We've heard it a million times when you're expecting...
"What do you want a boy or a girl?"
Response.. " I don't care as long as it's healthy"
And I don't think you really understand the depth of that statement until you have a sick newborn and you're left feeling out of your league and desperate for help.
Miracle babies have seen it time and time again and have the support you need and the resources you hope would be there if that ever became your reality.
Here's how to reach them.
www.miraclebabies.org.au
Miracle Babies Foundation is Australia's
leading organisation that supports premature and sick newborns, their
families and the hospitals that care for them.
Every year in Australia around 44,000 newborn babies
require the help of a Neonatal Intensive Care Unit (NICU) or Special Care
Nursery (SCN). 25,000 of these babies are born premature and up to 1000 babies
lose their fight for life.
The birth of a premature or sick newborn can be an
overwhelming and traumatic experience for families. Their lives are permanently
changed, significantly influenced by their NICU experience.
Miracle Babies Foundation is dedicated to positively
supporting this experience through:
Our NurtureProgram
A free support program available to families of premature and sick
newborns at any stage through a high risk pregnancy, their Newborn Intensive
Care Unit (NICU) or Special Care Nursery (SCN) journey, their transition to
home and onwards.
This successful program is essential for all families and comprises:
•
NurtureLine - National 24 hour family
helpline
•
NurtureTime - In hospital parent to
parent support
•
NurtureGroup - Out of hospital play
and support groups
Online Resource Centre
www.miraclebabies.org.au is
Australia’s premiere online resource for families, including real birth
stories, development and statistics, common medical conditions and procedures,
going home, follow on services and more.
Hospital Support
Support for hospitals including services for families,
lectures, training tools, scholarships for health professionals and funding for
equipment and resources.
Community Awareness
Every year in Australia around 44,000 newborn babies
require the help of a NICU or SCN. Miracle Babies Foundation strives to raise
community awareness and knowledge of this prevalent national issue and the
ongoing challenges faced by babies and their families.
Miracle Babies Foundation was established in 2005 by
mothers of premature and sick newborns. All dedicated to sharing their strength
and knowledge in helping families celebrate and honour their own miracle babies
and give back to the hospitals that care for them.
If you have experienced the birth of a premature or sick
newborn, you may know first hand how overwhelming and traumatic an experience
it can be. Watching your baby struggle for life brings inconceivable highs and
lows and can be an extremely difficult time for parents, siblings and the
extended family.
In Australia approx 42,000 babies each year require the
help of a Neonatal Intensive care Unit or Special Care Nursery and no pregnancy
book or birth plan can prepare you for the NICU journey. When your baby is born
premature or sick you enter a completely foreign world where every family’s
journey is unique and lives are changed permanently.
We hope you find the following resources on premature and
sick newborns informative, and that you find support, guidance, confidence and
hope.
If you have experienced the birth of a premature or sick
newborn, you may know first hand how overwhelming and traumatic an experience
it can be. Watching your baby struggle for life brings inconceivable highs and
lows and can be an extremely difficult time for parents, siblings and the
extended family.
In Australia approx 42,000 babies each year require the
help of a Neonatal Intensive care Unit or Special Care Nursery and no pregnancy
book or birth plan can prepare you for the NICU journey. When your baby is born
premature or sick you enter a completely foreign world where every family’s
journey is unique and lives are changed permanently.
We hope you find the following resources on premature and
sick newborns informative, and that you find support, guidance, confidence and
hope.
•
Put together an expressing kit to
take with you wherever you go. Include sterile containers your labels and a
pen. Keep together in a cooler bag, ready for use. Don’t forget to take your
pump with you.
•
Try and learn all you can about the
medical equipment, medical conditions and staff that are helping care for your
baby. Don’t be afraid to ask questions, the NICU/SCN staff have a wealth of
knowledge and are there to help you. If you don’t understand something ask for
it to be explained again and try and write down questions as you think of them.
•
The NICU can be a very noisy place
and the equipment’s alarms will at first drive you crazy. You will eventually
tune them out and remember there are many false alarms.
•
Spend time reading stories to your
baby. Your baby would have spent month’s in-utero listening to your voice and
it can be a truly special time for the both of you to share.
•
Ask if you can take some hand/foot
prints if your baby is stable enough. You may also be able to arrange to have
hand and foot casts made.
•
Ask if you can keep mementos such as
your baby’s first hospital bracelet, a clean tiny sized nappy, phototherapy
mask, old leads, Blood Pressure cuff etc – in time you will look back and
wonder how it was ever too big for them.
•
Keep a journal of your baby’s
progress and your feelings while you are in the NICU. Journals become a great
keepsake and you will be able to look at it and see how far your child has
come. You can include information such as;
Weights
and measurements
Vital
signs such as heart rate and oxygen saturation
Feeds
Medications
Graduations
such as moving from Level 3 to Level 2 or coming off a ventilator to CPAP
Tests
or procedures
How
you and baby were feeling
Try
to write down all your baby’s “firsts”
First
touch
First
cuddle
First
time you do your baby’s “cares” e.g. change their nappy
First
time wearing clothes
First
time you heard a cry
First
time you could breast feed or bottle feed
First
time you see your baby’s face with no tubes
First
real bath
•
Some units allow you to provide your
own clothes when the baby is stable enough to be dressed. For most mums seeing
their baby dressed for the first time is a truly memorable moment
•
NICUs and SCN can be very warm so
remember to dress appropriately. Avoiding long sleeves can be beneficial
especially when it comes to washing your hands/arms throughout your visit.
•
If your baby’s bedding is being
changed you may be able to help the nursing staff and have a hold of your baby
too. You may be able to place your hands in the humidicrib, lift your baby up
in your two hands all while their bedding is changed by their nurse. It may
only be a very short time but this often is the first time a parent gets to
“hold” their baby and a treasured memory.
•
Take lots of photographs and video
footage of your baby. Some parents have taken pictures with their baby and an
item that will give people an idea of their size later on. WE have seen photo’s
of mum or dads wedding band on their baby’s wrist/arm, with a doll, matchbox
car, stuffed animal, coke bottle, mobile phone.
•
Celebrate every step and milestone
however big or small. Your baby may have finally reached 1kg, come of CPAP or
been in hospital 100 days. Photos, video footage, balloons or even a cake for
those extra big events.
•
The routine hand washing can leave
your hands very dry and cracked in a short amount of time. Invest in a good
hand cream to help with dry hands from continual washing and keep a hand sanitiser
in your purse for the times when you touch money, hand rails etc
•
Get as much rest as possible, try to
drink plenty of water and eat well
•
If your baby is stable ask to spend
time with your baby having kangaroo care. This special cuddle can help your
baby maintain a stable heart and breathing rate and develop better physically
and mentally.
•
If your unit has a parent’s room,
make use of it to read, watch television and chat with other parents.
•
Say “hello” to other parents in the
NICU/SCN and make time to chat with each other. Share your experiences with
other families and you will benefit immensely from each others support. You
will find the friendships and support networks formed in hospital a great
comfort once you have been discharged home as well.
•
Discuss with your baby's nurse a
schedule to have regular time with your baby, ringing in the morning to find
out how baby has been and what time the feeds are likely to be.
•
Leaving your baby in hospital can be
a very emotional time. Do whatever it takes to help you feel ok even if that
means calling the hospital numerous times a night to check how your baby is
doing.
•
If you feel you need a break from
visitors coming to the NICU/SCN don’t feel guilty. Your family and friends will
understand so don’t be afraid to tell them you need a break.
•
At first you may be hesitant to get
involved in your baby’s care due to their size or medical condition however you
can both benefit immensely from the contact and bonding. Your baby’s nurses
will be able to help and show you what to do which might include changing their
nappy, cleaning their mouth or even choosing their clean clothes.
•
While your baby is sleeping spend
time just watching them. Watching their facial expressions and activities will
help you get to know your baby and their little personality.
•
Most units have a room set aside for
expressing or breastfeeding. It’s a wonderful place to spend time chatting with
other mums who are going through the same experience as you.
•
Try and take some time out for
yourself. Spending a day or afternoon away from the hospital can give you a much
needed rest from the stresses and intense NICU environment.
•
During your visit you can even take a
short break away with a walk around the hospital campus, or a quite cuppa in
the cafeteria. This can offer a welcome break during the long and tiring days.
