I’ve spent the last week or so trying to keep up with Rose’s progress and how I feel about it and what it means and trying to keep on top of my hope reflex.
It is strange going from 6 months of people avoiding the H word to it being uttered in every sentence. There has been a constant stream of specialists and administrators past Rose’s bed today preparing us for the likelihood of going home this week.
Home sounds like the fulfillment of a dream if you don’t listen too hard to the background noise… the end of Rose’s journey… a chance to be normal… but it isn’t really any of those things. It means that she’s safer than she’s ever been, bigger, able to be fed outside hospital. All these things are GOOD but there was a time not so long ago that I believed home would mean a well baby and my mind still goes there occasionally… it’s not a place my body will ever arrive though!
Home also means rushed trips to emergency, shoving tubes into her gastrostomy hole if it pops out, endless specialist appointments, endless medical EXPENSES, stress while I try to juggle the needs of the boys with Rose’s medical requirements, discomfort when we come up against strangers expectations of how a baby should be, anxiety about whether I’m doing the right things, whether she’s safe, will stop breathing and of course a whole raft of things we won’t know are in ahead of us until we encounter them.
Home means we’ll see most of you a whole lot more and that Rose will have a chance to be a part of her family and her community!
Home means for a while at least we have a break from people telling us what to do, from having to ask for permission to do the most basic things, from walking away from Rose’s bed and coming back to see someone prodding her awake for some necessary test or other. I’ll no longer be woken up (as I was last night) at 12, 1 and 3 for a new admission to our room or a crying baby who makes me just want to scoop them up and cuddle them to sleep.
I think the thing I’m looking forward to most is being in the same country as Andrew and the comfort all our children will have in seeing both their parents together in the same place. Of course this could be short-lived when they realise how much less they’ll get away with!
I’m not scared to take Rose home exactly… I’m scared to hope that home means a bit more than this I guess… that it means the worst is over and not that the worst is yet to come… I guess no one can ever know THAT about anything.
One thing that HAS become obvious being in the Children’s Hospital with our fellow weary travelers and something that we remind ourselves often is that you really must enjoy each and every moment, every smile, every milestone reached, every time you smell your baby’s head, kiss their cheeks, hear them laugh, every time they look at you like you’re their person. All babies make their parents’ souls sing with happiness, sick babies no more or less than well babies but for us we need to cling to that feeling otherwise this place is IMPOSSIBLE to make any sense of… this suffering that we’re doing, witnessing and surviving would just not be worth it if we weren’t LOVING 100s of little moments of every day after all who knows what tomorrow will bring?
The hospital seems to be planning for us to go home this Thursday or Friday all going well. Rose’s gastrostomy is looking good, we’re moving from 8 to 7 feeds per day so that Rose has a 6 hour stretch between 12am and 6am that she’s not fed. Her home C-PAP machine is all hired and we’ve applied for her own. She’s having all sorts of tests for home and we’re being given lots of training (CPR, Equipment maintenance, emergency P.E.G. replacement) and lots of follow up appointments.
A huge issue that’s preoccupying me at the moment is food… she now eats almost twice as much as I manage to express each day which is great for her but I’m finding it difficult to contemplate formula… because I’m me and accepting would just be too easy I guess ;-)… so I’ve been stalking the Human Milk for Human Babies facebook group and building up the courage to use donor milk… there are associated risks but it still feels better. My generous sister (I’ve a draft post pending on Rose’s new cousin), Kate is also trying to express for Rose which would be such an incredible gift and really is the ideal though the freight costs from Perth may be a little extreme!
Another possibility is that Rose could start breastfeeding again. She has started allowing milk and nipples in her mouth but not latching yet. It’s a huge step and I’m practicing extreme patience. The first time she did it I can not describe the sense of relief and wonder that flooded my body.
So. Looks like all going well in next few days I’ll be coming home and going about my life generally with
my arms full
and that will be, without a shadow of a doubt, something to celebrate!
Rose Eir 