Heart Hero of the Month November 2023
Story by, ❤️ Mom Ashley
My son Noah was born on 2/2/22. We found out at our 20-week anatomy scan that he had CHD. CHD? I didn’t even know what CHD was. Congenital Heart Disease. This was all brand new territory. I’ll never forget the day we found out. It was my 20-week anatomy scan, the ultrasound tech said she was having trouble getting some images because of the way the baby was sitting. I didn’t think anything of it but she told us she was going to send us to a high-risk doctor to get better images because they had better equipment.
Fast forward to that appointment, our life changed in an instant. The doctor said your son has x, y, and z. I don’t even remember the words she said because I was in shock and disbelief. All I heard was that our baby was going to be born with heart disease. At that moment, our world came crashing down. I remember sitting outside on the curb of the parking lot, screaming and crying because I didn’t understand what was happening.
We met my son’s cardiologist who became one of my favorite people. She was so knowledgeable and the most amazing doctor I have ever met. She always went above and beyond for us. She’s just truly a wonderful person who helped make a horrible situation, better.
Noah was born on February 2, 2022. He was such a beautiful boy. He came and they immediately swooped him away from me. Unfortunately, his heart was in worse condition than the doctors had anticipated. We found out that he would require open heart surgery right away. He was hooked up to tubes and wires immediately after birth. 9 days later he had his first open heart surgery. We found out shortly after that he would need to go back into an emergency cath lab because the surgery wasn’t enough. After 6 hours (the scariest 6 hours I’ve ever faced at that point), our baby boy was recovering. He spent 6 long weeks in the hospital, but we finally got to bring him home to meet his sister and the rest of his family.
It was love at first sight. Emma met Noah and immediately loved him. They had such a strong special bond. Noah came home on a feeding tube. Something else that was new and foreign to us. He spent 9 long months on that feeding tube until one day I said enough is enough. I did a lot of research, read a few books, and finally did a tube ween through baby care advice. Once we started the tube ween, my baby, who was dependent upon a tube for 9 whole months, was officially drinking 20oz a day, all by himself. It was so amazing! He just kept proving what a miracle and strong boy he was.
Noah was the strongest boy I knew. When he was 6 months old, Noah went in for his second open heart surgery. He was in the hospital for 11 days during his recovery. He did amazing.
I’ll never forget we snapped a picture of Noah wearing his cape as we were discharged because he truly was “Super Noah”.
Unfortunately, this surgery didn’t do what it was supposed to do so he had to go back into the cath lab a few months later. Noah’s pulmonary arteries weren’t growing so in the cath lab, they wanted to try to balloon the arteries so they could grow. While in there, the wire nicked his artery and the procedure had to be stopped because this caused bleeding in his lungs. A 1-2 hospital stay turned into a week. He was sedated and paralyzed but he fought hard and recovered. That’s what Noah did. He fought and recovered, each time he went through something drastic, he always came out better than before.
We found out that Noah now needed an extremely invasive, extensive open heart surgery called Pulmonary Artery Reconstruction Surgery. However, the surgeons and doctors at Columbia decided to send us to Stanford in California. They were more equipped to do this type of surgery and were the best in the world for this type of surgery. We knew we didn’t have an option and had to go to California for this life-saving surgery. It took a few months for Stanford to review all of Noah’s files. They finally called us in January to schedule Noah for surgery. We finally got a date in May, but Noah ended up getting COVID-19 and we were bumped yet again, one month later.
We finally were set to go to California. We even somehow lucked out and an amazing company called AeroAngel gave Noah a gift of a lifetime. We got to fly a private jet to California. Noah was in all his glory. It was truly one of the best experiences and Noah was happy. Once we got to California, we went to our preop, everything went well and we were on our way. Noah finally got his cath and CT scan. Those tests went so well. He stayed in the hospital for one night recovering from the cath and we were on our way. Finally, after weeks of going back and forth, and waiting, we got the phone call that Noah would have his surgery.
On July 13th. Noah went in, smiling, as he always did. The anesthesiologists knocked him out and he slowly drifted into a daze and they took my sweet boy away. Little did I know, that was the last moment I’d see my son awake, smiling. Noah’s surgery was a success. Over 15 hours later, we were finally able to see my beautiful boy. He was hooked up to a lot of machines, more so than we’d ever seen him hooked up to but we knew how extensive this surgery was going to be so we sort of expected it. He was sedated and paralyzed so that his body could heal and recover. The next two days were great. Noah was doing better than the doctors anticipated. We even spoke to the surgeon and found out he could maybe even do the second part of the surgery, during this hospital stay. That was great news. He also said he’d probably close Noah’s chest the following day. That’s when all hell broke loose and things took a turn.
This part of the story is kind of a blur…
Noah’s numbers started going all over the place. The doctors were unsure what was happening but thought maybe his shunt needed to be titrated. They did that, as well as a chest clean out but that didn’t work. The next day his white blood count was very low and we were asked to leave again so they could do another chest cleanout.
We left and a few hours later, they told us our son was going to die.
When they tell someone that their loved one is dying in a movie or TV show, well this was portrayed pretty accurately. I screamed. I cried. I yelled. I sat on the floor. I sobbed. I hyperventilated. I couldn’t believe what was happening. My son, who was doing well just the day before, was dying. How could this be? This was tragic, sad and heartbreaking. My beautiful, smiley, happy, baby boy was gone. Seventeen months of struggle, strength, and resilience, gone.
We went to California for them to save my son’s life, instead, he died there.
I have so many questions I will never have answers to. Noah deserved more. He was the most special boy. He fought so hard, in his short little life, always with a smile.
He taught me so much. He taught me how to be strong and brave. I am the person I am today because of him.
Noah was the most amazing baby boy. He was so strong and resilient and lit up a room with his big bright eyes and beautiful shining smile. Noah was the bravest warrior who endured so much in his short life. With every single obstacle he faced, he came out stronger and even happier than before. From open heart surgeries, breathing tubes, medications, feeding tubes, machines, hospitalization, and sickness, no matter the challenge, Noah always fought his hardest, despite the odds. Noah’s journey was followed by so many silent followers, who quietly read each chapter in his journey.
I believe Noah’s life and his challenges helped to teach us about the strength of the human spirit and resilience. Strangers followed Noah’s Journey and were crushed to hear of his passing. He impacted those he knew and those he didn’t. In his death, Noah has reminded us to slow down, stay mindful, enjoy every day, take nothing for granted, be kinder, be more patient, invest in relationships, and laugh more. Noah changed me. Noah taught me how to be brave and strong, even through the most terrifying times of our lives. I believe he was put on this Earth to make people around him smile, be happy and teach us all how precious life really is. Although his time with us was too short, his legacy will live on forever. As his big sister Emma said, “Mommy, Noah is so proud of you”. I hope we continue to make you proud and advocate for babies like you. We’ll love you, always and forever.