August 26th was Daniel's 8th birthday. Chris and I took eight children to Calaway Park in 30 degree heat. He was prince for the day, running from ride to ride with his friends, stopping for snow cones and ending with birthday cake at a picnic table in the shade. I was thankful for the chance to do something normal with my family. These were our last few days of summer vacation before the start of grade 3 and grade 1 for my big boys, playschool for my littlest one.
I was integrating the new information about our baby, that he would likely not ever come home with us. I cried sometimes but mostly tucked the experience away to make time as normal as possible with my children. I felt a deep and somewhat desperate appreciation for them. The perinatal nurse who guided us through the last two appointments said there was no reason for what was happening for our baby, that everything had to fire perfectly and in sequence during a baby’s development and a misfire could mean tragedy. My three healthy boys were miracles to me in a new way now.
The second trimester was usually the time I heaved a sigh of relief, became more open in telling people I was pregnant, started to appreciate the rounding of my belly. This time, I hid. I wore big sweaters and colourful scarves that draped down the front of me. I chatted with preschool moms and playground parents without acknowledging the heaviness in my heart. It was good to laugh, to have places where I could just be who I was and not this new person I was afraid of becoming. I didn't want to cope with people's reactions to our news. Even the kindest questions and most empathetic looks shoved me into my pain; I was spending enough time there on my own. And I didn't want to create a bigger network of people to tell if our baby died.
Night times were different. After the boys went to bed, I sat alone at my computer reading everything I could find on CDH. I wept for the other families with babies suffering or dead, wept for my own sweet baby. When I finally went to sleep, I had vivid dreams that ended with me crying and alone in a pool of blood. They would often start out with something lovely, images of my pregnant self, excitedly awaiting the birth of my baby, a circle of my women friends surrounding me to touch my face and bring me blessings. I was reading The Red Tent and moved by the way that women shared and blessed child birth together. My dreams still always ended with me alone in a pool of blood.
The next week began the appointments. I had an amniocentesis on August 30 and got the preliminary results back two days later; chromosomes appeared normal and we learned that baby was a boy. People always say it doesn’t matter if it’s a boy or a girl so long as the baby is healthy and I knew this to be true now more deeply than I ever could have imagined. I met with Dr. Jeff Pollard the morning of September 3 to ask some of my questions and then met with Dr. Mary Brindle, a pediatric surgeon at the Children’s Hospital, that afternoon. Both offered me time, compassion, knowledge, a keen sense of the amount of information that would satisfy me but not overwhelm. I wanted to know. I kept reading every night, moving from general websites into Medline articles. I left another Google window open at the same time so that I could search out the meaning of the medical terms and understand the research.
These doctors gave a survival rate of 20-50% for our baby. He would be in distress from the moment of birth because he would be unable to breathe. He would be intubated, respirated, taken to the NICU. They predicted that he would live hours or days. Those who survived the early days live in the NICU until they are strong enough for surgery, then are transferred to the Children’s Hospital. They often spend the first six months to a year living in hospital for various procedures and surgeries until they are strong enough to go home.
The surgeon emphasized the long term picture, talking about children she sees for multiple surgeries over many years, the respiratory issues but also the gastrointestinal, developmental, and neurological (from lack of oxygen at birth) implications of CDH even after the initial surgical repair. The 20-50% survival rate had to be measured against the quality of life for those survivors. Often, these children suffered through shortened lives. We had to consider what we wanted for our baby - and for our family.
I met with a Geneticist, Dr. Julie Lauzon, and reviewed the amniocentesis results and the overall picture for our baby’s CDH. The amnio profile indicated that everything was chromosomally normal and, while good news, it didn’t increase the survival odds for our baby. I was collecting information and searching for the hope but finding dire predictions at every turn. The doctors were unequivocally respectful, compassionate, honest, brilliant, gentle, and I was awed and full of gratitude for their care. Dr. Lauzon assured us that the "what did we do wrong" place was not worthy of a visit. This was not a anomaly we could blame on a toxic lifestyle or our old chromosomes.
There were more ultrasounds and the routine prenatal appointments. The full amniocentesis results came back with everything normal. Mid-September I started spotting. My first response was fear, panic really. Then I started to pray; I asked God to take care of my baby, to offer him a peaceful journey, whatever that was meant to be. If he was to die within me, I imagined him held in my belly, in my love, as he moved on. I sat with my hands on my belly and cried, give my baby peaceful journey.
When I was still having spotting and a bit of cramping a couple of days later, I went to my doctor. She had trouble locating the baby’s heartbeat with the Doppler and they called around to find a clinic that could do an ultrasound right away. With Jakey in tow, we headed across the city. Everything looked fine with both baby and me. There was no reason for the spotting and no reason they could see to worry. The next day it stopped.
After that initial blur of information and appointments, I took a couple of weeks off to let myself just be pregnant and in my life. Through each appointment, I was "on" - asking questions and processing information. Each doctor talked of the option of interrupting the pregnancy and that weighed heavily in my spirit as well. Afterwards, I would collapse for hours, emotionally drained. I was having a grief response and knew that it was unlikely to end soon.
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