Introducing Facebook cover star, Alexis

We thought you might like to read her story written by her mum, Jessica.

“Alexis was born by emergency C-section at 28+2 weeks. She weighed just 652g. We knew from 20 weeks that she wasn’t growing as normal and I had early onset preeclampsia. I was hospitalised at Mercy Hospital for Women from 25 weeks onwards with daily ultrasounds to check on Lexi’s state.

April 26 finally arrived and the docs said Lexi had to come out. I was grateful I had made 28 weeks. However, there were no beds for her in Victoria – only in Adelaide. I refused to go interstate. In the end we were taken to Monash Health and Lexi was born. We begged to be transferred back to the Mercy as it was closer to home and we were travelling three hours a day to visit her in hospital. My father, who had terminal cancer, was at the Austin, which is located next to the Mercy, so visiting two hospitals daily was really taking its toll.

Because she was so little and fragile, I didn’t get to hold Lexi until she was 19 days old. Her biggest problem was her lungs. She has severe chronic lung disease, and spent a total of 139 days in NICU/SCN before coming home on oxygen. She is also one in 10,000 babies with congenital hypothyroidism. Her little thyroid does not produce thyroxine and without it she can’t grow. She is on daily medicine to combat this and doing well. Lexi just hit the five-kilogram mark and is now seven months actual, four months corrected.”

For more information on congenital hypothyroidism, visit the Victorian Government Health website.

Alexis (pictured)

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Meet Zahara, Lilabela and Myles

As a doctor, Phoebe was immediately concerned when she learned she was having triplets.

“I was all too aware of the likelihood they would be born prematurely and the complications and risks that would entail,” she says. “The ensuing weeks were some of the most painful of my life.”

In 2011, gorgeous Zahara, Lalibela and Myles were born at 30 weeks to her and Hamish. The triplets spent 74 nights in the NICU of the Royal Hospital for Women, sleeping in incubators supplied by the Running For Premature Babies organisation.

As a way of saying thanks, Phoebe regularly runs with the Running For Premature Babies team during the Sydney Morning Herald Half Marathon to raise money for the Royal Hospital For Woman Foundation.

“The NICU experience is like no other, and only other people who have experienced the journey understand it,” she says. “That’s why I have love being a part of the Running For Premature Babies team.”

Zahara, Lilabela and Myles are now thriving three-and-half-year-olds and are loving growing up together.

For more information about how to join Running for Premature Babies or more about Zahara, Lilabela and Myles’ story, please visit runningforprematurebabies.com.

Zahara , Myles & Lilabela (L to R).

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Organising childcare the easy way

There’s an old saying that it takes a village to raise a child. Today, however, the village might consist of day care, family day care, nannies or occasional care, along with grandparents, part-time babysitters and neighbours. Each family has different childcare needs that depend on many factors, not limited to how much the parents work outside of home, the kids’ ages and their particular needs.

Long day care is one of the more popular options, as the extended hours make it easier for parents to work set hours. Nannies can be an excellent option, since they can usually work flexible hours, your children can be in their own home and there’s no rush for you at pick-up time. Family day care allows for a home environment as well as social interaction with other children.

For parents needing a break, occasional care – a centre offering childcare on a casual basis, often for just a few hours at a time – can be a lifesaver for doctors’ appointments or even a kid-free supermarket shop.

When deciding the best option for your family, consider all the options. Most centres offer tours – while you’re there, be sure to ask lots of questions related to your individual family needs. There are government rebates and benefits for some childcare options, too, so it’s definitely worthwhile looking into your eligibility.

You can search for different childcare options in your area and find out about the childcare benefit and rebate at the My Child website.

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Case study: Clinton Elliott

earlybirdsThis month, we had a chat to Clinton Elliott who was born eight weeks early and is now thriving in his 20’s, having gone to university and ending up at a fantastic job.

While premmies, Clinton and his twin brother Robbie spent three and a half weeks in the Neonatal Intensive Care Unit.

We also hear from his mother Gail on the challenges she and her premmies faced.

earlybirdsWhat are you most proud of?

I am most proud of having a normal life as a kid. The doctors scared my parents into thinking we were going to be very fragile children with developmental problems.

Where are you working and what does a typical day look like for you?

I work for the Victorian State Government in Stakeholder Relations. Typically, I’m in the office putting together web content, community meetings and helping build capacity of branch staff.

Do you feel being a premature baby ever impacted you during your childhood/adulthood?

Clinton: As a kid, I had a very weird tummy. We had a special diet without colours and preservatives and I think this helped ensure I can now eat anything.

Gail: The doctors said it would take Clinton and Robbie until their teenage years to grow into their bodies, as they were both very long for their age. The boys also had a few issues with digestion. The doctors told us the lining of the stomach is one of the last things to develop in-utero so they had stages of having to eat quite bland food, such as pears and potatoes, until they worked out what was wrong.

What are some challenges your parents faced while you and your brother were in the NICU?

C: I had a hernia and had to have surgery. My brother had issues with breathing and was pretty sickly when we were born. We both pulled through and became super skinny babies. We ended up developing a nickname for ourselves – ‘skunny bunnies’.

G: Clinton had inguinal hernias, and both the boys were jaundiced and had to be tube-fed. Robbie was on a breathing mat in the early days because he kept having episodes of not breathing so well. I also had the challenge of stocking up the freezer with supplies of breast milk for the boys.

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NICU Terminology

Finding yourself in the NICU with your premature baby is stressful, overwhelming and emotionally draining.

Apart from learning to deal with the emotional aspect of having a premmie baby, parents also need to learn all the terms used by the nursing staff in the NICU. Here’s an overview of some of the terms you may encounter:

 

Apnea

This is when your baby may temporarily stop breathing. A simple touch is usually enough to get your premmie to take the next breath

 

Aminophylline

A drug commonly given to preterm babies to reduce apneas and bradycardias

 

Bagging

A small rubber mask is placed over baby’s mouth and nose to pump oxygen from a rubber bag into the lungs. This may be done with long apneas or to change a baby’s ventilator tubing

 

Bilirubin

A yellow by-product of the body’s red cells being broken down. When a baby’s body is unable to remove this product, it results in jaundice

 

Bolus

An amount of milk or fluid given rapidly into the gut or into a vein

 

Bradycardia

A slowing of the heart beat to less than 90 beats per minute. Gently patting or stimulation can usually speed it up

 

Breast pump

A pump used to express breast milk

 

Cerebral palsy

A non-specific diagnosis given to children with some impairment of muscle tone, movement, and co-ordination

 

Central line

A long-term intravenous line

 

Corticosteroids

Drugs that mimic the action of natural steroid hormones can help the lungs of a foetus to develop more quickly while in the uterus

 

Corrected age

The age your baby would be if born at 40 weeks

 

CPAP

Continuous positive airways pressure – usually a short plastic tube from the nose to the back of the throat that increases the pressure in the airways

 

EBM

Expressed breast milk

 

ETT/Endotracheal Tube

A thick plastic tube from the mouth or nose into the airways. It is then connected to a ventilator or a rebreathing bag (see bagging)

 

Express

To collect breast milk into sterile bottles either by hand or with a breast pump

 

 

Extremely low birth weight (ELBW)

A baby weighing less than 1000 grams at birth

 

Full term

A baby born after 37 weeks and before 42 weeks’ gestation

 

Gavage

To feed a baby milk through a fine plastic tube passed through the nose or mouth into the stomach

 

Gestational age

The age of a foetus or a newborn, usually expressed in weeks dating from the first day of the mother’s last menstrual period

 

Head box

A clear plastic hood placed over baby’s head to increase the level of oxygen they breathe

 

HELLP

Haemolysis, Elevated Liver enzymes, Low Platelets.

 

IGUR

Intra Ututerine Growth Restriction – usually caused by a problem with the placenta. This results in a ‘small for gestational age’ baby (SGA)

 

Indomethacin

A chemical agent used to close a patent ductus arteriosus

 

Intravenous feeding

A method of supplying essential nutrients by infusion into a vein

 

Intraventricular haemorrhage

(Brain Bleed) A type of bleeding within the ventricular system of the brain

 

Incubator/Isolette/Humidicrib

An enclosed, see-through, temperature-controlled, sometimes doubled-walled box that gives premature babies environmental protection from bacteria and drafts

 

Jaundice

The yellow discoloration of a baby’s skin and eyes caused by too much bilirubin in the blood

 

Kangaroo Care

Skin-to-skin contact where baby is positioned on mum or dad’s bare chest to promote bonding and healing

 

Meconium

The first bowel movement/stool passed by a newborn, usually dark green and sticky

 

Meconium aspiration syndrome

A type of pneumonia caused by stool being passed by the baby while still in the womb. The stool can be inhaled into the baby’s lungs and can partially or completely block the baby’s air passage, making breathing difficult

 

Nasal canula

A small plastic tube placed under the nose to provide oxygen

 

Necrotizing Enterocolitis (NEC)

A bowel condition caused by lack of blood supply.  A section of the bowel may become severely inflamed or infected

 

NICU

Neonatal Intensive Care Unit

 

Neonate

A newborn infant, less than 30 days old.

 

Neonatologist

A physician who specialises in the care of critically ill newborn infants

 

Oscillator

A type of high frequency ventilator

 

Oxygen saturation

The level of oxygen in a baby’s blood. Oxygen level is measured by a small probe on the baby’s hand or foot, also by blood samples. This level tells at-a-glance how well oxygen is being carried through the body

 

Peripherally Inserted Central

Catheter (PICC) – A flexible, thin IV tube put into a vein in the arm, foot, or leg and then routed up into, or near, the heart

 

Persistent Pulmonary Hypertension of Newborns (PPHN)

A serious condition that causes the baby to return to its pre-birth route of blood circulation. The baby’s blood is only partially oxygenated through the lungs. This results in very low oxygen levels, plus a higher blood pressure in the arteries of the lungs.

Treatment includes, oxygen, ventilator therapy, medications and/or ECMO. This is also called Persistent Foetal Circulation (PFC).

 

Phototherapy (or Bililights)

A mode of treatment for jaundice in which the affected infant is placed under special fluorescent lights that break down the structure of the bilirubin so it can be more easily transported to the liver and then excreted from the body

 

Pneumothorax (pneumo)

Air escapes from the lung into the chest cavity, creating a pocket of air in the wrong place. This pocket of air then presses on the lungs or heart. A chest tube or catheter can be inserted to remove the pocket of air, which lets the lungs re-expand

 

Pulse oximeter

An electronic monitor that detects oxygen saturation in the blood using a light sensor probe

 

Respiratory Distress Syndrome (RDS)/Hyaline Membrane

A condition in newborns that causes the child to have difficulty breathing. It is caused by an insufficient supply of a chemical called surfactant that helps expand the small air sacs in the lungs

 

Retinopathy of Prematurity (ROP)

An eye disorder, involving the retina that can occur in premature infants

 

Room air

The ordinary air we breathe which contains 21 per cent oxygen. Oxygen therapy can deliver from 22 – 100 per cent oxygen.

 

SCN

Special Care Nursery

 

Sepsis

An infection caused by bacteria

 

Septic shock

A body infection that causes a drop in stability of the vital signs due to a decrease in heart functioning

 

Spinal tap

The removal of a small amount of fluid from the spinal canal. The fluid is then analysed for infection, bleeding, and other disorders

 

Surfactant

A substance in the lungs that helps keep the tiny air sacs from collapsing and sticking together. A lack of this substance contributes to Respiratory Distress Syndrome (RDS)

 

Transient Tachypnea of the Newborn (TTN)

A condition when a baby breathes with quick, shallow breaths (usually over 80 breaths per minute). It is often caused by fluid in the lungs and will improve as this fluid is absorbed. Some babies need oxygen as this resolves. TTN is often associated with caesarean deliver

 

Umbilical Catheter, Arterial or Venous (UAC, UVC)

A tube inserted through the belly button (umbilical cord) into the arterial or venous blood vessels. Either tube is used to give the baby fluids and to draw blood samples.

The UAC is used to monitor the baby’s blood pressure. If the baby requires oxygen therapy, the UAC will be used to draw blood gases and blood samples

 

Ventilator

A machine that fills the baby’s lungs with air and helps the baby breathe – also called a respirator

 

Ventricles of the brain

Spaces in the brain that contain spinal fluid to bathe and cushion the brain

If you come across any other terms, the NICU staff will always be happy to explain terms to you, so don’t be afraid to ask questions.

 

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Baby Bunting Walks for Prems!

This month we had a chat to Asha Desai from Baby Bunting …

asha1) Tell us a little about yourself and your role at Baby Bunting?

I have been the marketing manager at Baby Bunting for just over three years now. My focus is on putting together strategy behind sales, building brand equity and delivery of customer centric campaigns in store and online. This includes everything from catalogues, sponsorship to store openings and digital campaigns supported by an amazing team of individuals and agencies.

2) Describe a typical day a work.

Is there such a thing? No day is ever the same which definitely keeps things interesting. My team and I are always running 100 miles an hour as there’s always something new that pops up.

3) Baby Bunting is the primary partner of Life’s Little Treasures Foundation’s fundraiser, Walk for Prems, which is fantastic! Tells us a bit more about the event and its unique partnership with Baby Bunting?

We were determined to partner with a charity organisation that we could help make a difference. The stats of premature births are really overwhelming and at Baby Bunting, we feel it’s our responsibility to provide assistance and education to parents throughout their journey.

Our brand is more than providing product options, it’s getting involved with organisations like Life’s Little Treasures where our team members are able to engage with the community and support something really special.

At Baby Bunting, the topic of premmies is very close to our hearts and we’re constantly trying to find ways of making the pregnancy journey easier for every mum. After speaking with new parents we understand how difficult the premmie journey can be for new parents – alone we can do so little, together can we do so much.

4) What do you think makes this cause and walk so special? What are you looking forward to most about the event? 

We are looking forward to being a part of the day the most! The buzz, the people, awareness and mostly the long-term impact the donations will bring.

5) What are some essentials for the hospital you’d recommend a new mum and baby? 

I would recommend essentials such as healthcare cards, toiletries and comfortable clothes (dressing gown, slippers, socks, t-shirt, trackies). Also, bring along things that will help you relax – music, magazines, books and lots of tissues!

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September Earlybird of the Month

Earlybird of the Month

Baby William looking gorgeous in his Earlybirds Organics Onesie

The premmie journey is filled with a range of emotions and unexpected hurdles, possibly one of the greatest life challenges a parent may face. During this journey it’s important to express your feelings, celebrate the little wins and get a bit of extra help from those around who best understands the journey you’re on.

Nine weeks ago at the North Shore Private Hospital in Sydney, a gorgeous baby boy arrived a little earlier than expected to parents Alexandra and Daniel.

For Alex, her journey began with a premature amniotic fluid leak five weeks and four days before her due date.

Following the rupture in her amniotic fluid sac, her bub stayed in her tummy for four more days before baby William decided to join his parents, weighing just 1950 grams.

Baby Will spent the next three weeks in the hospital due to a complication and was being treated with phototherapy for jaundice.

In such a difficult period, the anxiety Alex and Daniel felt was only eased by the knowledge they were in the best hands possible, and the couple is grateful for all the help from the NICU staff, midwives, their paediatrician, and family and friends.

earlybird of the monthAlex is very grateful for all those who supported and helped their new family along the way and is especially thankful that her sister and parents were there for her, whether it was to be driven around, for food, or to make sure William’s big brother Thomas was taken care of.

For Alex, she remembers how special it was the first time she saw Thomas hold his little brother. Every memory, no matter how big or small is worth celebrating.

William is now nine weeks old and safely at home with his adoring parents.

 

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Tips for family and friends of parents of premmies

Being the parent of a premature baby is incredibly stressful, and they will need your support. As the family and friends, there are some things you can do to help make the process easier for them, as outlined by raisingchildren.net.au:

  • Do what you normally do when a baby is born: offer your congratulations, ring the parents, give gifts. Help them celebrate their baby;
  • Support the parents in any way they require: ask them what they need and what you can do. If the parents want to be alone, respect that and let them be, but make sure they know you are there for them;
  • Stay in touch with the parents, whether it’s a text, email, quick call, or old-fashioned snail-mail, let them know you’re thinking of them and hope they are going well;
  • Avoid talking about the challenges the baby may face, unless the parents bring it up with you. Avoid offering up advice based on someone else’s experiences. It is a difficult time for parents so be sensitive to their situation. Offer positive comments such as ‘he’s strong like his mum’; and
  • Listen: sometimes parents just need to talk, and don’t need you to advise them. They just need to speak about their overwhelming feelings and know they can talk about those mixed emotions without feeling judged.

As the family and friends, the parents will need you and will be so grateful for any help you can offer.

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Bonding with your premmie while in NICU

While your baby is in the neonatal intensive-care unit, it’s still possible to bond with them, which can help with teaching your little bundle of joy about the world.

Earlybirds nicuThe benefits of bonding and interacting with your premmie include:

  • You and your baby get to know each other;
  • Helps your baby feel safe and loved;
  • Helps your baby learn new skills;
  • Helps your baby’s brain development; and
  • Helps your baby’s awareness of the physical environment around him/her.

It’s important to remember your baby is vulnerable and can get tired and overwhelmed quickly, so at first your premmie may only be able to do this for a few minutes at a time. To avoid overwhelming them, try to avoid stimulating all senses at once. Pick one sense, such as sight or hearing, and stick to that per play session. You can try softy singing, humming, or talking to your baby.

Babies are known to recognise your voice and this can be a great way for your baby to get used to you and know that you’re there for them.

When your baby is more developed, you can try incorporated visual props, such as a small soft toy or pictures of you and your family. Once your baby can control eye movements, you can try to stimulate them by waggling your fingers in front of their face or making funny faces. They’ll love it!

Eventually, your baby will be stronger and you’ll be able to play with them more and more.

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Meet the CEO of Life Little Treasures Foundation

This month we had a chat to the Shusannah Morris, the CEO of Life’s Little Treasures Foundation…

earlybirds Shusannah Morris

Shusannah Morris

Tell us a little about yourself and your role at Life’s Little Treasures

I came to Australia from Ireland in 1998 and was welcomed by so many beautiful Australian friends – I’m blessed to have so many I now call family.  I’m married to David and we have one daughter Molly-Rose who is now 13 years old.  We live in Melbourne with our fur baby Bailey, a chocolate Labrador.   I’m one of the co-founders and current CEO of Life’s Little Treasures Foundation (LLTF).  I have been with LLTF since 2005.  LLTF is my everything, I have been told I need to relax and get a hobby but LLTF is my work and my hobby and I relax most when I know we are supporting families.

What does a typical day at work look like? 

My day starts at the office between 7.30am and 8am with a compulsory cup of tea to get the day started! I then sit and read through any emails that have come in or are in need of reply.  I have 4 part-time staff and am part-time myself, so each day will involve catching up with a staff member for the morning, going through what programs and projects LLTF is involved in and making sure we are on track with what we have planned.  I’m a very hands-on CEO as we are such a small team and so I get involved in all aspects of the business. My most rewarding part though is speaking with a family member that has called our support line and being able to help them at that precise moment when they need it most.

Why did you decide to work with premature babies and their families?

earlybirds molly as a baby

Molly-Rose

My daughter Molly-Rose was born premature at 25 weeks – weighing just 880grams – 13 years ago.  It was a desperately emotional and scary time for us and while in hospital for four months, we met three other families whose bubs were also in at the same time.  Over the months we became great friends so when we left hospital we kept in touch, as weeks turned into months we all found that once out into the community there was no support or information at all for us to access and no one we could talk with.

I was blessed as these amazing women I had met at the hospital became my lifeline and we all leaned on each other for support to get us through the first couple of difficult years.  One day while having one of our monthly morning teas we were all chatting about other families and what they must go through and how wrong it was that after such an experience there should be no one there to support you once you get home. We all loved our extended families very much but they weren’t able to truly understand what we had been through. It was our peer-support we needed, so it was around that table on that day we all decided to make a difference and Life’s Little Treasures was formed.

That was back in 2005 and last year we celebrated 10 years of supporting families of premature and sick babies.  Of course I must acknowledge all the wonderful people who have supported us along the way to make it all possible, the hundreds of volunteers who have been there, some still here today and so very precious to us, the fundraisers, the donors, who have made it possible for LLTF to continue, the professionals who provided and still do provide Pro Bono services. We couldn’t have done this without them and the health professionals, hospitals, health services who gave us the chance, who listened to us, respected what we had to say and whom over the years have become wonderful supporters of LLTF and enable us to reach so many families each day.

What’s the most rewarding part of your role?

Supporting the families, being there for them in a time of need and being able to say ‘it’s okay, we do understand, we do get it and look, here is an entire community waiting to support you in any way we can’.  Being able to provide the families with critical information at a time when it’s needed most and knowing that this information will lessen the angst they are feeling and most importantly provide them with knowledge.  LLTF believes that providing information and education to parents and professionals is key to providing best outcomes for premature and sick babies and most importantly enables families to become their child’s advocate.  Information is power and power gives you control, it’s the loss of power in the early days that effects parents so much.

I just love to hear how our programs and services have helped families, it makes my heart happy to know we can be there for a mother or father in such a time of emotional need.  I would never want any family to go through what we did and it is our mission to ensure all families are supported.

How does Life’s Little Treasures support the families of premature babies/sick babies?

Our Vision at Life’s Little Treasures is:

To ensure that all families enduring the difficult and life-changing experience of having a premature or sick baby have easy access to critical information and community support to help make a difference to them and their child.

We provide extensive support for families and their babies through many programs and services such as:

  • Informative website and information sheets;
  • iPhone & Android apps which provide critical medical information for NICU and SCN;
  • Free hospital Resource Folder for families “A Guiding Hand to NICU & Special Care”;
  • Free hospital Tip Sheets – providing families with quick relevant information;
  • Free hospital Reading Program – “Books and Bubs”;
  • Free interactive Webinars designed to provide professionals & families access to the latest information & resources for a child’s development;
  • Newsletter which provides parents with updated and relevant information (2 editions a year);
  • “Treasure Time” community support & playgroups;
  • Hospital support for families;
  • 24 hour support line 1300 MYPREMMIE;
  • Parent Support Network;
  • Online community through Facebook/Twitter;
  • Family social activities/events (incl annual National Charity Walk -“Walk for Prems”);
  • Financial and Material “Family Assistance Programs”, assisting families both in hospital and at home, throughout Australia; and
  • Access and encouragement for family involvement in relevant and current research.

What would be your main advice to the parents of premmies?

It’s never easy to sit and watch your child fight for life, you are probably still adjusting to the new world you find yourself in. It can be a very stressful and traumatic time for parents.  You may be experiencing a range of emotions such as sadness, anger, loss, fear, guilt, isolation, loneliness, anxiety, grief, or feelings of being overwhelmed. I can tell you, these feelings are all completely normal – it is not wrong to feel these and you are not alone.  This could be one of the greatest life challenges you may ever face but baby will get there.  It may help to write about your experiences, talk with parents who have been through this journey before, try not to isolate yourself.  As a lady once told me, if you only have yourself to ask questions of, you will only get advice from yourself.  LLTF is here to support in any way we can, we understand the journey you are on.

Remember your baby has a lot of developing to do and a lot of hurdles to cross, take each day at a time, focus on the now, bond with your baby, celebrate milestones in the NICU/SCN, take lots of photos, and try to focus on the positives.  Premature children are the most beautiful, determined children I know, they are born with that extra “something”, we see so may grow up to be healthy, happy, independent little people.

Read through the section on our website called Survival Guide to NICU and Special care, it’s full of information and tips. http://www.lifeslittletreasures.org.au/prematurity/support-for-families/survival-guide-to-nicu-and-care/

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