I was 23 weeks pregnant with twin girls when I started bleeding. Not just a little spotting, but a gush of blood that soaked my jeans. Dan made calls to the doctor, the hospital, and my parents. My dad loaded us up in his van and drove us an hour to our hospital. We left our 15 month-old son in the care of his aunt. After examinations, my doctor gave us the bad news that I was experiencing placenta abruption. My placenta was tearing away from my body, depriving my daughters of the nourishment they would need to survive. At this gestation, if delivered, my babies were called “not viable.”
The most frustrating part was that there was nothing to do but wait. Over the space of two weeks I was in and out of the hospital as the bleeding would stop and start. I was not in labor and the babies did not appear to be in distress, so we just hoped that my body could handle the bleeding long enough for the babies to grow strong enough to deliver safely. In one instance I bled so much that I had to have a transfusion. Three days later, I delivered Claire Felicity vaginally because she had already descended into the birth canal before we even realized I was in labor. Her twin sister, Ellery Blythe, was taken by emergency C-section. As I drifted off to sleep in the operating room, someone said, “Your first daughter is trying to cry and breathe on her own, Mrs. White, that is a very good sign. She’s a fighter.”
I didn’t know then how important those words would be.
When I woke up from the anesthesia I didn’t want anyone to tell me what had happened. I didn’t want to ask. I knew as they had wheeled my bed into that brightly lit operating room that I was not going to get good news when I came out. I don’t know how I knew, but I knew at least one of my babies was not going to live. For several hours I kept myself asleep by pushing the pain medication button to my IV. Finally, my family wheeled me to the NICU where I met Ellery. It is a blurry memory, but I know the doctors were asking if I wanted them to stop taking extraordinary measures to keep her alive. I just asked, “Is she really alive right now?” Several people in the tiny cubicle shook their heads.
Finally, Dan and I agreed to take Ellery off the machines. The nurses put her in a peach colored dress and wrapped her in a fuzzy blanket. She felt like the smallest doll I had ever cradled. Our families surrounded us while we prayed and sang and took turns saying goodbye. Then I threw up and my mom wheeled me back to my room to sleep.
After the experience of losing Ellery, it was difficult for me to connect initially with Claire. She was fighting for her life but I felt like all I had to offer were some barely filled containers of breast milk that she was too small to even drink. In the meantime, our family members took turns sitting with our 1 1/2 pound newborn – singing her songs, telling her stories, reading her the Bible. Claire looked like a little bird in a nest of rolled blankets. I wonder if my family worried the mama bird would never come back to that nest.
On the afternoon of Ellery’s graveside service, when my husband and I walked with the usual trepidation into Claire’s NICU room, we found her with a pink bow glued to her soft head. Something about that simple gesture by the nurse assigned to her that day made Claire into a baby. I stopped waiting for her to die and started willing her to live. That day we read her a storybook and cried tears of cautious hope. We took a picture with Dan’s wedding ring pushed up to her elbow – it would have made it to her shoulder but we were still nervous touching her tiny body. We would show her that photo when she was older to remind her of how small she had been. We started talking about tomorrow.
Our journey through the NICU took 115 days and uncountable hours of frantic emotional swings. Claire endured surgeries for intestinal problems, stomach problems, eye issues, and hydrocephalus (from brain bleeds in both hemispheres). She weaned off the ventilator only to have to go back on during a bout of pneumonia. A mysterious blood infection followed. More IV lines, more antibiotics, more consultations. When we finally made our way to the door after four months, Claire weighed 6 pounds and was yellow from liver problems. She was fed exclusively into her intestines through a feeding tube connected to a portable pump because her stomach was not working. Looking back at the pictures of us leaving the hospital that day, I am surprised they let us out the door at all.
I learned a million lessons during Claire’s infancy and early childhood. Most importantly, I found that the childhood faith I had always professed was even more solid and useful than I had ever imagined. It made sense. I learned to long for and love the idea of Heaven. I stopped worrying so much about my performance and began embracing the importance of a life well-lived in every moment – the mundane and the majestic. I understood that perfect isn’t the same for everyone and that His glory shines brightest in weak vessels. I saw that God is near when we are sick and weak. Dan and I realized we were rich in friends. We realized our commitment to each other was more than youthful infatuation; it was strong enough to support us in a crisis. And so much more . . .
Today Claire is a healthy 14 year-old. She lives with cerebral palsy that affects her left side, but she doesn’t slow down for much. She has endured a few more surgeries (the most recent a shunt revision in August 2012 and two tendon lengthenings in 2014), attended many hours of physical and occupational therapy, and refers to math as her favorite subject even though it doesn’t come easily at all. But she loves dancing, school, playing with her sisters, and listening to music. Her personal goals include becoming a doctor, a police officer, and a mom, depending on the day you ask. But one thing is certain: she smiles with contagious joy and brightness. It is amazing to watch her win friends. She’ll never give up on something she wants to do, and she’ll make you feel brave.
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Photo thanks to Jaymes Schrock – see his photography website for more shots of our girl.