Do you know a “Local Premmie Hero”?

Nominations are open!

Every year in Australia, thousands of babies are born prematurely. Their families ride a rollercoaster of emotions as they watch their children fight to overcome the health and developmental issues facing them as a result of their early arrival. These issues continue long after the babies are discharged from hospital.

L’il Aussie Prems is seeking nominations from around Australia of “local premmie heroes” – the ordinary yet extraordinary people who give up their time to support the families of premature babies both during their hospital stay and afterwards, doing everything from sewing tiny clothing for very low birth weight babies to setting up local playgroups for prematurely born children to organising fundraising for research into the causes of premature birth, the list is endless.

For more information, please go to http://www.lilaussieprems.com.au/hero/

Happy Australia Day, littlest battlers!

I salute you, Australian premmies!
I admire your strength and determination, your courage and your will to live.
I celebrate the amazing work of your nurses and doctors and the incredible love of your parents.
I give thanks that I live in a country which can afford to provide the intensive medical support needed to help you survive and grow, and does so without asking your parents to pay for a cent of it.
I hope you grow up to enjoy all the amazing blessings that come with living in Australia!

Australia Day 2010

Sensory issues - problems with textures

It seems that quite a few ex-prems develop sensory processing and integration disorders - some need a lot of sensation to keep them happy (sensory-seeking) and some find sensory input overwhelming (sensory-sensitive or sensory-avoiding). I’m sure it’s not just a premmie issue, but it does help make sense of what can otherwise seem like odd behaviour in a toddler. You can read more about sensory issues here.

Recently I responded to a request on a prem forum for suggestions about how to help a child who struggled to deal with certain textures, with the following:

We had an OT visit us for 6 weeks in late 2008 (when Talia was nearly 18 months corrected) as part of the Play and Learning programme, and she did some work with textures. Some things Talia coped with, other things she would not go near, she was sensory-sensitive or sensory-avoiding. Here are a few of the things the OT did which you could try:

1. Put a mix of different dry pasta shapes in a big bowl or plastic tub, and then put in some of your child’s favourite small toys (semi-hidden), so that they have to fish through the pasta to get the toys out. Also works with popcorn, bits of packing foam etc.

2. Invest in or borrow a water table (or sand & water table), and spend some time putting things in and out of water, pouring, splashing etc. This was a huge hit with Talia, and lead to her picking up “wet” things like cut fruit which she had previously refused to touch. The OT also brought shaving cream to put in the water table, we found Talia disliked that almost as much as she liked the water but it may have also been the smell of it. We subsequently bought our own water table and it has been one of her favourite play activities since, even in the middle of winter she wants to play with it!

3. Vibration. We had a cat’s toy which the cat never liked, a little fake mouse with a string you pull to make it vibrate across the floor for the cat to chase. We would pull the string then give it to Talia to hold while it vibrated, to get her used to a different sort of stimulation. The OT had a different toy which had the same effect but it wasn’t as cute as our mouse!

Good luck and I hope you see some improvement over time as your child gets used to different textures and sensory experiences.

Protection versus overprotection?

All children are precious, but when they arrive early and give you a real scare, I think you cling to them even more tightly. Sometimes your need to protect them is very real - if, for example, they are prone to lung infections following chronic lung disease, or have other medical issues which require them to avoid anyone likely to be infectious. KEMH recommended that I avoid taking Talia into shopping centres and other crowed places for the first few months, and that she not attend childcare for her first two years, as she had struggled to breath for so long and came home after 11 weeks of CPAP with O2 and another week just with oxygen via PBF. Fortunately for us, she has had no lung or chest problems since discharge, but I know other prems who are in and out of hospital every winter and come down with bronchiolitis as easily as some kids come down with a cold. So precautions are important, and despite what your family has to say on the subject, if you want your child kept away from Granny because she has a cold then your decision should be respected!

However, as the years pass and our little ones grow and amaze us that anyone so tiny could come so far, sometimes I wonder if we maintain that sense of vigilence for longer than we need to. A while ago, a friend told me of a colleague, a psychologist, who had done some research involving premature children. Her unofficial summary of his findings was “The kids were normal but the parents were not.” From what I remember her saying, he had not found evidence that premature birth lead to increased psychological problems - but he did feel that the parents of those ex-prems were much more anxious than parents of full term kids, and worried about their kids much more than parents of other kids he had studied. When I mentioned it to some other prem mums, they admitted they had noticed it themselves - for example, if their child had flu-like symptoms they would tend to panic and go directly to A&E rather than waiting to see a GP.

After that conversation, I decided I really needed to consciously try not to overprotect my prem. I am relaxed about the common cold and “normal” germs - and thankful for a child with a great immune system despite her unpromising start. After a year and a half, I started using childcare. But some things are harder. I read an article in a parenting magazine last year entitled “cottonwool kidlets”.

The level of protection your child needs will change as they grow older. Obviously very young children have no ability to determine danger so they rely on their parents to keep them safe, however the problem emerges when parents are unable to let go of their growing child and allow them to explore their own independence. Parents have to be careful about over-protecion because a child can pick up on separation anxiety and can also become anxious. And we know anxiety in early life can lead to anxiety and even depression in adulthood. Anxious children can become timid, shy and develop social phobias like a fear of meeting new people. This can be tough on them when they start school. Parents need to give children safe but effective opportunities to play and explore, and to learn to cope and self-soothe.

It all makes sense… but it’s not always easy from a parent’s perspective. My child is already much more timid than her peers and takes a long time to adjust to situations where there are crowds or she is separated from me. It might be just her personality and nothing to do with her prematurity, but either way I hope I can help her to grow more resilient, and to keep myself from becoming an over-anxious parent.

A new year’s resolution

2009 has been a very busy year for our family, and as a result I have not managed to keep up with everything that I planned to do… including updating this website. However, I’d like to keep it going, as I can clearly remember many lonely late night pumping sessions when I would sit at home, separated from my daughter, searching the internet for information about premature babies, and I would have loved to find something like this - a local site which would (hopefully!!) point me in the right direction to get the support and information I so desperately wanted.

So for 2010 I resolve to check all the links and add new information as I find it, and I hope it will help new parents as they take their first uncertain steps down the prem path.