The beginning

Dear Murray,
I have started this blog to have an honest record of our journey through your heart surgery and beyond.  We had no idea that you had chd. On our discharge check, the paed heard a 'murmur' in your heart. This didn't come as a surprise to me as you had turned purple up his arms and legs every time you fed and you appeared to struggle.  I have had previous experience with heart defects seeing as your brother Darcy had hypo plastic left heart syndrome. He was diagnosed in utero at 15 weeks' gestation.  He was born in Brisbane and passed away 6 hours after his first surgery. I have written his story and you can read it at: http://www.hearts-of-hope.com/darcy/darcy2.html
We were sent home and told to see the gp in 5 days and to go back to the PICU if there was still a murmur present. They were hopeful it was just a PDA which would close over. Needless to says we ended back in PICU and the neonatologist gave you a quick echo there.  He seemed to be able to see a 'sizeable'  vsd and queried pulmonary stenosis.  We were referred up to WCH and went back to Flinders every 48 hours until our appointment.
Going to the WCH was a different experience again, they didn't seem as worried about your condition and confirmed you had vsd, persistent left svc, pulmonary stenosis on the right lung and a narrow aorta. We were seen weekly as you really found it hard to feed and gain weight. At 5 weeks they did an X-ray to see if you had enlargement of your heart and fluid in your lungs to discover you had dextrocardia as well. This means your heart is flipped over and on the wrong side of your body. It's not perfectly  flipped over, it's more malrotated.
You began diuretics at 5 weeks as the X-ray did show enlargement and fluid build up on your lungs. Due to excess blood shunting across the hole in the ventricle, it gets forced up the aorta and overflows into the lungs, putting even more pressure on your heart.  Your weight slumped from the 25th centile to just under the 3rd where it's stayed until now.  We added formula fortification on top of your breastfeeds and life became all about getting as many calories into you as possible. It was constant feeding, with you falling asleep mid feed to wake up 10-30 minutes later and resume feeding.
Each appointment became a watch and wait proposition, you were so slow to gain weight and hit milestones, but you get there in the end! Now at ten months, you can crawl, cruise along the furniture, wave goodbye, blow a kiss and you're saying "Dad, Mum, Bub, Don't, Dom (for all dogs and cats) and Bye".
We are three weeks out from your date that we have been given for your surgery in Melbourne, however the nurses said they haven't sent anyone elective from Adelaide for five weeks, so it looks as if it will be a bit later. You've just spent 24 hours in hospital as you have a cold and became dehydrated and have a horrible cough that causes you to go purple then blue. It's your fourth admission with brochial complications from illness, you just don't seem to cope with the extra strain on your heart. I hate seeing you struggle more than you usually do, however there is one area in which you don't struggle and that's being happy! You are the happiest baby and you go until you absolutely crash.  I think this will stand you in good stead for the month coming up for you.
You are the most loved little guy, you are constantly surrounded by your adoring siblings or family and everywhere we go, you just light up people's day.  I hope when you read this back, you will get a good feeling for what this journey was like for you as I am hoping you won't really remember it.  
So here's to a beginning! Love you, Mama x*