Our Story
In 2015, we had our first daughter, Adleigh, and a short eighteen months later, we had our first son, Ryker. Both pregnancies went according to plan and we were overjoyed with our two babies both in diapers!
In 2018, we lost our daughter, Radiance, at 21 weeks’ gestation. I had a subchorionic hemorrhage on my placenta, which induced labor. She lived for about an hour. This first experience of losing a child felt incredibly shocking, overwhelming, confusing, isolating, impossible and devastating. Before this, I had no concept for my body becoming an unsafe space for my child.
In 2019, we had our son Caleb. My pregnancy with him was a roller coaster of good news and bad news. We were told he may have a heart defect, a GI blockage, dilated kidneys, short femurs, and growth restriction all leading to a diagnosis of Downs Syndrome. Upon further testing, the doctors ruled out many of the above issues leading us to Caleb’s birth where it was believed he most likely had pyloric stenosis, which would need to be surgically fixed shortly after birth.
On August 9th, 2019 Caleb made his entrance into the world! About 15 hours into his life, Caleb’s oxygen levels dropped. The doctors confirmed he did have a heart defect (coarctation, a narrowing of the aorta) which would require open heart surgery to fix. Caleb spent all his 28 days of life in the NICU and CICU (Cardiac Intensive Care). Like his time in the womb, Caleb’s life was filled with many ups and downs. He was a mystery to the doctors as typical treatments were not helping. His care team worked incredibly hard to put the puzzle pieces together to gain a full picture of a diagnosis and treatment plan. Caleb’s issues included GI blockages (which he had two surgeries to fix), a heart defect, urinary problems, and low oxygen levels. While on ECMO and the day before he died, we received Caleb’s whole exome test results (an extensive genetic test), which showed a gene deletion related to a fatal lung disease called Alveolar Capillary Dysplasia with Misalignment of the Pulmonary Veins. ACDMPV inhibits one’s ability to oxygenate their own blood.
On September 4th, we held Caleb in our arms as he slowly died—the most difficult day of my life. Thankfully, family and friends came to the hospital to say goodbye. Watching Adleigh and Ryker say goodbye was excruciatingly painful. The experience of leaving the hospital without your baby is indescribable.
After Caleb died, I was a mess. My emotions vacillated from sadness to anger and back. Nothing could take away the pain from losing Caleb. I chose to lean into my grief process to honor myself, Caleb, and God. I leaned in even when it was hard and let myself experience every emotion and thought. Grieving is the only path to healing. It’s necessary, difficult, sacred, and beautiful. Geoff and I have fought for our marriage amid our individual grief and the struggles that can arise from grieving differently. Though I will never be content with Caleb’s death, I do believe God can heal my heart as much as possible on this side of heaven.
In 2020, we had our beautiful, double rainbow baby, Finlee Hope. She is beautiful, healthy, and perfect. She is a gift. She is a miracle. We are forever grateful for her life.