I met 28-week Jasmine first, observed her powerful efforts to keep her tiny, one and a half pound body tucked, arms and legs folded in close for security as if trying to recreate her experience in the womb where she’d been just hours earlier. The sounds of the bright and busy intensive care nursery, the breathing apparatus, the lines and unwieldy diaper she wore, all weighed on her attempts to find a comfortable moment for rest. Her nurse that day generously responded to my suggestion to encourage Jasmine to quiet her movements by adjusting her blankets, rearranging her equipment, and quieting the room so that Jasmine could rest while being softly supported in a tucked posture. Jasmine grasped my finger tightly as her nurse gently adjusted her blankets, and then fell into a quiet, relaxed sleep. I headed down the hall to the post-partum unit to meet her parents. Tina and Jason greeted me hesitantly; their anxiety that I might bring unwelcome news of their newly born baby girl somewhat relieved as I introduced myself and congratulated them on the arrival of their amazingly strong and engaging baby. Tina, recovering from emergency surgery due to placental abruption, pre-eclampsia, and having not yet seen her baby, smiled weakly to my account of Jasmine’s behavior. As the days turned into weeks, Jasmine and her parents spent many hours together, somehow managing a bright attitude despite the lasting effects of pre-eclampsia damage to Tina’s body, the unexpected infection that put Jasmine on a breathing machine for a short time, and the difficulty of spending hours with little privacy or comfort. Along the way, I spent time with Jasmine and her family, guiding and encouraging them in their developing roles. I experienced satisfaction that Tina and Jason felt safe to share their worries, frustrations and hope during our times together. I managed effectively to advocate for a quieter room and a number of nurses invested in this family regularly cared for them. Despite these good efforts, I am left with the challenge of “was it good enough”? far too often. As typically occurs in so many instances, the earlier appreciation of the baby’s need for a supportive environment in which her abilities emerge, gives way to the hope that pushing the baby to “take a bottle” will result in an earlier transition to home. Despite what I felt had been a particularly successful process in providing this family the foundation to navigate past the typical obstacles, the forces of habit and NICU culture prevailed. Ultimately, Tina and Jason took Jasmine home healthy yet, breast-feeding abandoned. Furthermore, I know they experienced undo pain and plenty of conflicting messages as to their competency as parents along the way. The story of one family continues on long past "discharge"; the chapter of time when I get the privilege to walk along with them carries a great deal of joy yet also, the burden of always wanting and needing to do more with the little time that is given. Families who must endure the NICU deserve better. Evidence and logic demand it. While there are many who sing the same song, there is much work to be done.
*names and details have been changed to protect privacy*
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