July 29, 2015. Music and Dance

Music and dance.

If you know me, you know I love music and dance; listen to it, watch it, learn it, I love it.

There’s this idea, that when you’re sick and you go to hospital, you get better, and then you come home from hospital and carry on with your life.

So our boys were born, we were in hospital, they should get bigger and better, and then we should go home and carry on with life.
That didn’t happen.

But we are still in hospital and Oliver is still getting better. It’s not linear, each day isn’t an improvement on the one before, in fact sometimes it can feel like weeks before you think there’s been any change.

We were told by every doctor and every nurse that this road for us would be one step forward and two steps back, all the way through.
Except sometimes it’s just your big toe that gets to go forward, and sometimes it’s like someone picked you up threw you backwards against the wall, and sometimes we go sideways and it’s hard to decide if that was good or bad.

And so it’s a weird dance that we do each day, and our feet follow Oliver’s, as we go forward, and back and to the side together. And sometimes the dance is slow and it feels like it doesn’t end, and Ed Sheeran is telling us that loving can hurt sometimes. Then there are days when you take a huge step backwards and you want to quit this dance right now, but we listen to Taylor and she says shake it off.
When you’re tired and and you can’t stop crying and if it was up to you you’d hide under the duvet all day Rachel Platten motivates us to move because everyone needs a fight song.

So Oliver was ventilated, and one day we arrived, after 2 and half weeks and he was on CPAP, and we danced the happy dance of progress, think jazz hands!
But, as we were warned, we took a big giant leap backwards a few weeks later when he got sick, and sick to a preemie is not just don’t-feel-well sick, it’s completely-stop-breathing-altogether sick. Hello ventilator. Sad, emo lyrical dance now…

CPAP again. No feeding progress. Why won’t his stomach like milk? Ouch vaccinations. The rotovirus incident (we won’t go there today…) leading to angry, loud, aggressive Hiphop. It was appropriate.

Thankfully today, day 62, is even better than when we had jazz hands going on. Today is ceeeeelebrate good times, come on!!!!!! We are beyond dancing today, we are just plain jumping up and down.

At 0930 this morning Oliver’s CPAP was completely removed and he was trailed on nasal flow, 7 litres per minute of blended oxygen and air. For non medical folks, this is a HUGE step forward. A cautious one, with every chance that we will fall straight back again, but forward nonetheless.

If dancing forward continues, and we so hope it will, then there is a small chance that maaaaaaaaybe we are heading into the second half of our intensive care unit stay…..

Woooooah we’re halfway there, wooooah living on a prayer, take my hand, we’ll make it I swear!!!!!





Author: rfclews

I'm just another mum trying to figure all of this out, with the added bonus of getting to start extra early, and well and truly on the back foot!

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