22nd August 2006

After not much sleep, we headed down to the ICU to spend what maybe our last moment with Dane. I couldn't handle it and had to run to the toilet to throw up. This was such an impossibly bittersweet moment, on one hand this could save our baby or it could kill him. Today his fate was going to be decided and all we could do is wait.

Before Dane went into theater I couldn't hold him or cuddle him, there was barely anywhere where I could even kiss him! That was so hard, I couldn't even say goodbye to him properly. From the time he was in, time felt like it stood still, it was unbearable. The surgery would go for a minimum of 8 hours. The hardest thing for me to handle was the hospital staff. Dane was such a high profile case that everyone, even the cleaner knew what was happening. With the doctors and nurses there was a look that I had come to recognise, it's the look they give you when they know there's little hope. That was what I needed to escape from, so I sort out the chapel and spent the time willing my son to live and begging the powers to be to spare him.

22nd August 2006

Today is 'conference' day, it's where all the doctors meet to discuss cases and make the major decisions. Today is the day they decide weather our son gets his chance to live or dies. Earlier they had asked us what we wanted and had given us all the risks. If Dane was to have the surgery, one of his main hurdles was surviving the heart,lung bypass machine, there was an extremely high risk he would have a major bleed out in the brain which would give him major brain damage or make him brain dead. Secondly when they got into his heart, that the damage would be worst then they expected. A pacemaker was on the cards because the hole the infection had eaten through the middle of the heart were near the nerves that make the heart beat. Thirdly because Dane had been sick for so long and his heart had to work so hard that it may not restart when they tried to take him off the bypass machine. Knowing all these risks our answer was to go ahead with the surgery. He had proven them wrong so many times before that they owed it to him to let him prove them wrong one more time. We would rather have him die on the operating table, know that everything had been done to save him, then to sit by and watch him suffer.

It wasn't until 6:30pm that the surgeon, Dr Polhner came to see us. Yes, the surgery was going to happen- 7:30 tomorrow morning. Dane will be put on the heart,lung bypass machine, replace his damaged Aortic valve with a homo graft, repair the hole that goes from the left ventricle to the right atrium and scrape off the remaining infection off the inside of the heart.

He gave Dane a 10% chance of survival. I was surprised, I thought the percentage would be lower. Then Dr Polhner said the most wonderful, positive thing I had heard in all this time. He said," You have to have hope." It was the very thing that I need to hear and from that point I found some comfort.

Through the rest of the night, Dane's Stoic rate need to stay at 24 otherwise the surgery would not be possible. The doctors pumped 30cm syringes of fluid to try to keep it at that but it dropped down to 22 by morning. Dane's body swelled up so much that they could no long do the nappy up and his skin became thin and shiny.

9th August 2006...later that day

During the day the we had a big meeting with all the professionals who were working on Dane and basically we were told that the deterioration in Dane's heart from the infection meant that his aortic valve was literally holding on by a thread and the wall of the Aortic artery was so thin that it was ballooning out and could rupture at any moment.

There was nothing they could do fast enough to save him and if they attempted to he would be left profoundly brain damaged. They were asking us for the right to let Dane die.

After a lot of crying and talking we too came to the same realization and a 'No resuscitation' order was signed but only if his heart stopped not his breathing.

Sign that piece of paper was the absolutely hardest thing we have ever done. The realization that your baby was running out of options was so difficult to absorb. The pain cut so deep and I felt that I was failing him.

9th August 2006

I can safely say that last night was the worst night that we have ever experienced since Dane arrived in hospital. In the wee hours of the morning we were awoken by a nurse. Dane was not coping and his breathing was very rapid. He was rushed back to ICU and while he was being put onto the machines a doctor came to talk to us. He told us that Dane was in a very bad way and until the test came back, they couldn't be sure why.

The he asked the question that I thought I would never hear. Did we want them to do anything further if his breathing or heart stopped. I was shocked- surely we hadn't reached this point. This is a decision no parent should make. Naturally, without hesitation we said yes! The devastation that where feeling is clearly seen on my husband's face.

3rd - 6th August 2006

Dane had an echo to day and they have discover the the infection had eaten a hole from the right atrium through to the left ventricle. But they are more worried about the area around the aortic valve, it has deteriorated very badly and is threatening to rupture, which would be fatal.

It has became very apparent that Dane will eventually have to have surgery the problem with that is with the bleeds to the brain, the brain really needs 6 months to heal. The drugs used for open heart surgery thin the blood, by doing that it would unclog the bleeds in the brain and Dane would suffer a huge bleed out in the brain which of course would be fatal.

Fortunately for Dane he was 'clinically' coping very well.

28th July - 3rd August 2006

Dane leaves the ICU for the High Dependency Ward. He is no longer having seizures and he has had a CT scan which showed that Dane had suffered seven bleeds to the brain, what this means for Dane's development will be await and see process.

The first positive sign is that he doesn't seem to have forgotten to breastfeed, although he is still very weak so he can't stay attached for too long.