Parenting Premature Babies

I just discovered that this week is Pre-Eclampsia Awareness Week.

I had never even heard of pre-eclampsia until a friend of mine told me it was the reason she needed to have her baby delivered 8 weeks early, four years ago. To be honest, at that time I didn’t have any idea what she had been through. Since my daughter was born I’ve met a lot more women - mostly via L’il Aussie Prems - who suffered from this very serious and sometimes life-threatening medical condition and whose babies were born prematurely as a result. In fact even two friends in my new mothers’ group who were able to have full term babies also suffered from pre-eclampsia in the late stages of their pregnancy. It’s a lot more common than I had previously imagined.

The Australian Action on Pre-Eclampsia (AAPEC) has a website at http://www.aapec.org.au with a good FAQ and stories from people who’ve been through it personally.

Posted on August 30th, 2008 by Finisterre
Filed under: Health Issues | No Comments »

I love Talia’s NICU photos, looking back on them now. I wish I had more of them, and I really wish I had some video. I don’t think I realised at the time how important they would become, because when I was spending so much of every day in the nursery, I felt as though every detail would be burned into my brain forever. Unfortunately, you do start to forget the little details so every photos is precious - especially the size comparison photos, and the few of me holding Talia. Sadly I lost a lot of my hospital photos last year due to a computer failure - so be sure to create a back up of any photos you take.

I know there are mums who who can hardly bear to look at their hospital photos, showing their baby looking so small and struggling to hold on to life - but it is better to have the photos and choose not to look at them, than not to have them at all. One day your child may also want to know more about how their life started and how amazingly far they have come.

The nurses at my hospital were quite good at giving me little items to keep - things like hospital bands, a tiny blood pressure cuff, monitor leads, the little paper tape they use to measure head circumference and so on. They also made me a card for Mothers Day with Talia’s footprints in it, and so forth. All these precious little souvenirs are in a special memory box which I dip into from time to time.

I’m not really a scrapbooker, although I’ve done a bit of digital scrapbooking. However I know a lot of people like to create baby pages, and if you want something special, here is a site which offers stickers and other scrapbooking stuff specifically for premature babies: http://www.mykidsinspiration.com/shop/index.php The only drawback is that they call premmies “preemies” in the US.

These are a couple of my digital scrapbooking pages, they are part of a photo book I made of Talia’s first year. (They don’t actually use anythings specifically for prems, other than my actual photos.)

You can see scrapbooking done by other premmie mums on the L’il Aussie Prems forum here.

Posted on August 25th, 2008 by Finisterre
Filed under: NICU Life, Parenting, Premature Babies | 2 Comments »

My son was born at 27 weeks gestation due to preterm premature rupture of membranes and premature labour in March 2006. I am now pregnant with my second child and at present i am 25 weeks along and starting to feel very anxious due to my previous premature birth.

My pregnancy has been great although the first 14 weeks were horrible due to morning sickness, tiredness and hormones but it is something to be expected. Since 14 weeks along i have been apart of the “high risk clinic” at Monash Medical Centre and the care i have been receiving is not only supportive but a real relief and i cannot thank everyone enough. I have had scans of my cervix, the results were all great and i had another scan today to check the placenta which also came back great. I have also had quite a few blood tests taken and have many follow up appointments.

The biggest hurdle and milestone for me was to reach 23/24 weeks gestation. After having a premature baby and seeing/knowing the survival rates and outcomes i was just hoping to either reach or pass the critical stage. I have many friends who have had premature babies born at those gestations and whilst the babies are doing great each babies journey is so different so the outcomes are always different.

I received the results from my placenta after my son was born and apparently the report mentioned that there was a small 5mm tear present but otherwise the placenta was very healthy. There was no explanation as to why it happened however today the doctor came to the conclusion that maybe the placenta tore away slightly which resulted in PPROM which triggered the premature labour which is why i had the scan today to check the placenta but everything was fine.

It took me 2 years to have enough courage to have another baby. I had to understand what happened and how i felt about having a premature baby and if i could go through the while preterm birthing experience again. After having a previous premature baby there is a high chance that it could happen again but nothing is concrete so because of the “unknown” it was hard for me to decide when the time was right. Our son is now almost 2 1/2 years old so i did not want to leave the decision too long. If i knew a year ago about the care i would be receiving i probably would have started trying to fall pregnant sooner rather than later.

Once i reach 28 weeks (fingers crossed) i will stop thinking and stressing about every little detail. It is very hard not to think about “what if”, “when will this baby come”, “what will it be like if i make it to term”, “how will we cope having another premmie baby in hospital BUT with a toddler”. The questions you ask yourself are endless but i am trying to stop my mind from thinking too much as all my results are coming back normal and healthy. Once i reach 28 weeks i will have a small celebration that we made it this far, we can continue onto 40 weeks.

Posted on August 7th, 2008 by lilronan
Filed under: Parenting, Premature Babies | No Comments »

Margaret Murphy began life about 18 weeks early weighing around 390 grams at St Margaret’s Hospital in Sydney. These days it’s still special, but not so unusual, for a prem baby to ‘make it’, but for Margaret, born September 19, 1909, it was and still is incredible.

“Wrapped in cotton wool inside a shoe-box, fed with an eye dropper, and she didn’t come home from hospital for three months,” says Elaine Murphy, Margaret’s daughter and only child. “Premmie girls are notorious for being the most determined,” chimes in Amanda Lonergan, President of the National Premmie Foundation.

Margaret survived at least one bubonic plague scare in Sydney prior to 1925. “Mum said that if you went out without your mask on you just got sent home, she never caught it.” “She was always a tenacious lady, but always a very quiet lady. “The vascular dementia, and the clots associated with it, gradually took away mum’s ability to hold long conversations, but right up until the day before she died she still communicated very easily. “She had a funny way of wiggling her eyebrows, so she didn’t say much but her expression was just amazing. “I’d always come away from visiting her buoyed up, because she always made me laugh,” says Elaine.

Margaret was never one to complain about anything, even when her husband Walter was beaten by street kids in Melbourne and passed away after 15 weeks in a coma. “She heard that attack, it happened right outside the front door of their Melbourne home in 1983 after Walter returned home from a dinner.

“Mum and dad had a routine, he’d ring the doorbell, take the dog for a walk and she would make the coffee.
“That night the dog came home and dad didn’t, mum went instantly deaf. She was shocked to the core, but she never complained about her lot in life.”

Margaret was always a spontaneous sort, Elaine reminisces. “On their honeymoon to Jenolan Caves, mum decided she’d climb the flag pole to tie a hankie at the top. “The flagpole is on the edge of a cliff, and when mum got to the top she froze up, then dad had to climb up and help her down.” Margaret was also a lover of fashion and hats, she was always a lady, always dressed up. “Whereas I’m a tomboy,” laughs Elaine.

“We lived in the Northern Territory for a while, and mum would ride around Arnhem Land on horseback.
“She loved the country and animals, she had a real way with animals.” Two days before Margaret died, Elaine hurt her hand and when she visited her mum, Margaret only expressed concern about the injury.

“It was a real mother thing. I thought, here you are dying and you’re still only concerned with my welfare, she was a mum right up to the end.

“I contacted Amanda because I thought that my mum’s story would give hope to parents of prem babies, that they can and do live full, happy lives,”

“Having a prem baby makes what should be a wonderul, happy time into something traumatic. “Mum was tenacious right to the end, she was born that way and she left that way,” says Elaine. Sadly, Margaret passed away earlier this month in her 99th year from the effects of her dementia.

Article in Bendigo Weekly 

Posted on August 1st, 2008 by lilronan
Filed under: Media Articles, Premature Babies | 2 Comments »

We have just introduced a new area on the forum for premmie parent diaries. They are similar to a blog but are kept on the forum so you can share with forum friends what has been happening with your premature baby. You can start threads on your premmie baby, premature birth, family life, your premmies milestone delays, your babies achievements, weight loss or anything you wish to talk about.

If you wish to start your own diary you need to be a member of the forum www.lilaussieprems.com.au/premforum . Once you have registered reply to the following thread and a diary will be created for you.

www.lilaussieprems.com.au/premforum/diary-sign-up-t3572.html

Posted on July 22nd, 2008 by lilronan
Filed under: Parenting, L'il Aussie Prems, Premature Babies | 1 Comment »

This Friday is National Premmie Day!

Being apart of the premmie foundations committee we have been working on this day since last year and time certainly does fly! We have received A LOT of support from businesse, other parenting websites, the media and families which have all been fantastic.

Being a parent to a premature baby i have to say that this community is one that i would have never known if my son was never born early. There are so many amazing people in this world who volunteer their time and energy on helping families who have been in the same situation of having a premature baby. There are 1000s of premmie babies born each year and the number is growing. Each baby has had a unique experience and been through so much which is why our premmie babies need to be celebrated.

For a list of premmie events around Australia you can visit www.prembaby.org.au . There are also events listed on the L’il Aussie Prems forum www.lilaussieprems.com.au/premforum/australian-premmie-support-groups-f49.html

We would love to hear about your celebrations for National Premmie Day so be sure to join the forum and tell us all about it but remember have a great day!

Posted on July 22nd, 2008 by lilronan
Filed under: Media Articles, L'il Aussie Prems, Premature Babies | No Comments »

IF all had gone to plan, Elora De Bondi would have celebrated her first birthday days ago.

Instead, the gutsy Melbourne toddler - born almost four months premature and weighing only 319g - reached that milestone in January.

Ever since doctors told mother Adele her only child had “no chance of being born alive”, Elora has been a medical marvel.

Australia’s smallest surviving baby, Elora now tips the scales at 6.5kg and is charging ahead.

A thin feeding tube - and her place in the record books - are the only obvious clues to the 16-month-old’s dramatic start.

She spent her first seven months in the Royal Women’s Hospital. But Elora is now happy and relatively healthy at home in Montmorency.

Once “as long as a ballpoint pen”, she now stretches to 69cm and is not far off taking her first steps.

“She’s a very active and happy girl and very content. She loves playing and crawls like a speeding bullet,” Ms De Bondi said.

Since Elora arrived by emergency caesarean on January 29 last year, she has suffered “almost everything under the sun”, Ms De Bondi said.

Elora survived renal failure, chronic lung disease and many staph infections. Eating and swallowing are difficult because “she’s had so many tubes put down her throat”.

The Royal Women’s Hospital clinical director of nurseries, Sue Jacobs, said it was difficult to predict the quality of life for premature babies.

“Elora’s a bubbly, smiley and happy baby and that’s fabulous, but there’s still a lot of uncertainty about how she will be in the long term,” she said.

Ms De Bondi, 29, is now committed to supporting those who helped save her daughter, including the Royal Women’s Hospital Foundation and Life’s Little Treasures, a support group for Victorian families with premature babies.

To make a donation to the Women’s Foundation or Life’s Little Treasures, visit www.the womens.org.au and www.lifeslittletreasures.org.au.

Editor - Evonne Barry
Article from Herald Sun

Posted on June 22nd, 2008 by lilronan
Filed under: Media Articles, Development, Parenting, Premature Babies | 1 Comment »

LUKE Shah is only five, but he’s set to help thousands of premature babies.

Born almost three months early, Luke is one of 138 Victorian children whose brains were scanned as newborns as part of a world-first study.

Six years into the project, researchers from Melbourne’s Howard Florey Institute are now sending their subjects, including Luke, back to the scanner.

The long-term aim is to match brain abnormalities in premature babies with the problems they typically face later in life - and then prevent them.

Scientist Deanne Thompson, who presented the study at last week’s international Human Brain Mapping conference in Melbourne, said the key was in monitoring the “white matter” that links the two sides of the brain.

“Premature infants have a reduced connection between the two hemispheres and often have difficulties with thinking, reasoning, problem solving and language,” she said.

“So if we can identify that a baby is likely to have certain learning difficulties, for example (by looking at their brain scan), treatments such as speech therapy can be targeted to them early.”

Editor - Evonne Barry, Health reporter

Article from Herald Sun 

Posted on June 22nd, 2008 by lilronan
Filed under: Media Articles, Health Issues, Premature Babies | 1 Comment »

THE state’s most fragile newborns are being sent interstate because Victoria’s neonatal intensive care units are stretched to breaking point.

Over the past week, Victoria’s 72 neonatal intensive care cots have been full, forcing dangerously premature babies or mothers with high-risk pregnancies to be flown interstate for life-preserving care.

Four acute babies or mothers with high-risk pregnancies have been flown to Canberra or Adelaide in the past fortnight.
At the same time, the Brumby Government celebrated the opening of the new $250 million Royal Women’s Hospital, which has been widely criticised for being too small to cope with a rising birthrate.

The Department of Human Services yesterday revealed that 12 newborns from regional areas, who would normally be treated at Melbourne hospitals, had been flown interstate for care in the past year.

This was up from just three in 2005-06 and nine in 2006-07.

The new Royal Women’s is equipped with 18 neonatal intensive care cots but can accommodate an extra two when stretched — the same as the hospital it replaced.

Newborn Emergency Transport Service state medical director Dr Michael Stewart said the system was under pressure from a surge in demand.

He said no babies had been harmed by the recent journeys.

“It is obviously not ideal to have to do this, but we are looking at what is the safest and most effective for the whole system at the time as well as being very cognisant of the individual baby and their families,” he said.

“I don’t think in the ideal world it is good to move an adult, a child or a baby from one hospital to another or out of the state if they need intensive care, but the reality is that is occasionally what we need to do.

“These peaks can last for a few days to a week or so, sometimes they last several months, but the tip of the peak we hope just lasts for several days because that does get very difficult to manage.”

The new $1 billion Royal Children’s Hospital will have an increase in its number of neonatal intensive care cots when it is completed in 2011.

Monash Medical Centre and Mercy Hospital for Women are the only other Victorian hospitals with units to sustain the dangerously premature newborns who need help to breath.

Dr Stewart said the state usually coped with less than 60 babies needing intensive care at any one time and “cot-block” had improved since 2000 when there were just 48 Victorian neonatal intensive care unit cots.

But Royal Australian and New Zealand College of Obstetricians and Gynaecologists president Christine Tippett said there were simply not enough neonatal intensive care cots to meet demand.

“The four units are constantly running at or near capacity and the pressure on staff and equipment is at an unsustainable level,” she said.

Department of Human Services spokesman Steve Pivetta said babies in border areas were often closer to interstate hospitals and denied a lack of resources was to blame.

Editor - Grant McArthur
Article from Herald Sun

Posted on June 22nd, 2008 by lilronan
Filed under: Media Articles, Premature Babies | 1 Comment »

MILICA shouldn’t be here yet. This five-week-old baby, born three months’ premature, should still be a kick in her mother’s belly and a half-decided name. Now her home is a plastic tub, a mess of monitor wires and a tube pressing air into her lungs.

Next Saturday she’ll have her second unexpected change of address, as one of the first babies to move from the old to the new Royal Women’s Hospital, which was officially opened yesterday. A team of specially trained paramedics will carefully lift her from her cot in the crowded intensive-care nursery of the dark and ageing Carlton premises.

Strapped to mobile life-support machines, the tiny 862-gram package (already 300 grams heavier than when she was born) will move three blocks down the road to the $250 million Parkville building, with its bright, spacious wards. There she will continue her fight towards independence.

Compared with Milica’s story so far, the move will be a walk in the park. Twelve years ago her mother, Fiona Nika, 36, of Hillside, was told she could not have children. She and husband Branko accepted it. “We raised dogs and so forth.”

Then, two weeks before Christmas, they were told they were expecting a child. That shock was enough. But five months later Mrs Nika woke in pain and the local hospital diagnosed severe pre-eclampsia.

Within hours she was at the Royal Women’s, being told her 26-week baby would have to enter the world in order to save both their lives. Doctors kept Milica inside Mrs Nika as long as possible: when a baby is this premature, every extra day in the womb adds to their chance of survival. But Mrs Nika’s condition worsened and Milica started to struggle. “It was touch and go for both of us,” Mrs Nika says.

Her husband remembers Milica being taken out. “There was no noise at all,” he says. She wasn’t breathing. Doctors forced air into her throat. For a moment, she started breathing and gave a tiny squeal. “That was the first time I thought she was going to make it.”

Groggy from the caesarean, Mrs Nika caught a glimpse of her daughter as she rushed past to intensive care. “I just saw this shape — ‘Oh, she looks pretty’ — then they took her.”

Mrs Nika says next weekend’s move will be one of the longest days of her life, as she waits to hear that her “little miracle girl” is safely at Parkville. “It will be the longest time I haven’t seen her … Come 6 o’clock (when parents are allowed into the new hospital) I’ll be kicking the door down.”

Article from the age

Posted on June 14th, 2008 by lilronan
Filed under: Media Articles, Premature Babies | No Comments »