[Content note: this post discusses childhood illness, medical treatment, and surgery.]

When my daughter was born, I started keeping a diary for her. This came to feel particularly important when she was diagnosed with a heart condition, and I knew that I’d never be able to remember every detail I wanted to of the things we went through – things I knew I’d want to talk to her about when she got older.

When your child is a heart baby, you become part of the Heart Kids family, which has meetups, support resources and a Facebook group. A while ago, a parent made a post in the group asking about people’s experiences of surgery for the particular condition our child has. I made a few comments, but I thought at the time that I had all this written down somewhere – maybe it would help another parent to share it.

It’s the third anniversary of that surgery now, so here is a pair of posts, drawn from the diary I keep for my daughter, documenting how that all went. The dates relate to the diary entries, not when things actually happened.

• Prequel: my post on the first anniversary of her heart surgery
• Part 1: the lead-up (you are here)
• Part 2: the surgery day

Wednesday, 2 June 2021

The past few days have been a bit of a blur, but you won’t remember them at all, thankfully – so I will do my best to sum up.

On Friday we got the call from Starship – they wanted us to fly up to Auckland on Sunday to do your surgery Tuesday. It was simultaneously scary and a huge relief. Finally we had a timeline, even if it was one that meant rescheduling things, cancelling an MC gig and threatening your Granny’s holiday to Hanmer Springs.

Then the first hiccup: we didn’t hear what flights we’d been booked on – that was to be handled by CCDHB, not ADHB, and when you’re older we’ll explain what DHBs were and why it’s ridiculous to decentralize your health system in a country of 5 million.

[Ed – this aged well]

So Saturday was spent planning, and packing, and ringing people at Wellington Hospital whose job it definitely wasn’t, trying to sort that out. Which we did at about 7pm Saturday.

Sunday morning was a write-off. When the time came we drove to Granny’s to pick her up, get to the airport and her take the car back to her place. She had such a great time pushing you around in circles in your stroller while mama and papa figured out boarding passes (the flight was so full we had to go right down the back to be seated together) and luggage tags (there’s a lot of stuff to take when you’re flying with a baby!)

And then she carried you all the way through the terminal and rocked you back and forth while your parents had a drink and one last quiet sit down.

Then your papa got to be the star, a tall beardy bloke carrying his tiny wee daughter through the security screening, to the smiles and admiration of every woman over 40 we encountered.

Your first flight was a dream. We’d planned ahead and made sure to pop a pacifier in your mouth before take-off, and you sucked on it the whole way, with just a few little scowls during ascent and descent. There definitely wasn’t elbow room to feed you and I have no idea how we would have changed your nappy – so it was a good thing neither of those things came up!

We arrived at our accommodation at Ronald McDonald House. The room was small (we could barely get the stroller inside, much less turn it around) and the facilities bland (first impression), but we figured we’d only have you there for a night or two.

We had dinner with friends who lived in Ponsonby and then settled in for our first night in Auckland.

Monday was a very long day.

Friday, 4 June 2021

[And then I didn’t write again until the end of the week.]

As of Monday we were still expecting your surgery to happen on Tuesday, so went into the ward for pre-admission checks. Starship Hospital is a nightmare to navigate for newcomers, much worse than Wellington Hospital [this is pre-the construction of Wellington Children’s Hospital]. We were back and forth all afternoon getting blood tests (twice because of muddled paperwork), a chest X-ray (your papa had to hold you in an uncomfortable position, and you cried), an EKG and an echocardiogram (you were very good even though it seemed to take forever.)

Your bed was made up – a little nest of towels wrapped in a sheet in the middle of a giant cot, and we waited for hours to get the informed consent briefing from the surgeon and anaesthetist.

We were in a big shared room, so we heard the consent talk being given to another family whose child was older – enough that the anaesthetist had to explain everything twice, once for the parents (the technical version) and once for the patient (“a magical sleep”). We honestly felt a little relieved that you’re so little, because you don’t understand and you can’t worry, even though you’re probably picking up some of our anxiety.

The surgeon came and was very straightforward in describing the procedure and the risks, though reassuring us they are small – especially for a baby as big and healthy as you – and that baby’s brains, especially, are pretty elastic. But these conversations are always a bit awkward – if you’re already at this point, you’re not realistically going to refuse consent.

The day ended in disappointment, first being told your surgery would be on Wednesday; then, about twenty minutes later, it became Thursday, but requiring you to stay in the ward Wednesday night.

At this point we determined we absolutely could not stay at Ronald McDonald House for the duration – or even one more night with you in that bassinet squeezed next to the bed, and changing late-night nappies on the floor. We were incredibly lucky – your godfather and his flatmate offered us accommodation, and even though I felt really really (pointlessly!) awkward about it, we accepted.

We thought we’d planned for everything, but we had expected to be staying in properly equipped facilities, so our friends whipped around their relatives and furnished us with bassinet, sheets, and everything else we needed.

We played tourist on Tuesday.

On Wednesday we returned to the hospital. You were checked in again and bathed and wiped down with anti-bacterial cloths, which you hated (I think they might feel very cold, but we didn’t try them ourselves.) This time the child in the next bed over was extremely upset, and we felt so sorry for them and their family, and it added to our own stress.

Your papa stayed the night with you, sleeping on a narrow, uncomfortable (especially for someone of his height) pull-down bed. I don’t think either of you slept much, if at all. And when I arrived at 6:30am the next morning, things were already looking bad. As of the nurse check in around 5am, they didn’t know if surgery would go ahead.

It didn’t.

The reason we were given was insufficient nursing staff in PICU (the Paediatric Intensive Care Unit) – which messes up the entire treatment pipeline.

[If you ever see Starship fundraising for “more beds”, often what this means is not the physical bed, but being able to pay the staff to put a patient into one of those beds.]

So we went away again – though it wasn’t quite that simple. First they said, come back in at 4pm tomorrow – and potentially any number of days after that – to ensure you were “still checked in”. We declared this was ridiculous. Then it became, you don’t have to come in, but do the bath-and-wipes routine again and be ready to come in at 6:30am if we call you – and keep you at nil by mouth – no breast milk – from 6am. [This meant waking up at 5am to try to get you to have something; and of course, you refused to be hungry.]

They didn’t call until later the next morning, to confirm the first surgery of the day was taking longer, so you were postponed again, with a possible glimmer of hope that extra staff might be found to come on over the weekend.

We made the best of it again. Touristing, a big dinner with the Auckland whānau who hadn’t had the chance to meet you yet. Everyone agreed you are very cute.

On the way home from dinner, a predictable phone call from the surgeon: no surgery over the long weeked, “unless your condition deteroriated”, a phrase I really didn’t need to hear. I still wonder if this was a bit of a hint to the white, middle-class parents that if enough of a fuss were made, by white, middle-class parents, resources could be found. I don’t like to think that that’s true.

I had a big cry, but at least I also had some certainty for a few days, instead of sitting by the phone every morning hoping for a terrible call.

[Here ends part one. Read part two here.]

Photo by Christopher Beloch on Unsplash