Premature Baby Support Forum

Our forum is a safe and welcoming place to gain support after the birth of a premature baby. Over the past year our membership has grown with more families joining on a daily basis from families currently just starting their NICU/SCN journey to babies who have been home for years, some with no ongoing issues and some children that have conditions that will continue for years to come. No matter what journey your premmie children are on our supportive community that is L’il Aussie Prems has become a home away from home and a family to so many.

Forum topics range in diversity from breastfeeding & expressing questions, toilet training, seeking advice on family matters, celebrations of milestones, photos, competitions, introductions and new arrivals to the L’il Aussie Prems community.

For a glimpse into our community, some of our latest forum topics are below.

Some home photos

Wipes

How much did your bub weigh at birth

Snaps sale

Hello everyone

Adelaide ladies

Which state are you from

How did you find L’il Aussie Prems

Why eat when you can play

With over 950 families registered on our forum you can be sure to find plenty of information, support and answers to many questions you may be asking after giving birth prematurely.

We welcome you to join our support forum. Everyone is welcome. We look forward to hearing about your premature babies and all about their amazing journey.

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Breastmilk, formula and mother guilt

I keep seeing this issue come up for premmie mums. You’ve expressed for your baby while they are in the NICU (and often longer) as much as you could, you’ve given breastfeeding your best shot, but at some point despite all your best efforts it just doesn’t work out, you can’t keep your milk flowing and it feels like the end of the world.

You are not alone in feeling this way.

First, if you’ve expressed milk for your child while they were in hospital, woken up in the middle of the night at home to attach yourself to a breastpump far away from the child you want to be holding, and endured all the dairy cow comparisons, you are a legend. You have given your child the most amazing gift, one which has made the awful hospital journey that much easier for them to negotiate. You’ve dealt with stress, grief, fear and everything else on the emotional roller coaster and still delivered the elixir of life. As time passes, I hope you will look back on this achievement, as I do, with considerable pride.

If you’ve managed to establish breastfeeding, you are a champion – and so is your prem! It’s not easy trying to suck when you’re on CPAP or have an NG tube in the way. You might have had a prem with a weak suck, or who needed the help of a nipple shield, or other assistance. It may have been a battle getting nurses to stop tube feeding or topping up while you’re trying to move to all suck feeds. It’s nothing like the pictures in the hospital of chubby full term babies instinctively suckling within hours of their birth. Yet your persistence has been rewarded by the amazing feeling of your child connecting with you in one of the most powerful maternal bonding experiences around. This moment may be fleeting but it is definitely one to treasure.

Then things go pear-shaped. Your baby isn’t gaining weight, the stresses and strains of the whole prem experience lead to supply issues, you just can’t bear to keep expressing after everything you’ve been through. Or maybe you expressed or breastfed for months and months after coming home – but you wanted to keep going for longer, and it just isn’t working out. You’ve searched the internet for every possible means to increase your milk supply, you’ve been on prescription drugs but even they don’t help, and despite everything the pro breastfeeding lobby says (and you consider yourself a pro breastfeeding mother) sometimes mothers don’t produce enough milk to keep both baby AND mother healthy. Because ultimately your mental health is just as important as your baby’s physical health – and sometimes this gets overlooked. I was on the verge of serious postnatal depression because I was so worried about Talia’s lack of growth and my inability to produce more milk for her, when I desperately wanted to keep breastfeeding.

Then comes the awful moment, the time you had always thought you could avoid – when you have to go and buy a tin of formula. For me this came when Talia was about 6 months old, 3 months corrected. Personally I found this step so horrible that I looked at tins many times, picked them up and read them but couldn’t put them in my trolley. My mother (who was hugely supportive of my breastfeeding goals, and very impressed with the resources available to help me, such as the Breastfeeding Centre etc) reminded me gently that I had gone onto formula at 6 weeks of age during the 1970s when breastfeeding levels were at an all time low and support for mothers to breastfeed was minimal – and I’d turned out OK, and no-one could tell whether I’d been breastfed or not.

Eventually it was my sensible GP (who is a mother herself and had done all she could to help me by giving me a 6 month prescription of motilium) who asked me to consider making the move, because she could see I was digging a big hole for myself psychologically, and didn’t think depression would benefit either Talia or me. She also reassured me that I had done an amazing job to breastfeed under the circumstances – and eventually I believed her. Still, the first day I offered formula I was still a mess of tears and disappointment. I hadn’t cared about getting a big pregnant belly, I didn’t feel guilt about her early arrival, but not being able to continue breastfeeding felt so much like failure.

I continued to breastfeed as well as formula feed for several months, but Talia found the bottle so much easier and eventually my supply which had never been plentiful dwindled beyond redemption. However, I gradually relaxed and was able to enjoy it without worrying so much about her weight gain.

Now I look back and things are much more in perspective – the joy of 20:20 hindsight.  It’s true that no-one can tell which babies were breast fed and which were formula fed.  It’s true that giving my daughter breastmilk while she was in hospital was the most critical thing, and that anything beyond that was a bonus. It’s true that I fed for longer than some mothers did, and for a shorter time than others, that I produced more milk than some but less than others – but it’s not about comparing yourself to other mothers. I know I did my best under the circumstances I faced, which is as much I could realistically ask of myself, and that’s all that matters now. The guilt has gone the way of my breastfeeding cleavage, and it is not missed at all – unlike the cleavage.

This article first published at Prem in Perth

Celebrate Premmie Day With A Childrens Rose

National Premmie Foundation celebrates National Premmie Day with the Children’s Rose

Purchase a rose for yourself, as a gift for a family member or friend currently in the Neonatal Intensive care unit, or to support the work of the National Premmie Foundation. Then plant your rose and watch it flourish as it flowers and grows over the years. These special roses help raise funds to support the work of the National Premmie Foundation.

Price: $16.00 per rose

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Visit www.prembaby.org.au

National Premmie Day – Friday July 31, 2009

PRESS RELEASE

From little things,
BIG THINGS GROW

The National Premmie Foundation announces the 3rd Annual National Premmie Day with celebrations occurring Australia wide for the births of our smallest and most vulnerable newborns.

Each year approximately 21,000 newborns are admitted to Special Care Nurseries and Intensive Care units across Australia. July 31 2009 is the day to celebrate with our Little Aussie Battlers – our premature or seriously ill infants as well as remember those special babies who did not survive their journey.

The day coincides with Respiratory Syncytial Virus (RSV) season, a common virus that causes cold like symptoms. For prematurely born and seriously ill infants, RSV is a serious health threat often resulting in re-hospitalisation or forced isolation for families. By the age of 2 nearly all children will have been infected with RSV at least once and we want to make all parents and the general community aware of the signs, symptoms and preventative measures for RSV.

The National Premmie Foundation invites parents of premature and sick newborns to hold a National Premmie Day event in their local community. Support and information for families, carers and health professionals is available at www.prembaby.org.au or by calling 1300 PREMBABY (1300 773 622)

Reporter enquiries are welcome. Please contact Deanna Jenkins, President, National Premmie Foundation on 1300 PREMBABY (1300 773 622).npd

Tristan’s NICU/SCN Journey

Day 1 19/06/09
Tristan Riley arrived at 10:04am on the 19/06/09 at 34+3 weeks gestation.
Weighing in at a whooping 3090 grams (exactly twice Brendan’s weight) HC 33cms and L 50cms. Apgars of 6:6:8

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Labour…
Stage 1: 7 hours
Stage 2: 34 mins
Stage 3: 7 mins

Admitted into SCN 3 (NICU)
Respiratory Distress Syndrome
Ventilated -
CPAP – until 6:15pm
Incubator at 6:30pm
One dose of Caffeine
One dose of Survanta

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Day 2 20/06/09
W 3080 grams

Feeds starting today
Newborn Hearing Test to be done as soon as he moves into SCN 2.
Moved into SCN 2 (Special Care) at 2:30pm
First nappy change
First cuddle
First Breastfeed attempt
All at approx 3pm

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Day 3 21/06/09
W 2970 grams

Moved from the isolette and into an open cot at 10am

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Day 4 22/06/09

IV removed at 1am.
Last tube feed 1am.
Pulled NGT out, not replaced.
7:30am Transferred to Satellite Nursery.
Feeds upped to 50ml every 3 hours.
Transferred into a wire cot at 3pm
First bath at 4pm

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Day 5 23/06/09
W 2920 grams

No transfer today
Monitor for another 24 hours
Ringing Northam to try and arrange transfer
Phototherapy commenced at 10am

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Day 6 24/06/09

Monitor off this morning
Phototherapy stopped at 9:30am
No transfer today, bloods tomorrow

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Day 7 25/06/09

Transferred to Northam Regional Hospital for rooming in.

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Day 8 26/06/09
Jaundice levels checked again.

Day 9 27/06/09
W – 3000 grams
HC – 33 cms

Discharged home!

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Media Release: Mother of triplets sets the pace to win Australia’s first Local Premmie Hero award

Sophie Smith is an inspirational mother. After enduring the enormous personal tragedy of losing her three sons who were born prematurely in 2006, she set out to honour their memory by running a half marathon. Her aim was to raise enough money to enable the Royal Women’s Hospital in Randwick to purchase a single life-saving state-of-the-art humidicrib.

Sophie’s mission touched a chord and motivated so many people that in the last two years she, her husband Ash and their team of runners have raised over $250,000, enough to buy not just one but ten humidicribs, ensuring that many of Sydney’s tiniest and most fragile babies will benefit from this mother’s compassion for years to come.

Sophie is now being acclaimed as the winning nominee in the inaugural Local Premmie Hero awards – Australia’s first award to publicly recognise and honour the kindness and hard work of individual volunteers within the local premature baby community. These ordinary yet extraordinary people make a huge difference to the lives of families dealing with the challenges that come when their child is born too early, both during their hospital stay and beyond.

Awards were also presented to Karen Cuthbert, who lovingly sews tiny clothes for the smallest premature babies and gives them away to families around Australia, and Julie Clarke, who has been instrumental in founding support groups for parents of premature babies and helping other parents to do the same.

The Local Premmie Hero awards are the brainchild of the L’il Aussie Prems online support website and are proudly sponsored by L’il Aussie Prems and Practical Parenting magazine.

“It is an honour for us, as a community of parents, to be able to pay tribute to those people who go out of their way to make things easier for families travelling the often difficult road that premature birth can bring.” said Julia Toivonen, founder of the L’il Aussie Prems website and mother of two premature babies.

Nominations for the 2010 awards open on the 1st February.

(Our media release has been written by Kathryn Teale, mother to Talia born at 26 weeks)