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

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.

Free professional photographs of your very early prem

Did you know that if you have a very early prem (under 28 weeks), you can ask a professional photographer to come and take photographs of your child - for free?  I had no idea this service existed until recently,  but it looks fantastic.

This is from their website:

The Australian Community of Child Photographers (formerly known as the Australian Charity of Child Photographers) is a volunteer organisation of child photographers from all over Australia who have come together to form an organisation dedicated to giving the gift of photographic memories to families that have experienced stillbirths, premature and ill infants and children in the Neonatal Intensive Care Units of their local hospitals, as well as children with serious and terminal illnesses. The ACOCP is dedicated to providing this gift to families in a caring, compassionate and heartfelt manner.

You can read more about what they offer here: http://www.acocp.org.au/services/

According to the website, families in Perth should contact Loren Ioppolo on 0402 364 812 or email wa@acocp.org.au

95 days later

Last night on a parenting forum I came across a post from the mother of a little boy who had been in hospital for 95 days - exactly the same length of time as Talia - and who had now just passed the milestone of having him home for 95 days.

It took me straight back to the same moment in my life, and I went and found the blog entry I wrote for the L’il Aussie Prems website at that time (my first blog post ever, before I had a website of my own).  Here it is.

95 days later

By Finisterre on September 29th, 2007

We celebrated a special family milestone this week: following 95 days in neonatal hospital care, our prematurely born daughter Talia passed her 95th day at home.

191 days before this milestone, I was a different person. Walking with blind faith through a seemingly ordinary first pregnancy, I knew nothing about prematurity, had never heard of CPAP or NEC or ROP, wouldn’t have known a bradycardia from the Brady Bunch, and had never experienced the indescribably gut-wrenching fear of losing a child almost before its life had properly begun.

Today I am the mother of a petite, smiling daughter who should only be three months old, not six. Looking back on the extra three months of daily hospital visits, I remember urging my little scrap of humanity to survive, anxiously checking for any gain in her weight, increase in her milk intake or improvement in her breathing, and I realise just how much further families of prem babies need to travel in order to arrive at the same place as families with healthy full term babies. It is an emotional journey on rough roads through strange territory, navigated via heart-rate and oxygen monitors, and not a few prayers. This neonatal landscape has changed us forever, left its shadow on our hearts, and opened our eyes to fears and wonders never before encountered.

After 95 long days, one journey finished and a new one began. We have been blessed twice over, both with the life of our child and with all we have experienced and learned about her incredible survival.

And here’s the munchkin at that age: