Bentz, Kaylee Lynn

Denver's Children's Hospital gave me a copy of the Cherubs Spring '95 newsletter. We would like to belong and tell you our baby's story. When my husband and I found out I was pregnant we were excited. We had a two year old son and hoped for a girl. I went through my whole pregnancy being sick almost constantly. But my doctor was not alarmed because the prenatal visits were normal. My insurance company would only cover ultrasounds when medically necessary, I never had one because my baby's heartbeat was normal. Finally the day arrives, three days after my due date, I go into labor and twelve hours later I gave birth to a beautiful baby girl. My doctor wipes her down and her little eyes open, look at me and she gives out a small cry. My heart leaps, we got our girl! The umbilical cord is cut and all of a sudden my doctor takes her over to the baby bed next to the wall that contains medical supplies. I look over to my husband and say that something is wrong with our baby. He reassures me and says that they're probably doing some of her reflex tests. Unsure if that was the case, I repeated myself to him three times. He shrugged his shoulders and we both focused on the commotion by our baby. All of a sudden I heard my doctor yell "Come on baby, BREATHE!" My whole world ended I thought I was dreaming. I started crying and tried pinching myself thinking I would wake up from this horrible dream. Intensive Care nurses rush in, take our baby and rush out. I can't remember much of the next two hours except for thinking how could this happen to us, we have a healthy son at home. Two hours later, a neonatologist and a pediatric surgeon walk into my birthing suite and sit next to my bed. They say that our baby has a severe left-sided diaphragmatic hernia. This is very serious and her chances of surviving are very slim. I went into shock. The doctors said there was nothing I did to cause this, but I laid there blaming myself. Doctors would come in and let us know how she was doing and were talking about transferring her to another hospital. Now Kaylee is seven hours old and being prepared to be flown to a more advanced hospital 675 miles away. They let us visit her before she leaves. Her small body laid there covered with tubes, wires, and her body shaking from the ventilator. This could not be the same baby I saw when I gave birth, this one was limp and did not make a sound. We baptized her in the Intensive Care Nursery, despite all my thoughts about why I was being punished. As Kaylee was being transferred, one of the doctors called us on the phone in my hospital room and explained a new gas they're trying on babies with small lungs. Because it is not FDA approved, I had to give permission to the doctors to give my daughter nitric oxide. Twenty-four hours after birth, Kaylee had surgery to correct her diaphragm. Kaylee stayed in their hospital for 24 days and was transferred back to our hometown hospital. She was taken off nitric oxide at 21-days-old, amazingly off of oxygen at 37-days-old, and came home at 69-days-old. Our worries for the next few months was to get Kaylee to eat and gain weight. Kaylee is now fifteen-months-old. She fought off five colds without any help from over the counter cold medicines, had a sinus infection, and now weighs over 17lbs. Eats table food and drinks 2% milk by mouth. She has no tubes and no monitors. We never had to admit Kaylee back into the hospital yet and sometimes find it hard to believe she was born with a defect. We had never heard of a diaphragmatic hernia until Kaylee was born. When we hear about it now, most of the stories are the same and are not as fortunate as ours. We hope our story can give some parents the hope that we have found through our misfortune. We now know God is by our side.



Written by Kaylee's mom, Melissa Bentz (South Dakota)
1995