We approach Evelyn’s one-month birthday tomorrow, and she continues to grow, progress on feeding, and work her way home. Yet, nothing is as it is supposed to be.
A nurse told me that someday (hopefully soon) our time in the NICU will be like a dream. Our escape from the doldrum hospital will feed the abyss between us and these bleaker days. We can go on to live our lives, love on our baby, and pretend to be a “normal” family. For now, things are not how they are supposed to be.
Hour after hour, day after day, week after week, we spend our life sitting in the small quarters of the shared NICU room. A curtain is the only barrier between us and our baby buddy’s family; loud cell phone conversations, YouTube videos, and boisterous conversations grate on our last nerve. It is hard to settle into our quietude and enjoy our little one. This is not how it is supposed to be.
Breastfeeding attempts have left us all underwhelmed: Evelyn gets no milk; I get disheartened as her too-small mouth cannot quite figure out what to do. Conscious of not wasting her energy on these attempts–balanced with teaching her to bottle feed on a set schedule, our sanity, and limited time with our baby–breastfeeding has become quite clearly a task for another day, maybe. This is not how it is supposed to be.
Getting Evelyn to take enough food from her bottle so we can get her home yields more anxiety and fear than satisfaction. A thin orange feeding tube, taped crudely to her face and nose, reminds us that we cannot adequately nourish our child. With nothing but a forced coordination, Evelyn doesn’t know how to pace herself, swallow what she gets, remember to breathe. Yearning to do this for her, we often guess wrong. One eye on the monitors, one eye on her earnest attempts to eat, the numbers play a dangerously taunting game. Her breath sometimes stops, her heart rate drops, and the nurses rush in to change her ashen face back to pink. This is not how it is supposed to be.
Watching her sleep in her cozy plastic box, waiting for her body to learn to regulate her own temperature, we are not free to hold her all day. Touching her tiny hand through the small porthole doors, we crave to have more freedom. We crave to have her in a crib. Helpless, we cannot help her. Helpless, we bundle her as best we can. Helpless, we wait. This is not how it is supposed to be.
Despite all the dread of going back to the hospital everyday, the over-exhausted tears that show up uninvited more often than wanted, the wistful dreams of being home permanently, Evelyn makes all our efforts worth it. Her tenacity is admirable. Her unconditional love and snuggles are endearing. Her fighting will is inspiring. One day soon, our dreams will be reality. One day soon, this purgatory will start to fade as new memories fill in the spaces. One day soon, things will be how they are supposed to be.
Laura Gaddis 