Looking for advice to a family in the NICU

[Guest guest]

Dearest CHARGE family-

Looking back to those incredible life-changing life-shaping days in the neonatal

unit - with the wisdom, mercy, tenderness and hindsight of experience- what

advice would you give to new parents of a marvellous son with CHARGE?

How shall they get through the time of waiting, not knowing and hoping to go

home?

What things would you now advise yourself back then (if only you could) ? What

would you look for? What would you do for yourself? What would you tell others?

How might you get supports from people who are feeling helpless and a bit afraid

of your circumstances? What did you find to be truly important? What things

would you make sure to do with - for - to your precious baby?

Thank you so much in advance-

in love,

Yuka