May is Cystic Fibrosis Awareness Month, so for the next 31 days I will be taking the time to walk you through our 2+ year journey.
Day 1: The Diagnosis
When Gavin was born, we had some last minute complications with his birth, so he spent his first two days in our hospital’s “Special Nursery.” This was before we had any idea about his CF, and this was not a PICU - just a nursery where they could keep an eye on him, and give him some antibiotics via an IV.
While Casey and I were visiting him, they came in to do the newborn screening test, just a prick of his heel to gather some blood for testing. I clearly remember the nurse saying to us, “don’t worry about it, the diseases they test for are extremely rare, your son is just fine.” To be honest, I wish I could go back and slap her. If you are a nurse reading this, never ever ever tell this to a family…you never know what could happen!
When Gavin was five days old, we brought him to the pediatrician’s office for his first wellness check up. We were a bit nervous because the night before we had brought Gavin into the ER. He had filled up three diapers in a row and seemed to be pooping insane amounts right after we fed him. The doctor at the ER assured us that this was “typical” for a newborn, and sent us home – looking back this was sign #1 that something was wrong. Casey and I were not convinced, but headed home knowing we had a visit with his ped the next day.
His pediatrician checked him over, stated that he had lost a little weight (sign #2) but that was again, typical, for a newborn. Told us we had a perfectly healthy little boy and sent us home. We were so happy, and excited and decided to swing through Target on our way home. Once home I was exhausted and promptly fell asleep on the couch. I vaguely remember the phone ringing, hearing Casey say “I need to talk to Jen…” and then Casey waking me awake. “Gavin’s pediatrician just called, he’s been diagnosed with Cystic Fibrosis through the newborn screening test? We’re supposed to call a genetic counselor at the University of Minnesota right away…”
All I knew of the disease was from reading a Lurlene McDaniel books in my early teens. I completely melted down, told Casey that people with CF don’t graduate high school…we then both melted down and left messages with both the pediatrician’s office and the genetic counselor. I think it’s appropriate to say that we were scared shitless (no pun intended)…
WE WALK IN THE GREAT STRIDES WALK THIS UPCOMING SATURDAY, MAY 7th. PLEASE DONATE TO “GAVIN’S GROUPIES” TO RAISE MONEY & AWARENESS FOR ALL OF THOSE LIVING, AND FIGHTING AGAINST CF! PLEASE CLICK THE IMAGE BELOW TO DONATE!