If we were all sitting in a circle and asked to introduce ourselves, mine would go like this:
Hi, my name is Jodie. I am a 27 year old Momma of twin boys, well, a twin boy. And we have one on the way. I love my husband, family, church, marshmallow creme, embroidery, volunteering as a Donate Life advocate. And...I love my other twin son, Eli, who gave me a true purpose in life.
You see, I knew I had a purpose in life. I've known for a long time that it would come and my life would be complete. But I didn't plan on the type of road we had to travel to get there. Actually, no one does. It's not wanted and its not one anyone seeks to travel. After 2 miscarriages, fertility testing with no apparent answer, numerous failed fertility treatments, our final and most aggressive fertility treatment, Invitro-fertilization, was successful. A few weeks later, we found 2 beating hearts on the ultrasound screen. Early complications that 1st trimester gave us an un-ending amount of miscarriage stress. At 14 weeks of pregnancy, we were given a 50/50 chance of the twins survival (one twin was much smaller than the other). And by 20 weeks, twin A had been diagnosed with Spina Bifida, twin B healthy.
Our lives made a drastic turn that day. What seemed important at the time wasn't all that important after all. All thoughts were directed at this completely different life we were about to embark on. As a special education teacher, one of my 'pets' at the day rehabilitation clinic I worked at was a little boy with SB. So at the point of diagnosis, I immediately thought of him and a peace ran over my heart. I was in love with this little boy. I knew the joys a child with this diagnosis could bring. I was ok. My husband and parents, on the other hand, took it much harder. But the days there forward brought an ease to our hearts. And we began to plan for the arrival of our complete opposite twin boys.
August 3rd, 2009 brought us to labor and delivery at 36 weeks gestation. I was dilating and most of all, Twin A (Eli) failed a non-stress test. So our high risk OB sent us straight there. We delivered a 6 lb (Eli) and 5 lb (Walker) baby boys. Eli was immediately transported to Arkansas Children's Hospital which was right across the interstate from where we were at University of Arkansas for Medical Sciences. This was all in the plans from the earlier meeting with ACH's SB Team so we had months of preparing our hearts for his immediate departure. He was tested, observed, and MRI'd. All I was able to get as I laid in recovery across the interstate for the next 2 days were pictures and updates via telephone and relatives. And at one point, they put Eli on a 'teleconference' type setup so I could see him live.
But things didn't end up as planned.
Our dreams and hopes that we had for Eli were not to be. And that was apparent when we were told that MRI results determined the hydrocephalus was so bad, that it had pushed his brain growth backwards (MRI picture showed a 'rim' of a brain). They hydro was also causing his brain to herniate downwards into his neck. He also had a cyst on his brain stem that had not been seen before, meaning that he would live on a ventilator for the rest of his life. The mylo was so large and so high that he would never be able to walk or stand. He would be a vegetable for the remainder of his days.
It just wasn't supposed to be this way....
Jesse and I immediately knew what we had to do. We had then requested for Eli to be an organ donor and we scheduled to take him off of life support the next evening. Eli lived 31 hours past the point of removal, which was enough time to have him transported back to UAMS to spend his final hours in our arms beside his twin brother.
Eli was a part of a SB documentary here in Arkansas and after his passing, the SB documentary was then renamed after him: Project E.L.I.: Every Life Inspires (which will be on the web in a few weeks. I will blog that address for you all to see as soon as its ready.) This documentary was created by a former well-known news anchor here in Arkansas by the name of Julie Mayberry. She has an 8 year old daughter born with SB. Her dream was to provide a DVD to every OB/GYN in the state to hand out to a newly diagnosed parent as an encouragement to them before they made a choice to terminate the pregnancy because of the diagnosis.
And some of you may recognize our logo thanks to Kari: Team Eli. We are raising money for a resource center here in Arkansas designed especially for the special needs community of children to learn how to dance (no matter the disability or wheelchair or walker), learn how to sing, music lessons, art lessons, etc.. We are passionate about equal opportunities for these children.
Our effort in sharing our story is let everyone know that there is hope for anyone who has walked that mile. And if our story is confirmation for any of you that sometimes far worse things can happen than just a diagnosis. We are a reminder to not take things for granted and to kiss your babies daily. And each of us SB parents and family members are here to move that mountain with society.
You see, we had a dream for our twin boys. We were going to make it work. God had other plans for Eli's life. We now call him 'lifesaver'.
It is quite the honor to be a part of this group. Thanks for your readings, your writings, your encouragements, and your friendships.