Our rollercoaster ride

Nina was born at 24 weeks, 16 weeks before her due date. Nina was born early due to premature rupture of membranes, without any medical explanation. She was delivered immediately due to the fact that both she and her mother, Deanne, had developed an infection.

Her birth weight was 1 pound, 10 ounces, which classified her as a micro preemie. Like all babies, her weight dropped, and her lowest weight was 1 pound, 4 ounces. At birth, she measured less than 11 inches.

Nina’s first week of life was obviously overwhelming. Her prematurity caused several complications immediately. Most severe, was a grade 3 brain hemorrhage, and seizures caused by the brain hemorrhage. This hemorrhage put Nina at a 70% chance for severe disabilities such as cerebral palsy, mental retardation, blindness, or deafness. Also, Nina was completely dependent on a ventilator for her breathing.

She remained on the ventilator from her late July birth until October, and because of her extended use of the vent, her lungs became scarred. Nina required an apnea monitor, steroids and oxygen when she finally got to come home on November 18th, one week after her due date. Nina was diagnosed with chronic lung disease, apnea & bradycardia, retinopathy of prematurity, a PDA (that would later be closed at Riley), and also at home physical therapy for many, many months. She was also eventually diagnosed with asthma.

Our NICU stay was the rollercoaster we were warned about. We were there for 17 long weeks. Because Nina has two older brothers, it became a challenge to balance time at the hospital with time at home with the boys. In many ways, the boys became our blessing, keeping us focused on keeping a “normal” life for them.

Our NICU experience put us through many positive and sometimes very negative emotions, the first of which was shock. Nina had a perfect ultrasound 3 weeks prior to her birth, and both of her brothers had been born full term, with long labors. Then feelings of being completely overwhelmed took over. The alarms of the NICU and the sheer reality of how tiny she was seemed to close in on us the first few days.

Day after day we visited her and spent time doing kangaroo care. Kangaroo care was most rewarding; we felt the most bonding and useful while holding her. There were many difficult days, and many, many times when Nina would simply quit breathing. She would turn this horrible color from lack of oxygen. The nurses and doctors would work frantically, and eventually, she would begin to breathe again. We watched her most carefully during feeding times, and there were sometimes we would thump her feet to remind her to breathe.

As our NICU stay drug on, feelings of exhaustion set in. We were tired of everything dealing with the hospital, and the unfairness of the entire situation. During those days, we learned that sometimes terrible things happen to people who have done everything right. Sometimes, there is no explanation and life just isn’t fair. There were many people who asked questions that angered us at the time. One person asked us “So, what did you do wrong?” We now realize that those questions were ways of making those people feel secure in the idea that nothing bad could happen to them.

When Nina came home, we had the immediate job of coordinating her care. Doctors appointments for all her specialists, her equipment, prescriptions and physical therapy became a full-time job. Being her advocate also became a job. There were social workers and others who were ready to give Nina diagnosis that she didn’t actually deserve. We were especially grateful for her pediatrician who listened to our thoughts and opinions. All issues were discussed, and we felt empowered in her care.

Nina is now a healthy preschooler. Her brain hemorrhage seems to not have affected her cognitive abilities. We won’t really know until she gets into elementary school. Because of her chronic lung disease, she has had to be hospitalized for RSV and pneumonia. Every cold or fever needs to be taken very seriously. There have been times when she is fine one minute, and then later she will wake up from a nap with an asthma attack. Her climb up the height and weight chart has been very slow, but steady.

In many ways, this experience has been the best, and the worst of our lives. We have learned so much about life and people from this experience. I cannot fathom how we would have coped with all of this without the support of so many people. Family, friends, neighbors, coworkers and on occasion, complete strangers helped us. Complete strangers would have encouraging words to us when they heard we had a preemie. Support, food and prayers from all of these people sustained us.

The most important life lessons were learned by us over the years, not just during our NICU stay. Be thankful for all of your blessings large or small, and realize that as much as you plan, things won’t go as you expect. Looking at the big picture is most important, and our children are our greatest joy and accomplishment.