Loss of sleep, lack of traction.

A lot can happen in a week…

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At the end of last week I was on the verge of writing, that as we came to the end of winter, we were relishing something wonderfully close to normal life, and how happy we were simply experiencing routine.

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Nyah has been making slow but steady progress against the markers that they assess for. And I had been making slow but steady progress in recovering from the marathon.

But Sunday, Sunday (the lesser known Neil Diamond Hit).

I went out for a run with my little, somewhat faster sister. And all of 10 metres into the run, I became all tangled up with my mates gangly dog, whom I was attempting to run with and who wanted instead, to chase a random distraction, on the other side of the road.

I attempted valiantly to hurdle the side of the dog, before tripping up entirely and coming to rest chin on kerb.

I hobbled the short distance home and was patched up by my always patient, ever loving wife.

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That was just the start of the week.

Nyah has struggled this week with a tummy bug that saw a couple of days of full nappies followed by a couple of days of chuckie-chunders.

Jules has worn the worst of it, (on a couple of occasions this week literally).

My Wife, This Lady.

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Photo credit: Helen Westerbeke 2016

Jules is my love and inspiration, a source of motivation. I look back on all the adventures we have had and always I’m thankful that she is by my side guiding me, or in front of me urging me along, or behind me giving me a push when needed.

When I started this chapter of the adventure, The 3 long runs (aka. “Where I go out of my way to hurt myself”). I pretty much inflicted it on her, and in her ever supporting and patient way, she allowed me this extravagance.

And at the same time as providing me the time and the space to do the necessary training, Jules has also been training towards her own goal to complete in the K1 challenge. (http://www.arcevents.co.nz/k2home/raceinfo/)

Just quietly SHE IS AH MAZING!!

And as this week draws to a close, while I can’t wait for things to return to normal, I’m glad we don’t ever seem to do routine for very long.

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This story that needs telling…

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.

Limbo Land

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.

montage 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.

Uncertain times

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”.
Starship 

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…

Prams Naps and Training with Bubs 

Saturday dawned bright and early as often does around our house.

Jules was doing a couple of community based sustainability courses. Some very deserved time amongst adults after a week of being the world’s most devoted mum.

So with the weather just awesome, and with Jules helping us get out the door even as she headed for her first course. Nyah and I headed out for a brisk walk with a dog who had been a bit neglected of late in favour of bad weather.

By the time we were halfway along the esplanade Nyah was fast asleep, something that she maintained until we got to about halfway point. Where at the Whareroa Stream we paused to throw a stick for the dog.

While we just hung out and enjoyed this rare moment of sun. A number of walkers passed us by, each caught up in their own thoughts, each greeted by my ever cheerfully social daughter, before they moved on with a fresh smile of their own.

Heading home Nyah was facing into the sun so I covered the pram with some shade cloth. The lack of view didn’t dampen her sunshiney mood, and I got to enjoy a constant baby babble narration all the way back to the house.

Sundays run  by myself was too quiet by far…

Training, tapering and (baby) time…

As I’m sitting here writing this, I’m ignoring a number of things;
The dishes, the mess in the lounge, the fact that we need more firewood brought in. The noise of the static trainer humming away in the spare room, as Jules rolls out some extra energy. But mostly I am trying to ignore the countdown timer on the sidebar of this blog which says I’ve got less than a week to go before the first leg of this treble.

Six days to go and I’m “tapering” that magic period before a big run when paranoia is the norm. Every muscle twitch is questioned as a possible strain. Most times this is the point when I’m quietly admitting to myself, that I haven’t really done as much training as I should have.

But this time, I have done enough, I think, which is a nice feeling. I am still fair s#@ting myself, however… I am confident that I can finish this first leg, it’s whether I can finish it, and still be in good enough condition to continue training towards the second event!

I’m enjoying this easing up on the training, it feels like someone has gifted me more time.

Something which I relish, because I’ve found that as the training has increased. I have become even  more focused on ensuring I still spend good quality time with Nyah.

I’m even more stoked than normal, to be able to be share time with her, as she had just passed a couple of her own milestones in the last week or so.

She has gotten almost to the point of sitting up unaided and her increased awareness and interactivity was marked by her first word (well her proud parents are taking it as a word). She really has provided a huge number of reasons to smile and laugh this week.

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Cross Training- Making the most of every opportunity.

I’ve found very quickly, to fit anything that looks like actual training into the normal everyday busyness of life, you have to get creative.

I’ve got into an almost routine bike ride to and from work, although in deference to the wettest days, I still get the bus sometimes.

I’ve substituted some longer weekend runs, with hours trying to tame the wilder parts of our garden.

But this weekend there has been an exciting new development! It was a very mild winters day so I extricated Nyah from her Mum’s arms, bundled her up in all kinds of layers into her pram, and we went for a nice long walk through our local wilderness area.

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We have been finding that Nyah is motion deactivated. So Nyah slept through most of the explore, (as you can see in the photo) but she did wake up in time for the last part along the beach headed home.

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I cant wait for more days like these.

 

 

The last year – or how we got to where we are.

In explaining how I got here I have to explain where we came from. So to keep it brief the last year or so reads a bit like this.

In 2013, Jules and I had moved back to New Plymouth to be near family. We had a number of other friends and family also with kids around town and felt it was the right place for us to focus on having a family. The job that I applied for was not “the career position”, but it did sound interesting, and Jules quickly found herself a role that she really enjoyed getting her teeth into.

The Mountain
The Mountain

In November 2014, the organisation I was working for announced that there was going to be an organisational realignment. This was about the time I started to explore other options.

New Job New Town, New House and other News
I got offered a job in Kapiti. The timing of the new job offer, when it came, couldn’t have been more like kismet.  At exactly the same time, Jules found out she was expecting.

Shifting town was and is something I swear I’ll never do again. I started my new job end of May 2015. After finishing up her job and selling our house in New Plymouth, Jules moved down with Cat, Dog and Goldfish into our new house at the end of August.