Heart day

Heart day

A square piece of paper with a heart drawn on it, attached by a peg to string hung across a plain wall

Content note: discussion of hospital, medical issues, baby illness

Today is the first anniversary of baby’s heart surgery.

It’s a very weird sentence to type. It’s probably a revelation to a lot of people reading this – even the ones who know me offline. I ran into someone just over the weekend, where I was MCing a pole competition, who had no idea that the reason I’d missed the same show a year ago was that we were all flown, with about 48 hours’ notice, to Auckland for our eight-week-old baby to have open heart surgery.

The technical term is ventricular septal defect. A hole in the heart. Big, but not so big they had to fix it immediately; we were sent home, under close observation by the absolutely goddamn phenomenal people at the Wellington Hospital NICU, with instructions to get some weight on that baby. If we could get her to five kilos, before any of the side effects of a heart pumping blood in the wrong direction became too serious, it would make things much, much easier for everyone involved. But outside those two metrics – one simple vital statistic and one terrifyingly vague, “her breathing will get steadily worse, get in the car and call us if she turns blue” fail condition – there was no timeline. No certainty.

It was the longest eight weeks of our life. And then one day we finally got the tick to take her down to the operating theatre, and hand her over to the anaethetists, and I sobbed my heart out for a good half hour. You can have all the reassurance in the world that it’s a very common defect, a regular procedure, an incredibly safe operation, but your child is in a room far away being put on bypass. For a few hours, her little heart isn’t going to beat, while someone tries to fix it.

And now, it’s a year later.

If that felt like a swerve … it’s a swerve.

I’ll have a lot more to write later – especially once I find where I kept my darn notes, because unsurprisingly, those two or three weeks are a bit of a blur – but for today I’m holding on to the happy ever after we got. She’s so happy and bouncy and independent and strong that no one who doesn’t know can even believe what she went through, when she was so small. And so many other things happened that year – her birth! My gall bladder surgery! Multiple job changes! Buying a new house! – that I frequently forget to even include it on the list. You get some funny looks when you’re talking about this beautiful healthy almost irritatingly energetic child and the phrase “after the surgery” just casually drops out of your mouth.

It’s not that I feel nothing – I’ve had a good long cry this evening (the day before), snuggling her to sleep, vividly remembering so many terrifying, anxious moments, how difficult it was to hold everything together, how much we can never repay the many friends and whānau who were so completely generous with their time and resources and homes.

But it’s nice to start with the happy ever after sometimes.

Photo by Debby Hudson on Unsplash

The quiet and the dark

The quiet and the dark

A dark bedroom with a bedside light on

The baby had an unusual 3am wake-up last night – and I know I’m very lucky that that’s unusual for her, but it doesn’t make the shattered sleep patterns any easier to deal with – and ended up lying back in bed, around 4am (after feed and burp and change and pump) with my two favourite people on either side of me making their usual snuffly and/or snorey noises, reflecting on a mantra that got me through those earliest weeks at home when it felt like I’d never sleep again.

It’s enough to just lie here, in the quiet and the dark.

We spent the first week of baby’s life in hospital, and I was absolutely sleep deprived – she was on a three-hourly feeding-and-top-up cycle for jaundice and I was trying to learn to latch her and still knocked flat by the C-section and in a strange room with strange noises and lights and midwives appearing what felt like every five minutes to take my blood pressure. In a way, there was just so much going on that I didn’t notice how tired I was. I’d gone through “tired” and out the other side. But you can’t keep that up for long.

The second week, once we were home and lost the massive omnipresent support network the hospital offers, that was when things, specifically my and J’s brains, started to break.

There is a piece of advice that gets passed around pregnant people: sleep when the baby sleeps (and its corollary, clean the house when the baby cleans the house). It’s a lovely theory, and on the few occasions I’ve managed to do it, it’s incredibly healing. I think that’s why I’ve shared it myself – it does help, when it works.

But the fact is, some chores still need to be done, if you want to have a bottle to feed the baby with (or a mug for your own precious twilight cuppa) or cloths to wipe her butt. Sleep gets pushed down the priority list pretty easily, and when you finally get to it, on a timer that could go off any minute, it feels impossible. As though you’ll never sleep again and the only possible outcome is putting your brain in a robot body.

Like a lot of obligations, it creates a cycle of anxiety. You know you need to sleep in order to function and if you don’t sleep you’ll feel worse so you need to sleep and all the time you’re spending worrying about not sleeping is time you are not spending sleeping which you know you need in order to function … etc etc etc.

On top of that, you’ve just gone through a huge series of changes. Again, you don’t notice so much in hospital because there’s so much else going on. But back home, in your own bed, without the distractions of beeping machines and doors opening and closing in the corridor outside, you try to revert to old patterns. Except those were the patterns you had when you were pregnant. You’re not pregnant any more and you’ve barely had the opportunity to realise that. You don’t need to do those pre-sleep Kegels any more – or at least, not for the same reason. Which might mean – it did for me – having a little cry because you missed out on the birth experience you were hoping for. And then you wonder if your knees were always this hard, before those months spent wedging a pillow between them to alleviate your hip pain. And hang on, which side do you even like to sleep on when there isn’t stabby sciatic pain making that decision for you?

Finally, it’s the wee hours of the morning, it’s dark and you’re alone and all the worst thoughts your brain can conceive of start bubbling to the surface. It becomes very easy to believe that you can’t do this, and there’s no one around to contradict and affirm you. I mean, you can’t even get to sleep in your allotted sleep hour, how can you possibly raise a baby?

And that’s where the mantra comes in.

It’s enough to just lie here, in the quiet and the dark.

It’s not sleep, but it’s still rest. It’s a moment of stillness. It’s not getting any of the “real” things on your list ticked off, but it’s what you need to get them done tomorrow. And when those intrusive awful thoughts came crowding in, for me, it was something concrete and simple to focus all my attention on. Sometimes, that would be enough to get me off to sleep. And if it didn’t – if the baby had a nappy explosion or an offensively loud truck drove past the house or next door were having a party (on a TUESDAY? You MONSTERS) – it was the best thing I could do, in that moment. That was the job, even if it was “just” lying in bed staring at the ceiling.

It didn’t make everything magically perfect and easy, but I am absolutely certain it would’ve been a lot worse if I’d let the anxiety goblins feast on my delicious brains instead.

There were mantras for other times, too. Maybe I’ll write about them next time.

Photo by Di_An_h on Unsplash