Counting the grams

Even though we are home, its still very much a weight-ing game for us all. Albie is putting on weight ever so slowly and is now 3.86 kgs. Weight, or lack of it, is often the bain of the cardiac kid as so much energy is being used on his circulation set-up that not alot is left over for growing.

So settling in at home is punctuated every three hours by a feeding schedule of calorie supplements, tube feeds and expressing. Its had me a wee bit down I have to admit. I think its because somehow I thought that leaving hospital would mean leaving behind all the medical bumpf that has surrounded Wrigglesworth since his arrival. But looking at the syringes, litmus paper and gastric tubes that now occupy our kitchen, I am starting to realise that medical bumpf will be surrounding Albie, wherever we are, for sometime yet.

And then I look at Wrigglesworth – and all is well again. He is delighting in time on his own on the ground, his toy Ruru that hoots, and anyone whispering. He has a strange looking claw hand in the last photo. Thankfully, thats just a trick of photography.


  1. Wow! He is so cute and looking really well and happy – spending all his energy smiling by the looks. Hang on in there Sarah – you are an amazing mum already. It is in your blood!

  2. What a superb smiley boy!! With his tooting Ruru, his delight in whispered words and the aroha of his parents he’s an absolute character i reckon. Virtual manaaki ki a koutou 🙂

  3. Albies looks sublimely happy and just delightful. What an incredible boy. I just showed Aneke these pics and she started smiling and chatting to her little buddy! You guys are just amazing – and even though this post is filed in the not so good times, one look at Albie shows that there is sooooo much good, sooooo much aroha, and soooo much wonder in this world. xxx

    • Anneke and him will get on like a house on fire I think – if his scrunched up nose is a hint of a sense of humour that is as wonderful as your girl’s than we are in for a hoot!

  4. He’s putting on weight – so going in the right direction – and he’s happy – a champion smiler!! You are obviously doing all the right things. xx

  5. He’s so gorgeous Sarah – I agree with everyone he looks so happy!! Must have fantastic parents 😉 Cool that he loves his Ruru – Dylan has had one since he was little and it still sleeps in bed with him every night

    • Thats cool! Yeah, he was a bit spooked by Ruru at first but now he is very pleased with the noise it makes – won’t be surprised if it is what gets his first laugh out of him!

  6. Such a cutie – even his little ‘claw’ hand looks cute, like he knows he’s doing it, for a laugh. You are amazing, sis, and I know he is getting the absolute best care with you two. And I am sure he knows too.

    • Aww shucks, thanks Andrew.I reckon Albie is as pleased with us as we are with him, he throws smiles at us far too easily. Hopefully the mutual appreciation will last through his teenage years!

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