Introduction

Welcome to life in the NICU. Your daydreams about the birth of your baby or babies probably never included a NICU stay. For many if not all parents, having your baby begin life in intensive care is one of the most traumatic experiences in our lives thus far. No matter how “healthy” your baby is, or short your baby’s expected stay is, seeing your baby attached to wires and machines, and confined to an area just within reach of his or her isolette is not the way any of us envisioned the first days, weeks, or months of our babies lives to be. This newsletter is written by parents for parents, in an effort to make life a little more comforting as you journey through the NICU.

As former NICU parents, we remember all too well the shock of finding our babies in need of intensive care, the loss that accompanied leaving the hospital without our babies, and the seemingly endless wait for our infants to be well enough to come home. We remember the sense that life in the NICU was very much about one step forward and two steps back, and the frustration of feeling like we were on a psychological roller coaster.  We also remember the way that members of the NICU team grew to feel like part of our extended family, and our sense of gratitude and indebtedness for their excellent care of our precious children.

As federal laws regarding patient privacy become ever more stringent, there is sometimes a sense of isolation in the NICU, as parents are reminded not to look at other infants or ask questions of the staff about them. The reality though, is that the NICU by design is not a private place, and that parents tend to genuinely care not only about the welfare of their own child, but also of the newborns that surround them. More than that, we have found that bonding with other parents during our NICU stay created a unique form of support that helped to sustain us throughout times of hope and despair, and that have lasted well beyond the NICU. This newsletter is one way of breaking the code of silence that has been somewhat artificially imposed upon the NICU environment, by giving voice to parents’ experiences, providing access to resources that we have found valuable, and highlighting people and health issues pertinent to the NICU.

We believe that by chance or design, your baby has begun its life outside the womb in an excellent facility. From the moment he or she was admitted to the NICU though, you have probably felt like the experience is surreal. Welcome to the NICU journey . It is one that has the potential to transform.