Parenting | L'il Aussie Prems Blog

Happy Father’s Day

September 7, 2008 By Finisterre Leave a Comment

Father’s Day: the media is full of images of happy, healthy children rushing to give their much-loved if slightly hopeless father a blokey gift, but when your little one is still in hospital the stereotypes are meaningless and all you really want is to have your child come home.

What is the role of a father of a premature baby? When my daughter was born unexpectedly early, my husband missed the birth completely – no magical memories of cutting the cord for him, he wasn’t even able to hold my hand. While I found myself on early maternity leave and able to spend all day in the NICU, he was still at work – sometimes far away. It made no sense for him to take his one week of paternity leave until we brought our baby home, at which point his employer initally refused to grant him the leave because it was more than 3 months after her birth!

My husband shared all my anxieties about Talia’s health, not to mention the broken sleep as I rose twice a night to express, without the joy and reassurance of being able to hold his daughter for days on end. He visited the nursery in the quiet of the evenings when the doctors were gone and the lights were dimmed, and sang her soft songs of love below the beeping of the monitors.

Now more than a year later, he still sings her songs. He holds her tight and reads her books, sits on the floor playing with her as soon as he gets home from work, pushes her on the swing in the park and rejoices in every little milestone. He knows how lucky we are to have her, and I know how lucky she is to have him too.

Filed Under: Parenting Tagged With: fathers day, newborn babies, Premature Babies, premature baby, premature birth, premmie baby, premmie health, premmie support network, preterm birth

Photographing and scrapbooking your NICU experience

August 25, 2008 By Finisterre 2 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.)

NICU scrapbooking page 1

NICU scrapbooking - page 6

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

Filed Under: NICU Life, Parenting, Premature Babies

Premmie Parent ~ Pregnant Again..

August 7, 2008 By Julia Toivonen Leave a Comment

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.

Filed Under: Parenting, Premature Babies

Premmie Parent Diaries

July 22, 2008 By Julia Toivonen 1 Comment

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

Filed Under: L'il Aussie Prems, Parenting, Premature Babies

Australia’s smallest baby is a living miracle

June 22, 2008 By Julia Toivonen 1 Comment

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

Filed Under: Media Articles, Parenting, Premature Babies, Premmie Baby Development

PREM OF THE MONTH – JUNE

June 10, 2008 By Julia Toivonen Leave a Comment

Lily, Ruby, Maddie and their mum Lucinda

Where was Lily born?
Lily was born at the John Hunter Hospital, Newcastle. I was transferred there from North Gosford Private once they realized there were complications. We also spent a week in the Childrens Hospital at Westmead while she underwent cardiac surgery for a Patent Ductus Arteriosus.

What was her gestation and birthweight?
30 weeks and 1300 grams

Do you know why she was born premmie?
Lily had major complications in utero, in addition to the fact that I have an irritable uterus and my placenta started to fail, resulting in IUGR.

How long was Lily in hospital?
NICU for 1.5 months, SCN for 1.5 months. 3 months less one day all up. She came home weighing 2kg.

Other interesting stats?
CPAP for 24 days (due to PDA we just couldn’t get her off it!) then low flow oxygen for 6 months. She finally came off it on the 1st of March 2007.

What do you remember most about your NICU journey?
Now I mostly remember how fantastic the hospital staff were to me and my family and continue to be today. At the time it was so unbelievably hard you wouldn’t wish it on your worst enemy but the bad memories have faded with time and now we are just thankful that the wonderful doctors didn’t ever give up on our precious baby.

What has been your proudest moment since Lily came home?
Probably when she started walking. She has only just started in the last two weeks and we were told that she wouldn’t walk for a very long time. She continues to prove us all wrong with her strength and determination!

How did it feel to be pregnant again with a high risk of premature birth?
Terrifying! I really wanted to have the “normal” experience I had missed out on the first time around. But then as each day passed I began to prepare myself for another NICU or SCN journey.

At what gestation and weight were your twins born?
35 weeks, 1800 grams and 2400 grams

Any idea why they were born prem?
Maddie (the bigger twin) was hogging all the nutrients so Ruby developed IUGR. The doctors were concerned about how healthy she would be if she remained in utero so they booked me in for an emergency c-section. The day I went in to have them I ended up in labour! Both were born via c-section that day which was lucky as Ruby was badly tangled in her cord.

How did it feel to be back in the Special Care Nursery with your twins?
It was hard too, obviously not as hard as when Lily was born but I had to have my twins at a different hospital than the one I had had Lily at and having to learn the different processes really got to me. I guess in a way I felt I knew how to do it all so didn’t need someone making me do it a different way. The nurses were used to parents that were unsure of their tiny babies whereas my husband and I were confident and experienced with little our babies.

Also the hospital didn’t make any exceptions for the fact that my babies were in SCN. I was put in a ward with 5 other women and their babies and listened to their babies cry all night while mine were a 1km walk away (which I couldn’t do as I had had a bad c section). Because I didn’t have a screaming baby with me I was left to my own devices a lot, which also meant I could wait up to an hour to have a nurse just answer my call button.

One of the biggest challenges was having Lily as well. I lived at the hospital for 2 weeks until I could bring the twins home (weighing 1900 grams and 2500 grams) but I felt guilty as Lily wasn’t coping very well at home without me so there was that challenge too.

What is your top tip for other mothers of premmie babies?
I guess I could say try and “normalise” things as much as possible. So cuddle your baby/s as soon as you can and feed them, and bathe them and just love them, even if they feel tiny and fragile and you are scared to touch them in case you hurt them. They need to know you are there for them from the very beginning.