Aloha Family and Friends,

December 3rd, we welcomed our beautiful baby girl, Parker, into the world at 6:01pm at Maui Memorial Medical Center. We were joyous and immediately fell in love with her. The following day, Parker had a routine newborn wellness check. Her oxygen levels were low, so she spent that night in the nursery. By 3am Parker was on CPAP at 100% oxygen and needed additional care Maui couldn’t provide. Parker was transported that morning to Kapiolani NICU on Oahu. On arrival, we received a call that changed our world. Parker’s diagnosis, a very rare congenital heart defect; Shrone’s Complex with a dysplasic unicuspid aortic valve, long segment Coarctation, and a large VSD.

We arrived at Kapiolani to see the shocking sight of our new reality. Our daughter- intubated, more IV's, monitors, and machines than we could imagine, were attached to her little body.

The next 5 days were spent preparing and stabilizing Parker for her next journey: a private medical jet to California.

Stanford was our only option for Parker’s care due to the complexity of her heart defects.

Once at Stanford, everything was a whirlwind of information. We were crash coursed on medical terminology and began our new life as parents rotating nights in the CVICU and Ronald McDonald House. December 12th, Parker had her first open heart surgery: bilateral pulmonary artery banding. This surgery bought us much needed time for Parker to grow, and her heart to become stronger. Parker showed her strength in her fast recovery. She was extubated, breathing on her own, and able to eat!

Parker fought hard, however due to her defects, her heart and lungs struggled to supply her body with oxygen. The doctors said it was like running a daily marathon. After weeks on not gaining weight, and all other medical interventions unsuccessful, we made the difficult decision to reintubate Parker. This would reduce her metabolic demand and allow her to gain weight. Intubation isn't without its side effects, which we quickly realized. 2 days after intubation, Parker had a staph infection from the ET breathing tube, delaying surgery.

The bright side- Parker was finally gaining weight!

January 20th, the night before her rescheduled surgery, the surgery team called it off- Parker yet again had staph, which now had colonized in her breathing tube, and would require another course of antibiotics.

Finally, Monday, January 27th, Parker underwent a Ross-Konno w/ Coarc Reconstruction w/ VSD repair, w/ PA band removal. Parkers aortic valve was deemed unrepairable. The team replaced her aortic valve with her pulmonary valve, used donor tissue and a synthetic conduit to build a new pulmonary valve, reconstructed her aorta, and closed the VSD (hole in her heart). Altogether, this massive operation took 15 hours with 6.5 hours on bypass.

Parker has been doing wonderful, we even are hopeful the surgeons can close her chest this weekend!

We are expecting another 3 weeks in the CVICU before we move to the patient care unit and will be required to stay another week in California for follow-up visits once discharged before returning home to Maui.

Unfortunately, this won't be our last time at Stanford. Parker will require follow-up open heart surgeries throughout her life as the synthetic conduit used to replace her pulmonary valve won't grow with her. We will have frequent ECHO's and follow-up visits with a cardiologist on Oahu.

We are grateful for all the love, prayers, and support we have received from everyone.

With months of ICU stays, 2 open heart surgeries, 2 private medical jets, and several future surgeries, we would appreciate any donations and prayers you can give.

Mahalo!