Thursday, 18 April 2013


Waiting, waiting, waiting.....

We had been at a pre-admission clinic several weeks earlier, getting weighed and measured, poked and prodded. Well, Jacinta was, not me.   It was here that I first really noticed Jacinta's mettle.
While the other baby across the hall screamed blue murder when he was having bloods taken, Jacinta told me she didn't like it, but barely made a fuss. Bit of a 'hey, that's not nice to do that to me!'.

At this appointment they told us what to expect in terms of the waiting list scenario. We'd get told a date. They'd ring us the evening before that date to let us know if we were still expected for that date. If so, we were to get Jacinta washed (to avoid infection) and fasted the morning of the operation and make our way in to be there at 7am (!).  We would then find out where we were on the list, if we were still on it, and wait as long as it took to be taken in - if we didn't get bumped off the list by an emergency and get sent home to do it all again tomorrow. (They run cardiac surgery 5 days a week at the Children's.) The nurse said that if we got in for surgery on the very first date we were given, we should buy a Tattslotto ticket. It never happens.

There seem to be two schools of thought on luck. One is that it is completely random, that who you are has nothing to do with it. Some people are just lucky and some are just unlucky. I don't buy that. There really seems to be more to it. The mere fact that some people get all the luck, as the unlucky somtimes say, indicates that there is something that attracts luck. What is it? Don't we all want to know the answer to that. I suspect it has something to do with your viewpoint. Feel free to let me know!

So on Tuesday afternoon I watched the phone intently, then accidentally left it on the kitchen bench when I went out for 30 minutes and missed their 5 calls! They rang Kane and spoke to him and got consent etc to do what they had to and he told me she was going in on Wednesday as planned. I was relieved, which it turned out was only a tiny bit of how I felt. Suddenly I was scared shitless. An intense burning sensation of irrational terror had suddenly appeared in my own universe. Crap.

So, I went an made a protein drink and took my vitamins and felt much better, like I wasn't going to faint at any moment. I still felt bad though. Bad for Jacinta and bad that I'd made a crap body for her and she was going to have to go through pain and unconsiousness to get it fixed up. Bad that I could only guess at how she'd be feeling and tell her it'd be fine in the end and she'd be feeling better at the end and we could get that bloody nasogastric tube out. Bad that she'd have a scar down her chest for the rest of her life. Bad that I wouldn't be able to hold her hand or cuddle her the whole time to help her through it.

And I went on feeling bad for the rest of the night and accordingly got very little sleep. Having to be up at 3am for her last feed then 5am to get her ready to go didn't help!

Still, I thought about it all the morning of the operation and came to a conclusion. I had to knock off feeling bad. I had absolutely no business going to pieces because that would make me uselses for Jacinta, possibly make her scared going into the operation and be another thing to feel bad about. So I thought about everything straight on. I looked each big bad thing square in the eyes and confronted it. I deliberately thought about how Jacinta would look with a massive scar on her chest and tubes coming out every which way.  I decided to be responsible for anything I may have done during my pregnancy which wasn't ideal since no-one knows how a heart defect happens and you therefore blame every error you have committed for causing it. And it all felt much better.

I stayed with Jacinta in the pre-op area until the very lovely anaesthetist came out and wheeled her in. There is a whole medical genre of cute baby things that you just don't get to see until you have an unwell child. Baby blood pressure cuffs are adorable and if they weren't so macabre, baby hospital gowns would be one of the sweetest things ever. I wanted to get a photo, but it really seemed a bit too inappropriate.

She wasn't very happy about being undressed to be weighed and I'm pretty sure she knew exactly what we were there for. She calmed down in my arms while we were waiting and then when I put her down, wrapped up, and gave her a kiss goodbye and wished her luck, she pulled out the bottom lip for a bit just like my others would have done. To her credit, she pulled it back in when I reassured her she'd be fine out the other side and off I went.

Then I went downstairs and sat in the toilets for quite a while not knowing what to do next. I knew I had a wait until at least lunchtime until they were finished the operation and then it would be another few hours until she was all done with anaesthesia etc and out into the ICU (intensive care).

Kane told me to go to the movies, so I went. I wound up walking a fair way, which is a good thing considering the chocolate habit I've developed since Easter and still need to get on top of.....

I caught the tram into the city and had a look to see what was on at the cinemas. Nothing much. I also needed to charge my phone. The one thing they ask of you is to keep your phone on and keep it charged and of course I'd had my phone up on my shelf all night - the only place I could be certain of hearing it in the middle of the night and not just talking myself into snoozing the alarm in my semi-concious rational brilliance. I'm very convincing when I'm mostly asleep. Hence my phone had about 20% left. Not enough to last all day - especially with facebook running. (And when is it not?)

I figured there'd be one of those things they have at the airport, where you can plug your phone in and charge it and pay a couple of dollars. Somewhere in the city, you'd think. I googled. Nup. If it's there, no-one's wanting us to know about it. I walked around a few places, no luck. Finally I called into a phone repair place who told me they had an under-the-counter phone charging arrangement. $5 and they put your phone on the charger under the counter. Nice. I left my phone there and went walking to find another cinema. Still nothing much on, and now I had a phone needing collection and I wasn't willing to leave it for the length of a movie in case they rang.

So I called into a text book shop and bought a copy of Gray's Anatomy, found a drinkable cup of tea and sat reading the heart section, which made me feel much better about the operation. Made it less mysterious. Then walked some more and got some Nando's chips. I collected my phone and decided to head back in the direction of the hospital. I caught an Upfield train which takes you closest to the hospital. Once on it, I decided I wasn't in any hurry and caught it all the way to Upfield (in the way of my ancestors) to see what was there. I saw a couple of armchairs sitting by the railway line. I caught it back to Flemington and got back to the hospital.

Then I sat down to start writing the previous blog, after finding that the Parents' Resource and Respite centre will charge your phone for you....

Writing away at the computer I watched the time. It was now after lunch and it was the kind of time I would be expecting to hear from the surgeon. My phone rang and it was the Cardiologist. He'd been called into the operation midway because things had started going awry and they needed to find why. He did an ultrasound (they do it down the trachea during surgery) which showed a sneaky blood vessel pumping blood from the aorta to the lungs. It was hiding the whole time under the heart and none of the ultrasounds or chest x-rays or echocardiograms had managed to detect it. They had to lift the heart up and out a little bit to find it!

Anyway, he said she was fine, but that they'd found this and they had to go back in to fix it  so it would be another couple of hours. More time to kill........

I went back to the surgery reception to settle in and wait. And wait. And wait. About 5.30 I got a call from the surgeon who told me that the surgery was complicated and difficult and he'd done the best he could to repair the leaky valve but that it was still leaking a bit but he was worried about having her on heart bypass any longer so left it at that.

He said she'd be another hour or so before she'd be ready to go to ICU. So that was that. Then the waiting began.  About 90 minutes later I saw the anaesthetist walking by the waiting area. I thought it couldn't be much longer. 45 minutes after that I figured it could. About 7.15 I wondered if I was waiting in the right area since I had been told I could wait here or in the Rosella ward waiting area. I wandered over there and asked. They led me back to where I had been waiting.
Someone came out from theatre to let me know that she wasn't out yet.

Over the last 5 hours I'd seen people coming in then being called by their child's name and taken to see them. The room had gradually emptied and I'd been able to turn the godawful programs off and stick Ellen on instead, then repeats of Friends, then Mr & Mrs Murder - which I think has promise. I do like Sean Micallef...

And still I was antsy like a small child waiting. I got up and tidied the parents' lounge. Then I went into the main Surgery reception and tidied it up. Picked up the toys, straightened the chairs, put the scraps of paper and dirty tissues in the bin, tidied the books and found the stickytape to fix the book which had been ripped apart. I spent 5 years closing up reception at a busy GP clinic. Old habits die hard. (If there'd been an EFTPOS machine to balance, and histories to get out for tomorrow I'd have done that too!)

As time went on, I had to start thinking about why it might be taking so long. What could have happened? As it went on longer the chance that something had taken a turn for the worse got higher.
I thought I'd best be prepared for bad news. Even super bad news. This wasn't fingernail surgery we were dealing with and we weren't living in la la land. (Although I'd like to go there for a visit, it sounds great.)

At 8.30 when Kane was threatening to come in an hour and take me home I figured I should chase her up, so I rang the after after hours number on the wall. They said, "that's weird, I'll come and get you".
This nurse took me round to the right ward and told me that she'd been there since 7.30 and had been ready for me for a little while (they don't let you in as soon as they arrive because there's a lot of setup to do) and they were just about to ring me since I hadn't been bashing the door down demanding to see my child. Not really my style.

I went in and there was my little girl, looking pretty good actually. She did look a little bit like she'd been in a fight. Gummy eyes with dark circles and a fair few bloody bits, tubes everywhere. But she looked ok. (You should have seen the other guy...) The nurse looking after her said that he was surprised. On paper she looked like she should be needing loads of support. He had been poised to spring into action and do some amazing life-saving stuff. Instead she'd mosyed on in, parked herself there and got busy healing herself. He said she was rock solid, not wavering at all.

The doctor came round, had a look, checked that everything was going well, said 'amazing', 'don't change anything', 'keep it up' (to Jacinta) and left.

And she's kept it up for nearly 48 hours. The night doctor came again last night and said , 'amazing' again. She got the day off for being so good. No drastic changes.

When Jacinta was born, she was sitting there in ICU just getting better. Never in any grave danger, in the middle of tiny 24 week-old babies who would mew in their cots, clinging to life, with their parents constantly hovering on the edge of losing them. I think back to the day when I was in the Family Lounge eating my lunch and there was a young man being shown in. From the tone of the conversation I heard heading my way, I could tell that he'd just lost a baby daughter and the other one was looking shaky. Their mother was still 100s of kms away in the town where she'd delivered them, about to follow them down. She hadn't had a chance to hold her daughter at all.

Listening to this going on as I ate my lunch and wished I could disintegrate into nothingness right there at the table, I just felt so lucky. Here I'd had my life turned upside down, or so I thought, and there this young man, no more than 25 at the most, was dealing with the death of his child and possibly the death of another. The whole situation broke my heart and I felt like an impostor. How dare I have a child in intensive care who was just getting better, in no danger? I never found out what happened to the other baby. She'd be full term now and going home. I hope she did.

Yesterday I saw a person walk past me in the hallway. I knew her face. It was a girl from my class at school - which we left 20 years ago....!

She has a son in Intensive care as well. Again, my 14 week-old daughter with her long, complicated heart bypass operation pales in comparison to her 6 week-old son who has had 6 operations in the last week and was on the ECMO (is that how you spell it?) machine, which is so specialised that just about anywhere else in Australia, they fly the team out to put the child on the machine and bring them back to the Children's when the specially trained nurses can take care of them. He got as close to death as you can get without dying. Luckily, he's doing fine now.

There was a bunch of parents sitting around the parents' lounge last night thanking their lucky stars that they live in Melbourne and we have the best Cardiac care in the country right here. One of them would have had to go to Boston, USA if we didn't have the surgeons we have here. Lucky we live where we do. Her surgery didn't exist 5 years ago. Lucky we live when we do.

And my daughter keeps on keeping on, kicking all sorts of goals, which we can attribute to the supplements, to the NAET, to the assists, to the amazingly competent surgeons, to her own mettle, to the nurses, to the vibe in the room.

Once again, we're the lucky ones.

P.S. Once I get out of hospital, I can upload some photos!!

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