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

Read Part One here.

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
• Part 2: the surgery day (you are here)

Tuesday, 8 June 2021

You made it through surgery.

We were all so tired, and got so little sleep, and had such an early start on top of the stress of once again putting you in a shower and wiping you down with those bloody antiseptic cloths – you screamed your lungs out for that – and we got to hospital and were told we were on hold, again, due to a lack of sufficient PICU staff, again.

We were not in a great headspace. But the staff were legends. They got it. I think some major efforts were made to get us in. And we did, although the other child who had been told to come in that morning was sent home. Their family wished us luck.

There were more conversations with the anaesthetist, and checking the consent forms, and wiping you down again (you didn’t hate it as much this time). We were allowed to feed you some pink bubblegum-flavoured liquid to settle your stomach because you couldn’t have milk so close to the operation.

And finally – a week after our first surgery date – we went down to pre-op, with our lovely nurse and an assistant wheeling your empty hospital crib while your papa and I followed behind with you wrapped in hospital blankets in my arms. I was already crying a lot.

Another nurse, and more forms, answering a lot of the same questions all over again (pretty important questions, in fairness). And then a lovely anaethetist with big warm hands and a reassuring Northern English accent took you away. You woke up for just a moment as they left. Your papa and I had a bit of a breakdown. They let us sit there for a bit.

[Before all this, Parent to Parent had arranged a phone call from a mum who had been through the same surgery with her daughter, and her strongest piece of advice was: get out of the hospital. Don’t sit there worrying. They will call you. We listened.]

We went and got a proper breakfast in Ponsonby, did some shopping, and circled back to the museum, which is very handy to the hospital.

Then, sooner than I’d expected, we got the call that you were off bypass. That didn’t mean surgery was over, but at least your little heart and lungs were back up and running. An hour later, the surgeon called to say it was all done; “straightforward”, even. There’s still a 1mm gap, but it should close on its own and wasn’t worth putting you back on bypass for. We’ll have to keep an eye on it.

It wasn’t actually necessary to head back right away, but all of us – Granny was there too – were thoroughly out of spoons. We sat on the ward, and finally got called to PICU.

A few people, including the nurse who called, really strongly emphasised that it would be a shock to see you: pale, groggy, hooked up to machines with drains and sensors, tubes everywhere. It was somehow better and worse than I expected at the same time. My imagination was probably worse, but the reality had weight to it.

[Every feeling was mixed at that time. We were so happy everything had gone well and so sad to see her in that state, and so guilty for “doing” this to her even though there was no real choice in it. Sometimes it still sucks to think about it even though it was 100% the best thing, the only thing to do.]

Wednesday, 9 June 2021

You’re doing so well. This morning they took out your breathing tube. Your little heart is beating on its own, with a little pharmaceutical help. You were still drowsy, but more in control of yourself.

By the afternoon they were ready to move you back to the ward.

The nurses’ union were taking strike action today, so your special nurse in the PICU was wearing a sticker reading “Life Preserving Services”. I’ve always been a unionist, but I’ve never felt more strongly that they deserve every penny they’re asking for and more.

[I’ll leave it there for now. I might share some more about the rest of her recovery, but the worst part for us was definitely the lead up to surgery. As of now, it is three years ago, and a lot of it is a complete blur: in typing this up I remembered a lot of things I hadn’t thought about for ages. She is happy, and strong, and everyone who meets her is shocked to hear that she’s a heart baby. We won’t have another hospital check-up until she’s five.]

Photo by Pin Adventure Map on Unsplash