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Renee's Story
From a prenatal diagnosis at 25 weeks to thriving toddler life — Renee's journey is one of extraordinary courage, love, and resilience. Here is her story, milestone by milestone.
25 Weeks Gestation
Diagnosis
Renee was prenatally diagnosed with hypoplastic left heart syndrome, double outlet right ventricle, and malposed great arteries at 25 weeks and 2 days.
May 14
Birth
Renee Lee was born on May 14. Full term, 7 lbs, she came into the world surrounded by family in Durham, NC.
Days 1–8
Pre-Stage 1
Admitted at 40 minutes old, Renee spent 8 days in the Pediatric Cardiac ICU. During this time she breast- and bottle-fed, benefitted from supplemental oxygen, and got daily echocardiograms.
May 23
Stage 1: PA Banding
Mom, dad, and grandma sent Renee off for her first heart catheterization — 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.
May 27 – May 30
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 the step-down unit on May 30.
June 6
Going Home
Renee was discharged on June 6. She breathed outside air and met her dog for the very first time!
Summer
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.
October 15
Stage 2: Glenn & DKS
After a pre-Glenn anesthesia procedure in September, Renee went in-patient 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. Our little one fought hard to get blood into her lungs.
October 19
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.
October 21–25
A Complicated Recovery
Renee's chest was closed bedside on Monday, October 21. While her oxygen saturations improved and she began breathing on her own, a large blood clot was identified later in the week. On October 25, Renee went in for a third procedure to have the blood clot removed.
November 4
Discharge — First Halloween
After celebrating her first Halloween in the step-down unit, Renee was discharged on Monday, November 4.
Winter–Spring
Living the Glenn Life
After the Glenn, Renee focused on a number of therapies to ensure she was meeting her milestones: physical therapy for gross motor skills, feeding therapy to work on oral skills and kick the NG-tube, and speech therapy to ensure her language skills didn't fall behind with her unilateral hearing loss.
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Before 11 Months
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 her NG-tube before making 11 months. She has since taken off and continues to eat and drink like a champ!
Today
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.
Renee in Motion
A few clips of our little fighter thriving
Renee's Moments
Growing Strong
Thriving Every Day
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