On tentative going home whispers

By 24th February 2017 One Comment

So. Going home has tentatively been raised. At first I wasn’t sure, he’s on four hourly feeds (that require two hourly attentions, for turning the pump on and off, setting up and cleaning down), meds ten times a day (more if we stagger them so can tolerate them a bit better), and I’m meant to be pumping every three hours.

I’m not sure how it’s going to work at home without the army of help we have here. Add in all the medical appointments and hooha and how am I going to fit time in for life? For showers, and grocery shopping and eating? With the two hourly feeding pump drama, how is sleeping going to work? How do I do the stuff that helps? Physio and tummy time and research?

The enormity of what life looks like outside the hospice freaks me out. But then, I think I’m getting a little too comfortable at hospice. A little too reliant on the nurses (they’re all enablers for three am sleep for me when it means baby cuddles for them). 

Even logistics aside, we’re in a nice cosy bubble. Here, an NG tube is the least out of place thing – all non verbal, non ambulatory kids are welcome here, and loved and are the norm. What happens outside the hospice, outside the nice safe bubble, where my kid goes from being the norm, to not?

I think now is the time we knuckle down. Now, in the tricky time when we have to reestablish a crazy routine is when we figure out what kind of parents we are.

Just, fuck. I am so ready to be home, but I literally can’t see how it’s going to work and I worry about all the unknowns. I guess we plow on ahead and do our best?

I want to face it in a determined ‘I totally am the best at life and will win at insane routines’ kind of way.

We’re not sure when yet, but now I’m totally ready to take my baby home. Fuck you NKH. I want more time with my baby.


Join the discussion One Comment

  • Charlotte says:

    It sounds so flippant but you find a way. You make it work. In time everything becomes more spaced out and less vital. Skipping or giving med late in year one has all sorts of consequences. In year 5 it really doesn’t matter. You can do it and you will do it and your boy clearly isn’t going anywhere just yet xxx.

Leave a Reply