Life's Little Treasures Foundation Newsletter - March Edition

President‟s welcome We are already 3 months into 2011. I must stop writing “Hope you had a great Christmas and New Year”!

I can feel that 2011 is going to be a big year on all fronts. My daughter has just started high school and we have all embarked on a new adventure and experience with her. I had forgotten how different high school is from junior school. It‟s all about independence, responsibility, organisation and resilience – giving our children the foundations they need to become mature responsible adults.

What‟s inside?

President‟s welcome Committee, vision and aims Theme: Autism Spectrum Disorder Where to get assistance Parent‟s story: Alexander & Thomas Bradley Diary Dates Welcome to new members Cooks corner & Our sponsors Register your Precious Prem

Away from family life, there is much going on at LLT. We had our strategy day earlier this year and have a few things lined up for the future. One of the main aims of our strategy was looking at the direction that we want to go in the future. As an organisation, our focus in the past has been on premature babies and their families as this was the journey that we had all been through. However over the years, this has changed as we have evolved. As a result of our discussions, we have come to the realisation that our aim as an organisation is to provide best outcomes for babies who go through the neonatal/special care journey. Hence we now have a new strap line and mission statement.

Towards the end of May, we are organising an information night.

This will be an ideal opportunity for anyone who is keen on volunteering or wanting to find out more about LLT to come along and meet us in an informal fun way.

We have some exciting news to share. We are very proud to announce our first collaboration with a maternal child health centre to run a Little Treasures support group. Rebecca Long at Sunningdale MCH centre has launched this group which will be running first Friday of every month. Details of this group will be on our website soon. A big thanks to Rebecca who has been amazing in getting this group together. This will be a fantastic opportunity to provide support to families in conjunction with the maternal health nurse community.

Some of you may recall that we wanted to carry out a makeover of the family room on the NICU floor at Monash Children‟s Hospital.

This project is finally underway and we can‟t (as I am sure are all the parents and staff at Monash) wait to see the final results. It will be wonderful for families to finally have a place where they can retreat and have a bit of rest and respite from the hustle and noise of the neonatal unit.

Continued on page 3...

Disclaimer: Life‟s Little Treasures Foundation recommends that you should consult your doctor or other health care provider if you have any concerns about your baby‟s or child‟s health or development. All opinions of the authors or contributors and are not necessarily those of the Life's Little Treasures Foundation. The editors take care to avoid mistakes but don‟t accept liability for clerical or printer‟s errors.

Newsletter March 2011

© 2011 LLT

LLT ©2008

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Committee President Vice President Treasurer Grants Marketing and Corporate Sponsorship Graphics design Newsletter Ballarat branch PR & Digital Media General members

Parool Shah Shusannah Morris Karin Vosmansky Karen Peters Alex & Meaghan Montgomery-Aldis Rachael McKay Rowena Crawford Karen Pengelly Liz Van Dort Cathy Hill, Carolyn McDonald & Emma Eads

Contact details If you would like to contact any of the above members, please either email us at: contact_us@lifeslittletreasures.org.au or call 1300 697736 Life‟s Little Treasures Foundation PO Box 476 ABN 94 232 874 269 Chadstone Centre RP, Victoria ACN 143 037 834 Phone:1300 MYPREMMIE (1300 697 736) www.lifeslittletreasures.org.au contact_us@lifeslittletreasures.org.au Founding member of the National Premmie Foundation

Our vision & what we do Who are we?

The Life‟s Little Treasures Foundation is an Australian charity which is dedicated to providing information, support, friendship and assistance to families of children born sick or prematurely. Our services are available in the hospital (neonatal and special care units) and in the community when families come home. It is run by volunteer parents who themselves have had a sick or premature baby and understand the challenges that these babies and families face.

Our vision To improve the lives of premature and sick babies by providing information and assistance to families and supporting research.

Services  Introduce programs, which provide practical and emotional support to families who have babies that have spent time in intensive/special care nurseries.  Provide easily accessible and relevant information for families.  Offer continued assistance to families to ease the transition from hospital to the home environment  Increase community awareness of the unique issues faced by families of these special babies.  Educate & provide assistance to healthcare providers who support families of premature or sick babies  Support & participate in research.

Committee, contacts, vision & services LLT ©2008

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President‟s welcome cont‟d After last year‟s inaugural “Walk for Prems”, we have had many people asking us whether we are going to run it again this year. The feedback was so fantastic and positive that we are planning to do it again this year. We are are waiting for Park Victoria to come back to us but in the meantime please put Sunday 13th November in your diaries and let all your friends and family know. Once we have confirmation, we will provide you with more detail. I am sure this year‟s event will be even bigger and better than last.

Before I go, I would like to say that the reason why we are where we are today is because of you. Your ideas and feedback (negative and positive) are invaluable to us in helping us grow and develop services that are beneficial to parents and health professionals. Please feel free to email us or contact us if you have any suggestions that you would like to share with us. Over the next few months, we will be updating our surveys. We would greatly appreciate it if you can take a bit of time out to fill them. The only way we can provide the services you need is if you tell us.

On that note, I will say goodbye. I hope to see many of you at some of our upcoming events.

Best wishes, Parool

Information Night Tuesday 24th May Are you or do you know anyone who is either interested in sponsoring or volunteering for LLTF? If you are, we are organising an information night on 24th May at Fashion Lounge. It will be an informal night where you will get the opportunity to find out about what we are doing at LLTF and where we are heading. As we do not get any funding to run LLTF, we rely completely on volunteers to help us continue our services.

This is an ideal opportunity for anyone who has been touched by the premature/sick baby journey to help give back to those who are currently going through it. You don't necessarily have to be a parent of a prem/sick baby to volunteer - it can be anyone - family, friends or anyone who has time to spare and would like to give back to the community.

Some of the areas that we are looking to recruit volunteers for include hospital support (co-ordination and/or rostering), newsletter editor, fundraising, general admin, community support, events volunteer, sourcing and packing gifts and donations amongst others. Alternatively, if you have a skill that you feel would be of benefit to us and would like to volunteer your expertise in this area, please let us know. We are open to any help we can get.

To register your interest email us at volunteer@lifeslittletreasures.org.au.

Look forward to seeing some of you on the night.

Photos of some of our volunteers

Information night LLT ©2008

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Autism Spectrum Disorder In most cases the causes of ASD are unknown. Today 1 in 160 individuals are diagnosed with autism. http://www.autismvictoria.org.au http://www.abia.net.au/

What is Autism?

It is best described as a group of disorders with a similar pattern of behaviour in three key areas communication, social interaction and imaginative thought.

The currently favoured term is Autism Spectrum Disorder, with the word 'spectrum' used because no two people with an Autism Spectrum Disorder are exactly alike.

As the term suggests, there is no one diagnosis or label. Rather there are several labels that place people at different points on the spectrum. At one end of the spectrum diagnostic labels such as "Asperger Syndrome", "High Functioning Autism" and "PDD-NOS" are used. At the other end of the spectrum you will find labels such as "Autism", "Classic Autism" and "Kanner Autism".

Irrespective of the diagnosis or where they fit on the spectrum, each child or adult diagnosed with an Autism Spectrum Disorder is developmentally delayed, has significant difficulties participating in day-today life and requires sensitive understanding and specialist support and intervention.

These disorders have three common features which can range from very mild to very severe. Importantly, the commonality of all children with an Autism Spectrum Disorder is problems with:

Social interaction Verbal and non-verbal communication Repetitive behaviours or interests In addition, many children with an ASD are abnormally sensitive to sounds, textures, tastes and smells.

For some, the feeling of clothes touching their skin can be unbearable and a loud noise caused by a vacuum cleaner, a plane, or lightning may cause them to cover their ears and scream.

In some children hints of future problems may be apparent from birth. Others begin life well enough but between 12 and 36 months the differences in the way they react to people become apparent.

The consensus is that ASD is caused by a biological or organic dysfunction in the brain. To date there is no known cure.

Diagnosis There is no specific diagnostic test for Autism Spectrum Disorder. The best way to get a diagnosis is via a multi disciplinary assessment. For children, this involves having your child tested by a number of professionals, who will provide you with the information you need to make decisions about program and treatment approaches. For adults, either a psychologist or psychiatrist experienced with Autism Spectrum Disorders can make a diagnosis.

The age of diagnosis these days ranges from approximately 18 months through to adulthood, depending on circumstances. A diagnosis of Autism Spectrum Disorder will only be made if the 'autistic like' pattern of behaviour is apparent before the age of three years. Sometimes a provisional diagnosis is made if the child is very young, and a reassessment at a later date is recommended.

ASD LLT ©2008

5 Autism In Autism the impairments in the social and communication areas are severe and sustained and clearly present before the age of three years. The child is often anxious, has poor attention and motivation, responds unusually to many different stimuli and is observed as being 'different' from other children.

Speech is delayed, or largely absent. A strong reliance on routine is apparent, and the child can have a range of ritualistic behaviours such as toe walking, hand flapping and finger gazing. The child/adult with autism may also be intellectually disabled.

High Functioning Autism High Functioning Autism is a loosely used term (not defined in the diagnostic criteria) to describe a child or adult who meets the criteria for a diagnosis of Autism, but is not as severely affected as the more classically autistic person.

Asperger Syndrome In Asperger Syndrome there are severe and sustained social impairments, but impairments are not as severe in the language and communication area. Speech usually develops within the normal age range, but the ability to communicate effectively (known as language pragmatics) is impaired. The impairments seem more subtle in the very young child, and become more apparent as the child reaches pre school and school age. The Asperger person is usually in the normal intelligence range.

PDD-NOS Pervasive Developmental Disorder - Not Otherwise Specified (PDD-NOS) is the diagnosis given for children who present with some of the characteristics of either Autism or Asperger Syndrome, but not severe enough for a diagnosis of either of these conditions. http://www.abia.net.au/ ASD & Communication By the age of three most children have passed predictable milestones on the path to learning language.

By their first birthday a typical toddler can say a few words, will respond when they hear their name being called, can point to a toy they desire, and can communicate 'yes' or 'no' without difficulty.

Some infants - who later show signs of ASD - will coo and babble during the first few months of life and then stop. Some may be delayed, developing language skills as late as the ages of five and nine whilst others remain mute throughout their lifetime, using pictures or sign language to communicate.

Those who do speak will often use language in an unusual way. For example, some may only speak single words, while others will repeat the same phrase over and over, or parrot what they hear (a condition called echolalia).

For most children with an ASD the 'give and take' of a normal conversation is difficult. However, it is not unusual to hear an older ASD child deliver a monologue on a favourite subject without giving anyone else a chance to comment.

For the ASD child body language is also difficult. Facial expressions, movements, and gestures don't always match what they are saying, and tone of voice might not reflect their actual feelings.

ASD & Relationships Early in life we gaze at faces, turn our attention to listen when we hear voices, and smile when we feel joy or happiness.

ASD cont'd LLT Š2008

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ASD cont‟d For the child with an ASD these so called normal interactions are difficult to understand and grasp.

Even in the first few months of life the ASD child may avoid eye contact with others. They may seem indifferent to the people around them and may prefer being alone. Often they resist attention and show disinterest in being cuddled. Later, they don't turn to their parents for comfort, or respond to parental anger or affection in the way other children do.

Research has shown that this does not indicate a lack of affection for their parents; children with ASD just lack the ability to show how they feel. For many parents this is difficult to cope with. After looking forward to the joy of cuddling and playing with their child, they feel devastated by their child's lack of warmth.

Children with an ASD are also slower in learning to interpret what other people are thinking and feeling.

Non-verbal signals such as smiling, winking, or pointing seem to have no meaning to them. Without the ability to interpret gestures and facial expressions, life becomes confusing. People with an ASD have great difficulty in putting themselves "in someone else's shoes".

While the typical five-year-old can understand that different people have information, feelings and goals differing from their own, the ASD child lacks this level of perception. This makes him/her vulnerable and prone to misinterpreting other people's behaviour.

Sometimes they may also have difficulty regulating their own emotions. This can result in immature behaviour such as crying in class, or inappropriate verbal outbursts often in public places. In frustration, some ASD children will bang their head, pull their hair, or bite their arm.

ASD & Repetitive Behaviour One characteristic behaviour of children with ASD is the tendency to repeat odd movements such as flapping their arms or walking on their toes.

This kind of repetitive behaviour may also take the form of a persistent, intense preoccupation. They might spend hours lining up their cars and trains in a certain way rather than playing with them in the way other children do. If someone accidentally moves one of the toys, they may also become extremely upset.

Later, the child might become obsessed with learning all about vacuum cleaners, train schedules, or lighthouses. Often there is a great interest in numbers and statistics.

Children with ASD also have difficulties in coping with change. A different daily routine or an alteration in their physical environment can seem very disturbing. http://raisingchildren.net.au Early signs of ASD Some early signs of ASD – usually seen in the first two years – are listed below. Some children will have many of these early warning signs, whereas others might have only a few. Also, any loss of social or language skills during this period is cause for concern.

Social:

  

doesn‟t consistently respond to her name



doesn‟t show interest in other children & doesn‟t enjoy or engage in games such as peekaboos.

doesn‟t smile at caregivers doesn‟t use gestures independently – for example, she doesn‟t wave bye-bye without being told to, or without copying someone else who is waving

ASD cont‟d LLT ©2008

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

doesn‟t use gestures – for example, she doesn‟t raise her arms when she wants to be picked up or reach out to something that she wants



doesn‟t use eye contact to get someone‟s attention or communicate – for example, she doesn‟t look at a parent and then look at a snack to indicate she wants the snack



doesn‟t point to show people things, to share an experience or to request or indicate that she wants something – for example, when she‟s being read to, she doesn‟t point to pictures in books and look back to show the reader

  

doesn‟t engage in pretend play – for example, she doesn‟t feed her baby doll doesn‟t sound like she‟s having a conversation with you when she babbles doesn‟t understand simple one-step instructions – for example, „Give the block to me‟ or „Show me the dog‟.

Behaviour

 

has an intense interest in certain objects and becomes „stuck‟ on particular toys or objects



is easily upset by change and must follow routines – for example, sleeping, feeding or leaving the house must be done in the same way every time



repeats body movements or has unusual body movements such as back-arching, hand-flapping and walking on toes.

focuses narrowly on objects and activities such as turning the wheels of a toy car or lining up objects

Sensory  is extremely sensitive to sensory experiences – for example, she is easily upset by certain sounds, or will only eat foods with a certain texture



seeks sensory stimulation – for example, she likes deep pressure, seeks vibrating objects like the washing machine, or flutters fingers to the side of her eyes to watch the light flicker.

Early Intervention ref: www.autismawareness.com.au (please go to this site for detailed information on the following interventions).

Behavioural Interventions: Applied behaviour analysis, Discrete Trial Training & Lovass Program.

Also see ABA programs at www.learningforlife.com.au Therapy Based Interventions: Speech, Occupational & Sensory Integration Therapies, Picture Exchange Communication System.

Combined Interventions: Treatment & Education of Autistic & related communication handicapped children (TEACCH), Learning Experiences - An alternative program for preschoolers & parents (LEAP) & The Hansen Program (More than words).

Complementary and Alternative Medicines: Gluten Free, Casein Free diets, Chelation, With holding MMR Vaccine, Vitamin B6 & Magnesium & Yeast overgrowth.

Developmental Interventions: Greenspans DIR/Floor time & Relationship Development Intervention (RDI).

Biologically Based Interventions: Medications.

Spotlight ASD cont‟d on mental health LLT ©2008

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Where to get assistance for Autism Spectrum Disorder ASD is a very big topic & it is not possible to cover all websites and information in one newsletter.

Please research sites listed below & on the following page.

The Learning for Life Autism Centre is a not for profit organization set up to subsidise home based intensive ABA programs. At Learning for Life a full service model is offered whereby a team of therapists and a supervisor is provided to the family. Parents and the team are trained and intensive therapy is designed for the individual needs of each child. www.learningforlife.com.au Helping Children with Autism http://www.austismvictoria.org.au/helping_children/ School yrs & choosing a school (this also lists some schools) http://www.autismvictoria.org.au/services/school_years.php#choosing Independent Schools of Victoria / Specialist Schools http://www.independentschools.vic.edu.au/parents/information/special-needs.htm http://www.education.vic.gov.au/healthwellbeing/wellbeing/disability/default.htm Funding Federal government funding initiative to assist families and carers of children aged zero to six diagnosed with an ASD. Up to $12,000 funding ($6,000 max per financial year). http://www.austismvictoria.org.au/helping_children/fahcsia_funding.php Or http://www.autismvictoria.org.au/helping_children/autism_initiatives.php Link to Medicare site: http://www.health.gov.au/internet/main/publishing.nsf/Content/health-medicarehealth_pro-gp-pdf-allied-cnt.htm Frossa Mrakas Provides Parent Coaching & Support Ph: 0418 174 545 E: frossamrakas@hotmail.com Asperger Services Australia http://www.asperger.asn.au/ Parenting with Confidence - how to parent your child with ASD: Want to better understand the behaviour of your ASD child? Interested in meeting parents who are facing the same challenges? Tired of parenting courses that don't address the unique behaviours and challenges of an ASD child?

Parenting with Confidence is a six week course specifically developed for parents of children with an ASD. The course is facilitated by a trained professional with extensive experience working with families and children. This course covers the following topics:  Why does my child do that?  Understanding challenging behaviours.  Planning for positive behaviour.  Responding to challenging behaviours.  Developing a behaviour plan. download a registration form from this site http://www.abia.net.au/

Where Spotlight to on getmental assistance health for ASD LLT ©2008

9 Autism Spectrum Australia (Aspect) The country's largest not-for-profit autism specific service provider in Australia. Helping people on the autism spectrum achieve their potential. Aspect builds confidence and capacity with people on the autism spectrum, their families and their communities.

Ph: 1800 288 476 http://www.autismspectrum.org.au/a2i1i2l253l114/about-aspect.htm

AUTISM VICTORIA

AUTISMHELP.INFO

Peak body for Autism Spectrum Disorders in Victoria. Their aim is to improve the quality of life for people affected by Autism Spectrum Disorders, their family and carers. Contact them to locate your nearest support group. www.autismvictoria.org.au\

An initiative of Gateways Support Services. The site aims to increase awareness of ASD 10-12 Albert Street, Geelong West VIC 3218 Ph. (03) 5221 2984 info@gateways.com.au www.gateways.com.au www.autismhelp.info

DEVELOPMENTAL DISABILITIES CLINIC - MONASH CENTRE If a child has a suspected developmental delay and / or disability, they can be referred to the clinic for an a ssessment and for information on additional services. Referral required from GP, Paediatrician or other health care professional.

246 Clayton Road, Clayton, Vic 3175 Ph: (03) 9594 2399 www.southernhealth.org.au

PINARC SUPPORT SERVICES

GATEWAYS

Provides a full range of services from early childhood through to adulthood.

Based in Ballarat, they provide community services in the Grampian Region for local people with a disability, children with developmental concern, their families and carers.

King Street. Ballarat, VIC 3350 Ph: (03) 5329 1300 www.pinarc.org.au

For families in the Barwon-South Western Region. Services are provided to children with developmental delay, to children with developmental delay, autism spectrum disorder or a diagnosed disability, and their families. Services include autism assessment and diagnosis, early intervention services, preschool support and inclusion, and assistance with transition to school planning.

Ph: (03) 5221 2984 www.gateways.com.au

ROYAL CHILDREN’S HOSPITAL

RCH - ADHD ASSESSMENT CLINIC

Department of Child Development and Rehabilitation Provides care for children with: developmental delay, cerebral palsy, intellectual disability, autism spectrum disorder spina bifida, acquired neurological problems and other developmental disabilities.

Ph: (03) 9345 5898 Email: dev.med@rch.org.au www.rch.org.au/cdr

A multidisciplinary assessment of children aged 4 to 8 years with ADHD. The children will undergo paediatric,psychology, and special education assessment, as well as a school visit.

A GP or specialist referral is required for the clinic. Referrals to the ADHD Assessment Clinic come from parents, teachers, doctors And paediatricians. Enquiries about whether a child is suitable for the program can be made by contacting the ADHD Clinic Coordinator Ph: (03) 9345 6662 Email: emma.sciberras@mcri.edu.au www.rch.org.au/ccch/services.cfm?doc_id=11829

ATTENTION DEFICIT DISORDER VICTORIA (ADDVIC) Support groups for children, adolescents and adults with ADHD and co-existing disorders P.O. Box 417, Bayswater 3153 Ph: (03) 9890 2144 (Metro Callers) 1800 233 842 (Country Callers) Email: add-vic@hotmail.com http://home.vicnet.net.au/~addvic/

LLT Š2008

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Bradley Family‟s story Thomas & Alexander Bradley- Miracles born at 24.4weeks After 4 years of trying to conceive we turned to IVF to try and realise our dream of becoming parents.

We were so lucky when after just one cycle of IVF we received the news that we were finally pregnant.

We were elated, I remember coming home from work and doing a pregnancy test just to make sure!

At our first scan, we discovered that we would have an instant family, we were having twins. We were in disbelief but excited all the same. Our dream of being parents was finally coming true.

Scans and checkups were all going well, we were booked in to begin Ante – natal classes and had booked into the private hospital near us. We had started to put the nursery furniture and other bits and pieces on lay-by. Things were going great up until the weekend before Easter 2007. Our lives changed forever.

I woke early on Thursday 5th April 2007, no pain just wet. I was a little embarrassed and thought I had just wet myself...I had heard of having a weak bladder but I didn‟t expect it to start this early into my pregnancy. I crept to the bathroom trying not to wake my husband. I soon realised that something much worse was happening & in tears I told my husband something was really wrong with me and our babies.

Scared we phoned our private hospital, they said they could do nothing for us but the midwife called my Ob and he phoned me telling me that I needed to get into hospital ASAP. We headed into our local public hospital and went straight to the maternity unit. My ob visited and it was confirmed that my membranes had ruptured. We actually weren‟t too worried; I guess neither of us really understood what was actually happening or how serious our situation was. My OB instructed the staff to give me a steroid injection and explained that this would help the babies if they were to be born. He also instructed the staff to get me to a hospital with a Level 3 nursery.

I was taken to the Mercy for Women in Heidelberg and underwent a few more tests and also an ultrasound. I asked the midwife looking after me when was I was allowed home, she simply said I would need to wait for the doctor. The doctor advised me that I would not be leaving hospital until my babies were born. I was shocked, we weren‟t due until the end of July & it was only the beginning of April!!!! I was taken to a room and settled in for the night. I was 23.3weeks pregnant & now very worried.

I spent a week at the Mercy; I had numerous blood tests, CTG‟s, ultrasounds and was on strict bed rest. We were advised that I had a very high chance of getting an infection and this would more than likely result in our twins having to be born. We had been told that we had to make it to 24 weeks otherwise they couldn‟t do anything to save our babies. That was devastating to hear but we had to accept the reality of what was going on. After another day of contractions and my infection levels raising daily it was decided that at just 24.3 weeks my precious babies had to be born. I was hysterical and terrified.

As there were no beds in NICU we were transferred to The Royal Women‟s Hospital in Carlton.

After a short discussion with what seemed like 100 medical professionals, it was decided that I would deliver naturally. Never ever in my entire life have I been so terrified. I couldn‟t stop crying and was racked with guilt. Why had my body failed? We had been told that babies born at 24weeks gestation could face a life of disabilities, and they only had about 50% chance of survival, less again for twins and also boys. We told the doctors to do everything they possibly could to save our babies, they agreed.

So much was going through my mind. I was vomiting throughout the labour; my body was not coping with what was happening. When the doctors checked on me around 4am, they advised us that I was fully dilated and it was time to deliver. Around 30 people entered the delivery room along with a lot medical equipment. At this point, in tears, I told Dr Karina, that I didn‟t want to deliver and they were not ready to be born. She understood, but she said they had to be born, we had no other option.

Spotlight story Parent‟s on mental health LLT ©2008

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At 4.15am on Friday 13th April 2007, Thomas Joshua entered the world weighing just 630grams, no screaming just a very tiny fragile little boy. I saw him for a brief moment then he was whisked away.

4.24am, Alexander Stanley entered the world weighing 546grams. Again no sounds and I never got to see him. I had dreamt of what I hoped my delivery would be like and this was not the way it should have been. I never got that first cuddle, the first time I saw my sons, was in a photo the nurses had taken and Josh had brought back to me. I felt relieved that the boys were alive and was running on pure adrenaline; reality of the situation had not hit me. It would be weeks before it would.

After a few hours I was allowed to go up and meet my sons. They were beautiful, and so tiny. I remember saying sorry to them for what they were going through. I think that guilt will stay with me forever.

Little did I know at the time, that this would be just the beginning & from this day forward our life was going to be very different.

The boy‟s journeys in NICU could not have been more different. We had been told that twins usually follow a similar path....well our boys had other ideas.

Alexander spent 5 days ventilated before going onto CPAP. He was on CPAP for 9 weeks and then nasal prong high flow oxygen, before coming off oxygen altogether around his due date. He had blood transfusions, brain and heart ultrasounds, suspected NEC, PDA, Pulmonary Stenosis & hernia‟s both bilateral inguinal and also umbilical. His umbilical hernia reduced itself and he only required surgery on his bilateral hernia‟s 2 days before discharge. The surgeons at RCH were very relaxed and said it was a straight forward procedure and it would all be fine. No comfort for me though, it was awful watching my tiny baby going in for surgery.

We had a few scary moments when Alexander struggled with breathing but he would always bounce back very well. After 132 days in NICU/SCN he was discharged on full suck feeds and weighing 3.4kg!!

Not bad for a baby that started out at 546grams. It was a bittersweet moment for us, we were so excited that one of our babies was coming home, but it was so hard leaving Thomas in hospital.

Thomas‟ journey was scary to say the least. He was ventilated for 65 days, and it was only the use of steroids that helped his lungs become strong enough to be put onto CPAP. I did a happy dance when he was moved out of Room 8 to Room 9. It showed he was doing much better. Thomas did well being on CPAP and was moved to an open cot. We thought things were improving and he would soon catch up to Alexander. Some of the things Thomas went through in his early days in NICU were: a lumbar puncture, 2 urine taps, 4 blood transfusions, heart and brain ultrasounds, bilateral inguinal hernia, developed pulmonary hypertension, PDA, his lungs collapsed several times and he spent about 4 months on CPAP. At the end of August, Thomas was doing really well; he was now in Special Care and only requiring a whiff of oxygen and doing well with his suck feeds. There was talk of home, it was exciting. It all turned pear shaped, when one morning in early September, Thomas developed Rhino Virus and was taken back to NICU and put back on CPAP, he remained on CPAP for 11 days and it was decided to give him a rest from such feeds. This would result in a massive backward step for all of us.

Thomas was on and off CPAP for a few more weeks, but it was in late October that it became worse.

This was the only stage during our journey that I felt like our little boy had given up his fight. Thomas was 6 months old and on CPAP and had been doing well, when one night he struggled and his CPAP was turned up to 10 with 98% oxygen. Things didn‟t look great. When I arrived at the hospital that morning with Alex, the consultant told me to call Josh at work and get him to come in as they couldn‟t tell me whether Thomas would make it through the day. It was the most heartbreaking phone call I have ever had to make.

Parent‟s story cont‟d LLT ©2008

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Parent‟s story cont‟d Thomas was immediately taken to NICU Room 10 as the doctors had decided to give Thomas a course of Nitric Oxide to help his lungs absorb more oxygen. It worked and Thomas‟ oxygen was reduced by nearly half and his CPAP was slowly brought down over the week. It took a few more weeks, before he was well enough to go back onto high flow humidified oxygen, he continued to do well, and was soon just on high flow oxygen and managing some such feeds. I could certainly see the light at the end of the tunnel. However if there was one thing I had learnt, it was that the light could be taken away very fast.

The doctors had started to talk about home around November, but they had told us he would come home on oxygen & possibly NGT feeds. By this time we didn‟t care, we wanted him home and we were willing to do everything possible to make it happen. After lengthy discussions, Thomas was transferred to Monash Medical Centre; this was to enable us to link in with their respiratory, cardiology and dietetic services. We were taught about oxygen and also shown how to insert and remove the NGT. I am proud to say I managed to insert the NGT successfully on my first attempt, even the nurse was impressed! After 4 days at Monash, we were finally allowed to take our little man home. It was December 24th 2007 – 255 days after he was born & 4 months after his brother had come home. We knew life would be tough, when we first discovered we were having twins, but this was going to test even the strongest person. We had a baby on oxygen and NGT feeds, not to mention 3 medications. It was a juggling act but we did it. Both the boys had so many appointments in 2008, for all different things. I must admit when Thomas and Alexander were born, I thought once we were discharged we would have “normal” babies. How wrong I was. We were lucky to only have one readmission in 2008, Thomas had developed Influenza A and they wanted to monitor him for 24 hours. Thankfully the doctors were happy for him to come home after only 24 hours, but we had been told the cough and sniffles would last around 6 weeks so we were told to limit going out and having visitors. It was a tough winter and one I will never forget.

Alexander did well not to get too sick in 2008, although his feeding and sleeping was going badly and I think I spent at least 6 weeks sleeping on the couch from 1am – 6.30am getting him to sleep in his rocker! Thankfully it got easier.

Thomas came off oxygen in January 2009 and it was also in the time he finally sat unaided! In May 2009 he began to eat solids and therefore we finally removed his NGT. His meds had been reduced down to just one and things were going well.

Alexander was doing well, although struggling with sleeping and gaining weight. He was not putting on enough weight and it was getting concerning, he was started on a new formula to help assist weight gain. He was rolling, crawling and doing very well. He also started to take steps, which was absolutely amazing.

With Thomas off the oxygen and no longer requiring his NGT, I thought everything else would fall into place and he would catch up.

Fast forward to now 2011, Thomas and Alexander will turn 4 this April and things are still just as hectic and challenging as they were the day the boys were born.

Alexander still struggles to gain weight and at 4 years old, he is still only 11kg!! He is on special formula which he still only drinks from a bottle, he only eats pureed vegies and struggles with new foods and lumpy foods & will often vomit. He has only in the last 6 months developed a wide vocabulary but struggles to comprehend and only speaks in 3 word sentences. He has regular speech and also regular appointments with the dietician. Alex is also sensitive to touching different textures. He is however walking, jumping, singing, dancing, running, climbing and loves to bounce on his trampoline. He is not yet toilet trained & struggles to feed himself with a spoon, but he is improving.

Parent‟s story cont‟d LLT ©2008

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Thomas has never crawled and never will. Although he developed the Thomas “bottom shuffle” which he has mastered and is extremely fast at. He took a very long time to weight bare through his legs .

He loves foods, but like Alex he struggles with lumps. Thomas‟ pulmonary hypertension has improved which is a massive relief. We see his cardiologist every 6 months, to keep an eye on it. He no longer needs his dietician which is fantastic, nor do we see his respiratory specialist.

Some of things we were not prepared for after having Thomas & Alex were all the issues they face. We were told about 24 weekers having disabilities but we still weren‟t fully prepared for it all. Whilst we always knew Thomas had Gross Development delay, I never expected to be told that he had Cerebral Palsy. He is quite low – toned and struggled for a long time to gain trunk control. We were also told in early 2009 that Thomas may never walk. It was heartbreaking and although I held it together talking to the physio, I cried a flood of tears driving home from that appointment. To everyone‟s amazement Thomas has started to walk and there is no stopping him, it has taken 2 years of solid work to get him to walk, many physio appointments & many hours at home doing the exercises given to us by his physio.

We taught our little boy to walk and we could not be prouder.

Thomas is also delayed in speech, he bangs his head in frustration and struggles to make eye contact with family and friends. These characteristics raised alarm bells for our paediatrician and therefore he was assessed for Autism. He was diagnosed late 2010 with Autism. Yet another challenge for us as a family and also many more tears from me. Although if I was totally honest I already knew he had it.

We work very hard with his Occupational Therapist, and Speech Therapist to help him communicate.

Alexander will be assessed just before school, but they are confident he will overcome his speech and comprehension delays with more speech therapy. As for feeding, we take it one day at time with his feeding. Though we may take out shares in Red Rooster as both the boys LOVE their hot chips.

This year we face surgery for the boys to have their PDA‟s closed, and Thomas will have an MRI late March to determine any brain damage as a result of being oxygen dependant for so long. We will also continue along with all our appointments.

Thomas and Alexander attend childcare or as Alex calls it “school” twice a week for 3 hours, we also do music. These activities have helped the boys in their development as well. They both love it and I now enjoy my time whilst they are at childcare to enjoy that nice hot cuppa and even read a book!

Having extremely premature babies can be challenging & scary at times both in hospital and once home, BUT it is also a very rewarding experience, to see these two little boys, no one expected to live, reach milestones, dance and laugh is truly inspiring. We are so proud to be their parents.

Jenny & Josh

Thomas

Alexander

Parent‟s story cont‟d LLT ©2008

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Diary Dates Parent support groups and Morning Teas Life's Little Treasures Foundation organises Parent Support groups at various venues throughout Victoria, details below. This is a great opportunity for parents with premature babies to have a cuppa and chat and meet other parents in a similar situation. All venues are free of charge. Come along and see what else we can offer. Looking forward to seeing you there. Call us on: 1300 MYPREMMIE (1300 697 736).

Chadstone / Malvern

Hospitals

Dates: 2nd Friday of the month Time: 10.00am – 11.30am Venue: Phoenix Park Neighborhood House Address: 22 Rob Roy Road, East Malvern VIC 3145 Co-ordinator: TBA

This provides a great opportunity for parents with babies currently in NICU/SCU to meet parents who have been through this experience before. These morning teas are only available to parents who currently have babies in NICU/SCN at the hospital.

Royal Children’s Hospital

Dandenong / Eumemmering

Dates: New dates TBC soon Venue: RCH NICU - 3rd Floor Parent Retreat Area Co-ordinator: Roster of LLT Team

Dates: Last Friday of the month (excl. school holidays) Time: 10.00am - 11.30am Venue: Early Learning Services Centre Address: 54b Princes Hwy, Eumemmering Co-ordinator: Rowena

Royal Women’s Hospital

Maroondah / Knox Dates: 2nd Wednesday of the month Time: 10am - 12pm Venue: Koolyahgarra, 7 Church Street, Bayswater.

Melway 64 E3, 5 mins walk frm Bayswater station.

Coordinator: Karin

Date: 1st Wednesday of the Month Time: 11.30-12.30pm Venue: Royal Women‟s Hospital (4th floor) Co-ordinator: Emma

Sunningdale MCH Centre Dates: 1st Friday of the month Details on our website soon

Welcome to new members Sharni Graham

Barry Maitland

Tanya Briffa

Greg & Katrina Hams

Callista Welbeck

Courtney Boi

Amy Tandberg

Elizabeth Van Dort

Katrina Wharton

Jackie Grogan

Anna Lloyd

Kylie O‟Brien

Diary dates & new members LLT ©2008

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Cooks Corner Yoghurt, Raspberry and White Chocolate Muffins

225g self raising flour 2 tblsp vegetable oil 280g low fat yoghurt 100g white chocolate

110g caster sugar 2 eggs, beaten 150g frozen raspberries icing sugar for dusting

W: www.toddlertucker.com.au T: 0423 834 319 E: kim@toddlertucker.com.au

1. Preheat oven to 180 degrees 2. Grease a 12 hole muffin pan 3. Combine flour and sugar (let the kids do this bit) 4. Add remaining ingredients and mix until just combined (if the kids are helping, get them to mix all wet ingredients together first then quickly add to dry ingredients so minimal stirring is required to combine) 5. Pour into muffin pan and bake for approx 30 mins 6. Cool for about 5 mins, dust with icing sugar and serve warm or cold.

Some of our Sponsors & Supporters

Cooksyou corner and Sponsors Thank and raffle winners

LLT Š2008

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Register your Precious Prem ABN 94 232 874 269

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Volunteer response form Life‟s Little Treasures Foundation is a non-profit incorporated association. We are a voluntary parent organisation that relies on its members to help us to continue supporting other families. Your membership contributes to assisting us in achieving our goals.

We would like to inform our members that there is no obligation to be actively involved with the committee once you have subscribed to become a member. However we would be delighted if any of our members would like to be involved in any of the following areas below. If so, can you please indicate which area you would like to be involved and send it to us: Support / morning tea program Fundraising Media and Marketing Busy bee or social events

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LLT ©2008