I am changing the pace a bit today - so if you are hoping for something about crazy-looking wildlife click here, or if photos of some old stuff rocks your boat then click here. If you are ready for a serious immersion into the murky depths of our introduction to parenthood (where we found ourselves on the rocky cross-country track, as opposed to the smooth bitumen highway we anticipated) then put the kettle on and settle in.
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This is the story of our firstborn son. I don’t share it to elicit any particular emotion from you, my brave reader. Those who have were with me through it should go and think happy thoughts elsewhere - no need to go through it again. If you are sticking with me, though I thank you for taking time from your day to share it. You will know someone who needs to read it one day. You'll see why at the end of this tale.
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I post it here for him. Our King of Hearts. So one day, down the track, he understands his beginning, and how very special and amazing he is in our lives. And so he understands why his Mum smothers him from time to time with increasingly unwanted kisses.
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I was a 35 year-old "career chick" who had never really focused on having children. I was so busy living. I was a photojournalist for a newspaper living in a seaside metropolis, I went to the gym, went to clubs and lived large. I loved my very self-centred little world. And then I met my SSB. And after a while it seemed natural, to think about it. Having Children. And then we Got Serious. And then Married. And suddenly having a baby was a very real decision – and together we chose to bring a child into our lives.
I was a 35 year-old "career chick" who had never really focused on having children. I was so busy living. I was a photojournalist for a newspaper living in a seaside metropolis, I went to the gym, went to clubs and lived large. I loved my very self-centred little world. And then I met my SSB. And after a while it seemed natural, to think about it. Having Children. And then we Got Serious. And then Married. And suddenly having a baby was a very real decision – and together we chose to bring a child into our lives.
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It was clear and very much planned. I took vitamins, we had scans, and then tests and been assured and reassured that all was good with our little miracle. I read books (like Up the Duff which was fabulous and informative and made motherhood all seem like a big laugh) and websites on childbirth and newborns. I thought I was pretty well informed about the path that lay ahead of us.
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On April 16, 2002, he was born happy and (apparently) healthy. SSB and I were delighted at his smooth arrival, we marveled at his perfect little hands with their inordinately long fingers, and ruddy little face. We wondered if his gingery hair would go blond or dark. We barely thought about the few hours humidcrib care he needed after his birth. Too soon we were home and hanging on for the rollercoaster of expected challenges that parenthood brings.
On April 16, 2002, he was born happy and (apparently) healthy. SSB and I were delighted at his smooth arrival, we marveled at his perfect little hands with their inordinately long fingers, and ruddy little face. We wondered if his gingery hair would go blond or dark. We barely thought about the few hours humidcrib care he needed after his birth. Too soon we were home and hanging on for the rollercoaster of expected challenges that parenthood brings.
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It was only a few weeks after our nine-pound bouncing babe arrived that things started to go awry. We noticed how much he sweated, especially when feeding. How his suckle seemed to fade more quickly during increasingly frequent feeds. How he simply would not settle for any real length of time. In a bid to improve my mothering skills (which I assumed must be suspect) I visited the local community health centre for a day stay. Nurses there were wonderful but even they battled to settle my unhappy bub, and soon assured me the problem was not my skills. Reflux (which Dash had previously been diagnosed with) was assumed to be the culprit and we were directed to consult our paediatrician for better medications.
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I usually phoned but for some reason I decided to make this visit in person. Usually a cheeky, jovial sort, Dr Bruce was more serious this visit, and made notes of some symptoms - especially Dash's strange sharp breathing. We were bundled off to have a chest x-ray ("as a precaution") and then went on home, mildly concerned but not alarmed. A message on our answering machine from Dr Bruce urged us to head to the Prince Charles Hospital (just a couple of suburbs away) - we raised our eyebrows, but still we thought "just precautionary". (SSB's brother is an well-known medical specialist and we imagined Dr Bruce was being a bit overzealous in his duty of care.)
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Paediatric cardiologist Dr Rob met us at the hospital's Children's Ward ... we chatted initially and then fell silent as we watched him examine our healthy-looking baby. He spent what seemed like an age silently huddled over the echo machine, watching blurry images of our little man's heart and bloodflow. It was now that those first icicles of fear began. We stood rooted to the spot, disbelieving and shell-shocked as he described the situation: our baby had an uncertain number of holes in the heart. I don't think we really heard anything beyond "Your son is in Heart Failure...".
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To me (back then) these words almost hung like a guillotine over our helpless baby - heart failure. Horrible, unknown, threatening - very definitely not good. Later I would understand more, and fear (slightly) less but on that first night there, in the Children's Ward, was no room for anything else in our heads.
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The bizarre thing was that I had been a regular visitor here during my pregnancy – a childhood friend’s oldest daughter had had a heart transplant just a few months earlier. It was an enormous event and she had seemed so very sick, and to a childless career chick expecting her first baby, it seemed like such an incredible rare thing. Then, I had looked around the ward and at the babies and children with their monitors and “big zipper” scars down their chests, and felt great sympathy but a remoteness from their ordeal. To have a child with heart problems. Poor things...
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Now, by some bizarre twist of fate, we were inside their world and the view was much, much more terrifying. The next 10 days of our life was spent inside this ward, inside this hospital. In this time our learning curve was sharp and often shocking. Doctors would discover our little man had multiple VSD's (Ventricular Septal Defects - including many "Swiss cheese" holes at the base of the ventricle muscle) and he would undergo his first heart surgery.
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Our surgeon, Dr P, planned to perform what is known as a "closed heart" operation. This meant that while they were working very near his heart, our son would not need to be on bypass machine. This was supposed to be a reassuring thing… right. Somehow heart surgery of any kind on a child is enough to tear a parent’s lungs out through their nostrils. Or something equally painful. And hard to explain. I can't begin to describe it without being back there. Gut-wrenching and helpless.
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Our nine-week-old precious boy was wheeled in and we held his hand while gas was administered to ease him into the anaesthetic. And while we waited in the awful tiny room for distraught parents, Dr P inserted a pulmonary artery band to stem the flow of excess blood to his little lungs; a move designed to buy him some "growing time" before open-heart surgery (sometime down the track) could repair the defects.
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Ever felt like you haven't breathed in about 5 days? That was me. Even when they said he was OK, and we could see him in the ICU, the breath-holding continued. Seeing him wired up to about 5 machines, I was almost scared to touch him - he was so still and tiny. SSB was strong and silent and also terrified. We didn't know the rules of this fight, we were learning along the way and were surrounded by the strong, weary faces of parents who had seen it all before, and knew they would see it again soon. And the patient, often-weary experts who tried to lead us through the battleground, and the brave, concerned-but-trying-to-be positive faces of our family and friends. SSB and I weathered each day, each drama, knowing we had each other in this battle and we clung to that.
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We were given the all-clear to go home seven days after his surgery. We had numerous medications to help our little man - with his new chest scars - deal with his heart failure. We battled to get our heads and emotions around the challenges set for us, as our families sought to find the elusive words and actions to soothe us and encourage us. We packed up and went home and tried to take up the mantle of new parents as if nothing had happened - as if the past 10 days had not happened.
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Unfortunately our little hero went deeper into heart failure as he struggled to grow into the little band around his artery, and he soon lost all interest in feeding. He stopped suckling at all. We reluctantly returned to hospital and began tube feeding - where a nasogastric tube passing down one nostril and into his stomach allowing us to "feed" milk directly. It was a regime that would become a constant part of our lives for the next 8 months.
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Desperate to keep Dash on breastmilk, I would struggle on for a few more weeks - trying to express breast milk to put down his tube. Every four hours I would start my routine - set up, express, bag the milk, clean up, set up his tubes, slowly feed it to him, clean the tubes (often changing him and sheets after another bout of projectile vomiting) and then try to get sleep for the hour and a half I had before it would start again. In the end I admitted defeat. I chose sanity over mother's milk. It was a tough call.
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It's important to note that we did smile occasionally in this period - like when my wonderful hairdresser (another bush girl) would bring her kit and come into my home and cut my hair for me. I barely got out and it was a highlight to have Pam chatting brightly and making me look a little presentable. I was on the verge of serious depression and those around me knew it. Pam chose to help in a positive way, and to this day I think of her with huge gratitude.
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Other friends walked our beloved Great Dane, Coz, for us. Another mum - a friend whom I hadn't known for long, simply brought her daughter to play with our little man, ignoring the plaster and tubes, allowing us to be normal. To me it was pure gold. My motto became: Just look up, don't look down.
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During this time we were lucky to discover good support (and a pump). I was not alone - and I had a little help from an inanimate object that would offer me a glimpe of normality. I have endless respect for anyone who can tube feed a wriggling baby with open syringes for any length of time! That pump saved my sanity - I simply didn't have enough hands to feed and settle a very unhappy and constantly vomiting Dash on my own.
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Tube feeding was not covered in Up The Duff. Or on any website I subscribed to. And I won't pretend. I struggled. I felt completely unequipped for this. I wanted to rewind, and give birth, and breastfeed and be able to settle my happy, healthy baby. But this was our little man here, our beautiful brave little man, valiantly battling just to eat and grow. And our job was to help him. My job was to help him grow so we could allow the doctors to fix him, and to love him. And God knows I loved him more than life. So everything became about today, about those scales, about growing him. Just look up, don't look down.
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Dash battled and vomited like crazy (after several bad experiences with nasogastric tubes) and after much consultation with specialists we eventually resorted to additional surgery to insert a Peg tube (feeding directly into through his stomach wall). It was an awful decision to make, but proved a good one for our pallid little bub. The vomiting slowed and he (ever so gradually) began to show interest in taking milk and solids orally.
But our biggest hurdle was ahead of us. The "real repair". And I would find out what I was really made of...
Next post: Our King of Hearts - Part Two (The Big One)
However, the good Lord decided to give the green light to our little event and smiled down, allowed various godparents to escape their flooding locations, and even parted the clouds for a few hours to dry out roads and park-like lawns so mudboots were no longer essential footwear.
Mmmmm. This is what comes of self-indulgence. And red toes. It's just not natural.
The wood fire has been replaced by a gas burner with a much more even and reliable heat. Technology has made Branding way more busy and intensive and involves enormous amounts of (computerised) book work and various software programs. The procedure for each calf takes between 30 seconds and 2 minutes. 
