By Hailey Honea
Mommy to Milo
Premature birth, acute liver failure, Acute Necrotizing Encephalopathy
July – October 2020
When we found out we were pregnant with Milo, I felt like all the pieces of our life had finally come together. I dreamed of the days he would run through the yard with his brothers, his first day of school, his first dance, and one day marrying the love of his life.
But our journey with Milo started out rocky.
At 31 weeks pregnant, I went into labor. I was transported two and a half hours away to Barnes Hospital. During the first day, the doctors were able to get my contractions to slow down and eventually stop. But later that night, I woke up in extreme pain. My contractions were just minutes apart. I was rushed into emergency surgery, and our sweet boy was born.
At 31 weeks, Milo weighed a whopping 4 lbs 12 oz. But by day two in the NICU, he had become very sick and lost a significant amount of weight. His lowest point was 3 lbs 5 oz. His left lung had collapsed, and the right lung had trapped air. They inserted a chest tube and had to sedate him for three days. He was extremely touch-and-go at that point and also became jaundiced. On day seven, he was placed under the bili lights, and on day eight, they removed the chest tube.
Just as he started to grow, another hurdle came—his right lung had trapped air again. A larger chest tube was placed and left for two more days. Once we got past these hard hurdles, Milo just needed time to grow. We spent six weeks in the NICU, where he captured hearts and received so much love.
But after we brought him home from the NICU, Milo began to regress. He refused bottles, became easily agitated, and slept much more than usual. I took him to his pediatrician, and during the exam, he coded. He was rushed to a local hospital and then life-flighted to Children’s Hospital in St. Louis.
During the flight, Milo slipped into a coma and was fighting dangerously low blood sugar levels. Once he arrived, he was met by a large team who began testing immediately. They worked tirelessly to find answers.
Milo’s liver was dying, and his kidneys had stopped functioning. He couldn’t regulate his temperature. Though they were able to stabilize his blood sugar, his body continued to fail. During his PICU stay, Milo endured two liver transplants and 24 other trips to the OR. But his body continued to destroy the transplanted organs.
Eventually, we were asked to make a choice.
In our darkest moments, we clung to God and chose to begin end-of-life care. On October 10, 2020, On Angels’ Wings provided us with family photos—with our sweet boy, our other children, and my parents.
On October 11, 2020, Milo entered heaven while being held in his mother and father’s arms.
His diagnosis and death deeply impacted our lives. We were thrust into a world we didn’t recognize, trying to navigate the deep grief of losing a child while still being parents and attempting to move forward. The aftermath of child loss is a winding road and can be treacherous. We have to learn how to live with the trauma, the triggers, and the heartbreak that came with every holiday and every birthday he’s not here for.
But Milo’s life also gave us a deeper relationship with Jesus. We began to appreciate the little things more and love each other more fiercely. I’ve left my grief in the hands of Jesus, and He’s healing me just as He healed my son—by accepting him into heaven.
Our goal now is to live a beautiful life, full of memories with our children and loved ones. After nearly five years, we were blessed with another little boy—our rainbow baby, Huxley. He came into the world early too and spent quite a bit of time in the NICU. He’s scared us with some medical issues, but he’s home now and thriving.
The majority of Milo’s life was spent behind hospital walls during the COVID-19 pandemic. We didn’t have many pictures of him with his siblings. On Angels’ Wings gave us the gift of family photos—something physical for our children to hold onto. Something they could see and remember.
The support from OAW has been a firm hand in our lives. The emotional support I receive has been uplifting and encouraging. It reminds me that I have a tribe all over. When people ask about On Angels’ Wings, I tell them they’ve changed our lives—and I show them the photos to prove it.
