Yep. We're going back
With the results from Carter's sleep study test 'less than ideal', we knew he'd have to return for a follow up test when he began moving more, to determine whether or not he'd need a bit of breathing support overnight.
Carter received the official diagnosis of 'Obstructive Sleep Apnoea' back in July - a condition that was suggested we manage at home, with our own CPAP machine. A condition that was only present when Carter was on his back.
The thought is that the 'obstruction' was reflux related, but no one is certain without further testing.. so this is where our 'further testing' begins.
With the knowledge that Carter was breathing perfectly when asleep on his tummy, and under the supervision of a fantastic doctor, we went on to sleep Carter on his belly when he came home, avoiding the need for any breathing support.
Carter will return back to Westmead's Turner Ward in the coming weeks to undergo his second overnight sleep study with Dr. Waters.
We had the pleasure of meeting Dr. Waters on our last visit to Westmead, at the cafe of all places; "So this is the little one raising all these questions". I laughed, hoping that we'd have answers soon, before quickly rushing off to catch a taxi to the airport.
Our last visit to Westmead was unimaginable. The staff were beautiful! Chenda, the unit manager, was amazing! But the 'specifics' had us caught up in a situation where, although Carter was still an inpatient at Dubbo Special Care Nursery, he was seen as an outpatient at Westmead so we could hurry the process along - otherwise we could have been waiting another four months to have him seen as an inpatient. He'd have been eight months old.
Because of this, Carter was taken to Westmead by the Royal Flying Doctors but had to come home via a taxi and a commercial flight. Yep, the first place we ever took our prematurely born baby was to the heavily populated, germ friendly, Sydney airport. ..and I didn't know about this until THAT MORNING!
I unloaded my huge duffle bag out of the back of the taxi, filled with nappies, wipes, bottles, clothes, baby wraps.. and a tiny little resuscitation bag and mask - just incase shit really hit the fan and emergency personnel didn't have the correct sized mask for my super tiny baby. Really, it was just a security blanket.. an absolutely useless security blanket.
I was scared shitless and on my own.
I remember walking into the airport, absolutely sweating. I began to get incredibly anxious and I didn't want to touch anything. People were drawn to the tiny baby in my arms, "How old is he? He must be a brand new one?!" one old couple asked. "He is", I nodded, not really wanting to explain why my four month old was so tiny.
It's no shock I came back to Dubbo absolutely fuming.
The suggestion was made by a nurse that, after our ordeal, surely we could just room in for the next couple of days and get Carter home after the weekend (we came home on a Thursday afternoon), rather than drag his discharge out any longer. (For anyone outside the NICU or SCN circle; 'Rooming in' is when you stay on the ward with your baby, who is put completely in your care for a couple of days, but nurses and doctors are there if you need them).
I, how I so elegantly like to put, 'lost my shit'. I was taking Carter home.
His doctor suggested keeping him in the nursery overnight to monitor his oxygen after the flight. I tearfully agreed.
We don't have the 'sweetest' memories of Westmead.
It'll be a bittersweet trip, I suppose.
I hate the EEG gear.. more so, having to remove it. That glue takes HOURS to wash out.. and it's painful! It gets stuck to their hair and isn't pleasant to watch a baby go through, at all.
You may remember Carter's first EEG and how it took me DAYS to get that glue out!.. he was two months old.
I cried and cried as he let out a scream with the removal of each probe. I had to ask them to stop and give us both a minute. It was horrible.. worse than bloods, worse than cannulas, worse than an ROP screening. It was probably THE worst experience of having to watch Carter go through something that I couldn't fix.
But it will be nice to catch up with friends.. visit Nepean.. but my anxiety is through the roof with this one. Partly for the process.. partly for the outcome.
When we left the NICU, I thought we were leaving all of that behind us. I can't imagine bringing it into our home.
Fingers crossed for a positive result. Honestly, I don't see why it wouldn't be. He's doing so well now!
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