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On December 2, 2015, we excitedly went to the doctors to sneak a peak at the newest addition to our family, Baby Jp3. We almost didn't take the Maternal Fetal Medicine appointment since I had just gone to the OBGYN two weeks before, but John had been traveling out of the country and he insisted that we go just to be sure all was on track. We didn’t have childcare, so with a 16 month old Jocelyn and an almost 3 year old Jaxson, off we went. The kids were bouncing around the room as young toddlers would. The nurse became stern and reminded us that if they were going to act up, they would have to leave. I got a terrible feeling about her demeanor and energy shift. She told me to take a bathroom break. I remember seeing her pow wowing with the doctor with whispered voices outside the door. Something was wrong. I knew it in my gut. Then the storm rolled in out of nowhere with one simple question from the doctor, “Does anyone in your family have a history of skeletal issues?”
We walked into that room full of hopes, dreams, joy, and anticipation of what our family was going to look like in the coming year. We walked out of the office scared, confused and overwrought with what ifs. What if the baby was born without an arm, like the ultrasound suggested? What if this isn’t just a physical condition, but one with cognitive challenges? How are we going to explain all of this to our family after we had just announced that we were expecting? How will we manage all of this with two very young toddlers at home. What if the baby didn’t survive?
We spent the next six months navigating seemingly endless procedures and appointments, including meeting with one of the top skeletal doctors in the world, to determine a diagnosis. With each ultrasound, the doctor would painstakingly measure every bone in her body trying to chart her growth and predict outcomes of her birth, yet they still had no idea what genetic condition we were facing. We simultaneously decorated and celebrated this little fighter inside me while we planned a for an extended NICU stay or even worse, her funeral and burial arrangements out of state should she pass. Our hearts broke for our children who were so excited about meeting their baby sister, yet we knew that there was a chance that she may never come home from the hospital. Only one thing was for certain, she would be cherished and loved for however long she was meant to be in our lives. We dug deep to find a glimmer of hope in the unseen. We acknowledged our fears, sadness and anger, but remained positive for our young children who couldn’t understand the heartache that weighed on our souls. This took an enormous amount of faith, love and grace to guide us through this time in our lives.
On June 17, 2016, Jaice Eleanor Petricig was born with a room full of surprised doctors. While it would still take her team at Johns Hopkins two more months to determine a diagnosis, we could breath easy for a short time knowing that we overcame one big hurdle; birth. Jaice’s uber-rare metabolic bone condition, Hyphophosphatasia aka HPP, is one that has a wide spectrum of symptoms and prognosis. Many infants do not survive pregnancy or the months following birth, and those that do, need significant medical interventions. Yet, here we were with this child who wasn’t exhibiting the classic symptoms and who was seemingly healing before our eyes. We have celebrated every unique milestone with her and the beautiful blessings that she brings to our family. Three years later, Jaice continues to amaze her medical providers and sprinkle sunshine to every person that she encounters. She is the rainbow we were searching for amidst our storm.
