MICRO MIRACLE FOUNDATION
Gabriella (meaning: God gives strength)
My little Princess was born at 29 weeks weighing 1,26kgs. Her early days in the NICU were easy, or so I thought. When she was born, she was amazingly breathing on her own after only two days on the ventilator. I was told that was a good thing and I was running on a false sense of security, delusion and loads of adrenalin... I thought we would sail through it without any problems whatsoever. Sadly I wasn't aware that it's quite common for things to go really well in the first few days... They call it the honeymoon phase. I even got to hold her. It was the most amazing moment of my life. Nothing like what the first time was supposed to be, though. She had tubes and wires that beeped and whooshed everywhere and I couldn’t move her much, once I had her in place. But her nurses were wonderful and helped me to forget that she was so tiny. I even managed to forget we were in the loud, scary NICU for a few fleeting moments. But then we experienced her first hiccup and I crashed... I was so freaked out and petrified, I cried a lot and even struggled to see her because I would just crumble. We experience the most gut wrenching fear and pain at two and a half weeks that snapped me back into reality.
Our Paediatritian came into my room and sat down to talk. Ella had suffered a pleural effusion and she had worked for 5 hours trying to resuscitate her. They were able to revive her (“like, from the dead?” I remember thinking), but she was on a ventilator and had an emergency underwater drain in her chest to try drain out all of the water. She wasn't able to tell me if Ella would be ok which was the hardest truth to hear when all you want is to be told is not to worry and that everything would be fine. I don’t remember much from that day aside from refusing a sedative the nurses were trying to give me and laying in the hospital bed with my husband, promising to each other that we’d get through it together. We prayed nonstop all day while I constantly fought away any negative thought that persistently kept creeping into my head. Our little warrior princess did indeed survive the effusion. But her outcome was still very unknown. We were warned that babies as sick/premature as she was could have any number of life long problems. This was my biggest fear.
Despite this rocky beginning, slowly, slowly, she got stronger. But it was a minute by minute growth and I still battled intense demons. Why had this happened to us? Surely we didn’t deserve it. I sometimes blamed myself. I read up on everything to do with preemies and talked to my doctor and nurses constantly so that I understood as much as possible, I believed knowledge was power and I needed as much power as I could get. As the weeks rolled on, our routine became much more bearable. Enjoyable, even. Doctors started saying things like “when she comes home…” which doesn’t seem like much, but it was like angels singing to me. It meant they were certain she would be coming home. She was off of the ventilator and breathing on her own without assistance from CPAP and I could even nurse her! Things were really looking up, she had surprised us all and all the staff were talking about her strength and how she was such a little fighter. These conversations healed my aching heart more than any medicine could ever do and I reveled in them.
Then, July 31st, 2013. 75 days after she was born and on her actual due date, we were told that our daughter could go home. Poof. Just like that, she was ours. Not the doctors’ or nurses’, but ours. I had little fear that she’d go and do something stupid like stop breathing. Maybe it was foolish, but I had total faith in my angel's strength and determination. She was home. And she thrived at home, but we soon found out that having her home was almost as hard as having her in the NICU. Due to missing out on the last 11 weeks in utero, she had an immune deficiency. Even a simple cold could land her back in the ICU on a ventilator. So we were on lock down. We didn’t take her anywhere and visits from family and friends were few and far between.
The weeks and months to follow were full of check ups, X-rays, blood tests and specialist appointments. This is when we were told Ella had "neurological issues" and we were confused, "what does that even mean" we asked. The explanation that followed was a very hard truth to accept but to be honest I had started suspecting things just weren't right despite everyone telling me to stop being paranoid as she is a preemie so things just take a little longer. My baby girl has cerebral palsy.... but that's not even the hardest part, we weren't able to know what that even meant for her as CP is an umbrella term basically describing damage to the brain. We would need to wait until she reached about 2years before we would have a better idea of the extent of the damage. Just as I thought things couldn't get any harder I started noticing that she was having strange "startle" type movements. At first I assumed they were harmless but the more I saw them I got a sick feeling in my tummy because deep down I knew there was something wrong. I started to suspect seizures and was terrified.
Fast forward to today, Gabriella is a gorgeous, courageous and determined 3 year old who fights relentlessly against the odds but always has a smile on her face. She has seizure control with very little help from medication, she is able to sit unassisted, army crawl and move herself around to a degree in a gait trainer (walker). She is making huge progress in her swim lessons, hydrotherapy sessions and equine therapy. She has just started saying mama and dada along with a few other words, is eating beautifully and even manages at times to feed herself no matter how messy she may be. Everyone that meets our precious gift from above can't help but fall in love with her infectious smile and love for life. She has taught me so much about life and what really matters. Regardless of how hard this journey can be at times I am honored to have been chosen to be Ella's mom. She has brought our family closer, taught her brothers tolerance, acceptance and inclusion, she has touched hearts around the world and she has changed me forever. I have always known that my little girl is special but I think the best is yet to come. I believe I'm my heart that she has an incredible purpose on this earth and I am only to happy to be her voice until the day she is able to make her voice heard. My warrior princess has her NICU scars but I won’t teach her that they’re because she was sick and weak. I teach her they’re symbols that she’s a fighter – a strong little lady with the heart of a warrior who can overcome any obstacle And that makes me grateful for every second of our journey together.