My daughter had been home from the NICU two months when Hurricane Sandy made landfall in my home state of New Jersey.
Born at 28 weeks due to placental abruption, Evelyn came home in August after 68 days in the NICU. Like many others, she was accompanied by an apnea belt, pulse oximeter and, most importantly, an oxygen concentrator. Days before her arrival home, I had filled out a form to alert our power company that we had a baby on important medical equipment in the house.
The night the hurricane hit New Jersey, Oct. 29, 2012, I barely slept. The wind howled so loudly and the rain was so fierce that it was terrifying. I could hear transformers blowing out all over town as trees toppled. My husband and I slept on a pullout couch next to the nursery so we could be close to Evelyn during the storm. Due to her being tethered to the oxygen system, bringing her into our bedroom was never an option during those early months.
Sometime in the evening the power went out. We hooked Evelyn’s cannula to her emergency oxygen supply, a large metal cylinder that didn’t require electricity, and set it for half a liter per minute, the level she’d been at since leaving the hospital.
The next day, the damage that New Jersey and New York had sustained became apparent. I charged my cell phone off my car battery and checked out the news. Parts of the Jersey Shore had been leveled. The subways of New York City were submerged. New Jersey was in a state of emergency and 2.4 million people were without power. Our own neighborhood looked like a bomb hit it. Trees were down everywhere, homes were damaged and power lines hung limply in the street. People waited in long lines at gas stations to buy gasoline for their generators. We didn’t have one.
The reality of our situation set in. Our oxygen tank had a finite capacity and the power company wasn’t even giving estimates as to when electricity would be restored. The house was getting chilly and I had a 7-pound baby that needed breathing help.
The living room, which provided a fireplace as our source of heat, became our home base. We put a futon mattress on the floor and Evelyn’s travel crib next to it. We had to forego the apnea belt during that time because the battery lasted only eight hours. The first night that Evelyn slept without it, I must have checked her a dozen times.
I called the power company to remind them of our priority status due to medical equipment. We were told to “make other arrangements” because restoration could take weeks. So much for that.
I called our medical supply company and requested an oxygen delivery. They said it could be days before they reached us.
Now pretty desperate, I contacted our neonatologist for advice. He said that if an oxygen delivery didn’t come, he could secure a hospital room for us. The thought of bringing Evelyn back to the hospital made my stomach turn. I prayed that I wouldn’t have to. I broached the idea of turning down Evelyn’s oxygen level to one-quarter liter per minute in order to conserve. We were given permission to do this, but were told to check her oxygen saturation periodically to ensure she didn’t dip too much.
Our power outage lasted a week. We lived in front of the fireplace to stay warm and I kept Evelyn bundled up. I used disposable 2-ounce nursettes of Neosure for feedings so I wouldn’t have to worry about washing or sterilizing bottles. Of course, nipples had to be sterilized the old fashioned way – using a pot of boiling water on our outdoor grill. At night, I used a battery-operated lantern when I changed diapers.
All week we waited for an oxygen delivery, but it didn’t come until the sixth night. The next morning the power came back on. Our emergency oxygen cylinder lasted the entire week with a tiny amount to spare.
Looking back, it was a very difficult week. Life at home with a newborn is a challenge under the best of conditions, but parenting a preemie on oxygen during a week-long blackout was an experience I’ll never forget.
And yet, our family found a silver lining.
Evelyn did so well on one-quarter liter of oxygen that her doctor gave us permission to keep her there after power was restored. After several months at half a liter and unsuccessful attempts at lowering, we had finally turned a corner. A month later we began to wean her off oxygen and by the end of December she was breathing on her own.