Tuesday, 5 October 2010

A good morning

I'm feeling happy. Why? Just done my good deed for the day!
I went round to the house of a local mum who's just had a new baby. She is a very special baby, apart from being a beautiful and treasured child she has Prader Willi Syndrome (if you'd like to know more about PWS please have a look at the website of the PWS association for the UK http://www.pwsa.co.uk/main.php ). Baby is nearly 4 weeks old and has just come home from hospital with her new diagnosis. She is a very floppy baby and is slow to respond to stimulus, she's also being fed by a tube through her nose and into her tummy.
Her parents are lovely people and are determined to give her the best possible care. Her mum is pumping away to provide breastmilk and wants to give breastfeeding a go (PWS babies are not normally successful at either breast or bottle, generally they go from tubes to cup feeding and then straight into weaning but we will try). The NHS do not provide  breast pumps in this area, you have to hire them privately so I'm feeling very pleased that I've managed to find her a free dual line electric pump from someone who was giving theirs away and we found someone who could supply a brand new collection set (second hand pumps are fine but you should always buy new breastcups and bottles). So the milk collection is working well and I'm reading up on how to teach baby to latch.
I've also given them one of my baby slings. It's very tempting to pop PWS babies into their cot or chair and get on with looking after the rest of the family while they just lie there, after all they don't do much or make much noise but carrying baby around in a sling will help her to be more stimulated. The sight and smell or mum as well as all the noises she makes are very stimulating for any baby from such close quarters but for PWS babies they are essential in helping them build their neural connections and improve their muscle tone. It's also a very comforting place for baby to be. The sling I've lent them is the Totsbots papoozle (http://shopping.netsuite.com/s.nl;jsessionid=GyHDMrqCYpLJnn2GxFLWH1hKspc192ZyvYsQptXJ7rmnQTy3d1MByy6TwmpnLvp26HShnMNLxPyK1GJqwTM1K3HvLC53QYVCnbV7TwFbFhPG0MZmQCyFqpdQjz1hpSfj!1102953741?c=427532&sc=7&category=3361)  because it keeps baby upright in a heart-to-heart position and can be easily adapted to support baby's neck and head, it's very 'kangaroo care'. 
Then I helped them sort out the carseat too. Not bad for a morning's volunteering.

PS. sorry about the long links, I'll have to work out how to sort that!

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