Friday, January 20, 2006

Matters of the Heart (long post alert)

In the last post I nonchalantly mentioned my son's second heart op. I'm quite good at being nonchalant about his ops, because if I don't stay cool I get all emotional. But I was asked about it in the comments of the last post, and I feel like writing something tonight while BB is at a religious PhD party (don't ask), so I'll indulge myself. Apologies to anyone who has heard this story before.

Bumblebee was born in 1997, only a week early, but extremely skinny and yellow. He'd tied true knots in his umbilical cord and was so hungry he’d been using his own fat to stay alive. The hospital let him have a night with me to start him breastfeeding and then whisked him away to the special needs ward for a day or so. Apparently this is very routine and I was lucky to get that first night. We were sent home within a week, and that, as a solo mum, was very scary.

Anyhoo, for the first 6 weeks of his life I was shunted in and out of breastfeeding clinics because I had a baby that wouldn't thrive, and the finger was pointed firmly at me for not feeding properly. Being a first-time mother I had no defences. Babies don't come with manuals, and I didn't have any friends who had had babies (except one blessed friend who would come over and prop his chin up expertly). I felt cowed, and insecure, and a bad mother. My own mother was wonderful, and I think if she hadn't stayed close by for that first period of time, I would have had severe post-natal depression. Bumblebee was long, thin and very sleepy. He just couldn't stay awake to feed, and my breasts were killing me from all the milk building up. The nurses tried everything, from expressing to tubes attached next to my nipple, to bottles. I didn't want bottles, I wanted to feed him myself. They actually made me feel guilty for persisting! Sheesh.

Thankfully, because of his problems at birth, he was given a 6-week check-up by a paediatrician rather than a district nurse. He did a series of tests and discovered that Bumblebee had a heart murmur, and recommended we see a cardiatric paediatrician in Sydney, since there are none resident in Canberra. He got me an appointment as fast as he could, but none of us realised quite how serious the situation was. All I could think was 'yah boo sucks' to the Mothercare ladies – it wasn't me, it was him! A bit petty, really, but there you go.

If there had been the right facilities in Canberra, B would have been diagnosed properly, and airlifted immediately to Westmead in Sydney. As it was, we drove up the next week, and B seemed to me to be having an extra-sleepy day. He didn't make a peep the whole way. Good baby!

But! as soon as the specialist clapped eyes on him, it was all systems go. My tiny baby (about 9 weeks old now) was about to go into cardiac arrest. He was whisked away, and I was given a quick but serious chat by the specialist about Observations and Investigations and Surgery and Transplants. My mind reeled. I had only planned a day-trip, I didn't even have a change of clothes! My baby was dying! Hell!

They kept him in the cardio ward for a week, with wonderful nurses hovering, pretending that they were concerned for me, but in reality trying not to show me that they were waiting to see if B would cark it before his scheduled operation. They were trying to strengthen him a bit before doing all the tests to see what was actually wrong. I slept in a fold-out chair next to his bed, only in snatches.

Lots of nice doctors talking to me in clumps halfway through the week make my head spin. From what they could see from the outside he had multiple congential heart defects, including cor triatiatum, which means three heart chambers. There was a hole big enough to make another chamber, a blockage somewhere else, and I think a vein was upside-down. Turns out all the talk about transplants was just gumph to help me not panic on the first day, and a transplant would be impossible on someone still in 0000 size clothing. So they had to open him up to investigate, not sure what they would do, 2 in 3 chance he would die on the operating table, yada yada yada...

I chose to interpret that as he had a 1 in 3 chance of making it, and focused all my energy on really noticing how beautiful my son was. I borrowed a video camera from a friend, and documented him before they took him away. I remember the morning of his operation, I discovered how to use the fade button. I shot a small film of him smiling at the fishtank in the foyer, faded out, and then thought
'Oh shit. If he dies, I just faded out my last view of him on film. Was that an omen? Will that be the final tear-jerker? oh shit.'

Poor little Bumblebee spent 5 hours under the knife. I was given a pager and told to go out for a while. My parents and I wandered the streets of Parramatta listlessly, and went to the movies to try and distract ourselves. The only thing available was Jim Carrey in Liar Liar. I can't even bear looking at the video cover in shops now. It was such crap! And the pager keep giving out mournful little bleeps because they hadn’t bothered recharging the batteries and it was dying.

We dashed back to the hospital, just in time to greet the surgeon. He rushed up to me, a huge exhausted grin all over his face. Success! He was jubilant. Apparently they had no frigging idea what they were going to do once they'd opened him up, so they made it up as they went along, and they customised his heart. Closed one bit up, used a bit of his own flesh to patch another bit, carved a little bit of this. The surgeon's face was all shiny and proud. I was so grateful I kissed him, and he turned beetroot red! I was so happy, he was so happy, my parents were nearly fainting in relief. I still write him letters.

Small children are amazing. Because they are growing all the time, their cells are constantly multiplying, and they heal very fast. (Adults heal a lot slower, because we fear pain, and hold ourselves back from movement. Middle-age men take months to achieve what a baby manages in a week.) Bumblebee was in intensive care for about 4 days, then in the cardio ward for about 3 days, and then they sent him home with me. He was a completely different baby. He was hungry for the first time in his life. He stayed hungry. He's still hungry. And he's still thin! He had so much energy. And he needed lots of attention.

While I was away my father and friends had moved me into a new house, the house I'm sitting in writing this. All my things were arranged beautifully ( it took me over 6 months to find everything). I had stayed strong and positive throughout the whole experience, but the first night alone in a new, familiar yet unfamiliar house with my new, familiar yet unfamiliar changeling was just too much. I sat on the lounge-room floor and cried. I cried for hours. I kept weeping sporadically for weeks, then I pulled myself together again. Bumblebee just got stronger and stronger. They said he would be a slow developer, but he was running by 11 months and no-one's discovered an off-switch yet.

When he was 3 and a half, his biannual heart check-up discovered another glitch. This one, surprisingly, was nothing to do with the first. There was a growth in one of his valves, a ring which would thicken over time like orange peel. Most kids are discovered with it when the membrane thickens so much that it impedes blood flow and they look sick; Bumblebee was lucky that he had a specialist check him regularly and carefully. So another operation was scheduled for just after his 4th birthday.

This time I was prepared. but this time B was a lot older, and more cognizant. I had to read him books, talk about it, prepare special toys, and also prepare his Dad, who missed the first operation because we were at war. This time he wanted, and fair enough too, to be involved.

My auntie (a Chinese medicine doctor) offered us a gift of a Qigong treatment with a special practitioner in Sydney. This was to strengthen B's physical resources and give him enough energised Chi to help him through the operation. whilst not quite sure what to think of it, I said yes with an open mind, and we visited the fellow on the day we were due to go to the hospital.

Qigong (pronounced Chi-Goong) is all about spiritual energy, and the Qigong master (Z) reassured me that it was a quick, simple procedure, which consisted of B lying still and he would do a laying on of hands. A bit like raiki, I supposed. A few minutes into it, B was saying 'ow', 'ow', OW OW! HE'S ZAPPING ME! Apparently Z's touch was full of electricity! B got up and started wandering around the house and garden. Z quite calmly followed him around, placing his hands on B's head periodically. B was yell 'OW!' and take a swipe at him. It was quite hilarious. After about an hour we all said goodbye and B and I drove to the hospital. I don't know how much the Qigong worked, but he was full of beans in the cardio ward, dashing up and down the corridor and being very hard to settle. So much energy! Eventually I got him to lie in the bed while I read him Dahl's The BFG. We were both so nervous about the next day that we read the whole book from start to finish, and by the end I think all the kids and parents in the ward were quietly listening too.

Even though the odds were better this time, and I was familiar with the environment, it was still really hard to say goodbye. This time I let his dad carry him in the to anaesthetist, and I let his dad sit up all night with him in intensive care, because even though I was aching to be with B, I knew his dad wanted to make up for not being there the last time, and it was only fair to let him play his part.

(That sounds like all was happy, but in reality, his dad had said he would be there the whole week, and so I told my parents to go after the first few days. Straight after they left he decided the crisis was over and he could go home too, and so I was left at the hospital by myself for a few days, with no-one to tag team when I wanted a loo break and B was being clingy. Bloody Albatross. Deep breath.)

Again, being a cool kid, and maybe with the help of the Qigong, B physically recovered really fast. Here's proof:
And by day 7 he was sent home.

Unfortunately, when kids are old enough to be conscious of pain and retain fear, the mental healing takes a bit longer. To stop him from pulling out his drips and other cords, the nurses had tied his arms down to the bed. With just cause, because as soon as they released him he ripped his drip out. But he felt so angry and fearful of it happening again that when he got home he would wake in the night screaming, for the next 6 months at least, and each time was totally different. I could hug him to sleep one time, and the next he would hate to be touched. It was tough. But we got through it, with a lot of talking, and some lightsabre therapy. You see, while he was healing I introduced him to Star Wars. It was a life line to power and strength and dignity that he is yet to let go of. And I have no intention of dissuading him. He is still a very scared boy. He has a lot of rage in him. He would make a good Sith. Lightsabre battles are very cathartic!

There is no guarantee that he will never need further heart surgery. But he's been given the all-clear for 5 years now, and he's as healthy and normal as the next kid, probably more so because he carries no spare fat. He's checked twice a year, and that keeps my mind at ease. I have taught him to be proud of his dramatic scar, because he wouldn't be here without it. I encourage him to make up dashing stories about it.

The thing I learned from the experience of nearly losing my child a couple of times is to love him hard, but to be prepared to let him go at any time. I'm a conscious mix of fun mum and tough mum, because it would be so easy to smother him in a blanket of fear and concern. If I lost him tomorrow, I'd be in pieces, but I'd also be halfway to acceptance. Every day is a gift. And I appreciate it.

1 comment:

genevieve said...

Creative heart surgery, hey? gee, what else have you ducks been through?
I must be the only dill who didn't know this, or know about lightsabre therapy either. (I also didn't know nurses tied little kids' arms down. Hmmm. VERY tough nurse.)
I think the force is with you both.
The fun mum/tough mum is an interesting gig, isn't it. Sometimes I'm glad I have acquired that ability to turn off, otherwise my kids would disappear under fear and so would I.

The worst time I've ever had with my daughter was letting her run off to Byron Bay for schoolies - I thought she would have a seizure up there while everyone was drunk, and I would never see her again. I have a very vivid memory of M. in a hospital bed at four, she has dark hair like me and is very fairskinned, just a little fairy girl fast asleep in a big white bed. Lou is in all this somewhere, isn't she?(still haven't seen that bit though.)