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Taylor Barnes Heart Journey

  • Happy 5th Birthday.. we have a new heart for you

      2 August 2015

    1st August 2015: Taylor's 5th Birthday. We had a wonderful party in PICU for her. This is the best she had been in a long time and how amazing that she was able to enjoy her 5th birthday celebration.

    Leanne was told the news later that night, we had just finished having a takeaway dinner. Taylor was watching a movie, The Princess Bride I think?... and the team came into the room, it must have been about 7.30pm.. sometime around then.. WOW! They have a beautiful healthy heart for her.

    This morning 2nd August she went into theatre at around 4am... and now we wait xxxx

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  • Berlin heart machine

      10 July 2015

    10th July: Taylor had her first open heart surgery. She now has a berlin heart machine; this helps her own heart to pump blood round the body. This has been put in to help her left ventricle and may need another one for her right, time will tell. It's a bridge to heart transplant and she is the third child we know of to have this in New Zealand ; but there are many other children living on this around the world. Taylor and Leanne have been living in hospital now since around the 22nd May, they will be living there now until she gets a new heart.

    Thank you so much for all your support, love and kindness. It means so much and helps us all through the bad times.

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  • Out of Isolation!

      12 June 2015

    Got the good news today and Taylor is allowed out of her room as she is not contagious anymore. Taylor and Mum are still at Starship but now in the ward which is great. Hopefully be home soon..... maybe next week sometime all going well :)

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  • Damn Pneumonia!

      3 June 2015
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    Friday night (29th May), Taylor was admitted back into hospital with what started out as a cold and fast became viral pneumonia with probable heart failure complications. She became rather unwell quite quickly and Monday night (1st June) she was transferred to PICU (paediatric intensive care unit) where she is now. She is receiving such great care in PICU; they are a wonderful team of health professionals.

    She needs high flow oxygen, intravenous medications to help her heart and is constant monitoring. Mum and dad are constantly by her side. Taylor is alert and a little chatty here and there but most of all still able to enjoy watching her favourite movies. Please send positive thoughts and prayers for a good recovery.

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  • Taylor has been accepted onto the list!

      25 May 2015

    The meeting that we were waiting for was postponed for a week, but the following Friday 22 May, Taylor was officially accepted onto the active heart transplant list in NZ and if she is successful, she will be the youngest recipient in NZ. Mixed emotions for us all, as you can imagine. We are so thankful that we have been given this opportunity to give Taylor a better life, but then also realise that it will be a hard, long and emotional time. Thank you so much for everyone who has either donated on Givealittle, brought us a meal, or just been there for us. This definitely helps us to keep strong and positive for Taylor as it is a very hard thing for a little 4 year old to go through.

    Thank YOU!

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  • Home at last.. 28th April

      3 May 2015

    Today has been a day of some positives. The Melbourne transplant team seem to think that a transplant would be a good option for Taylor (yay), and our case will hopefully be presented on the 15th May to the NZ transplant team. So lots of work by our awesome team at Starship going on behind the scenes.

    They also think that we can go home tomorrow to see how we get on there. Jesse also had his first big day at daycare today. Well done my little man! So I won't start packing my bags just yet but fingers crossed we can escape here for a while!

    For more updates copy the link below to their facebook page. Leanne updates this regularly

    https://www.facebook.com/taylorbarnesheartfoundation?fref=ts

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