We'd like Norah Jones playing in the background, and no excessive hospital staff. Writing that kind of birth plan was easy, even fun. We had no idea how to even begin that process for Jonathan.
When we initially decided to continue with the pregnancy, Lauren's OB provided us with one of the most useful allies we could have ever hoped for in such a time of crisis. It was contact information for what turned out to be two amazing ladies...Tracy and Sandy. They ran a non-profit organization called Be Not Afraid (http://www.benotafraid.net/Home) which offered free services that focused on "meeting the needs of expectant parents as they seek to honor the life of their baby no matter how frail or how brief." When it came time to create a birth plan for Jonathan, it was Tracy and Sandy that gave us the resources we needed to write it.
Instead of figuring out what relaxing music we wanted playing softly in the room during the delivery, we needed a plan for three scenarios, two of which were unthinkable: still born, born but not doing well, born and doing well. These were heavy burdens to bear. We were literally making life and death decisions for our soon to be born child. Tracy and Sandy were able to show us birth plans from other families, so we used them as guides while navigating our plan for Jonathan. Although each scenario differed from one another, they all shared our wish to hold Jonathan as long as possible so we could spend as much precious time with him we could...especially if his time with us was brief. We also decided that if he was born and not doing well, that we would allow basic CPR measures, but did not want him to be kept alive by artificial means. With Jonathan's very poor prognosis, we felt like prolonging his life artificially would have been for our sake, and not the best thing for him. We also couldn't imagine making the heart wrenching decision to discontinue life support. We were doing our best to educate ourselves on his condition so we could balance sound medical decisions with relying on our faith in God's plan for Jonathan.
When we lost our daughter Eliza at birth, were learned from our compassionate, understanding and wise nurse, that photos of Eliza would mean a lot to us later in life. I never would have thought about taking photos during such a sad moment in our lives, but to this day, we take them out each year on her birthday so we can remember her. Once again, Tracy and Sandy were there to lead us to another invaluable resource: Now I Lay Me Down to Sleep (https://www.nowilaymedowntosleep.org). This organization would provide families with remembrance photography for babies who are stillborn or at the risk of dying as newborns. When we finally met our photographer, Faith, we found her to be fantastic. She was not only going to be there during the delivery, she also scheduled a family maternity session at her home studio.
One of the major adjustments to our charted course was having to change the hospital where Lauren would deliver. Because the of number of specialists that had to be present during delivery and the need for a neonatal intensive care unit, we had to move to Presbyterian main in Charlotte. Along with the hospital change, we needed to find a new doctor to deliver Jonathan. There was a lot of anxiety about having to change her OB. We had a great relationship with our current doctor. Lauren's OB supported our decision to continue the pregnancy 100%, and we feared we wouldn't have the same support from someone who would be coming into the game so late. Yet again, Be Not Afraid was there to direct us to an OB in downtown Charlotte. After meeting him, we couldn't have been happier with the referral. He was soft spoken, kind, knowledgeable, and most importantly, respectful of Jonathan and our decision.
Every time we met a new person along this blind journey, our eyes were opened to another incredible stitch in our growing blanket of support. If I haven't painted the picture yet, I'll come out and say it...the Be Not Afraid organization became an invaluable resource for us. It's difficult to accurately convey just how much smoother they made this bumpy ride we were on. We got close to Tracy and Sandy they became part of our family during the process.
We were only weeks away from our next level two ultrasound, and shortly after that, Jonathan was due to be born. As we approached the end of the pregnancy, the reality of impending sadness loomed. I tend to be the type of person that prepares for the worst so I'm not blindsided, so if things turn out better than expected...it's a pleasant surprise. As much as I clung to faith, there were plenty of moments of weakness, and I kept my guard high when it came to thinking Jonathan may have a chance at life. There were times at work when I would see young children being raised in deplorable conditions, and feelings of resentment, and anger would creep in. So I had to be intentional with my faith. I often had to stop thinking why, and when I got back to praying for peace and clarity, it seemed to bring me back to a good place. It wasn't that I felt God was going to heal Jonathan completely, it was simply that when I did pray, a sense of calm washed over me, and I knew I was being carried when I was too weak to stand on my own.