***Trigger Warning***
We had just experienced a miscarriage two months before finding out we were pregnant with Tristan. We were nervous, excited and happy. My husband and I immediately started talking about what a great big brother our 2 year old son Ryan would be. We imagined our young children riding bikes, swimming, and playing together. We were even more excited to find out we were having a boy!
At one of our routine ultrasounds, I immediately noticed that the radiology tech hovered over the image of the baby’s foot for longer than usual. I instantly felt anxious because I noticed that something looked abnormal. Neither of us said anything.
When we returned for our consultation with our Obstetrician, he explained that the image showed possible club foot, an extra toe, and a slight curve in the spine. The doctor’s face, demeanor, and words immediately put me into a state of confusion, shock, and brought on a wave of heartache. I was also notified that I had gestational diabetes, which was likely what caused the defects.
Words from our doctor, “Don’t Google this”. Me as soon as I left his office…Google search, gestational diabetes + club foot + curved spine + extra toe. My head spun at what I read.
My husband and I stood by the elevator, stared at each other, helpless, with eyes full of terror and pain.
Fast forward to endless appointments with various specialists who gave us both hopeful news along with a lot of “It’s hard to really tell”, “I have multiple concerns”, “We will have to wait and see”, and “This baby is going to need a lot of help when he is born.”
At one point, my husband and I made the decision to not tell anyone about what was happening. We chose to be optimistic and knew we would love Tristan and give him the best possible life. I was diligent in managing my diet, medication, and doctor’s appointments to have the best possible outcome. We had two baby showers and celebrated with our amazing family and friends. Our house was filled with baby clothes, toys, and all of the essentials. We were ready.
February 12, 2020, was a beautiful, snowy, and peaceful day. We dropped Ryan off with my sister, and headed to the hospital. That afternoon, our beautiful son, Tristan was born. He was absolutely amazing. Handsome, feisty, and stable.
The next few hours, days, and weeks were a blur. It was as if everything happened in slow motion. Tristan’s health started to decline and he was having trouble breathing. The day after Tristan was born, my husband and I asked for an update from the attending physician. She was busy and frazzled but stopped to give us the information we had been waiting for. As we all stood in the middle of a bustling NICU, under bright fluorescent lights and constant beeping of the machines, she began going down a long list of health issues doctors had confirmed and an even longer list of things they suspected. As she spoke, the information became so overwhelming that I went into a state of shock and panic. I had to walk away. It turned out that most of what they suspected was incorrect and tests came back normal. It was a relief and we were hopeful again.
One evening about three days later I was home bathing Ryan and a doctor called. We had to make an immediate decision to transfer Tristan to Methodist Children’s Hospital in San Antonio. It was his heart. It was an emergency. Nothing felt real and I couldn’t understand how I was even functioning. At 3 a.m., Tristan and I got on a med plane and were in San Antonio one hour later. The most amazing med crew began helping him. A few days later, my husband and Ryan joined us. Managing the stress, round the clock hospital time, and our confused two year old felt impossible. The most unimaginable love and support from family, healthcare staff, and friends helped us through. We stayed at a Ronald McDonald House about a mile away and took turns going to the hospital.
The morning of March 4th was filled with magic. Tristan was doing well and his vitals were great. He was alert and happy. He held my finger as we looked into each other’s eyes. I was hopeful and grateful. At 5 pm that day, the medical staff extubated him but he didn’t respond well. His organs began to shut down and he had to be intubated again.
That day Ryan got to see his baby brother for the first time. The look of pure joy, love, and excitement when he saw Tristan still haunts me. Tristan passed away two days later on March 6, 2020.
Our family and friends, now all in San Antonio with us, were heartbroken. We also had to make the difficult call to Tristan’s half-siblings and give them the news. They were devastated because they had not had the opportunity to meet him.
The gifts that Tristan left us with are beyond measure. I had peace and comfort when I needed it most. He brought friends and family to us from near and far. The doctors and nurses who cared for him were phenomenal, caring, and very special to us.
For Tristan and all other babies, I will continue to bring awareness to mothers at risk for gestational diabetes.
A heartfelt “thank you” goes out to our families, friends, and the many people who have helped us in one way or another, including DISH and EPN. We are forever grateful.
