Ivy’s Story: A Journey of Love, Strength, and Advocacy pt.1
11.4.2025
09 - a personal blog
This is my story — Ivy’s Story: A Journey of Love, Strength, and Advocacy
pt.1
This is where Ivy’s story truly begins — the moment that changed not just the course of my pregnancy, but the purpose of my life. What started as fear slowly became faith, and what felt like loss transformed into love in its purest form.
Processing the Diagnosis
When I first heard the words “Down syndrome,” I didn’t know how much that diagnosis would change me — not through fear, but through love. I remember the day I received the news — the moment everything became a blur.
“I’m sorry, but your prenatal genetic screening came back positive for Down syndrome.”
That single sentence replayed in my mind for weeks — the shock, the denial, the confusion. There were so many questions. What would life be like? What kind of support would my baby need? How could I be the best mom for her?
I gave myself permission to feel everything. There’s no “right” way to respond to news like this — only an honest one.
I was only ten weeks pregnant, and suddenly my world felt like it was unraveling. I chose to pursue the earliest diagnostic test available — a chorionic villus sampling (CVS) — which confirmed that Ivy would be born with Trisomy 21 (Down syndrome). The results validated every emotion I had carried since learning my pregnancy was high risk: the fear, the worry, the uncertainty — and love, all tangled together.
Two months later, a fetal echocardiogram revealed another challenge: a complete Atrioventricular Septal Defect (AVSD) — a congenital heart defect that would require surgical repair within the first few months of life.
It was a lot to process, and at times it felt like too much. But with time, I began to learn more about Down syndrome, connect with families, and find support systems that reminded me I wasn’t alone.
⸻
Preparing for Ivy
As the weeks passed, fear began to soften. In its place grew hope — and determination. I started preparing not just for a baby, but for my baby.
I met with specialists and built a care team. I learned about early-intervention services, therapies, and the medical supports that might be needed. Along the way, I discovered stories of children and families thriving with Down syndrome — lives filled with joy, challenges, laughter, and deep love.
Gradually, I began to see Ivy’s future not through the lens of her diagnosis, but through the love I already had for her. She would be her own person — with her own strengths, her own light, and her own beautiful path in the world.
⸻
Looking Ahead
Ivy’s diagnosis didn’t change how much I loved her — it changed how I prepared to welcome her.
I still had dreams for her, but now I also had new knowledge, new support, and a growing community ready to walk this journey with me.
Ivy would be born with Down syndrome — but more importantly, Ivy would be born my daughter. And I couldn’t wait to meet her.
⸻
Meeting Ivy
The day Ivy was born was filled with so many emotions — excitement, anxiety, and an overwhelming sense of love. After months of imagining her face and wondering who she would be, the moment finally came when I got to hold her in my arms.
She was here.
Tiny, beautiful, and completely herself.
The delivery may not have gone exactly as I imagined — few do — but the moment I saw Ivy, nothing else mattered. Her features were soft and familiar, and her presence carried a calm I can still feel today. It was as if she already knew she was deeply loved.
⸻
Ivy’s Early Journey
On September 11, 2023, at 37 weeks gestation, Ivy Irene entered the world - weighing 6lbs 10 oz. She was born with Trisomy 21 (Down syndrome) and a congenital heart defect known as an Atrioventricular Septal Defect (AVSD). Because of her known heart and chromosomal condition, both the Labor & Delivery and the Neonatal Intensive Care Unit (NICU) teams were present for her arrival.
The moment she was born, Ivy cried softly — her first brave sound. Her delivery was smooth and without immediate complications, but within minutes, she began to show signs of respiratory distress and required oxygen support. She was admitted to the NICU with a diagnosis of Respiratory Distress Syndrome (RDS).
For the first 48 hours, she received minimal oxygen through a nasal cannula, and by day three, she was breathing entirely on her own. Shortly after, she developed jaundice and spent a brief time under phototherapy lights — her first tiny sunbeams. Within 24 hours, her bilirubin levels normalized, and she was back in my arms.
At just ten days old, her care team identified an additional challenge — Tetralogy of Fallot (TOF) — a rare and complex cardiac condition caused by a combination of four structural heart defects. With two congenital heart defects, the plan became to treat medically, with surgical repair anticipated between four to six months of age. To support her heart, Ivy was started on Furosemide (Lasix) — a medication that helps the body remove excess fluid, easing the heart’s workload.
Ivy spent the first seven weeks of her life in the Neonatal Intensive Care Unit (NICU) at Woman’s Hospital in Baton Rouge, Louisiana. During that time, her tiny body fought hard, supported by oxygen therapy, phototherapy, cardiac monitoring, and nutritional interventions — each one helping her grow stronger and preparing her for the road ahead.
⸻
Her First Surgery
On October 12, 2023, Ivy underwent her first surgery: the placement of a gastrostomy tube (G-Tube) to meet her nutritional and cardiac needs. She came through bravely but soon after, developed Stage 1 Necrotizing Enterocolitis (NEC) — a serious intestinal condition.
Through swift intervention, expert medical care, and by the grace of God, Ivy responded well to treatment and made a full recovery within two weeks.
Finally, on October 27, 2023, after 46 days in the NICU, Ivy was discharged home - breathing on her own, thriving, and surrounded by love, she was finally where she belonged. Her bright spirit and resilience reflected the incredible impact that compassionate, coordinated, and family-centered care can make.
⸻
A Stay in the NICU
Because babies with Down syndrome are at higher risk for certain medical issues at birth, close monitoring is often necessary. Due to respiratory distress and her congenital heart defect, Ivy was taken to the Neonatal Intensive Care Unit (NICU) for additional support.
Seeing your baby connected to monitors and wires is something no parent ever feels fully prepared for. But I reminded myself that these tools were helping keep her safe. The beeping, the sensors, the constant checking — it was all part of her care.
The NICU was both comforting and hard. I was grateful for the technology and the skilled hands watching over her, but I longed to bring her home. Holding her, learning how to feed her, whispering lullabies late at night — those moments became our anchor.
The nurses and doctors quickly became part of Ivy’s extended village. They explained everything with patience and kindness, celebrated each step forward with us, and created memories I will spend a lifetime cherishing.
⸻
Finding Our Rhythm
Each day in the NICU brought new milestones — a stable oxygen level, a successful feeding, gaining an ounce, a steady heartbeat. Every little victory was a reason to celebrate.
We learned that progress in the NICU isn’t always linear, but every step forward mattered. And with each passing day, Ivy showed us just how strong she was.
⸻
Bringing Ivy home
The day I brought Ivy home from the NICU, life felt so surreal. After weeks of watching monitors, hearing alarms, and counting the days until discharge, we were finally free — free to just be.
That morning, I buckled her into her car seat, still so small, her tiny body wrapped in the softest blanket. I remember holding my breath as we wheeled through the hospital doors — not out of fear this time, but disbelief. We were really going home.
When we pulled into the driveway, the world felt still. Her nursery — the room that had waited patiently for her since before she was born — finally came to life. She got to see it for the first time: the gentle colors, the books lined neatly on the shelves, the little toys arranged just so. Everything I had dreamed for her was right there, waiting.
That evening, I held her in the rocking chair that had sat empty for months, untouched since I first placed it in the corner by the window. For the first time, she slept in her own crib. We spent hours in her nursery, reading books, singing songs, and taking in the peace that only home could bring.
She met our puppy, Baker — curious, gentle, instantly devoted. And together, the three of us rocked as the world outside disappeared. Time felt sacred that night — quiet, slow, and full. I remember tracing her tiny fingers, memorizing her breathing, thanking God for every second. It wasn’t a grand moment, but it was holy. The kind of moment that reminds you that love doesn’t always need a heartbeat or a monitor to be measured — it lives in the stillness, the soft light, the sound of your baby’s breath against your chest.
That night, life didn’t feel perfect, but it felt whole. It felt like home.
⸻
Carrying Ivy’s Light Forward
Ivy’s story will always be the heart of my purpose. Her life — though brief — continues to illuminate the importance of compassion, inclusion, and advocacy in every corner of healthcare and community.
Through Ivy, I witnessed both the fragility and the strength of life in its purest form. I saw how collaboration, education, and empathy could change the course of a family’s story. And I learned that advocacy doesn’t begin in a meeting room or at a bedside — it begins in the heart of a parent who refuses to give up.
The Ivy Branch was created in her honor — a place where love lives on, stories connect us, and awareness grows into action. Here, I hope to help other families feel seen, supported, and empowered to advocate for their children — because every child deserves a chance to thrive, and every parent deserves to know they’re not alone.
Ivy taught me that our voices matter — and when shared together, they become a movement. Her light continues to guide mine, reminding me that even in the most fragile beginnings, there is strength, purpose, and beauty.
Ivy’s story is a testament to what happens when love meets advocacy - when families providers and communities come together to give every child a chance. Through the Ivy branch, I carry her light forward - one story, one family, one heart at a time.
