Stay-at-Home Dad Rides the CHD Rollercoaster with Rainbow Baby

Today, at two years old, my son Emerson is a mostly typical toddler. He wakes up each day in good spirits. His scars, his need for occasional medication, and certain limitations serve as reminders of his medical journey.

And what a journey it’s been.

Our rollercoaster began with devastating news during Emerson’s 20-week anatomy ultrasound. Due to his position, the ultrasound couldn’t be completed, requiring a second visit without me present due to COVID restrictions. A high-risk OB provided a second opinion and discovered a defect in Emerson’s heart. Although its severity remained unknown, we were referred to Cook Children’s Medical Center for a fetal echocardiogram. There, Dr. Robert Loar compassionately explained Emerson’s diagnosis – Hypoplastic Left Heart Syndrome (HLHS) – and the difficult road ahead.

We had already been left shattered by a previous miscarriage, but we discovered that that and our rainbow baby’s diagnosis were only a precursor to the challenges we would face.

Emerson was born at Harris Methodist on February 24, 2021. He was immediately placed on oxygen support and transferred to Cook Children’s; the hospital didn’t even have a name listed for him yet, calling him “Boy Jessica Davis.” There in the NICU with Emerson, I was introduced to the overwhelming sights and sounds of monitors, IV pumps, and oxygen.

Two days later, Emerson underwent the Norwood Procedure – his first open-heart surgery – to redirect blood flow through a shunt. For a seemingly endless eight hours, my wife Jessica and I anxiously awaited updates from a nurse through text messages.

Following the surgery, Jessica and I arrived at the Cardiac Intensive Care Unit (CICU) to find Emerson swollen and covered in lines and wires, his chest still open. Though we couldn’t see much, we witnessed the motion of his little heart beating. The surgery was successful, but we knew we still faced challenges in the coming days.

Once Emerson was extubated, the CICU staff began feeding him through a nasogastric (NG) tube. This process took a toll on us. Jessica and I had to learn how to place the NG tube ourselves before Emerson could be discharged three weeks later.

When we got Emerson home, Jessica and I took on the responsibility of managing his medications, feeds, and other needs. We relied on a feeding pump to deliver his feeds through the NG tube, a process that took about an hour per feeding. We also faced the risk of Emerson vomiting forcefully, leading to additional challenges and stress.

The isolation and depression started to affect me deeply, but I wasn’t aware it was depression at the time. The daily routine felt like a prison, amplified when Jessica resumed work, and I had to manage everything alone, including the needs of Emerson’s older sister.

At nearly two months old, Emerson’s oxygen levels dropped below normal, prompting a trip to the ER and then back to Cook Children’s, though only for a week this time. Emerson received a stent inside the shunt from his first surgery and required home oxygen support.

His second surgery – the Glenn Procedure – was scheduled for July 19, 2021, but a severe infection in late June caused a delay. Jessica and I faced the terrifying possibility of losing Emerson during this time. Thankfully, although the 6-8 week treatment for the infection led to a long hospital stay that summer, it was effective. In August, Emerson finally had the Glenn Procedure and we saw significant improvements: no more oxygen, no more NG tube, and greatly improved eating skills.

Nearly two years later, Emerson receives speech therapy twice a week, physical therapy twice a month, and regular visits to his cardiologist. He is expected to receive his third surgery – the Fontan Procedure – in 2024. While this surgery completes the three surgeries he requires, his heart will not be fixed. Knowing this, a transplant is always in the back of our minds, yet we remain hopeful that he may not require such an intervention. 

Day to day, we strive to maintain a sense of normalcy and minimize worries about potential heart failure. The main struggles now revolve around me being a stay-at-home dad to both Emerson and his 8-year-old sister.

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