Mummy's answer was this; Jacob was so young (6 days old) when he had his operation that he still didn't look like a baby, because of that his stoma didn't seem real so even though it was a little daunting to clean it the first few times it never really registered what it was we were doing.
Now after doing it for so long; it's just routine for Jacob's cares to clean his stoma / change his bag so we think nothing of it (except of course how upset he gets during the process). If he was to only just be getting a stoma now at this age, we think it would take a lot more getting used to, and we're not sure we would be quite so laid back about it.
I have posted this as the question really surprised me and made me think just how distressing the whole act of caring for a baby with a stoma actually is, and how what we have been doing for the last three months really isn't normal - although for us it has become our lives.
To those who might be reading this who are starting out on a similar journey with their own premature babies, both myself and Mummy would like to reassure you that what seems extreme now will soon become routine and anything that happens can be handled if you just take it one day at a time.
We really look forward to a time (hopefully in the next few weeks) where Jacob will not have his stoma and caring for both of our babies will be more 'normal' and less like a surgical procedure, we can then move onto the next challenge in Jacob and Lilian's lives, which we hope will be coping with caring for them without nurses support at home.
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