Charlie Jo Coon came into the world as a healthy 7 lb. 3 oz. baby after a smooth pregnancy where no issues were detected. She was strong, breastfed right away, and we were ready to head home with full hearts. But everything changed during her discharge screening, when a nurse performed a pulse ox test and noticed her oxygen levels were low.

Further testing revealed transposition of the great arteries—and just like that, our newborn was flown by helicopter to Valley Children’s Hospital in Madera, California. There, we learned even more: Charlie also had an atrial septal defect (ASD), ventricular septal defect (VSD), and coarctation of the aorta.

At just days old, she underwent a 16-hour open-heart surgery. We are forever grateful to Dr. Petrossian and Dr. MacDonald, whose skilled hands and steady hearts guided her through it. After surgery, we were told her condition was more complex than expected—something her surgeon called a “Swiss cheese heart,” officially known as Taussig-Bing anomaly. Instead of one or two large holes, her heart had hundreds of small ones. Many were too tiny to close at the time but have thankfully begun to close on their own as she’s grown.

Charlie couldn’t have her chest closed right away due to severe swelling and pleural effusions. It took three long weeks before she was stable enough to return to the OR for chest closure, a procedure that took another six hours. In total, she spent 92 days in the hospital, finally coming home on May 26, 2016.

For years, Charlie did incredibly well without needing further surgery. But now, she’s preparing for her next big hurdle—a procedure scheduled at Lucile Packard Stanford Children’s Hospital to replace her pulmonary valve and repair her mitral valve, both of which have severe regurgitation.

Charlie is now a proud big sister to Blake, who was also born with a VSD. Hearing that diagnosis again brought back so many emotions, but thankfully, Blake’s defect was small and closed on its own by six months.

We are so thankful for every nurse, doctor, and support staff who helped carry us through the hardest days. Not being able to hold or breastfeed your newborn for months is something no parent should experience—but Charlie’s strength has carried us all. She is brave, fierce, and ready to take on this next surgery with everything she’s got.