Our Story: How it All Began

Positive! It only took us 2 months of trying and we finally had our positive pregnancy test that we dreamed about! We were college sweethearts and had been married several years by that time, both obtained bachelors degrees, and great jobs. We had just purchased the home of our dreams earlier that year and we just knew that it was our time to start our family. Like everything else, we planned everything out so perfectly that we just knew that the Lord would bless us with our last mission. After all, we knew of nothing that could possibly get in our way. Both of our families were perfectly healthy and could just mention "baby" and "POOF", they were pregnant. But our dream halted very quickly 6 weeks later, when spotting became apparent and a weak heartbeat was visible on the ultrasound. The very next week, during the follow-up visit, that little heartbeat was gone and our dreams shattered. Devastated, we were desperate for answers or to get pregnant immediately. Neither of those found our doorstep.

Our search for answers brought us to an infertility clinic a few months later. There, in the duration of the next year, we underwent painful testing and treatments, only to have, yet, another miscarriage and to be told that there had not been any serious problems found with either one of us. If there ever was a test of faith, of marriage, of our purpose, this was it.

Desperate to move on, whether it be through a child of our own or adoption, we opted to undergo one last fertility treatment; invitro fertilization (IVF). Knowing how hard IVF can be on ones body, I resisted the temptation to go through with it. But for the love of my husband, who wanted to try this one last aggressive approach before moving on to adoption, we went forth with it. We waited two months for my body to cleanse itself of all the past treatments as recommended by our doctors while we anxiously prepared for this great leap of faith that would change our lives forever.

In December, 2008, we were able to obtain 10 healthy embryos. In those 10 embryos, 2 were used in the IVF transfer, and 5 made it to freezing.

Our Babies

December 14th, 2008

Two weeks following the IVF, we received the news that we were pregnant and the HCG numbers were out of the ballpark. Jesse and I had prayed for a baby. And these high numbers only gave us hope that it was healthy one. So the waiting game was on: Can our little baby hold on to life? We wanted so badly for a positive outcome on this pregnancy, as we were beginning to think it wasn't going to be possible for us. But then, at our 6 week ultrasound, our doctor found 2 healthy, beating hearts.

You can imagine the horror we faced when early one morning at 9 weeks pregnant, I awoke to find myself surrounded by a small pool of blood. We had already "graduated" from the fertility clinic and our 1st appointment with our High Risk Specialist wasn't scheduled for another 3 more weeks. Frightened and unsure what to do, we called the medical exchange at the fertility clinic and were brought in for observation. We had been in this situation before during the 1st pregnancy and we were certain as to what was happening. Immediately brought to tears, we entered that small, dark ultrasound room. We just didn't want to hear those words...again. But to our amazement, the doctor turns the screen around for us to see that our two little miracles were still alive and their hearts were still beating strong. What caused this scare? Wedged between Baby A and the uterus lining, our doctor discovered a large blood clot. We were sent home with strict orders for me to take an aspirin pill each day until we were to see our High Risk Specialist, Dr. W at University of Arkansas of Medical Sciences. He also expedited our appointment and we were seen in a matter of a few days.

It was at that appointment that we learned to hand our fears over to God. Upon the immediate ultrasound, Dr. W informed us that although both babies were still alive, this blood clot a few inches in size, was causing our Baby A's growth to be stunted. He was measuring directly 7 days behind Baby B. If you know about twins, you know that any more than a 7-day measurement between the two babies is fatal. Perhaps it was interfering with his nutrition or perhaps it was interfering with his blood supply. But regardless, if this baby didn't catch back up, and fast, he may not make it. At that moment, our world briefly stopped as he told us "Baby A has a 50/50 chance of making it. And if it doesn't make it, there's a likely chance your body will go into preterm labor to get rid of it and Baby B will go with him." What? How could this be? I could lose both of them? Why me, Lord? Why is this happening to me? Again?

4 weeks later, we pranced into his office knowing that the bleeding had stopped weeks before and that my belly was starting to 'sprout'. And sure enough, during Dr. W's ultrasound, the 1st of our many miracles unveiled itself; the blood clot was resolved itself and the babies were closer in size.

And this brings us to the point in the story where our lives changed forever. April 9th, 2009.

We looked so forward to our 20 week appointment. Jesse's guess was that we were going to have twin boys. I had a feeling it was twin boys or a boy/girl set. But never did I feel that we had twin girls. I'm not sure if it was because the thought of twin girls terrified me, or because I've always wanted boys. But nevertheless, whatever we were creating in my largely growing belly was what God intended us to have. On April 9th, 2009, we were honored to have both Jesse's parents and my parents join us for our ultrasound. Our sonographer, Amanda (who would later become like family to us), gracefully took on all the funny jokes our dads had about the sex of our babies while she searched around my belly with the probe. She immediately found a BOY and tears streamed down my face and smiles filled the room. And about 2 minutes later, she found the other BOY. That little room could not have radiated more happiness at that moment. Boys have seemed to be the minority on both of our sides of the family so it was a welcome arrival of news for many different reasons. And as the 6 of us celebrated in talk and jokes, what was going on at the other end of that ultrasound probe would set the framework for our entire lives. We just thought Baby A was being hard headed as she kept applying pressure and 'wiggling' it around to get Baby A to move. He just wouldn't straighten out for her so that she could get the measurements of his femurs, his heart chambers, etc. Several minutes later, she hung the probe on the side of the ultrasound machine and told us she was going to grab the doctor so he could have his look around. Still yet, we were not alarmed and had no idea anything was wrong.

About 10 minutes had passed when Dr. W came into the room and shook hands with both of our dads before sitting down and immediately beginning the ultrasound. It was only a matter of minutes before he sat the probe back on the machine, placed his hand on my leg and said "We need to talk". The term "the world stopped" has never had a more profound meaning to me than at that moment. Our world did stop. And my heart suddenly hit the floor. "Baby A has a neural tube defect" he said. And any words he said after that was a blur. I do remember asking him if Baby A was going to make it and he stated "yes, this baby is coming no matter what".

What we did find out that day was that Baby A looked to have had a moderate neural tube defect called Spina Bifida in the lower lumbar sacral region of his back with hydrocephelus on his brain (which is common with this sort of condition) and a Chiari II malformation (where the head and neck extends further south). Having worked with children with special needs, I knew exactly what this was and what type of condition our child was going to be in. Scary? Yes. But, impossible? No. That is why I truly believe the Lord was with me through that moment in time. This baby was going to live. This is the child that God gave us. This is what it was supposed to be. And we would prepare ourselves all summer long for this challenge ahead of us of raising a special needs and a healthy pair of twins. Dr. W stressed the importance of carrying the boys as long as I possibly could for Baby A's sake, knowing he would need immediate surgeries upon birth. He and our Genetics Counselor, Shannon, scheduled an appointment for us with the Spina Bifida team at Arkansas Children's Hospital several weeks later so that we could learn more about what was about to happen with this special baby. We were also asked for the birth to be taped for a Spina Bifida documentary for educational purposes for families like ours, who are recently diagnosed. And Dr. W placed me on bedrest that following month, where I would learn more about my stamina, my faith, and how much these babies were worth fighting for. That summer, I was brought closer to God. And we would name our boys Eli & Walker.

Before I formed you in the womb I knew you, And before you were born I set you apart."

- Jeremiah 1:5

On August 3rd at 36 weeks gestation, Dr. W found that I was dialating and immediately sent us to UAMS Labor & Delivery. At 5:00 p.m., a 6lb 3oz Baby A (Eli) was born and one minute later, a 5lb 7oz Baby B (Walker) came into this world as well. Eli was immediately taken to Arkansas Children’s Hospital NICU for further evaluation by the Spina Bifida team as planned while Walker, remained in the UAMS NICU for a pneumothorax (he breathed in a whole lot of air after the c-section, causing a air sac to burst in his lungs. Wimpy white male syndrome I believe they call it?) The videographer for the Spina Bifida documentary barely made it in time to shoot the c-section. But with tremendous luck, she was able to step in and get the shot of Eli's Spina Bifida spot located on his back just in time before the medical team covered it with celephane before his transport to ACH.

Eli- 6lbs 3 oz Walker- 5lbs 7oz

That next afternoon, we were called into a teleconference between UAMS & ACH and was told that our precious Eli was found to have had multiple anomalies, meaning he had a number of other serious life-threatening issues that were not picked up on the ultrasound during the pregnancy. We were told that the fluid had substantially taken over around Eli's brain and the cyst on his brain stem would cause him to be on a trach for the rest of his life. They told us that Eli, if kept alive, would never know how to eat, how to speak, he would not know how to breath on his own and would never know us, his parents. Jesse and I immediately knew what we had to do. So we had the hospital contact ARORA (Arkansas Regional Organ Recovery Agency), in hope that Eli would be eligible for organ donation. And then we did the unthinkable: our family made that choice to schedule a time to let our beautiful baby boy go back into our Lord’s arms.

These Photos courtesy of Now I Lay Me Down to Sleep

August 6th, 2009 by volunteer photographer Tricia Kauffman

On August 6th, we pulled all tubes off of Eli at ACH and were told to expect minutes with him. But against all odds, Eli kept breathing. Fourteen hours later, after very encouraging words from doctors from ACH & UAMS, we finally opted to have Eli transported to UAMS to be with his twin brother during his last day of life as a family instead of split up between an interstate. It was obvious that Eli had “unfinished business” and we didn’t want to keep them apart any longer.

Our 1st and only family photo we shouldn't have had.

August 7th, 2009

Upon giving our consent, Eli was loaded and transported to UAMS within a matter of an hour. As he was rolled into Walker's NICU room by the ANGEL1 transport team, doctors and nurses scurried around as quickly as possible to get the two boys together, knowing time was the enemy. As they were moving tubes, wires, and descending Walker's incubator as they opened the sides, Eli was gently placed beside a sleeping Walker, Once Eli's hand was placed onto Walker red little body, Eli's color began to return and a slight smirk came across his face. I've often heard of the power of twins. But had having seen this first hand, I am a true believer that twins are kindren spirits after all. Amist all of the chaos, I remember looking behind me at one point and seeing numerous people gathering in this little NICU room of Walker's. Still to this day, I am unsure as to if the hall nurses were getting wind of what was going on or what. But as I quickly glanced behind me, I saw people putting their arms around each other. I remember seeing tissue being passed around and tears being shed. Apparently we weren't the only ones who thought this situation was pretty special. It's not everyday that you get to see a dream come true. Or atleast, we thought this was. We were given a gift that day. A gift that no one can ever take back from us.

The remaining part of that afternoon consisted of two baby boys, their parents, their nurses, and an embrace of Peace that I believe the Lord placed on us. Our family and friends at this point were under the notion that Eli had passed the previous night. So when we called our parents to tell them what was going on that next morning, they briefly stopped by to see Eli in his last day with his brother by his side. I cannot begin to tell you what that afternoon did for my heart. No tubes, wires, or bandages were near and you could finally stare at perfection. God knew what he was doing after all.

For the first time, we were finally able to enjoy our Eli, celebrate his life, and mourn peacefully, all in the presence of his twin brother, whom he obviously needed. Us along with Lindsey, who was Eli's nurse the night before at Arkansas Children's Hospital & Laura, Walker's NICU, were able to pass Eli around that evening so that he was held and never put down, enabling Jesse and I to gain mini-naps. Having had a c-section a few days earlier and a nervous husband who was traveling between hospitals the entire week, we were purely exhausted, especially from being up the entire night before as we watched every breath Eli took. We were terrified of holding our baby as he died, but scared of missing his last breath. And as Eli took his last breath at around 2:30 a.m. on August 8th, these two nurses gently woke us up so that we could hold our baby boy as it happened. We held him, we talked to him, we assured him it was ok to go. We then dressed him in his blue smocked gown and released his body to ARORA for harvest.

We held his funeral on what must have been the hottest day of the year. August 10th, 2009 brought a field full of Eli's biggest fans, the fans who were rooting for him all throughout the pregnancy. We were stunned at the amount of people, even in the 100+ degree weather. But I must say, the sky was perfect. And a cool breeze embraced us as we let his balloons go. I believe his was Eli telling us it was was ok to let go.

One week later, we were able to bring Walker home for the first time. And that was hard. We dreamed of the day we loaded up 2 carseats to bring 2 bouncing baby boys home. That day brought tears of hurt and tears of joy. And an overly anxious back-seat-driver (that would be me) who was a bundle full of nerves just to get home safely. I just couldn't imagine anything happening to our Walker too.

Throughout this journey, we witnessed the strongest of strength, the most beautiful of compassion, and the good deeds of friends, family, and medical personnel. There are so many to name and all for different reasons. And even now, we have been able to keep in touch with each one somehow. There is so much more we could talk about on here but it would take days on end to list each and every detail of this story. We await the release of Project E.L.I. late this summer 2010 and remain hopeful that we will hear from Eli's heart valve recipient's family. We are now on the path of healing as a family of 3 instead of 4. We cherish each day we have with Walker and are in constant awe of God's plan for our lives. We know He is not done with us yet as He has continuously opened doors for us as after this series of events unfolded. Eli's life was not ours to have here on earth. God had much larger plans for Eli, as his heart valves are out there right now, pumping away in a life that was meant to be here. Did God choose us to carry Eli, who would save a life? Did Eli continue to live to bring his brother here to earth safely? I'm certain of it. Eli's life was so short but left such a large footprint in the mold.

More than anything, we can't wait to share All About Elijah to his wonderful brother, who will always carry a part of him. Elijah saved his life and another baby's life. Walker saved ours.

*Update: Project E.L.I.: Every Life Inspires Documentary was successfully premiered in Little Rock, Ar on August 7th, 2010, the week of the twins 1st birthday, with over 200 in attendance. We celebrated his life and mourned his 1st anniversary of his death the next day, August 8th. And in the same breath, we found out we were also expecting a baby that same day (no fertility treatments). A gift from Eli? No doubt.

With near bi-weekly ultrasounds thanks to our special friends at UAMS, our baby is being carefully watched and observed for our peace of mind. Our baby, a girl, is due to arrive April 10th, 2011 and has been cleared of any neural tube defect from ultrasounds. God has been good to us through this uneventful pregnancy and we have decided to name her after her brother, Ellie Reese McGinley. Thank you for the prayers! -Jodie

To You, We Owe the World