Renee's Story

Diagnosis

Renee was prenatally diagnosed with hypoplastic left heart syndrome, double outlet right ventricle, and malposed great arteries at 25 weeks and 2 days.

Birth

Renee Lee was born on May 14. Full term, 7lbs she came into the world surrounded by family in Durham, NC.

Pre-Stage 1

Admitted at 40min, Renee spent 8 days in the Pediatric Cardiac ICU. During this time she breast- and bottlefed, benefitted from supplemental oxygen and got daily echocardiograms.

Stage 1: PA Banding

On May 23, mom, dad, and grandma sent Renee off for her first heart catherization, where a balloon was used to open a small hole in her atrium, and open heart surgery, where a band was placed around her pulmonary artery.

Interstage In-Patient

Renee was extubated on May 27 and began breathing on her own. She began the hard work of weaning medication and support and was moved from the PCICU to step down unit on May 30.

Going Home

On June 6, Renee was discharged. She breathed outside air and met her dog for the first time!

Interstage Outpatient

The next three months were filled with many appointments in Charlotte: pediatrics, cardiology, feeding therapy, occupational therapy, ENT, audiology, ophthalmology, and video visits.

Interstage Monitoring

In addition to video visits with the Duke team, Renee was monitored remotely. Daily weights, heart rates, and twice daily pulse oxygen levels were shared with the Duke Interstage Monitoring team.

Stage 2

After a pre-Glenn anesthesia procedure in September, Renee went in-patient in for the stage 2 open-heart surgery (Glenn & DKS) on October 15. Though the surgery went well, the following days were complicated by continued hypoxia. For the next few days our little one fought hard to get blood into her lungs, but it became clear that she could not do it on her own.

Emergency Intervention

Four days after the Glenn, the incredible team at the Duke PCICU made the call to bring in Renee's surgeons. On October 19, Renee went in for emergency open heart surgery and had a BTT shunt constructed. She came back to the PCICU with her chest open for the first time in her life.

A Complicated Recovery

Renee's chest was closed bedside on Monday, October 21. And while, her oxygen saturations improved and Renee began breathing on her own, a large blood clot was identified later in the week. This meant that the next Friday, October 25, Renee went in for a third procedure during this hospitalization to have the blood clot removed.

Discharge

After celebrating her first Halloween in the step-down unit, Renee was discharged on Monday, November 4.

Living the Glenn Life

After the Glenn, Renee focused on a number of therapies to ensure she was meeting her milestones. Physical therpay to hit the gross motor skills, especially after so much time in a hospital bed. Feeding therapy to work on oral skills and kick the NG-tube. And speech therapy, to ensure that her language skills did not fall behind with her unilateral hearing loss.

Tube-Free

In mid-April after a swallow study showed silent aspiration, Renee began drinking thickened liquids. With this adjustment and her newfound interest in Veggie straws and sardines, Renee was able to wean off of her NG-tube before making 11 months. She has since taken-off and continues to eat and drink like a champ! For the first time in her life, Renee no longer needed daily weigh ins and food intake did not need to be tracked to the mL.

Activities

Renee tries her best to live life as a normal toddler. Storytime at the library, swim class, travel to visit family, and playdates keep her busy between appointments.

"Half the heart, twice the fight." — Team Renee