Whirlwind. So much of life experience packed into those unforgettable 3 days: anxiousness, pain, relief, fear, joy, hope, and grief. Labor, C-section, birth of our son, waiting, and loss; congratulations and condolences.
I had so much planned for that weekend. (Because of various concerns about my baby’s growth and movement, placenta health, and other things, I knew that at my next ultrasound, they might decide to keep me for a C-section.) Saturday was packed with taking our foster daughter strawberry picking and other activities, getting ready for her birthday, and preparing myself for a long stay at the hospital. (Who knew how many surgeries Josiah would need after birth, or how long it would take to stabilize him? We could be there for weeks!)
But baby had other plans. Saturday, the last day of my 36th week, I had contractions off and on all day. My memory of strawberry picking was more about my discomfort than the fun our little girl was having. As contractions continued and my water broke, Matt took me to the hospital that evening in early labor. They arranged transport to the hospital where I was supposed to deliver. There I spent a long, sleepless, thirsty night awaiting the C-section.
Josiah Gregory Bogard was born on Sunday morning at 5:06, weighing 4 pounds 10 ounces. I had asked for skin-to-skin contact as soon as he was born, but instead, they hurried my silent baby past me to the rear of the operating room to get him breathing. I was wheeled to recovery, and a bit later the medics wheeled his incubator to my bedside so I could see my son for the first time. But with the drugs in my system, sitting up to look at him made me so nauseous that I couldn’t handle more than a glance or two.
Again, they wheeled my baby away from me to transport him to the nearby children’s hospital so he could receive the care and surgeries he needed. Matt went with him while I recovered. (That is what we had agreed upon. But he didn’t tell me until recently how hard it was to be pulled in two different directions and not be there for me.) I spent Sunday sleeping off nausea, feeling too sick to think about my baby or care about anything.
It was Mother’s Day.
Josiah was stable all morning until they attempted surgery to close the myelomeningocele (opening where the spinal column did not fuse shut to protect the spinal cord, and therefore where the skin could not grow) on his back. But when they started anesthesia, his heart stopped and they had to resuscitate him. The surgery never happened. After stabilizing Josiah, they found so many other complications and deformities that our endless ultrasounds hadn’t revealed. His throat didn’t connect to his stomach. His penis didn’t connect to his bladder. Ultimately, however, after 24 hours, there was still no kidney function (as we knew possible), and with too many other complicating factors to remedy the dysplastic kidney, it was only a matter of time before acid build-up in his system would affect all his other organs.
Finally, on Monday, I was given a pass to leave the hospital and go see (and finally hold!) Josiah and meet with his doctors. Because his tiny body just wasn’t going to be able to survive, but we didn’t know how long the process would take, we opted to move Josiah back to my hospital room so I could rest and recover while spending time with him. But he wasn’t able to handle transport, and his blood pressure started dropping more rapidly despite multiple medications to stabilize.
So we returned to Josiah’s NICU room where they made him comfortable, and we held him until his little heart faded away, around 7:00 that evening. After holding him as long as we wanted, I was able to bathe him, at last without all the tubes and wires.
About a week later, we gathered at Matt’s family’s cemetery plot up in the middle of gorgeous nowhere to bury our baby. Just a few family members stood on the peaceful knoll with us and shared meaningful Scriptures, a song or two, and thoughts about Josiah. It was as perfect as something painful can be.
Josiah’s body was physically encompassed with the love of our families in the little touches that eased our hearts, too: from the preemie-sized sleeper my aunt had sent me after the first diagnosis, urging me to hold him and dress him no matter what happened; to the softest fleece blanket on which my mother-in-law crocheted a border with “a prayer in every stitch” for Josiah; to the simple but elegant box my father built for a casket the night before my mother drove down to be with us, and that my mother spent hours applying finish and woodburning Josiah’s name on the lid.
I had been too numb when he was born to know what I felt. No, actually, I did know what I felt. Holding this tiny, silent bundle covered with tubes and wires felt incredibly surreal. (No wonder. This little life was taken from my belly in a sterile operating room, hidden from my eyes by a suspended sheet, and taken far away from me while I was too overwhelmed with nausea and exhaustion to care.) I felt so disconnected I could hardly even talk to him. But seeing all these meaningful outpourings of others’ love helped me to “come into” a sense of my own love for my son. After he was gone.
And that was a grief in itself.
In all this whirlwind of emotions, of grief mixed with relief, God showed his grace and answered prayers. We had prayed for God to be merciful. So He took Josiah instead of giving him a life of prolonged suffering. We asked God to help us with all the ethical questions about what interventions to make or not make. He made the choice easy, because Josiah’s body didn’t give us any options. The staff at both hospitals were wonderful and caring. (When I first went into the hospital in labor, one nurse attending me was another Spina Bifida mom I had been talking to on Facebook but had never met. It was wonderful to receive a hug of reassurance as we started into this whirlwind.)
Most of all, we knew hundreds of people were “on prayer duty,” as one friend said. All through our pregnancy, the birth and then death of our son, and the process of realizing our grief afterwards, our mighty, loving Father in heaven had been surrounding us, holding us. And he continued to carry us through the following days, weeks, and months, and yes, even years. Truly God sustained us, just as Josiah’s name reminds us.
Josiah’s Story – Part 1