The beads behind the blog
The day your baby gets settled into the NICU, they are given a few Bravery Beads to hang from their crib. They start with an admittance bead, and your babes name. You can collect the beads for every procedure, poke, event, diagnosis, test, visit, wow moments, and pretty much anything else that happens.
The beads are so much more than beads. Their meaning goes way beyond the beads. They symbolize Bravery. They symbolize every obstacle these babies and children go through or overcome. The sizes, shapes, colours, & pictures on them, all have meaning beyond just a bead. There are so many different options, and each child's strand tells their specific story. It's a timeline of their story.
Adam's beads reflect his journey perfectly. We have his strand from the NICU where we documented all of his tests - every single part of his little body was tested and they all came back normal. When he got his G-Tube, we documented and collected beads for every time he peed and pooped - because for the first time ever it meant that his stomach was filling and everything was working as it was supposed to be, and there were no associated anomalies or issues.
We have a video from us taking our final bead in the NICU. To us, that discharge bead meant so much, but we had no idea about the very different journey that was ahead of us…
Adam's beads look the way that they do because they are an exact representation of his time spent on 5B. There aren't many colours, not a lot going on… but there are a lot of them.
We collected beads for every flush or suction of his replogle, clearly some days had more than others. He has beads for every time his feed was connected and he got the milk I spent so much time pumping for him to grow big and strong. It was very calculated - every amount, every time.
We collected beads for every replogle change, every time an OT or Child Life visited, every injection, and every holiday we missed while we were there.
My favourite ones are Adam's Gap Study beads. Each Gap Study bead is followed by a WOW bead and an Unusual Occurrence bead. Because every single Gap Study he had, his esophagus continued to grow, and his replogle went down further than expected.
We stopped collecting them the night before Adam's surgery. He had one IV put in, and the last one we put on was his surgery bead.
There was no way we were able to keep up with the chaos we lived through in the ICU. To be honest, I'm not even sure if I want to see them. I know I can't even remember everything… nor do I really want to. I've blocked so much of it out, I don't know how I'd feel about a physical constant reminder of it.
We also didn't continue Adam's beads when we got back up to 5B post-op until discharge. There was a night where he got poked what felt like a million times as someone came from literally every separate unit of the hospital to try and put in an IV.
Adam's beads tell his story, and our story. Maybe we'll go back and add his clinic visits and G-Tube removal… for now, they're perfect just the way they are - displayed proudly in his room, with his NICU ones on his Hudson Bear.
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