I’m ready to get off the roller coaster ride now….
It seems that when things go right, something always ends up going wrong – it’s tiring, exhausting and draining.
I’ve cried so many tears lately that I don’t know how I have any left.
My little boy will be ‘born’ on Thursday. He will return to age 0. According to everything I have read, we should be packing him up, bundling him into the car and finally introducing him to our families and friends.
Instead, we will be doing what we’ve been doing for the last 9 weeks – sitting, watching and listening to all the signs and alarms, just to make sure he is still breathing.
As we have learnt, one week can make a huge difference in Dexter’s life. His almost one week as Westmead Children’s saw a massive improvement. He had his first bath, wore his first outfit, and had his first enema…. Thankfully, his test results were all clear; he was then taken off CPAP and shipped back to RPA.
Everyone greeted us with familiar smiles and exclamations of how good he looked, how gorgeous his eyelashes are, how great it was to really see his face. We were basically welcomed home. Things were familiar and routine was re-established.
Over the next week, his food increased again and his dependency for oxygen decreased. He was moved back up to the High Dependency Unit (HDU) and officially ‘hatched’ into an open care crib.
Hospital visits became an almost enjoyable occasion. We could see his face, we could touch him, we could kiss him and we could hear him – all without looking through a Perspex house.
And then things changed. He had his two month injection. I was informed he had had a reaction to them. He was de-sating more. He was put back on CPAP.
Memories from our last HDU visit resurfaced – he had had 6 days off CPAP, 6 days in HDU. This was followed by 5 weeks back in the Intensive Care Unit.
So it was with sadness and fear that I visited today. Sad because of the step back, fear because of the continual unknown.
I know better than to get excited, but I allowed myself too.
I allowed myself to think of a potential timeframe for transferring to Wollongong. I allowed myself hope that he was on the up and that we were done with the downs. I allowed myself to think it was ok to not be there all day, every day.
Everything came crashing down when I saw him back on the mask. He hates it and cries. Dexter is such a placid baby that he doesn’t cry unless he is really frustrated – he didn’t even flinch with the enema. Yet every time he’s on that mask, he cries. And that absolutely breaks my heart.
Routines will continue. Small milestones will be celebrated, cuddles will be enjoyed and laughter will be heard. But to quote a nurse regarding today’s happenings – ‘this really sucks balls!’