Alex – A Fighter Then… and Now

Alex was born 17 weeks early; I was only 23 weeks and three days into my pregnancy when he was born. My due date was December 23rd, and I was looking forward to a Christmas baby, but Alex had other plans. He decided he wanted to be a summer baby.

That August, I found out my amniotic bag had a slow leak. My doctor told me that babies born this early don’t make it; I would have my baby, he would pass away, and someday I would have more children. As a first-time mom, that was not something I could process. The nurse who was tending to me told me about a wonderful hospital in Milwaukee that specialized in early pregnancies and micro preemies. She said she would do the transfer without the doctor’s knowledge, if I wanted.

My baby and I were headed to St. Joseph’s Hospital!

Upon arriving, I was told I would remain there on full bed rest until Alex was born, which could have been the rest of the pregnancy. I was given steroid shots to help strengthen his lungs before he was born. One night, on my steroid night there, at 1:40 a.m., I called the nurse… something didn’t feel right. My baby was determined to be born, and I was swept away to labor and delivery. At 1:42 a.m. on August 28th, Alex arrived – all 1lb 4 oz, 12 inches of him. Instantly, I fell in love with my amazing son. I looked up to see the doctor passing Alex to the NICU nurses, and off they went with him.

Before Alex was born, the medical staff tried to prepare me with all the worst-case scenarios that could happen with a baby born so early. Within a few days of tests and scans, my darkest fears had been confirmed – Alex had grade 4 bleeds on both sides of his brain, the worst he could have. It also meant he could land anywhere on the scale of being fine to having no quality of life. The doctors asked me to make a decision – either take him off the machines and let him pass away or keep him on the machines, knowing there was a grim outcome for him.

Everyone told me not to be selfish; to keep him alive meant he would have no quality of life. I prayed, and I prayed. There was something inside of me that kept saying, “No, he’s a fighter. Let him fight.” And fight he did.

Choosing this path meant a long road ahead to get him home. The day I gave the doctor my decision, he said, “If it was my son, I would take him off support.” I knew in my heart that it was not an option for me. The bleeding had stopped, and the brain was starting to reabsorb the blood, but we wouldn’t know the damage it had caused until Alex got older.

At two weeks old, Alex had to have Patent Ductus Arteriosus surgery to close a valve in the heart that normally closes when a baby is born at 40 weeks. The surgeon made an incision in Alex’s side, under his arm pit, and put a clamp on the valve. To everyone’s surprise but mine, Alex made it through the procedure. I knew he would.

I wasn’t allowed to hold Alex. His skin was so fragile that if I were to caress his arm, I could rub the skin off of him. The nurses kept him heavily covered in cream. He also needed the heat from his Isolette, an incubator used to control the baby’s environment. When I got a call from the nurse saying, “Alex has pneumonia! The doctor wants you to be able to hold your baby before he passes away. We don’t think he’s going to make it through the night,” I got to the hospital as fast as possible. The nursing staff took him out of the Isolette, still hooked to what seemed like a thousand tubes and wires, and laid my sweet, tiny baby in my arms. I was never as joyful as I was at that moment.

Alex and I had a little talk during his time in my arms. I promised to be the best mom and always love, care, and fight for him. But I needed him to fight then and now.

Alex made it through the night.

There were so many more concerns and fears as the days went by – plasma transfusions, Alex’s poor little feet were all bruised from the staff taking blood three times a day, and he also got pneumonia again, but he overcame every challenge.

Our medical team started letting me kangaroo him – laying skin on skin – to help with the bonding process between mother and baby. The first time I did it, I had no idea it would affect me the way it did. I lay in the chair, and the nurse put Alex on my chest, covering us in a blanket. We laid together for eight hours straight, and I cried the whole time, realizing that it was not only what Alex needed but me as well. Alex and I had our talk again about fighting for his life and that I would always be there to fight alongside him. I was so in love with him, and I knew in my heart I made the right choice… not that I ever questioned it.

Eventually, Alex was diagnosed with retinopathy of prematurity. This eye condition affects preterm babies, so Alex had laser surgery at three months old and only three pounds, and again, he did perfectly.

Alex eventually progressed to needing oxygen only, and very shortly after that, he found his way to the pediatric floor. Then, on December 12th, at four months old and weighing a hair under 5 pounds, I brought my tiny baby home.

Alex was diagnosed with spastic cerebral palsy right before his second birthday. He had reconstructive bone surgery on both lower legs when he was three. At that time, his life consisted of endless doctors, specialists, and therapy appointments, but he was a fighter and didn’t give up.

I never told Alex he couldn’t do something because of his disabilities. He has always tried his hardest and gave everything in life his all. I’m so proud to be his mom! I know life hasn’t been easy for him, but he doesn’t let it stop him from achieving his goals.

by Scott Ellis, Admissions Counselor

Alex is now a 3rd-year Culinary Arts student at Shepherds College®. He interns at Oakfire Pizzeria in Kenosha, learning to measure ingredients and make dough. One of the perks at Oakfire is trying the different pizzas. Currently, Alex is tasting his way through the menu to find his favorite.

In his free time, Alex enjoys working out and focusing on nutrition. In this past year, Alex has gained knowledge and skills in each area by going to Strength Evolution, an innovative provider of research-based exercise and wellness services in the Milwaukee area, to learn from the owner about the business’s approach to fitness. He has also participated in Spartan Race’s functional fitness workout event, DEKA. Alex first ran a simulation of the event and then, in September 2023, competed in a full competition. Check out the video titled Alex: Realizing and Maximizing His Fitness Potential on YouTube to see him in action.