One way Hannah is able to document her journey with Congenital Heart Disease is through collecting heart beads.
Each bead is colourful and distinctive and represents a different procedure or event in Hannah’s treatment. They’re generously donated by the Northern Beaches Social Riders and HeartKids. Some kids end up with lengths of beads that can wrap around their hospital bed numerous times! And one mum said she’s divided her daughters beads up into different years because they are just too heavy and long otherwise.
As Hannah was discharged quite quickly the first time around we forgot to pick up her heart beads, so this time around we had quite a backlog to organise!
The perfectionist in me wants to make sure Hannah’s beads are 100% accurate. But I know that’s unrealistic given the number of procedures she had while in hospital. For example, on a single day in ICU she might have 4 or 5 blood tests! So getting the vibe of her journey even if it’s not completely accurate has been my aim.
Here are Hannah’s up to date heart beads:
And one short length (which is actually upside down in order):
- Pink spotty = chest x rays
- Smiley face = a good day
- Red balls = blood tests
- Blue square = pacing wire removal
- Fish = a procedure, in this case her arterial line being removed
- Owl = extubation
- Green heart = a complication, in this case some extra bleeding after her surgery
- Purple cube = time in PICU
I hope that when Hannah’s older her heart beads will be a fun and helpful tool for her to process living with a heart condition. To help her better understand her brave start to life and to give her confidence in herself and the scars on her body. She can then choose whether she keeps them on display or shares them with others (maybe as show and tell?) or stores them privately.
Please give thanks for…
- The heart beads program and the aim to help children actively process their experiences with congenital heart disease
- Hannah’s journey so far and her continued good recovery
Please pray for…
- Wisdom for Gus and I talking with Hannah in future about her heart condition
- Hannah to find her security and identity in Christ, and not in her physical body
For you formed my inward parts;
you knitted me together in my mother’s womb.
I praise you, for I am fearfully and wonderfully made.
Wonderful are your works;
my soul knows it very well. – Psalm 139:13-14