'A Journey of the Heart'
Last August, when this newspaper carried a story about the remarkable recovery of Eddie Justesen from a brain injury, we reported that his wife Lara was pregnant with their second child. It was a pregnancy that defied the odds, a one-in-a-hundred chance according to the fertility experts the couple had been seeing.
That baby daughter was born Feb. 6 and has been struggling for life since her first day.
Journey Celeste Justesen entered the world with a condition known as the Tetralogy of Fallot, four separate defects of the heart that conspire to impair blood circulation and starve her little body of oxygen. The defect is also called Blue Baby Syndrome, "...a dusky grey and her lips were purple," as Lara described it.
Her doctor discovered the defects during a routine newborn exam, and immediately ordered an emergency medical helicopter trip to Primary Children's Hospital in Salt Lake City.
"They generally don't want to do surgery until six months or 13 pounds," Lara explained. However, after finding that a procedure of using a catheter to dilate the heart's pulmonary valve was not enough, doctors conducted the first of what will be several heart surgeries the day after Easter.
It worked. Journey's skin color is a healthy pink and she has come home to be with her parents and big sister, LilyAnna.
"She's a fighter," Lara said. "She faces a future of echocardiograms, EKGs, cardiologists, hospitals and surgeons." Eventually Journey will need to have her pulmonary valve replaced. First, while she is still a toddler, she will need a transplant from a pig or cadaver. Later she'll get a mechanical valve, Lara said.
About the baby's name: Eddie and Lara chose it before she was even conceived. The Journey reflects the many trips to fertility specialists over the months and years, Lara explained. Celeste is derived from celestial. "We truly believed it was out of our hands whether we got pregnant or not," she added. "If we did, it would definitely be prayers answered."
However, Journey has redefined the meaning of her name because the future she faces. "I call it a Journey of the Heart," Lara said.