Amid the constant beeping of monitors and scheduled medical checkups, a stay of any length in the Neonatal Intensive Care Unit (NICU) can be stressful for new parents.
To mark the many little milestones that happen during care, staff and volunteers at Mount Sinai Hospital aim to lighten the load for families through the Journey Beads program.
Families are first given a string with their baby’s name on it, then as the days in NICU go by, accomplishments are marked with a new bead added to the line.
“Every bead that we add kind of symbolizes that you’re one step closer to home,” said Abarnaa Vivekanandan, Mount Sinai Hospital’s parent resource coordinator.
“Every baby’s journey may be different here — we just want to celebrate that. We encourage even the little things.”
From the family’s first skin-to-skin interaction to baby’s first breastfeeding, every achievement is celebrated with a bead representing that unique experience along the NICU journey.
One bead — marked with a yellow smiley face — is a favourite for Vivekanandan.
“It symbolizes going home,” she said while showing off the bead. “Discharge day for our babies. It’s a very special bead for parents to receive.”
“When you’re here, sometimes you don’t see the light at the end of the tunnel,” said Fabiana Bacchini, whose son spent 146 days in the Mount Sinai NICU.
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“Every day is a different day, sometimes you have one step forward, two steps back. It’s very hard. So, when you get a bead, it’s like, ‘okay, we accomplished something today,’ even if it’s small.”
Bacchini knows that everyday is worth celebrating with a preemie.
She was essential to starting Mount Sinai’s Journey Beads program seven years ago, taking inspiration from the bravery beads that children receive at SickKids.
“When you have the days where you feel so defeated and you feel there is nothing else you can do…this is one thing that can happen,” Bacchini said.
“Even if I hold my babe skin to skin that day, that is a milestone, because we made it to that day.”
For Bacchini, the beads are a way to tell each baby’s story and let them know how much they’ve already achieved.
“It’s to tell their stories themselves. Telling their stories of their beginning and where they are today.”
For many families, the string of beads continues to grow as their babies do, with parents adding on when more achievements are reached — even after discharge.
“Lots of families come back with beads that are way longer than the beads that we give them,” Vivekanandan said. “It’s something that symbolizes their NICU journey. It’s a memory, it’s a celebration.”
For Bacchini, the beauty of the beads is the hope they provide — highlighting the bright side of a very difficult journey.
“While the baby is breathing and fighting for their lives, we have hope.”
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