I can’t possibly summarize the journey of loving and losing Olivia in one blog post, but I also know that I can’t possibly have a blog focused so heavily on motherhood without sharing her. I don’t yet know how much I’ll write here about grief and infant loss and parenting after loss, but I may. So it’s important that you know this part of our story. Our story is incomplete without Olivia.
We welcomed Olivia Grace to our family on April 24, 2016. My labor and delivery of Olivia was terrifying, and we knew immediately after she was born that things were not good. Olivia was born weighing just barely 5lbs. She was born completely purple, not breathing, and lifeless. Doctors attempted to resuscitate her, and eventually had to intubate her to keep her alive. She was transferred to a level 4 NICU the same night she was born, and that evening we learned she sustained life threatening head injuries from the use of a vacuum during delivery.
She recovered from the head bleed, but from the time of delivery we also knew there was a serious genetic condition affecting Olivia’s body. She failed multiple extubation attempts, which meant she required life sustaining equipment simply to breath breath. She was born with a long list of physical anomalies, and had low (to no) muscle tone. From the time she was born, she was unable to move with the exception of occasionally wiggling her fingers and toes.
We spent the next 2.5 months of her life alongside doctors and specialists who worked tirelessly to diagnose our daughter’s complex medical case.
Following a muscle biopsy in early July, we learned that Olivia had a rare type of Spinal Muscular Atrophy. A diagnosis that meant her condition would only worsen over time. She would never get stronger. She would never be able to lift her head, her limbs. She would never sit or crawl or walk. She would never learn to swallow or drink or eat foods. But most critically, she would never breath without the assistance of a ventilator 24/7.
Olivia passed away 3 days after we received her diagnosis.
As I mentioned at the beginning of this post, I may or may not share more about Olivia and grief and loss in general. I’m not sure yet how easily those stories will flow from my mind to the keyboard right now. So time will tell I suppose. But Olivia’s life was remarkable and highly meaningful to us all. You can read more about Olivia’s life on the blog we updated during her time with us.