The birth of our daughter forever changed our lives. However, three specific experiences inspired my advocacy for our children, commitment to offering support, and drive to empower parents.

Receiving a prenatal diagnosis of a child's heart defect is not guaranteed. That is not to say it's impossible. Here's our experience.

Easter 2018 arrived just as we hit two and a half months in the hospital. It was April 1st. Long before that, I had crafted a plan that our baby girl would be home by Easter. Instead, we found ourselves in the Intensive Care Unit (ICU). She had been rushed

Our story about pacemaker placement and life with it is a brief one. Mostly because the memories of that time are somewhat hazy. I recall feeling lost and defeated. But also, because in the end, it was only a few weeks between the pacemaker saving her life and being switched

The other day, Emanuela unexpectedly wrapped up her Little Gym class early. She stormed out, a bundle of emotions, buried her nose in my neck and vowed never (ever ever) to return to the gym because "everyone is just running all the time". It was futile to try

Last year was... wasted. My ideas, projects and to-do lists were mostly collecting dust. Since I did not accomplish nearly as much as I wanted and planned, I often grappled with guilt, feeling like the year slipped away. But... was it; did it really? In 2023, Emanuela turned 5. We

After so many stories found and told as a journalist in the past decade (and more) of my life, I have never thought I will have the most important story to tell as a mother. We have been given this voice and I feel the need to use it. Thanks

I was told I am brave and that our story is inspiring so many times that it does not leave any room to think otherwise. Hence, I do not dare saying just how scared I can be and how dark my thoughts can go. By saying how anxious I can

Developmental delay, we were told right at the beginning of this journey, is to be expected. I pin it mostly to trauma of open heart (and other) surgeries, multiple anaesthesia, anaesthetics, morphine, rivers of other painkillers and oceans of different drugs. But there is for sure also a tangible, physical,

Once we came home, almost seven months after Emanuela's birth, we started the "real work". While saving her life was always a top priority in the hospital, it was now time to put some quality into it. To make a life worth saving and living. I

All I remember about the afternoon we came home from the hospital for the first time is that I was lost between the meds and milk and pump and jejunostomy and sterilizing and measuring and calculating. I remember standing at the kitchen countertop, barely spending any quality time with my

Entering the surgical ward is the most nerve wracking moment for me. This is how it works... First, she gets unhooked from everything in and on her body. I quickly take advantage of those moments of her freedom... I hold her, cuddle her, kiss her. It's so easy

It has been five months since the hospital became our second home. One of the things life has taught me during this time is how to be happiest with the smallest of achievements. Like, our baby girl opening her eyes half-way. As if just to greet us and show us

Her heart failed. Again. It all happened so quickly. One moment I was holding her, the next alarms on her monitor went crazy, doctors were running to her, while pushing me out of their circle, nurses were rushing to bring them meds, pads, tubes, syringes, and in between, I was

Sometimes I cannot believe it's already been four months since her birth. She's not a new-born anymore.   Sometimes I sit and wonder how it could have been only four months in the hospital. It feels like a lifetime. Time is so relative... She was taken away

It's been two months. She is my whole world. My inspiration. Yes, it is extremely exhausting, but at the same time unimaginably rewarding. There are still some challenges ahead and some new developments, but we have come further in these two months than anyone had expected. This is

It's been a month. She already went through more than an average adult goes in his / her whole life. She stood at the door to eternity, but came back to us. She fought ECMO* with the help of wonderful friends, family members and strangers that donated blood for

How will I say goodbye? How will I let go? How will I keep breathing? I had four months to prepare for this moment. I'm not ready. But she has to go. We walked her to the red line that separates a general hallway from the scrubbed operating

It's that moment when you know - life will never be the same again. And everything else stops to matter.