An Unexpected Journey on the NICU Rollercoaster

The personal story of a tiny baby born to a NICU nurse.

By Dianne I. Maroney

During my 11 years as a nurse in the newborn intensive care unit (NICU), I witnessed my share of tragedy, joy, and suffering. I worked in state hospitals, private hospitals, and teaching hospitals. My patients ranged from wealthy to poor. These experiences provided me with an objective view of what families endure when a baby is premature. Then my own worst nightmare happened; I delivered a 26 week and 1 day, 790 gm baby girl.

Suddenly I felt the anguish I had only seen in others, and I began to understand the depth of pain and the length of struggle parents live through. It was difficult to comprehend the overwhelming nature of this crisis until I lived it. By sharing my journey, my joy, and my pain I hope to give other nurses better insight in helping parents survive their emotional "roller coaster ride" in the NICU.

I began having contractions and bleeding in my twenty-third week. I was an hour and a half from home, it was midnight, and my regular obstetrician-gynecologist was out of town for a month. I went to the emergency department in the small town where I was vacationing; they stabilized my contractions and wanted to send me home. Uncomfortable with the obstetrician-gynecologist on-call, I insisted they call a well-known perinatologist in Denver. To my immense relief he assumed my care, placing me on bed rest and oral terbutaline. I was reasonably stable at home for 6 days. My diagnosis was chronic abruptio placentae with questionable premature rupture of membranes.

At almost 24 weeks I began bleeding, my contractions worsened, and I had to be hospitalized. My physician administered steroids and thyrotropin-releasing hormone, hoping I would make it to 28 weeks. By ultrasonography the baby was 25 weeks, 2 days. This was hard for me to believe, because I had been taking my temperature to increase the odds of pregnancy and thought my dates were accurate.

My husband and I then had to face the heart-breaking choice of whether my dates were correct and whether we would consider not resuscitating our baby. After many years of watching these tiny babies suffer, I always told myself I would not resuscitate my own 24 or 25 week baby. (Believe me, objectivity changes when it's your baby.) We chose not to resuscitate at 24 weeks and no heroic measures at 25 weeks.

By now there were six neonatologists involved, and we had to discuss our decision with each of them (each was on call on a different night). Some agreed, but others had difficulty relinquishing their control. Speaking with them was painful and emotionally draining. The choice was difficult enough, but having to justify our decision to each doctor, and in essence override their control, was overwhelming.

A miracle happened. Mackenzie was born the day she turned 26 weeks, and control was no longer an issue. Full resuscitation was in order, and we prayed the need would never arise again.

Mackenzie made exceptional progress for her prematurity and size. She had minimal lung disease and was placed on nasal continuous positive airway pressure for the first three weeks of life. Then sepsis resulted in intubation for two weeks. Her condition improved and she graduated to nasal continuous positive airway pressure for one week, then to a hood, and eventually to a nasal cannula. Indomethacin successfully treated a patent ductus arteriosus at 10 day of age. She had a significant weight loss in the first six days of life, dropping from 790 grams to 600 grams. Her weight gain remained poor throughout her hospitalization. My biggest fear was necrotizing enterocolitis (NEC). The physicians were very conservative with her feedings and there were no NEC scares. At 34 weeks, when Mackenzie was ready to come off continuous feedings, she was found with her nasogastric tube partially out; she had aspirated. This caused a significant insult to her lungs, and her lung disease progressed to moderate bronchopulmonary dysplasia. Because of her tachypnea and high oxygen requirement, she had difficulty nippling, which improved after a five day course of steroids. At 34 weeks, grade I and II retinopathy of prematurity developed. She was discharged at 41 weeks on 0.25 L of oxygen, showing a good weight gain.

At 6 months Mackenzie weighs 10 pounds 8 ounces. Five weeks after coming home she had a Nissen fundoplication with a button placement. She nipples approximately one third of her feedings and is fed the rest through her gastric tube. She is on 0.25 L of oxygen and continues to progress with her occupational therapy. She smiles and is beautiful. I am so grateful she was born in 1993 and was able to receive the best care possible.

Dianne I. Maroney is a nurse and the author of Your Premature Baby and Child.