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Show your Heart for Xavier

  • The slow grind of heart failure.

      30 January 2017

    Just another update on how the little man is progressing.

    Been upgraded with a $1200 feeding machine (Luckily its free on loan for the moment) means we lose out on 20ml of milk each feed but hes less likely to spill compared to the gravity fed syringes.

    In terms of the heart, he is waking up very sweaty and has big rip clenching breaths when he cries. All the signs we were told about for his heart failure will not be long now before he gets his drugs to help his heart pump more and to thin his blood.

    Its heartbreaking to know that he is struggling and yet we are powerless to help or make things easier.

    We have the consultants/doctors from Auckland flying in on the 10th of Feb to consult us about the surgery and hopefully get an update on when he might get it.

    Sooner the better, his heart is literally breaking.

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  • Home for the moment

      25 January 2017
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    So little Xavier made the trip home on Friday the 20th, 18 days after coming into the world.

    All the training and equipment under our belt we feel ready for this part of his journey to recovery.

    Unfortunately little man is still not putting on much weight despite his big feeds, so we are getting an automated pump to help feed him even more! (He only gained 10g since friday, should be minimum 20g per day! )

    Each day is a waiting game now, just waiting for him to get a little bit bigger and stronger and watch as he gets more tired and struggles to stay awake.

    Just want to thank everyone who has left kind words of support for us and for everything so far on this journey for Xavier.

    We felt so lost and alone but all of the outpouring of love and support from everyone has really helped to lift our spirits, I wish there was more I could say or do to express how much it has meant to us in our continued time of need.

    So thank you, and ill be posting more updates as they come.

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  • Stable-ish

      19 January 2017
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    Little Xavier has been transferred back to Hutt hospital for the moment to establish routine feeding.

    Unfortunately his little heart and lungs are still working over time so he can only be breast fed for about 5 minutes before falling asleep so he will need to use a feeding tube when he does go home.

    There are signs of strain and stress on his little heart but we NEED him to grow stronger and bigger to increase his chances of surviving the surgery.

    Samantha and Clifford are undergoing training to use all the extra devices the little man will be going home with. (Feeding tubes, heart and oxygen saturation monitors) and infant CPR procedures.

    An extensive list of things to watch for as the little man slowly grows.

    (Basically waiting for him to get big enough or for his heart to start failing too much, the delicate fight between safer surgery and permanent heart/lung damage)

    We will keep you all updated but as it stands he will be coming home soon.

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