Louie : Love Keeps Him Here

March is Brain Abnormalities Awareness Month

By Maria Bottino
Mommy to Louie
Born August 2021
Hypoxic Ischemic Encephalopathy (HIE)

I’ve been told since I was 16 years old that I would never get pregnant due to a health concern of my own – endometriosis. In January 2021 that quickly changed with a very positive pregnancy test. I was ecstatic, but also a little scared. My pregnancy was incredible; it was perfect until the day it wasn’t.

When I was pregnant with a very healthy child, I had all of the big dreams and hopes and expectations. I planned holidays and birthdays in my head. I planned our trips home to our family. I thought about day care and homeschooling. I truly thought of everything as it was such a blessing to be able to become pregnant and carry a child.

However, our Louie was born at 29 weeks via an emergency c-section due to a placental abruption. This is where the placenta breaks away from the uterus prematurely and baby, or both baby and mom, lose a lot of blood. Louie lost most of the blood in his body and was not born breathing. He was born at 2:38pm and it took the rest of the night for hospital staff to stabilize him. I only got to see him for a few short minutes the night he was born.

The neonatologist chatted with us and explained what had happened. Louie lost a lot of blood and his brain went without oxygen for a long time as they tried to stabilize him. He was on every support imaginable. Blood transfusions, ventilator, blood pressure support via medications, all of it. The first few days were scary and hard. Things changed bad to good and good to bad what seemed like every ten minutes.

After the first couple of days, he seemed to really stabilize. Neurology came by and were very surprised by his assessment and had high hopes. However, we weren’t able to get any brain imaging done early on as he was too premature, intubated on a ventilator, and unable to maintain his body temperature. We were looking at 36 weeks at the earliest to be able to see the extent of the brain damage.

On Angels’ Wings came into our life during Louie’s NICU journey, right after his diagnosis, when we were unsure if we would ever leave the hospital. Our family flew in from out of town and it was documented beautifully.

Louie was strong and he fought. He was weaned off of the ventilator, he was eating by mouth, he was working with therapies and was doing so well. But the day we learned the extent of his injury, I will never forget. His case of hypoxic ischemic encephalopathy was incredibly severe. So severe that we were told his quality of life wouldn’t be great. He would never walk or talk, he would neverunderstand us or smile or reach most of his developmental milestones. How incredibly painful. That little boy in that crib fought for his life and he was so seemingly perfect; to get that sort of news was devastating.

Louie’s diagnosis impacted our entire lives. He left that NICU on hospice after 92 days and, while he is now a happy 2 year old, he has yet to reach many milestones. However, he continues to defy the odds. He still has a lot of doctors appointments and therapy sessions. I had to quit my job to be a full-time caregiver. Hospice is still on board, but it’s truly been the biggest blessing to have the help in caring for him.

On Angels’ Wings took photos in the NICU and again right before we left Missouri to move back home to the East Coast. They’ve been a support system that’s provided not only photos but events that help us realize that we aren’t alone in our journey. Not only is every person affiliated with the company a beautiful human being inside and out, they’ve provided us with memories to last a lifetime. Memories that I will hold close to my heart forever.

I think love has kept him here with us. I truly believe that every single person that loves this child is the reason that he is alive and here with us today. As hard as this journey may be, I truly wouldn’t want to be anywhere else. He has taught me to live in the moment and how to be present. He has taught me to take photos and live life to the fullest. I am just thankful for every single day with this little guy.

I truly take every single day as it comes. I hope and dream that he continues to put smiles on everyone’s face around us. I hope that he stays happy and continues to live life with us to the fullest. I’ve personally watched him change people’s lives and I hope that he continues to do that and people get a new perspective and can learn from him. I hope that the love that he feels every single day remains enough for him to stay.

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