Link to Christopher’s Photo Gallery

The end of Christopher’s Journey

One final post on Christopher’s Journey.

We left Christopher last night about 8pm, after we had wrapped him up, tucked him in and kissed him goodnight.

Greg and I went to bed about 11pm and got a call about 12.15am, to let us know that Christopher had another turn and that he was taken up to PICU. To be honest, we thought that Christopher had done this sort of thing before, so we were not overly concerned or aware that it may be very serious.

He had been ventilated and when we arrived about 30 minutes later, they were still working on him. His O2 saturations were averaging about 20% and he was very blue. The doctors said to us that they believed that there was a blood clot in the BT shunt (inserted in Melbourne at 4 weeks old) in his heart. They gave him some medication to try and break up the clot, but it did not seem to work. His 02 sats then fell to about 9%. They gave him a dose of adrenalin, but this also didn’t work.

As the medications didn’t work and because he probably would of suffered terrible brain damage, we felt that Christopher was telling us that he didn’t have it in him to fight any more. Greg and I told the Doctors to stop treatment and let him go.

The doctors gave him some Morphine, so he wasn’t in any pain and Christopher died in my arms at about 3am with Greg by our side.

Christopher looked so very peaceful, no tapes, no tubes, just the gorgeous little boy that I brought into the world with such love and held him tight as he departed it, with that very same love.

Paul, Christopher’s fantastic paediatrician was close by and was crying when he gave us his apologies.

We had the opportunity to have some quiet time, just the three of us, in a lovely little room, where we got to say our private goodbyes to Christopher and be a family for one last time.

We took him back to his cot and laid him out and tucked him back in one last time. We gathered all his toys that were in his cot and then went to collect the rest of his belongings from Rose Ward. I think every single nurse down there was crying. Christopher had so much impact on so many peoples lives.

Its feels so very wrong to have your child go before you, but I feel more complete as a person, to have been able to be the mother to the most precious, inspiring, brave and beautiful angel, I have ever had the pleasure to meet, know and love.

Sleep Soundly Little Man

This morning our little man had a battle he couldn’t win. He passed away in the early hours, in his Mummy’s arms and with his Daddy by his side. A peaceful ending to such a wonderful little boy.

Christopher, we love you very much and you brought us great joy and happiness.

We will never forget you.

Almost Home ….

Well, next week is our week! On Monday, Tuesday and Wednesday I will live in the hospital and look after Christopher as if we are at home, with no nurses as support. This will give me an idea of what will entail looking after Christopher. If this goes well and Christopher is still thriving, we will bring him home on the morning of Friday 19th October and he will be at home from Friday until Sunday and then discharged from the hospital.  We will then be a real family, and hopefully, our days at the hospital will be a memory.

There is really going to be a huge lifestyle curve, but I am confident that DH and I can cope with this.

A cranky day…

Christopher had a really bad day. He was so cranky, every time he woke up he cried. Panadol didn’t seem to help and neither did making sure he had a clean nappy on.  Giving him cuddles (which is his most favourite pastime at the moment) didn’t calm him either. I think he may be teething, as he has a small little bump on his bottom gum, so this could be the cause of it. But it is very unusual for Christopher to be so restless and cranky. Hope he feels better and cheers up soon, can’t be much fun being in a bad mood all day 🙂

Christopher Unwrapped!

Well it was only temporary, whilst we changed the dressings, but here are a couple of pics of Christopher without any white tape on his face. His lip is healing beautifully.


Causing trouble again …

Christopher decided that it would be a really good idea to pull out his TPT. So he spent most of the day in Radiology getting it repositioned. Poor little bugger was so tired when I got in, from his adventures. Unfortunately, we think that his tummy was upset by the repositioning and he had a couple of bile vomits, which meant that all the tape on his face has to be redone. He hates having his face re-taped and he gets himself into such a state. It is distressing to see, but you have to do it. Luckily it doesn’t take too long to calm him down.

Christopher’s feeds are now up to 25mls per hour 22 hours a day. He is working up to a 4 hour break per day, so we will have at least one less tube for a short time for when we get home!

Christopher’s Lip

Christopher’s Lip is healing up really nicely. The stitches are steadily dissolving and he is being left with a very thin, slightly pink line on his upper lip under his nose. The nose splints will have to stay in situ for at least 6 weeks and possibly up to 3 months. He has been doing really well in regards to not rubbing his nose and lip.

Although he has been quite crabby the last few days. Not sure why, but its possible that his teeth are moving under his gums, giving him some discomfort. Apart from that, we are in the ‘planning’ stages again, for Christopher to come home! More info as it comes.


Weight – 4300g
Length – 55cm
H/C – 37cm