Monday, January 12, 2015

Day-to-Day Life at Home With a Premature Baby: Dying to Self and Thriving

            Life in the NICU with your premature baby is one thing; bringing him home and living with him day-to-day, without medical help or relief, is quite another. If you’ve ever wanted to learn how to die-to-self, having a preemie will take you down that path!

            Soon after our arrival home from the hospital, our laid-back NICU baby turned Mr. Hyde on us. He tried our patience, nerves and resolve for nearly seventeen months.
            As many high-stressed preemie babies are, he was hypersensitive to light, sound, activity and tactile stimulation. Quiet entrances into the bedroom brought fearful screams; covering his sleeping body with a light blanket brought kicking anger and cries of terror. Unable to maintain eye-to-eye contact with any of us, I feared my new baby had some kind of affection disorder, like autism, and I waited nervously for the time when he would search my face with his eyes or treat me with a smile. How I longed for the slightest up-curling of his lips!
            He had his nights and days completely reversed, unable to go to sleep without the lights illuminated in his bedroom. He’d taken up residence in a cradle next to our bed, so that meant the lights were on when we were trying to sleep. If we sneaked around his bed to extinguish them, he awoke with a start and holler, refusing to return to sleep unless they were again turned on. If strangers ventured toward him or tried to snag him for a hold, he’d cry, then succumb to fits of gagging and choking. Within minutes, he’d assume a catatonic appearance, then fall irrevocably asleep in my arms or baby seat, his body limp from the exhausting stress.
             Clearly, Cory was agoraphobic, so I remained fairly confined to the house—and content to be so—for several months. Miraculously, I was able to nurse him, and nursing continued every hour-and-a-half, with feedings no less than five times a night, well into June of 1996, sixteen months after his birth. He nursed for twenty-four months. Initially unable to produce substantial amounts of milk for him during night feedings, I had ot p supplement him with occasional bottle supplements of formula. Attempts to let him “cry it out” were fruitless, as he could—and would—scream defiantly for periods of time that sometimes extended into an hour-and-a-half range or longer.
            Well-meaning friends insisted it would be good for Cory if we exposed him more to the outside world and other people. “He needs it,” they’d admonish me. But all of the books we read on the subject of hypersensitive babies instructed us to maintain a specific routine—a quiet, peaceful routine—without surprises, loud noises, or copious amounts of touching or playing. We always watched for the tell tale signs of hiccups indicating stress overload. The hiccups came often and lingered, but we persevered with quiet surroundings, consistent behavior, and tender, careful touching (I was fairly successful with baby massage), and a miraculous dose of patience. The books warned us that it sometimes took close to two years for hypersensitive babies to relax and become comfortable with their surroundings. Cory didn’t improve those percentages.
            Our love and patience paid off. He bloomed into a bright, energetic and exhausting toddler and child, who regarded the world as a tremendously exciting place. A place to be experienced and conquered; a proving ground for the imposition of his steely determination and will. His first goal included overpowering the rest of the family—mother, father, and especially his older brother. He became loving and playful, as well as sensitive and volatile, a Tasmanian Devil with a temper to rival the Warner Brothers cartoon character. He bore the nickname “Hurricane Cory” for the second and third year of his life. And he elevated the art of manipulation and argumentation to a science.
            He grew from my baby to my little boy, bursting forth to establish his autonomous identity in our family, and in the world. Almost daily I stared at him, and wondered how he got here. But I know how he got here, and I continuously thank God for His precious gift to us. For better or for worse, Chris and I now love a little harder and hang on a little tighter—to both of our miracles. Too soon they are gone, and I did wonder, in melancholy anticipation, about life in a quiet house, without colorful toys, endless questions, expert argumentation, pattering feet and squealing voices. (What does a home schooling mother do once she’s forced into retirement?)
            Then there was that name thing that I talked about in one of my posts, when the name Joshua popped into my head as a name for Cory before he was born. A name I hadn’t even considered. A name I set aside because I couldn’t imagine God doing something as “simple” as giving me a specific name for my child.
            Within weeks of Cory’s arrival, I learned the meaning of Joshua. I was stunned when I learned it means “God saves.” Once again I considered the possibility that the “voice” I heard had been God, and that I had brushed it aside too quickly. If only I had taken the time to look up the definition; it would have been a perfect name for our baby. (And it may have stilled my anxious heart.) God truly did save him, when all the actuarial tables were stacked against us. Fearful of being disobedient, I seriously contemplated changing his name, but Chris said he really “looked more like a Cory,” and wanted to stick with that. Sometimes I looked at him and thought: “my little salvation from God.” But it doesn’t matter what his name is to think that; he is my salvation from God. Nothing can change that fact. And Cory has turned out to be a perfect name for him.
            And I still think of that mysterious nurse who “materialized” in my room at Cory’s birth, the one who could not be identified by other hospital workers and who I never saw again. Several years after Cory’s birth, while I was doing a study on angels, her memory snapped into my thoughts. Could it be? Had it been? I was almost afraid to consider the possibility, so awesome to me was the suggestion or thought of angelic intervention. Sometimes I think of the time when I will meet “her” again, and I am filled with excitement and awe at that opportunity. Will I reminisce with an angelic host about the day they fulfilled their responsibility to minister to one of God’s children? While I am aware that biblical angelic visits were always of the male gender, and many Bible scholars say that an angel would not appear in the form of a woman, I do not dismiss any possibility of entertaining an angel unaware, and the thought causes me to shake my head in wide-eyed wonder. And smile.
            Through that stunning two years, through ugly, dark valleys and soaring, verdant mountaintops, I had learned well that with God, anything is possible.


NEXT WEEK: Epilogue Part 2…

Until next week,

Thanks for joining me!