“My pregnancy was completely normal. I had just had my 30 week ultrasound, where my doctor welcomed me to the third trimester and told me that I was doing great,” Kassie reflected.
“Shortly after that, I unexpectedly started spotting”, Kassie said, “Ty and I went to the hospital (SSM Health St. Joseph’s West) and the team told us they were going to get a room ready for us. To say we were shocked is an understatement as we both thought we would be checked quickly, laughed at for being nervous- first time parents, and sent home. Instead I was now being wheeled up to a room, hooked up to IV’s and monitors, and being told I would be here until birth. I distinctly remember a doctor saying that Easton’s best chance was for me to make it to 32 weeks,” said Kassie.
“At that point, I had a talk with my unborn son and sternly told him that he would stay in until 32 weeks,” Kassie laughed. “ I was on bedrest, being monitored and that was my only focus. Keep him in for 32 weeks,” said Kassie. “We didn’t know anything about the early delivery process or life in the neonatal intensive care unit at that point. We didn’t want to know,” stated Kassie. “No parent does.”
Kassie made it exactly to 32 weeks. Her labor began at midnight, October 10, 2019. Easton was born at 4:06am, weighing 4lbs. 4 oz. “I had a natural birth and everything went smoothly. Ty and I had been warned that things might move quickly – that we might not be able to hold our baby, that he might have respiratory issues or any number of problems,” Kassie said. “He came out screaming,” said Ty. “It was such a relief to hear him cry. It wasn’t long, though, before they took him away to the neonatal intensive care unit (NICU). That’s when it got real that this wasn’t our plan – that we were going to be sent home without our son,” Ty said.
“Our room was right outside of the NICU. Every 3 hours, I pumped and Easton was eating. He was taking a bottle, nursing, had no respiratory support and was doing so well,” remarks Kassie. “It was really a week of bliss,” said Kassie. “Little did we know it was the calm before the storm.”
One week following his birth, Easton’s oxygen saturations suddenly lowered during one of his feedings. Soon after, Kassie and Ty were told Easton would need to be transferred to SSM Health Cardinal Glennon Children’s Hospital. “We didn’t know why or what that meant. To us he looked completely fine,” Kassie said. “The nurses wanted me to have some skin-to-skin time with him, and I remember the look on their faces as they told me that this may be the last time I held my baby. There was a lot of jargon being thrown around – terms we had never heard of before. We had no idea how serious it was – how truly, truly sick he was.”
Easton was transferred via ambulance with the neonatal transport team to SSM Health Cardinal Glennon Children’s Hospital on October 17. The initial diagnosis: necrotizing enterocolitis, otherwise known as NEC. In premature infants, NEC is a common gastrointestinal illness, affecting about 1 in 1,000 premature babies. NEC typically occurs around two to six weeks after birth, depending on the type and cause. Symptoms may come on over a few days or appear suddenly in babies who otherwise seem to be doing well.
“It was upsetting to see Easton have this setback when he seemed to be doing well. We had just been told that morning to make sure the car seat was ready, and now we were on hourly monitoring and being told he may not make it through the night,” Kassie said. “They were doing x-rays, checking his stomach a lot and he wasn’t allowed to eat. Within 48 hours, he had a blood infection and they also found a brain bleed. We felt like the room was shrinking around us, and we had no idea what was unfolding. We had faith that he was going to get better. We just didn’t know what the journey was going to be like getting there,” Kassie said. “We were craving hope, resources and stories. It was like being dropped off in a foreign country. We didn’t know the language, the geography or when or IF we would be starting the life we envisioned as a family,” said Ty.
After getting the full picture of what Easton was facing, all Kassie and Tyler could do was wait- wait for him to heal, wait for what was to come, wait for the consequences of his diagnosis. Easton spent 47 days at Cardinal Glennon. “Those 47 days were filled with our family’s hardest moments and most joyous moments as a new family.” Kassie said.
A surprise to everyone involved, Easton’s NEC resolved completely without lifelong complications. After 21 days he was able to start feeding again. Easton continued to get daily head ultrasounds to assess his brain bleed. Although the bleed was revolving, it was considered a Grade 3 hemorrhage.
“I remember when Dr. Shakir Mohamed came to tell us the news, Easton had hydrocephalus as a result of his brain bleed. He explained the lifelong complications Easton may have because of this: brain surgery, mental and physical disabilities, or possible death. At that point I crumbled. I was so angry at the universe and questioned why my sweet boy had to face such hardships. This moment was also a turning point. I will never forget when Dr. Mohamed looked me in the eye and told me that I was Easton’s best advocate. He reminded me that I knew Easton better than any nurse or doctor that cared for him. He told me that if Easton was fighting, that I needed to fight with him and that I couldn’t give up if HE wasn’t giving up,” said Kassie.
Miraculously, Easton’s head growth stabilized. He avoided brain surgery; began to take full feeds and they were discharged two days before Thanksgiving! “Being discharged is the most unsettling event. On one hand you are ecstatic and relieved; it’s the happiest day of your life. On the other hand, you are terrified, stressed, and scared beyond belief,” shared Ty. Once home, the family’s post-NICU days included round clock snuggles, feeding, recovery and weekly early-intervention physical therapy services through First Steps. “It was surreal to be home. Our lives had been in complete chaos for 50 days, and then we were home just as we had always envisioned,” reflected Kassie. We continued with monthly neurosurgery check-ups at Cardinal Glennon to make sure Easton’s head growth was still stable. At 5 months old, March 2020, Easton’s neurosurgery check-up did not go as planned. MRI images of Easton’s brain revealed growth in the size off his ventricles. “Anne, our neurosurgery nurse practitioner, told us that it was time for Easton to have surgery,” Kassie said. For Kassie and Ty, the walls began to close in, once again. The surgery Easton needed was brain surgery to place a ventriculoperitoneal (VP) shunt – a device permanently implanted inside the head and body to drain excess fluid away from the brain. Easton’s surgery took place the day St. Louis shut down due to COVID. Only one parent was allowed at the hospital. Fortunately, Easton’s surgery went smoothly and he was able to go home the same day. “Even though things went smoothly, my anxiety was at an all-time high. I was processing that my baby just had brain surgery, a pandemic was starting and we were being sent home to monitor him. We were still adjusting to being new parents. What would this hydrocephalus look like for him as a life-long condition?” Kassie wondered.
Since that time, Easton has surpassed all milestones and it would be difficult to assume he had any kind of medical history. Kassie and Ty speak passionately about the staff that made such an impact on their journey. “Nurse Tracey was the strength Easton needed when we couldn’t be. When our world was crumbling, she didn’t let us give up. She taught us and encouraged us to be advocates for Easton by participating in conversations and Easton’s care. Talking about Nurse Rita still makes me tear up,” states Kassie, “She is the epitome of family-centered care. I will never forget one week into our stay; she came into the room and told Ty and I we needed to take a walk. I hesitated, and she said she would hold Easton every second until we got back. She knew my fear of leaving Easton. I know there were hundreds of things she needed to be doing, but she sat with Easton for 30 minutes while we took a walk. Nurse Beth was the nurse who made me feel like a great mom. She helped us learn how to take care of Easton and gave us the confidence to take part in his care. Nurse Brittany was Easton’s primary night nurse. We live about 45 minutes away from Cardinal Glennon, so leaving for the night was a nightmare. Brittany truly loved Easton and took care of him as if he was her own: bathing, dressing in cute jammies, extra nighttime snuggles, you name it! Brittany knew I checked on Easton during my overnight pumping sessions. On the NicView camera- she would leave me little notes in his bassinet on how the night was going. These notes kept me going,” Kassie said. “And then there’s Dr. Fleming,” Ty added. “Dr. Fleming truly saved Easton’s life. Dr. Fleming stayed one night much after his shift and just listened to us. He went through every piece of information in Easton’s chart. He taught us, collaborated with us, and made a plan for Easton’s care. He was the first doctor to sit down and just listen and talk,” shared Ty. Kassie and Ty spoke highly of the Ronald McDonald Family Room. “It was the perfect place to take a break, heat up home cooked meals, and just take a minute to think/breath/relax. “I also loved that Glennon provided a lactation consultant,” said Kassie. “I was very passionate about breastfeeding and pumping. The lactation consultants worked with me to keep my milk supply up and helped with breastfeeding when the time came.”
Easton just celebrated his third birthday. He is a lover of all holidays and really any sort of social gathering. He loves gymnastics and plays on a tiny-tot soccer team. “Easton is the most extroverted, social person I have ever met. He just has something about him that draws you in. Even in the NICU, we would walk into his room in the morning, and it would be full of staff members just smiling and engaging with him. He is the kid on the playground that brings everyone together to play and have a good time,” said Kassie. “Cardinal Glennon was our family’s first home. They are the reason we even have an Easton to celebrate. Glennon is filled with staff that are truly passionate about their patients and families. Our story would look much different without the exceptional care we received and continue to receive at Cardinal Glennon.”