For families in the neonatal intensive care unit (NICU), the path home with their baby can feel distant. For this reason, celebrating each step forward as their baby grows and becomes stronger, can offer light at the end of a seemingly endless tunnel.
The Journey Beads program at Mount Sinai Hospital is a special way for families to celebrate the unique milestones of their babies in the NICU. Integrating the core principles of the Family Integrated Care model (Fi-Care), families who wish to participate are given a string with their baby’s name on it.
“The Journey Beads program encourages parents to participate fully in family integrated care by attending classes, family meetings, and other activities throughout their time in the NICU,” says Sari Shawn, who is a social worker in the Mount Sinai NICU.
Through the Fi-Care philosophy, families are provided appropriate tools and resources to play an active role in supporting their baby in the NICU, which can not only foster confidence, but research has shown, can also decrease parental stress.
A unique bead is added to the string for Fi-Care listed items, such as multi-coloured stars to represent the first bottle feed, a round purple bead for attending parent education sessions, or a fluorescent green bead representing parents’ participation in medical rounds. These beads are so much more than jewelry; the beads strung together are part of their baby’s story. Each bead added allows parents to reflect on their involvement in care for their babies, and perhaps offer validation to their unique experience in the NICU.
“In the NICU, there is sometimes grief, but there is also so much celebration,” says Sari. “The journey beads program provides parents with a tangible opportunity to celebrate their baby’s progress and milestones in the hospital, and they provide a beautiful memento upon leaving NICU. They are one of the many parent programs that makes our NICU a pretty special place.”
Baby Jasmine was born at 25 weeks and has been in the Mount Sinai NICU for over 86 days. During her stay at the NICU, her mother Tiffany and their primary nurse have commemorated each milestone by adding to Jasmine’s journey beads together.
“The NICU Journey Beads program is an excellent initiative that provided me with a wonderful keepsake to track my baby’s growth, to see all the challenges that my baby has overcome, and to acknowledge our experience in the NICU as parents,” says Tiffany. “It is her special and unique story, and one that I will be able to cherish forever. Many thanks to this program for helping me document Jasmine’s story through colour, courage, and hope!”
Baby Jasmine is growing stronger with each day and is currently awaiting transfer to a level 2 NICU. While her time in the Mount Sinai Hospital might be coming to an end (which is certainly a cause for celebration), her family will always have the bracelet to look back on as a reminder of how far she has come.
The journey spent in the NICU can be difficult to navigate, but these beads can communicate a message of hope to parents that their baby is one step closer to home.
The Journey Beads program is run through donations, and through the support of Handful Hearts and the Parent Advisory Committee (PAC). The PAC brings together parents who have previously had their baby in Mount Sinai’s NICU. This volunteer-led committee allows families to partner with clinical teams to provide feedback based on a collective understanding and shared experience, to strengthen care and family support in the NICU. Donations to either the bead program or to the Mount Sinai NICU can be made on their respective websites.