April Newsletter                     

                                                   2009

Welcome to the L'il Aussie Prems April 2009 Newsletter.

Since our March newsletter we have 24 new registered members. We welcome you all to our community and please be sure to introduce yourself and your little premmie babies to us, we would love to meet you.

We would like to offer congratulations to our prem babies and our members who celebrate their birthday in April. Chloe & Emily (32w), Adam, Kate (37w), Robbies Mum, Jessica, Thomas and Alexander (24.4w), Ella (27.3w), Leigh roy (36+1), Nixon (33w) and everyone else celebrating their birthday this month, happy birthday! If you or your childs birthday is not included but should be please reply to our birthday thread on the forum so we don't miss it next year!

One of our amazing members came up with an idea to help raise money not only for the members but also for the website. (Le Bec) decided to call her idea the "The Virtual Market Stall" where members can sell their unwanted items and give a percentage to the website. The stall has been a total hit and to date has raised over $200 for L'il Aussie Prems. If you wish to participate in our next stall please follow the threads in our trading room.

Miracle Babies are celebrating their 4th Annual Ball on Saturday 30th May 2009. If you wish to attend their amazing event please visit www.miraclebabies.com.au for more information. Proceeds from their event go towards equipment and resources for Liverpool Hospital's Newborn Intensive Care Unit.

L'il Aussie Prems has a facebook page so be sure to become a fan.

We hope you all have a great month.

L'il Aussie Prems Team

In this issue:

* Welcome

* Latest Forum Topics

* Premmie Foundation Committee

* Local Premmie Hero Awards

* Article ~ Special Needs Baby

* Website Features

* Latest Competition

* Premmie Baby Of The Month

Our Sponsors

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Our Supporters

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Latest Forum Topics

Would you like to be apart of the National Premmie Foundation Committee?

Medical staff can define a child as having “special needs” for a variety of reasons. From having a child that requires additional therapies such as speech, physio or occupational therapies due to prematurity to more intense special needs such as a life long diagnosis that will require every day help and extra assistance. Coming to terms with the fact that your child has “special needs” can be scary, unexpected and confronting. It is normal to go through a period of intense grief. When my daughter was first diagnosed as having special needs I searched the Internet looking for ideas to help me cope, sadly there is not a lot of information out there. So I have compiled a list of things that helped me get through that scary time.

        1.    Cuddle, touch and kiss your child as much as possible.

Even when you don’t feel like it, or part of you wants to reject the idea of a “different” baby, cuddle and kiss your baby as much as you possibly can. Get to know your baby beyond their “special need”. Their special needs are such a small part of them as an individual. Remember your child did not ask for their life to be difficult and even when tiny need all the reassurance that someone will be there for them, that is your job.

2.  Take one day at a time.

Try not to look too far into the future. Focus on the small goals for your child each week rather than worry about what might happen when they are 5, or 15, or 25. If you have close goals, things will seem more easily achievable and less mountainous.

3.  Meet other parents living with the day to day realities of a child with special needs.

Often when you receive a diagnosis of special needs, you are provided with a list of worst case scenarios. Meeting other parents with a child with the same diagnosis (if possible) as your child, will enable you to understand the reality of the diagnosis which is more often than not, better than you have been led to believe.

4.   Try not to worry about things that don’t exist yet.

When my baby was diagnosed I became terrified that my marriage would fail, that we would have no money and lose our house, that people would be cruel or mean to my baby, or treat her differently and that she would develop all of the symptoms of her medical condition. In reality, two years on, my marriage is stronger than ever, I have not lost my house and although we don’t have mountains of money, we manage. Yes some people treat my daughter differently, but mostly people love her more due to the battle she has had to fight to be here. And as for the symptoms of her condition, yes she has some but she also has missed out on others. Things are never as bad as your mind can make them out to be.

5.   Talk to someone about your worries

Find an understanding counselor, friend, priest, GP or stranger (preferably not your partner as they are going through their own journey) and talk to them about your fears and worries. Sometimes even just by letting them out, your problems may seem smaller than you had made them in your mind.

6.   Be kind to yourself

You will hear this over and over again. If you don’t eat properly and get enough rest you will fall apart and make matters worse. It is important that you look after yourself so you can look after your bub! Understand that you will have bad days where you feel negative about you and your families future, and forgive yourself for them but move on. If you feel stuck and can’t move on, seek professional help before it becomes a big issue. The government provides free counseling through medicare once your GP has referred you so see your GP for referral and further help. Asking for help is hard, as can talking to a stranger about your problems, but you won’t be doing yourself any favors by trying to be “brave”. No one has to know you are seeing someone for help, and everything you share is confidential.

7.   Access as much help and as many services for your child as you can

Your paediatrician can help you access any services your child may need such as early intervention, physio, occupational therapy, medical support, speech therapy, aids or equipment.

8.   Surround yourself with available, knowledgeable medical staff and therapists

You don’t want a doctor that has never heard of your childs condition except in a medical text book, or is away a lot and impossible to book an appointment with, or isn’t available in times of emergency.

Nor do you want a physio that has experience only with children with high muscle tone when your child has low tone. Or a paediatrician who can’t relate to your child or your situation in any way.

Get the picture? Even with free or government/medicare funded programs you have the right to ask for credentials and to question if your child is getting the most appropriate and up to date care.

9.   Be your childs advocate

No one else is going to advocate for your child unless you are already doing it.

If you don’t like the way your child is being treated by someone, be that medical or professional, stand up for them and say something. If you have heard that surgery/therapy or medication is an option for your child, research it and bring it up with your medical team. If you think your child should be in a different program, organise it. If you believe your child would shine in a “mainstream” environment, push for it.

10.  Become an expert on your child and their condition

Research, research, research! Join any applicable organizations, read the newsletters, meet with other parents, there is likely to be a yahoo user group compiled of parents who are in similar situations, put yourself out there and get to know your child’s allies.

Knowledge is power!

11.  Remember your other children

It can sometimes be hard being the sibling of a child with special needs, allocate time to focus on them and their struggles and achievements. If resentment or jealousy appears or if your other children don’t seem to be coping, consider counseling.

12.  Take time out for your partner

Having a baby is exhausting and having one with special needs can be very time consuming.  It is easy to forget about your partner and focus entirely on your child. Try to take time out for your partner. Depending on your child's needs you may be entitled to funded respite care (where you are able to have a registered nurse come and look after your child so you can take time out). An idea might be to spend some of this time reconnecting with your partner and working on your relationship.

13.  Finally – Be Positive and Have Hope

Medical advancements are happening all the time all over the world. Who knows, a cure for your childs condition or symptoms could be just around the corner. Be positive about your child as much as possible, the more positive you are, the more positive other people will be towards your child and the more positive your child will be about their own situation. Encourage people (incl medical staff) to be respectful and positive around your child and discuss negative or complex issues away from where your child may hear. Even tiny babies can pick up on negativity and you don’t want your child feeling guilt over their special needs.

Lily - 2 years old

Latest Competition

Skip Chasey is a fantastic new business which specialises in handcrafted baby and children's clothing, toys and accessories and they have generously donated a fantastic prize for this month’s competition.  Enter now for your chance to win a set of hand crafted items including a burp cloth, bib and nappy clutch.

To enter
On the website there is a hidden image of a baby duck. You need to find this image then using our entry form tell us on what page you found the image. (hint - the image is not hidden on the forum, blogs, or directory).

Competition opens 20th April 2009 and closes on the 30th April 2009.

Good luck & good hunting! 

Premmie Baby of The Month - April

Oscar and his mum Shazz

Where was Oscar born? He was born at the Lyell McEwin Hospital, in Elizabeth, SA

What was his gestation? He was 35wks

And his birth weight? 1385gms or 3pound 1 ounce

What do you remember most about Oscar's time in hospital?

I think it would be every time he did exactly what he wasn't supposed to do. He wasn't supposed to be taken out of the incubator until he reached 1.8kg but he was out just after a week of being in there, only having to be gavaged. (He actually went home at that weight). The night I stayed home to fully breastfeed him in hospital without the calories, he was only going to go home if he had gained (which the nurses told me never happened), and he gained 20g that night. I cried I was so happy. Theres just so many moments I cried for being so scared and then so happy. I'm a bit more tearful now because he spent his first Easter in hospital, so this one will be his first one home.

Does he have any ongoing health issues?

We were very blessed that he doesn't have any organ problems as he was in and out of hospital with broncolitis in the first couple of months and were worried about his lungs, but has been cleared. Other than that he has severe club feet and will be having a second operation in May to help his heels. This will be an ongoing thing but hopefully will start sorting out once he starts running around.

What has been your proudest moment since he came home?

Everything, we were told he would be 5 wks behind in everything and wouldn't be able to do much because of his size. He rolled, he crawls, he stands, he says mum and dad. Nothing could make me prouder then what he has done..especially now because he starting to kiss.

What is your top tip for other mothers of premmie babies?

It is a roller coaster ride. Never be afraid to ask for help and always talk about what you are feeling. They will always be your fighter.

Thank you

L'il Aussie Prems Team

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