Mackenzie Irene Maroney became the most precious birthday gift a mother could ask for. Mackenzie and I will always celebrate our birthdays together with joy and triumph, as we remember how hard she fought for her life for so many years.
Mackenzie was born 14 weeks early on April 21, 1993 weighing 1 pound, 12 ounces (790 grams). Her two big brothers had been born at term without any major problems, so my husband and I were very surprised by her early birth. Although the doctors prescribed medication and bedrest to stop my early labor, infection and an abruption of the placenta won. Before delivery, I received steroids to help improve Mackenzie’s lung development and Phenobarbitol to protect her brain from an intraventricular bleed which often causes significant long-term problems for premature infants. Mackenzie spent almost four months in the Neonatal Intensive Care Unit (NICU) at Presbyterian/St. Lukes Hospital in Denver, Colorado. I remember the first time I saw her; her tiny, scrawny body looked like a baby bird’s. But her dark, curly hair with a carefully placed pink bow made her human, and the most beautiful baby I had ever seen. During her 108 days in the NICU, she lived through lung disease, heart problems, infection in her blood, poor growth, eye injury, blood transfusions and a serious aspiration of formula into her lungs. One sentence can’t begin to sum up the many months of mine and my family’s heartache, nor the intense suffering experienced by one exceptionally strong little girl.
Mackenzie’s struggles did not end once she came home from the hospital. As a NICU nurse I thought I could handle any medical needs Mackenzie might have, but I quickly learned otherwise as we were swept into a whirlwind of specialists, therapists, and medical supply companies. We were overwhelmed by caring for a child on oxygen, using various machines to measure her heart rate, oxygen levels, and her ability to breath properly, and the constant need to watch her for illness. When she stopped eating only days after coming home, we began feeding her through a tube placed in her nose. Four weeks later, doctors performed surgery to repair her gastroesophageal reflux (GER), a problem where her esophagus and stomach were not working properly. A button (a tube on the outside of her abdomen connecting to the stomach) was placed during surgery for supplemental feedings. Mackenzie had learned early in life that it hurt to put things in or near her mouth. She had experienced so much pain from the all the tubes placed in her mouth in the NICU, and the pain of her GER that she refused to eat, developing what is called an oral aversion. The one peace we had from these months of stress was the beautiful smile Mackenzie gave us only days after her surgery, when her pain had finally stopped.
At eight months old Mackenzie came down with Influenza and RSV simultaneously and was hospitalized for five days. Thankfully, she received Respigam (an experimental drug at the time, used to prevent or lessen the symptoms of RSV) which saved her life. After her hospitalization, her oral aversion worsened, and she refused to eat anything. As therapists worked to teach her that it feels good to put something in her mouth, the nighttime feedings (given continuously via a pump through her button) lasted for two and one-half years and daytime tube feedings for over three years. Our days were filled with special feedings, therapist visits, doctor’s appointments, medications, and endless phone calls handling insurance claims. At eleven months of age, after her Respigam treatments were completed (per the study protocol), Mackenzie came down with a serious pneumonia that required a ten-day hospitalization and six weeks of home nursing. Three months later (at my insistence) the doctors started her on monthly immunoglobulin infusions (IVIG). IVIG is a drug that helped boost her immune system so she could fight off infections, keeping her lungs healthy so they could grow healthy lung tissue. Each month I had to hold her as an IV was started and until her infusions were finished which lasted about an hour. These were extremely difficult days and continued every month for four years.
Mackenzie required supplemental oxygen for three and one-half years. Being attached to a 50-foot oxygen cord became hard for Mackenzie once she began to roll, crawl, and walk. The cord would come to a sudden stop as it wound around furniture as she tried to keep up with her big brothers! Mackenzie developed with significant delays in her fine and gross motor skills, her speech, and her ability to absorb sounds, touch, and smells in everyday life (sensory integration problems). She saw therapists for each of these problems for approximately three years. Over the next five years Mackenzie underwent two more surgeries: One at age two to remove adhesions that had developed between her stomach and liver, and another at age five to repair an umbilical hernia, remove her button, and revise her scar on her abdomen. At age six, Mackenzie is small for her age (just now making the growth charts in height and weight). She rarely ventures from what she considers safe to eat which generally includes chips, pickles, some fruit, carrots, chocolate milk, and certain meats. Pushing her to eat has never worked because she doesn’t understand hunger like the average person. She simple doesn’t eat unless she is sure it is safe and will taste good to her. We work hard at getting in as many calories as possible which includes the luxury of Hagan Daas ice cream every night! Because she is so tiny her muscles tend to be weak, but her love of gymnastics and soccer will eventually help improve her strength and coordination. Mackenzie proudly graduated Kindergarten this year. Her teacher boosts of her ability to understand and follow what is taught. We watch her closely for learning problems because she is sometimes takes longer to catch on to some skills in reading and math. However, we have confidence she will finish college someday, or maybe even become an artist or actress as she’s already showing talent and a love of the arts.
Mackenzie’s affectionate nature and love of life charms everyone she meets. Her two big brothers, Frankie and Michael, painstakingly watch over her safety, but they do not hesitate to play rough and tease her, keeping her tough. She is the love of our lives and will forever be an inspiration for her courage through the many battles she has fought and won.