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.

20th August 2006

Dane is getting worse. His little body is starting to swell up and all the blood is leaving his extremities- a survival thing the body does to try and survive.. I feel so helpless and so very frustrated. I know Dane's brain injuries would properly kill him if he had heart surgery but honestly I can't understand what a differences a couple of days would make. His brain needs six months to heal.

I am so scared that with every minute that passes Dane's heart will suddenly rupture and he will never get the chance to have the life saving operation that he needs.

19th August 2006

The new line in Dane's leg is stopping the circulation in this leg and his leg has gone black. If they can't find the reason why, Dane could risk losing his leg. Thankfully it was a matter of repositioning it and the colour returned to normal later that day, Phew!

19th August 2006

Dane's themral line in his neck came out. This meant he was getting none of his medication! An emergency line was put into a vein in his head, they did this as a temporary line until it could be arranged that Dane to have a general to get a new themral line put in in a more appropriate position.

When the new line was put into the artery in his leg to prove to be too much for his heart and Dane couldn't come off the ventilator.

17 August 2006

This is the last time I was able to hold Dane. His heart is now so fragile that just moving him threatens his life. But while he lay in my arms for this last time his vital signs actually improved. I hope it's because he knows that he is with me and how much I love him.

14 August 2006

Three days after that horrible night Dane had over come the liver infection and all his organ functions were slowly returning to normal. He was still very critical but at least he was in a more stable way.

15th August 2006

DANE TURNS ONE MONTH!

Day by day Dane's condition deterioates even more. He is starting to swell up with all the fliuds that are being pumped into his body. He's staying stable but I wonder for how long. I feel so frustrated with the whole situation Dane is not going to survive without an operation. But to do that operation the medication will properly make him bleed out in the brain. We are stuck between two rocks and I can't see a way out, not with Dane alive. Everytime I leave him I whisper in his ear to not let his heart stop- just don't let his heart stop.

11th August 2006

Today Shaun and I where by Dane's bed when we noticed that he was getting swollen in the stomach area. We could literally see Dane's liver swell up. It was so swollen that a biopsy couldn't be preformed for fear that they would rupture the liver. He had contracted an inter current viral infection and now his organs were beginning to fail.

We were told that he was on all the medication already that could help him and that he'll have to fight his one on his own. This is what could kill him. I felt such despair, could anything more go wrong. Surely Dane couldn't keep going

.

10th August 2006

Today was another difficult day, not that any of these days are easy. Today the family came up to say goodbye. Shaun's and my parents were there and so were our three other children. One by one I took each one up to the ICU to say goodbye and one by one I had to tell them that their little brother will properly not be coming home. I broke their little hearts!

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.

8th August 2006

The blood transfusion Dane received yesterday didn't help as much as they hoped so today he had another one. This time he was allowed to be in my arms while he got it. Dane was so grey. What was happening?

7th August 2006

Dane had being getting paler and paler and today he was really pale, the nurse tried to reassure us but deep down I knew something was wrong.

Blood test had been taken and it was discovered that Dane was no longer making his own blood. He was taken back to the ICU for a blood transfusion. For a sick baby with a bad heart this was a very serious procedure.

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.

27th July 2006

Today Dane came off the ventilator, it's so good to see more of his little face. He is still getting oxygen through nasal tubes. Dane will be on antibiotics for six weeks. I can't believe our little boy can be so sick. I couldn't imagine life without him.

26th July 2006

Dane has been stable since the night of the 22nd and today the doctors let Dane come out of the induced coma. He is still having small seizures and he is still very sedated but he opened his eyes for the first time and I knew that he knew we were there.

23rd July 2006

Today we had Dane christened. It was very bittersweet, I put on a brave face but inside I was falling apart. All our closest family was there and it was the first time my father had gotten to see Dane. Now he realized how sick Dane was. Dane had been stable since last night and this was the first time I was able to hold him. I keep touching him. I was so scared he would never wake up or if he did he wouldn't know I was his mother.

The bacterium that is attacking Dane's heart is finally identified, it is Pneumococcal and the main part of the infection was around his aortic valve.

22nd July 2006.....

This morning we meet with Dane's cardiologist Jim Morwood and he told us what Dane had was an infection call Bacterial Endocarditis but they didn't yet know the exact bacterium that was attacking his heart. BE is an infection that eats away the inside lining of the heart usually around the valves. It is very aggressive and difficult to treat because the bacteria sits in a protective sack.

Dane had also suffered some brain damage from the infection flying off his heart and embedding in his brain but at this stage he was too ill to do any CT scans to see how bad. They were able to test his brain waves so we knew that he was still in there with us.

The most horrible thing we were told was that they had never heard of another baby being born with what Dane had or have it in such an advanced stage ( infecting both sides of the heart) and that if a baby or and child got this infection it had a very high mortality rate. We would be lucky if Dane survived the next hours let alone the next couple of days.

21st July 2006

Dane had survived the journey to the RCH and by the time we saw him he was hooked up to so may tubes, wires and monitors you could barely see him. The nurses were so nice to us, explaining what everything was doing to help Dane and all the while I was wondering when this nightmare would end.
The blood cultures still hadn't "grown" anything that could help the doctors find out what was wrong with Dane, apparently it can take up to a week. They had also detected a heart murmur which needed to be checked out but we were assured that heart murmurs in newborns were fairly common.
About mid-morning a cardiologist came from another hospital to do some tests on Dane. Afterwards we were told that Dane had an infection in his heart, not in the brain as originally thought. I didn't know if that was better or not but it meant another move to another hospital that specialized in paediatric cardiac care. But Dane was too unstable to move, his heart was stopping every ten minutes or so, because he had a complete heart bloke on the aortic (left) side of the heart. Finally late at night the transfer happened and again we drove to another hospital not knowing if Dane would make it through the transfer. At least this hospital was a little closer to home.

20th July 2006,

In the last 24 hours Dane had become increasingly sleepy and not feeding very well. At 6 o'clock that evening we decided we needed to get him to the hospital which is only 2 minutes away. Just as we were getting him ready Dane had a seizure, knowing I would get to the hospital faster then an ambulance would get to us I rushed up there.
We were admitted into the emergency dept. immediately and just as I got Dane onto the bed and was undressing him, Dane crashed!
He was having seizures all the time and he had stopped breathing. For the next four hours everyone was working desperately to save his life. I can't remember alot of this time, I went into shook but I will never forget the nurses picking Dane's little limp grey body off the bed and onto the paediatric warming bed. They keep asking if I understood what was happening, medically I did but I couldn't understand how this could be happening to my perfect little man.
When they finally had him stable enough to move to the Royal Children's Hospital, he was in an induce coma and on life support. The doctors told us that they really didn't know what was happening to Dane. He had a swollen brain, a very high temperature, they seem to think it was possibly Meningitis but until the blood test came back they couldn't be sure. But they were very sure that he was critically ill and may not survive being transported to the Children's hospital.
Unfortunately we couldn't be in the ambulance with Dane so my husband Shaun and I traveled to the hour long trip to the hospital not knowing if Dane would be alive when we arrived.

15th July 2006

Dane came into the world after the most beautiful birthing experience I have ever had, only lasting 2 1/2 hours!

Straight away somethings didn't seem to add up, Dane weighted more then he looked at 8 pounds 7 ounces and seemed to breath quickly though this nose. All this was put down to a quick delivery.

We stayed in hospital for three days and just after we had seen the doctor to get the OK to be discharged I saw Dane do something which I thought was strange, he held his body stiff for about 30 secounds and relaxed. I thought he was just holding wind. If only I had questioned it.....