There are these words…
There is this story…
There is a memory…
It must be something to do with the time of year. Maybe, it’s waking up and it already being light outside, or the going home from work at night and having time to walk on the beach before dark.
Or maybe it’s the distance from those words, that story, this memory, that allows me to process it into something that feels like a narrative.
The last few weeks I’ve been recalling this memory, it is a story that needs telling, I just hope I have the words.
This memory, it is my own. It is of the time leading up to and including our time in Starship. Some of it is quite confronting and I will be including pictures. But the good thing is you already know now that it is the happiest of endings. So with that in mind, let me start with one of my happiest memories and go from there.
Nyah’s welcome into this world… four distinct memories, I want to share here. The rest of those long few days I remember, like a whirlwind with only vague snatches of moments to recall.
But I do remember:
The NICU nurse handing Nyah to me the first time ever, and taking her to Jules to hold.
Walking with Nyah to NICU while Jules was whisked away to surgery.
Nyah’s touch once she was safely ensconced in the incubator.
Waiting with Jules in recovery, before going through to NICU and reuniting Mum and Bub’s again.
The period after Nyah’s birth included two months in NICU, and almost a month when Jules and Nyah lived in Ronald Mcdonald House across the road from the hospital.
The whole period seemed like a strange limbo. And even though, we had so much happen, (including; visits from family and even international friends, a Christmas and even a wedding); the days-on-days just seemed to blend, into one another.
At the beginning of February they finally allowed us to come home with Nyah, she was still plugged into an oxygen bottle and a blood saturation monitor and with an NG tube, to aid with feeding, we were instructed to fatten her up as best we could.
Summer had past us by but my sister and her family returned from the UK and took up residence at home ensuring we were fed, the dishes got done and the house was filled with Love and Laughter.
Then one Friday morning, mid-March I got a phone call from Jules, Nyah’s heart rate was high and climbing. I got home as fast as I could. Jules had phoned the home care nurse and we arranged to get an ambulance to take Nyah into hospital just in case. Jules went with Nyah in the Ambulance and I followed in the car.
Even though she had stabilised and was back to her almost cheerful self, Nyah was admitted overnight “for observation, just in case”.
I headed home through worse than usual peak hour traffic, never feeling so far away from where I wanted to be, I fed the cat and the dog.
Jules rang me, Nyah had, had a second event. The trip that had taken 90mins at peak hour, only took about 30 on the return, (I didn’t speed much).
It was suspected that she had had a TET spell, a complication with the type of heart defect Nyah had (Tetralogy of Fallot) that results in a pressure difference in the heart meaning that unoxygenated blood gets shunted across to the wrong side meaning that oxygenated blood doesn’t return from the lungs.
By the time I got to hospital the call had been made to shift her to ICU. That weekend was the longest hardest weekend of my life. I cannot imagine how hard it was on Jules, the feelings that it brings up, just writing this, makes me shudder.
By the time the weekend was over they had stabilised Nyah using a drug that relaxed the muscle causing the pressure problem. And we were given a date for “The Big Op”.
Two days before the scheduled operation, we flew up on a commercial flight, with Nyah still on oxygen; I think most of the passengers noticed us.
31st March -The day of the operation we walked around the Auckland domain, with a couple of dear friends as support, just waiting to hear that it was over and she was okay.
We passed her to the doctors at 7:45am and got a phone call to say we could see her in an hour at 3pm.
The next ten days starting with the first of April not so much a blur as a strange twilight that filled our existence so entirely that the memories that flood back of that time feel months long.
The major milestones were.
31st March 5:00pm– seeing her for first time post op.
2nd April after they closed her chest.
5th April Mum’s first hold afterwards.
6th April-Dads first hold and Nyah out of PICU.
10th April – Nyah off oxygen, Dad home for a few days work.
It seems so simple, so straight forward, to reduce our time in PICU to 5 photos, with captions.
The journey was soo much more complicated and had soo much more to it. I’m unsure I can untangle myself enough, to examine what went on in any detail. Jules and I shared our time at Nyah’s bedside. Overlapping in the day time but splitting the night time between us.
In that time we weren’t alone though. We had family nearby supporting us, friends who ducked in with food and coffee; we had a few hours off when caring aunties an uncle and a doting Granddad kept Nyah company while we caught up on much needed sleep. We also felt incredibly lucky to have support from afar and care packages that would turn up as if by magic.
Throughout our time there the staff, the staff were incredible. And we will be forever thankful for how truly amazing they are.
Once out of PICU and off the array of amazingly named drugs (with such names as Medazzle and Roc and Noradrenalin).
Nyah spent 5 days in the Intensive Observation Area, (IOA) in the heart ward. At Starship the heart ward is affectionately known by graduates as 23b. I had become familiar with 23b, four odd years ago, when my now 5 year old nephew experienced a similar but somewhat more complicated heart journey of his own. (You can read about it here).
I think what I reflect on most on our time in Auckland. Is that every journey through Starship and ward 23b is different and despite our familiarity with the physical layout of the hospital.
Our journey through from beginning to end had followed its own path, and as with every family, we can only follow our own.
Leaving Auckland behind
By the time I returned to Auckland three days later, Nyah had graduated to her own room and Jules was again able to sleep in the same room as her.
Nyah was by all intents and purposes, Wireless.
And what a joy to behold.
By that Friday we had negotiated a weekend release from 23b and stayed in Ronald McDonald House the three of us together in the same room again.
Over the weekend by way of distraction we had a small group of close friends keeping us company and sharing our first family walks out into the world.
On the Monday after a quick check-up and a bit of a wait, our consultant gave us the final ok! We were going home.
And that was all he wrote.
Well almost. Nyah had the final say in her own progress.
Nyah had an NG tube taped to her cheek her whole life, to aid with food supplements and there was a small feeling of disappointment at having to go home with it still in place, but we accepted that out of a lot of scenarios this wasn’t the worst.
But within only a matter of weeks Nyah had managed to pull the NG tube out enough times that we had run out of spares, and the only choice that remained, was for her to stay clean faced and chubby cheeked. Or just chubby cheeked and grinning!
Not the end, just the beginning…