Ivy’s Story: A Journey of Love, Strength, and Advocacy pt.2

11.5.2025

10 - a personal blog

This is my story — Ivy’s Story: A Journey of Love, Strength, and Advocacy

pt.2

Life after NICU

It took time to adjust — to the quiet of our house, the slower rhythm of the days, and the nights that always seemed to pass too quickly. After forty-six days in the NICU - weeks filled with alarms, monitors, and hospital routines, the silence in our home was almost startling. Yet within that quiet, we found peace.

Our days were gentle. Feedings, cuddles, diaper changes, and naps became sacred rituals — small acts of love that stitched our hearts even closer together. I cherished every moment: her tiny coos, her sweet little fingers holding mine, and the bathtub splashes that echoed pure happiness. Ivy taught me to treasure the intimacy of simple moments — the connections that made ordinary days feel extraordinary.

Mornings were my favorite. Every day, I’d walk into her room whisper “good morning” in the softest tone and watch as her whole face lit up with a smile that could brighten the world.

Ivy was the happiest, most content baby — full of peace, light, and grace. I’m still not sure how I got so lucky to be hers. Each day brought a new joy: a longer nap in my arms, a new expression, tiny sighs that I will forever miss. Those moments became my measure of time — not hours, or days, but memories.

—

But then, Ivy got RSV

The day started as it always did - quiet and peaceful. Ivy had a little congestion and a soft, infrequent cough - nothing that seemed unusual. Still, I reached out to her pediatrician just to be safe. Thankfully, her check-up was completely normal, and the plan was to continue monitoring her at home and follow up with cardiology the next morning for an echocardiogram.

At the time, Ivy was just over three months old — the age we’ve been told would bring her closer to her heart surgery, the one we’ve been preparing for since before she was born.

But over the next few hours, everything changed. Her breathing grew faster. She began retracting, her tiny chest pulling with each breath. I was uncomfortable with her appearance — a deep, instinctive unease only a mother knows. My instincts, sharpened by both nursing and motherhood, told me she needed further evaluation. So I loaded her in the car and drove us to the emergency room.

It wasn’t long before she was surrounded by monitors and overstimulating noises again — the beeps and alarms I thought we had left behind. Ivy was crying - cyantic with dangerously low oxygen levels. She was having a tet spell - symptoms related to her heart condition Tetralogy for Fallot. Further testing and lab work revealed she was also positive for a respiratory virus.

RSV — three letters I had heard countless times throughout my nursing career — suddenly held new meaning. This time, it wasn’t just a diagnosis. It was my daughter’s reality.

Days blurred into nights, and once again, we found ourselves in the intensive care unit - the Pediatric Intensive Care Unit (PICU) at Our Lady of The Lake Children’s Hospital in Baton Rouge, Louisiana. But even then, Ivy’s light never dimmed. Between the wires and oxygen tubes, she still found reasons to smile. Her spirit — gentle and brave — reminded everyone who met her that joy can exist even in the hardest places.

—

A Battle Bigger Than RSV

In the days that followed, Ivy’s breathing became more labored. Despite oxygen support and medication, her tiny body was working harder than it should have.

Each monitor beep became a language I didn’t need translated — every fluctuation a message my heart already understood. I stayed by her bedside, barely sleeping, praying between breaths, watching the nurses and doctors move with both urgency and grace.

When the team mentioned transfer to a higher level of care, I felt both fear and relief. Fear, because I knew what that meant — she was critical. Relief, because I knew she’d be somewhere with more resources, more expertise, more hope. We were transferred to Ochsner Medical Center in New Orleans, Louisiana— a name I had heard spoken with trust and reverence, now suddenly the center of my world.

Through the beeping and bustle, through the prayers whispered in the dark, Ivy reminded me that peace doesn’t always come from circumstances — sometimes, it’s born right in the middle of the storm.

Ivy and Life Support

… pt. 3 to be continued