, or so I thought. I had misoprostil placed in my cervix at 6 pm and by 9:30 pm I had already had enough contractions to get to 6 cm dilation and asked for an epidural. Then, progress stopped. All night long I went without much change, or sleep. At 4 am, I got another dose of misoprostil and at 6 am, I was fully dilated. At that point, I was supposed to push if I felt pressure. I never did. I had a few visitors come by around 9 am, until the doctor came in at 9:30. She told me we were going to try to push because they could feel Cora close. For some reason, this did not register in my mind that this was THE push. I thought I would push for a while, rest, and we would try again later. At 10 am, after only a few pushes, Cora was born.

I am forever grateful to Dr. Ellestad for being there to deliver Cora. She was one of the two great doctors I work with everyday; she had been there at my very first ultrasound when we discovered everything and she loved Cora. She was incredibly supportive throughout my pregnancy and she was so gentle delivering her. She coaxed her out and called her by name; I will always have that memory. All four nurses who were there taking care of us were outstanding. I cannot say enough in praise of them. They were incredibly sensitive to our needs and did whatever we asked. They knew that pictures were the most important thing to us, so they made sure to take some for us. They also called Cora by name several times and talked about how beautiful and sweet she was. Two of our pastors from our church, The Summit, came by to pray with us Monday night and our first night shift nurse, Shannon, asked to be in the room. They made sure to send us home with footprints, hand prints, keepsakes like a very tiny lace dress and a mold for her feet. These are things I will treasure forever. Shannon, Lisa, Carly and Amanda if you are reading this now, thank you.

I cannot describe to you now how I felt the moment Cora was born. It was surreal, like this was happening to someone else. By our request, they cleaned her and wrapped her up in the blanket we’d brought so that we could hold her. They left us alone to hold her for as long as we wanted. I touched her face and arms in an effort to memorize every bit of her I could. She had a little,very dark hair (she obviously takes after her daddy) and she had the Shrader nose. The Shrader genes are very strong apparently, so I never stood a chance. She was beautiful and I miss holding her so much.

After a while of holding her alone, we had a few people, dear friends and family, desperately wanting to come in to hold her too. Our families came in and took turns holding her and taking pictures. At first, I didn’t know if I wanted people to see and hold her. Her skin was very fragile and her body wasn’t perfect; I was worried people wouldn’t feel comfortable. Our wonderful family and friends didn’t mind her premature features and loved on her most of the day. Thank you to all that came to hold her when we didn’t, couldn’t, ask; I didn’t realize until now how much that meant to us. We had visitors in and out all day until about 9 pm that night. By that point, the epidural wore off and I finally could get up to use the bathroom and take a shower. After my shower, Josh and I knew what was coming. We had to call Decedent Care to come get Cora. I wasn’t ready. I’m still not ready. We had just met our daughter, and even though we never knew her alive outside of my body it didn’t matter. That’s how strong and how deep we love her. That was THE hardest part of the entire day, including the moment she was born and placed in my arms. It was such an intimate moment and precious to us that I won’t share those particular details.

These are Josh’s words he shared the night she was born:

Today has been the darkest day of my life. Today was the first and last time I held my daughter. This morning, at 10am, my lovely wife delivered our 1 lb 2oz baby Cora Kimberly, whose heart had stopped beating sometime over the weekend. Grief, like a hurricane, swept in and racked my heart and soul today. My faith, such as it is, has been tested and retested over the last 36 hours. My strength failed. My hope failed. My spirit failed. But….but God has not failed. He has not forgotten. He weeps as I weep. He mourns because I mourn. He has endured all that I have and infinitely more. All so that a few might be redeemed and restored to him. I beg you, turn to Jesus. Turn and run to him with the same vigor that I would pursue Cora. My deepest prayer, my final hope for Cora, is that her life, her story, her ultimate purpose, would be to turn weary sinners like me to a deeper love for Christ. If his heart breaks for lost children the way mine has broken today, he must be God to endure it perpetually. I love you all, and would have you meet my Cora one day, perfected, radiant, and safe in the arms of the heavenly father who created her. God bless you all.

I couldn’t have explained how I felt any better. We are so broken, so lost, in such immense pain. I lost my mom too early, yet losing a child is something so painfully unnatural, the hurt is so much deeper. I had prayed for the entire pregnancy to be able to hold Cora with her heart beating. God decided not to grant that request, but I realize it doesn’t matter. She is our daughter and we miss everything about her. We were both worried we hadn’t bonded with Cora as we should because we knew the outcome. Her birth proved us both wrong. I yearn to hold her, my heart aches without her, I feel empty now that she’s no longer carried under my heart.

Cora had a purpose on this earth and it has yet to be ultimately fulfilled. We have received so many stories about how Cora’s story has brought someone back into a prayer life or made their faith stronger. A few people even shared the Gospel to others through her story. She was not only precious to Josh and I and our families, but also to numerous strangers who read this blog or know her story. Those stories and the strength God bestows on us will get us through the incredible pain. They say time will heal, but I experienced after losing my mom that the years to come will be the hardest. Cora has changed my life completely. I have always loved children and one of my goals in life was to be a mother. I think I wanted it so badly that I made being a mother more important than being a child of God. Cora is still in the process of teaching me ultimate dependence on God. She lived 29 1/2 weeks and impacted more people from the womb than so many who live a lifetime.

As painful as it is and will be in the years to come, I’d get pregnant with Cora all over again. She is such a blessing to our family. Her siblings will know about her and see her pictures. Her impact will not be forgotten in this house. If you would like to honor Cora’s memory, we are starting an adoption fund through her memory. Josh and I absolutely love kids and we would like to have many, adopted and biological. How awesome would it be to tell a future adopted child we were able to bring them home because of their sister? If you feel led, you can contribute to our adoption fund through a PayPal link from the previous blog here.

We had a beautiful memorial service last Friday, the 5th, celebrating her memory. I am immensely grateful to my brother and sister-in-law who went above and beyond helping us with all the details of the service while we were getting out of the hospital and struggled to make decisions. They found a wonderful cemetery with lots of trees and a lake. It was a lovely service that perfectly fit our darling Cora’s memory. View her beautiful obituary here and the program from her memorial here.

I want to share an excerpt from the message from Spence Shelton, a pastor from The Summit Church:

“If you’ve followed Josh and Rebecca online, you know the title of their site is “affliction eclipsed by glory”. Let me be very clear in this moment to you what they mean by that. At the core of Christianity is the message of Jesus Christ. The Gospel. This message is that sin has corrupted everyone and everything on earth. So we have pain and affliction. God is not surprised by our suffering. And this brokenness is why he sent Jesus. Because we do not have an answer to death. We hate it but we cannot stop it.

See the Christian message is that God created you and He loves you. yet sin has brought the plague of death onto earth. And death stings. But though the world was broken and marred by sin, God the Father still loved you and I, his children. While we were still separated from Him by our sin, he sent Christ to pay the penalty for our sin. To face death for us. That is the gospel in four words, JESUS IN MY PLACE. He faced the full force of death so we only face a shadow of it.

But the Christian message does not end in the grave. Jesus gives us hope because after He died, He got up. Everything else Paul says here, his words of hope, hinge on the fact that Jesus got up out of the grave. THIS CHANGES EVERYTHING. By getting up, Jesus has beaten death. Where there was death, Jesus brought life! And so…through Jesus…God will bring with him those who have fallen asleep. The gateway to victory over death is Jesus and only Jesus.

And there, we find hope. That is hope that is different than anything else you will hear. Those who are in Jesus share not just in his death, but in his resurrection of Jesus. To family and friends, Josh and Rebecca want you to hear and consider this message. That is what they hope their daughters’s life points you towards. The love and hope of salvation for you. Because we will all be here one day. And when you are here, where will your hope be? There is only one hope in this moment. Believe on Jesus for your salvation. Repent of your sin and turn to him. He is not only the answer to death but the comfort in the midst of it. Jesus changes everything. Jesus gives hope where there is no hope, he brings life where there is death, He turns mourning into praise. He changes everything.”

This is the point of Cora’s life. To point all of us to Him. I know she has done that for Josh and I. I hope her story does that for others. Like my husband says, “I beg you, turn to Jesus”. There is NOTHING more important. One day, we will meet Cora, perfected, radiant, unbroken and she will be able to introduce Josh and I to our Father. What a glorious day that will be.

In Him,

Josh, Rebecca and Cora Kimberly Shrader

I consider that our present sufferings are not worth comparing with the glory that will be revealed in us…In the same way, the Spirit helps us in our weakness. We do not know what we ought to pray for, but the Spirit himself intercedes for us through wordless groans. Romans 8:18; 26

20130708-122103.jpg

God, make me weak

I am getting worn down. Weathered. Anxious. Weaker. God is wearing me down through the process of this pregnancy, but ultimately in a good way. I think due to the  difficult circumstances in my life and the fact that I don’t wear my emotions on my sleeve, people think I am a strong woman. God knows differently. I try to be strong, not crying in public when I know it will make people uncomfortable or tell them things they don’t really want to hear when they ask, “how are you doing”? I would rather not deal with other people being awkward with my pain and pretend that I’m doing just fine. I may not be able to keep that up much longer. I want to be transparent.

As a sonographer with all day access to a high-tech ultrasound machine, I have been scanning Cora everyday. It helps to see her cute face. However, scanning Cora everyday has led to more anxiety lately. In the past couple of weeks, I’ve been keeping a close eye on how much oxygen she’s getting from the placenta through the umbilical cord. I explained in an earlier post that she has an extremely short cord and is basically tethered to the placenta; in addition to that, she is very small for her age. It’s hard to explain, but the numbers that measure oxygen from the cord are elevated. This basically implies she is not getting the “normal” amount of oxygen, probably due to her small size, probably due to her abnormalities (organs being on the outside)and probably due to her short cord. The blood flow could eventually go from the normal direction (placenta to Cora) and reverse its path (from Cora back to the placenta). This will definitely mean Cora is not getting adequate oxygen. Once this happens, the risk for loss increases dramatically.

After noticing the change last week, I pulled one of our doctors into a room to ask if they would deliver her immediately if there was reversal of flow in the umbilical cord (this is the route we take for low-risk pregnancy). She told me it probably wouldn’t help Cora to be delivered this early and it definitely wouldn’t help me. The only question we needed to ask ourselves was if we wanted to hold a live baby. The umbilical cord isn’t the deciding factor of delivery, but it could indicate she is in distress. If she was in distress, I could choose to have the C-section and be delivered to hold a live baby, but even that isn’t guaranteed. She may not survive delivery with all her complications. I could choose not to deliver and wait. Wait to see if she dies. That was it, the tears started to flow. I haven’t thought too much about Cora passing before it was time for my C-section. She could pass before she’s delivered and I could go into a C-section anytime knowing I won’t be delivering a live, breathing baby. It was definitely a kick in the teeth.

Needless to say the last couple of weeks, I have been pretty quiet about these concerns. I’ve noticed that I haven’t been praying as much lately, nor thanking God for anything in my occasional prayers. I also haven’t desperately pleaded for Cora in my prayers like I used to. I haven’t given up, just discouraged. I’ve been focusing on the fact that we may never come home with Cora and it makes me angry, frustrated and anxious. I think God understands these feelings because He feels them too for Josh, Cora and I. Two weekends ago, I went to church in a funk; even the worship songs couldn’t lift me. God spoke to me through JD Greear’s sermon series on Elijah entitled “Something Better”. JD said “If dependence is the objective (which it always is with God), then weakness is an advantage.” It is ok for me to take a break and mourn the possibility of loss, to realize there may be no miracle for Cora and to just be angry. It is ok for me to have moments of weakness and it’s even better for me to share these moments of weakness with others. Cora may not make it to the shower I’m having with family and friends at the end of June. She may not make it to the maternity pictures I scheduled with a friend in July. She may not make it to August when I have my scheduled C-section. My plans may not work out, but God’s will. I don’t want this experience to be based on how strong Josh and I are, because we are so weak. You may not notice, but I cry a lot. Usually alone in my car, apartment or ultrasound room but always silent and always in control. This may change. I’m finally feeling the weight of what God has placed in our lives. God is in total control of this situation. I have no control over anything, especially not Cora’s outcome. God is making me weak so He can use me.

JD used a passage of 1 Kings in his sermon to explain that God has power over death and any earthly need, but that He has a bigger agenda than my need. My need is to have Cora with me, so that I can enjoy her as a blessing from Him on this earth NOW. Many Christian pastors and churches focus on suffering as punishment for lack of faith or prayer. Many times God does bless us through worldly gifts, but sometimes it’s through death and weakness. God saved us through His Son, whose last image to this earth was of extreme suffering. That was God’s GREATEST gift to His children. Paul says in the Bible to rejoice in our weaknesses and that’s what I’m doing here. I’m not trying to focus on my pain merely to be morose. I want to focus on my weakness to show God’s power. If you have no cross (suffering), you have no resurrection (ultimate Hope). I know this pain is temporary and God may choose to produce a miracle through Cora, but my faith in Him isn’t conditional. Even if He saved Cora’s life now, she won’t live forever; it’s a temporary fix. Knowing God is better.

Please don’t focus on just the good things in life; you can miss that pain produces beauty and hope. Pain can be a very GOOD thing to experience, as it can most definitely strengthen any faith you possess. I say this after my mom passed to cancer and throughout this experience carrying Cora. You can praise God through the storms in your life, He encourages it. It shows others HIS glory and not yours. I can’t say it enough, the only reason we are getting through each day is Christ. Period. The end. Below are both of JD Greear’s sermons and a prayer request list. I HIGHLY recommend watching both videos. It will strengthen and encourage you.

This is week 2 of the sermon, which is the basis for this post. It’s 50 + minutes, but I promise you it is WELL worth an hour.

This is actually week 1 of the sermon series, which also touched my heart deeply. Again it’s 50+ minutes, but JD is engaging and funny and will keep your attention I PROMISE:

Prayer requests:

1. Please pray for strength for Josh and I. It’s harder to come by as time passes and we get closer to August.

2. Please pray for the upcoming meeting with neonatalogists, surgeons and palliative care (probably scheduled for sometime next week). This isn’t something any parent wants to do, but we need to make our desires for delivery known.

3. Please pray for ultimate transparency. This is incredibly out of our comfort zone, sharing all this with the world, but I feel it aligns with God’s plan for Cora’s story.

4. As always, please pray for ultimate healing for Cora’s body. She is surpassing everyone’s expectations to make it this long. Healing for her body may mean multiple surgeries and many months here on earth, or immediate healing in Heaven.

Others turn God into some kind of genie that will always heal and bless if you just show enough faith. And that works until it doesn’t, which is why I know a lot people in churches that preach that message who have lost their faith because God lets their son die and they said, “But I did everything right! I named it, claimed it; confessed every known sin; thanked God in advance for the answer,” and he still died.  True faith is what you see here: they come to God with submission and humility, unanswered questions, but knowing God is full of compassion. If you know the true God, you will have a humble faith. You believe that God cares, that he can and wants to heal—that he’s good, full of compassion and love; but you are humble enough to trust him if he doesn’t. -from JD Greear’s sermon series entitled “Something Better”

Be still and know…

Tuesday, April 9th I went in for my anatomy ultrasound at 17 weeks 5 days. This ultrasound is the “big” ultrasound to look at organ development and gender. I am going to try to summarize the ultrasound findings and then I’ll include the ultrasound report from the doctor toward the end of the post.

To summarize the last ultrasound I posted on the blog, we saw severe scoliosis (curved spine to a 90 degree angle), abdominal contents outside of the body through a large defect in the abdominal wall and abnormal placement of the heart outside of the chest-possibly in the abdomen. All of these findings are pretty much the same at this recent ultrasound. The baby was in a very difficult position to assess for some of the anatomy because of the curvature of the spine and the fact the baby was lying with the heart facing toward my back. The spine remains incredibly curved toward the right side of the body, however there doesn’t appear to be a defect like in spina bifida. The abdominal contents (stomach, intestines, liver, spleen) remain outside of the body through a very large defect in the abdominal wall encased in a membrane. We found one kidney inside the body and one kidney possibly outside of the body through the defect. There appears to be one functioning kidney as there is ample amniotic fluid and a normal bladder. The heart structure was difficult to assess, however there appear to be 4 normal, symmetric chambers. The heart is also partially outside of the baby because there is a defect in the chest wall. That was a new finding today. Another new finding is the fact the baby is basically tethered to the placenta due to the short umbilical cord. This leads the doctor to believe the baby has some form of short umbilical cord syndrome. There will be no definitive answer to what the baby has because the baby doesn’t fit any mold as far as diagnosis go. The doctor said she is more concerned with what she sees on the ultrasound than she is with a correct diagnosis. She said what she saw Tuesday is more concerning than the last ultrasound.

The good news is that we can see some lung tissue, the heartbeat is strong, there is ample fluid surrounding the baby and the brain, face, legs and arms appear normal. The bad news is due to the amount of organs outside of the body and the lack of organs inside the body, this will probably not be compatible with life outside of my womb.

When we talked with Dr. Boyd, she explained to us that we would still have the opportunity to discuss birthing outcomes with pediatric surgeons. I was relieved to know that it won’t be Josh and I making the call of resuscitation or surgeries. We would tell the surgeons in advance that we would like them to continue resuscitation or surgeries as long as it will prolong life and not cause pain or extend death. I wouldn’t know where to draw the line of continuing treatment or saying enough is enough. How can you do that as a parent? Thankfully, Dr Boyd told us the baby and the pediatric team will make that call. There is still a very high risk of stillbirth or demise in utero. Either way, we chose to have a C section to help sustain any life we can for her and so that we could hold her with or without a heartbeat. This is verbatim from the ultrasound report if anything I said above isn’t clear:

Again noted is a large complex ventral wall defect. Fetal intestines, liver, stomach, and a portion of the cardiac apex are contained within this defect, and are seen free floating in echogenic fluid in a membrane enclosed sac. One kidney is visualized within the fetus; the other appears to be exteriorized. No pelvicaliectasis is seen. Bladder is located within the fetal pelvis. A paucity of cord loops is noted within the amniotic fluid, and with color Doppler evaluation, a very short umbilical cord is seen extending from the placenta to the area of the ventral wall defect contents. The fetus appears tethered near the placenta, and does not move freely about the amniotic cavity.

Angulation of the fetal spine is again seen, with approximately 90 degree curvature in the area of the distal thoracic region. Although marked scoliosis makes assessment of the vertebrae more difficult, there is no overt sign of an open neural tube defect or sacral agenesis/dysgenesis.

Assessment of umbilical artery number is limited by fetal position and short cord.

Evaluation of the heart is limited by fetal position and partial exteriorization of the heart. 4 chamber view appears symmetric. Outflow tracts could not be adequately assessed.

Genitalia appear most likely female.

Fetal extremities appear unremarkable, including foot position. Visualized intracranial anatomy appears normal.

Findings were discussed. Large membrane enclosed ventral wall defect with partial ectopia cordis can be associated with pentalogy of Cantrell as well as with conditions such as body stalk anomaly/limb body wall complex. The short umbilical cord and presence of severe kyphoscoliosis are more consistent with limb body wall complex. The lack of apparent limb/cranial/face involvement is less consistent with limb body wall complex. We discussed that if this does represent pentalogy of Cantrell, it is at the very severe end of the spectrum. Given the very large size of the ventral wall defect, presence of markedly short umbilical cord along with presumed diaphragmatic defect (based on finding of ectopia cordis) and severe kyphoscoliosis, appearance is most consistent with lethality. We discussed increased risk for intrauterine demise, but also discussed that the fetus may remain viable in utero, in which case Ms. Shrader and her husband would like to have a pediatric team available to assess the neonate and to determine whether rescucitation efforts would be possible. Ms Shrader confirmed again today that she would not want to intervene with termination of pregnancy even for a lethal fetal condition.

If you caught it in the last paragraph I typed, good eye. We found out Tuesday baby Shrader is a girl.

We decided to name her Cora Kimberly. Kimberly is my mom’s name and it was an automatic as soon as we found out the gender. One of my mom’s dying wishes was to be a grandmother and I want to honor her. Cora is just a vintage name we could both agree on.

Here are some pictures I grabbed myself the day after our big ultrasound. From here on out I will post ultrasound pictures that show Cora’s beauty and not necessary point out what’s “wrong” with her. I tried to avoid pictures where you can see the organs and such outside of the body and focus more on her face and limbs. You can still see in some of the pictures, the extreme curvature of the spine forcing the legs to point off to the right side of the body:

SHRADER_9

SHRADER_8

SHRADER_6

SHRADER_4

SHRADER_2

SHRADER_10

As you can probably tell, this is not the news we hoped and prayed for. That is ok, because God is greater than I am. We have resigned to celebrate Cora as long as her heart is beating and grieve after it’s not. This news hit me a little harder than the last ultrasound because the prognosis is much more grim. We don’t have a lot of hope in the medical diagnosis but I am still aware God can perform miracles, so we’re praying for those. I am currently reading through the book of Job to remind myself that God is sovereign and I may never get a satisfactory answer for Cora’s suffering. Job was considered “blameless” and “upright” but he suffered many calamities losing his children and his livestock. His friends convinced him that his sins caused his pain and punishment by God, when in reality Satan was attacking Job to try to seduce him into denouncing God. God never answers the question in the book of Job about suffering in this world but does reassure us through Job’s story that He is sovereign and we must put trust in that and not in figuring His plan out for us.

“I know that you can do all things;
no purpose of yours can be thwarted.
You asked, ‘Who is this that obscures my plans without knowledge?’
Surely I spoke of things I did not understand,
things too wonderful for me to know.”

Job 42:2-3

God gives us obstacles and blessings in our path without our knowledge of when, what, how or why. God has shown me before that He certainly works all things for His glory and for our good. I have learned to trust Him through past experiences with grief and I will learn from Cora’s story. Please help us celebrate Cora’s life now and grieve with us if she passes later.

In Him,

The Shraders

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