Krisi had an inkling it was twins. When her doctor confirmed that she was indeed having twins at 10 weeks, “it was one of the most shocking yet beautiful pieces of news,” she says. “We were able to prepare for what life would be like after their arrival.”
But even the most prepared couple could not prepare for the news that came next: An ultrasound showed that Baby B’s heart was not fully formed, a result of a congenital heart defect known as hypoplastic left heart syndrome (HLHS). This meant that she would essentially be born with half a heart and begin a trilogy of open-heart surgeries within the first few days of her life: the Norwood, Glenn, and Fontan procedures.
As Krisi and her partner Mike sought out information about HLHS in every way possible, “we decided then and there that we will not allow HLHS to define our daughter, her brother or our family as a whole,” she says. They interviewed hospitals, ran testimonies from parents, researched statistics and treatments, and watched videos online of the three surgeries Stella would need to survive. It was the expertise of Lurie Children’s cardiologists and heart surgeons that led them to choose the hospital for their daughter’s operations.
“After meeting with the whole team and discussing the care, quality of life, and all three HLHS surgeries with the Cardiac and Single Ventricle Team, we felt as though our daughter had the best chance at life when treated at Lurie Children’s,” Krisi says.
On July 31, 2019, twins Stella and Max were born at exactly 38 weeks. Stella had her first open heart surgery at five days old, the Norwood procedure, which builds a new aorta and makes the right ventricle pump blood into the new aorta and to the lungs through a new path to the pulmonary artery.
The Heart Center at Lurie Children’s, ranked 2nd in the nation for child cardiology and heart surgery by U.S.News & World Report, brings the spectrum of cardiac specialists together to care for patients with the most complex and serious heart conditions throughout their lifespans — from before birth, through childhood and into adulthood.
After surgery, Stella recovered in the hospital for several weeks, a period that served as a crash course in learning to care for their daughter’s medical needs. “We battled with PO feeds, infections, heart lines, NG tubes, IVs, chest tubes, middle-of-the-night consent phone calls, and sleepless nights,” Krisi says.
Simultaneously, Lurie Children’s Cardiac Care Unit became home for the new family of four. Every day, Krisi and Mike brought Max to the hospital so he could be with his twin sister and sleep next to her hospital bed in his own bassinet. “The nurses, CAs, doctors, surgeons and staff knew us by name. We met other heart families and formed bonds. We hugged and smiled on hard and not-so-hard days. We became a staple to the hospital’s cafeteria cooks. The nurses became a part of our family. There was so much love on that floor and it extended into our interstage period at home.”
The interstage period between Stella’s procedures has been challenging, but with the help of Stella’s team and home monitoring it has been less stressful. As a way to help manage Stella’s care at home, the family participates in the Heart Center’s Interstage Home Monitoring Program (IHM). The home monitoring program allows Stella to be at home with her family while staying in constant contact with her team from Lurie Children’s Single Ventricle Center of Excellence. IHM focuses on home monitoring of oxygen saturation levels, caloric intake, and weight gain in addition to early recognition of “Red Flag” symptoms. Research shows that close follow-up and daily monitoring of a baby’s saturations, weights, and nutritional intake has decreased mortality.
The unique program at Lurie Children’s has taken this monitoring one step further in collaboration with our Telehealth Programs to include weekly scheduled video visits with the patient and family in their home, along with daily remote patient monitoring. “Our advanced practice nurse Michelle Steltzer, CPNP-AC/PC, and Amanda Synder, Nurse Coordinator, are available day and night. The telehealth calls are personal and positive, and the program overall has given us an extra confident grip on managing Stella’s health during a very sensitive period,” Krisi says.
This February, Stella underwent the Glenn procedure, which makes it possible for blood from the upper body to go to the lungs.
“We thank the stars above for Lurie Children’s Heart Center surgeons, doctors, nurses and staff who care for Stella and who are a part of our family. Everyone always greets us with open hearts,” Krisi says.
For Krisi and Mike, life with twins has turned out to be everything they prepared for—and then some. “Max and Stella are the happiest babies that we have ever known. Their laughs and giggles are contagious. The birth of Max and Stella has been the most beautifully difficult experience in our lives and we would not trade it for the world.”