My darling first daughter was born at 24wks, and what a roller coaster ride it was.

Not knowing what to expect when told we were in for the long haul. It was two steps forward, one step back with her. Laura was diagnosed with NEC (necroentercolitis) at 10 days old, and required bowl surgery. She was then diagnosed with a PDA duct that needed to be closed surgically at 30 days old. With so many blood and platelet transfusions, drugs and procedures that she endured, it was amazing that she was surviving. The hardest thing to endure through all  this was that I didn’t get to hold my precious baby until she was 41 days old.

Even with her laser eye surgery at 80 days old, for Grade 3 retinopathy, it was only then that she started to feel like  she was really my baby, as after that she was taken off the ventilator and moved to Special care, that I was able to be more involved in her care. After another few weeks, we returned to ICU to have her bowel stoma closed, and finally after 120 days, we were able to take our little girl home. After spending so long in hospital, you never want to see your baby back there.

At 10 months old, about 7and half months corrected, Laura become quite sick, having trouble breathing, her little chest rattling with a nasty cough, and generally being unwell. On a weekend, as unable to get to our GP, we took her to the Royal Children’s Hospital and were admitted straight away on oxygen. It was so frightening seeing her again being hooked up to monitors, needing oxygen, and looking again so helpless. The Doctors told us that she possibly had something called RSV, but they couldn’t be entirely sure until more tests were done. Thankfully, after four days of oxygen and constant monitoring, Laura seemed to be getting better, and we were sent home with a humidifier for her room and some anti-biotics.

It was so scary having to back in the hospital environment again, it brought back so many memories and we had just seemed to have gotten her home, and there we were again with a small and sick baby. After something like that, you tend to wake up at night every time you hear even the slightest cough, whether they are a tiny baby or even now when they are a big teenager.

Now at nearly 13, Laura has the physical scars to show from her times in hospital, but it is those times in hospital that long stays in the memory of her Mother.

Daniel Rivers born at 29 wks, 5 days gestation 1730grams 12/10/98

After going through what Laura, people often ask me how we possibly could have done this again. At the time, you don’t really think of those things.

Knowing that this was a high risk pregnancy and the chances of having another Prem baby were so high, it was no surprise that Daniel tried to enter the world at 23, 25, and 26 wks. Each time we managed to convince him to stay a little longer, but at the time of his birth, doctors were amazed a how much bigger he had gotten by staying with me for those few extra weeks.

Daniel was a much bigger baby than his sister, and was doing so much better. He didn’t have to spend as long in ICU, he didn’t have the operations or as many major worries as Laura. In Special care at around 4 weeks old though, he weakened a little and was found to have caught phenumonia. The doctors were concerned that his right lung would be a little weakened by this, but after a week of really battling, he started to turn the corner and showing signs of real improvement. Although, he didn’t come home on oxygen, it was only five days before he was discharged that he finally appeared not to need it to go home with. After 66 days, we could finally go home.

After all we had been through with them, when we left with Daniel we had hoped that we our days in hospital were over.

It was again in the early part of August, that I recognised in Daniel the same type of symptoms that Laura had showed the winter she was a baby. We again went straight up to the hospital, where they showed no hesitation in taking Daniel in and immediately giving him some oxygen. It was so hard to hear that he was going to be hospitalised, and again the doctors mentioned RSV to me. I must admit to not asking as many questions, as we had done this before, all I wanted was my baby to well again and go home.

I spent the next six days sleeping in a chair next to his hospital cot, watching him struggling to breath, scared of what may happen. Although Daniel was a bigger baby and longer gestation, RSV seemed to have struck him down harder. His right lung was so weak and troubled by this nasty virus. I hated being there, wanting to go home, but fear of leaving him as he seemed to be so sick. After nearly two weeks, we finally started to see some signs of improvement and were allowed to take him home. What a relief.!

For those first few winters, Daniel always seemed to struggle with coughs and with bronchial strains. Now at nearly 10 years old, he seems to have finally beaten all those early problems.

Mia Abbott born at 32wks 4 days gestation 1380 grams 2/2/07

After such a long time between my Prem babies, it was just as much of a shock having Mia at 32 weeks, as it was having Laura at 24 weeks.

My pregnancy was a horrible nightmare, but Mia’s time in hospital was relatively easy. Not needing any oxygen or ventilation, Mia was taken straight to special care, and spent her days getting learning to feed and getting bigger.

In comparison with her sister and brother, her hospital stay was far less stressful for her. It was much more stressful for her Mum, and her time in hospital brought back so many memories of previous experiences.

After spending 38 days in hospital, Mia was discharged at 2100 grams, a small but happy and healthy baby.

Now at 17 months of age (15 months corrected), so far this winter has been by far the worst. Mia has been constantly sick with ear infections, colds, conjunctivitis, and flu’s.

It is our greatest fear that something like RSV will again hit our family, and I know that we won’t rest easily until this period is over. I don’t think that I could bear to see Mia go through what Laura and Daniel did with being re-hospitalised. We will keep our fingers crossed!

A national organisation that unifies, and acts as a guiding body for existing prem support groups, helps to create new ones, helps to improve the treatments and outcomes available for premature infants, and represents the interests of these infants and their families in terms of health policies, funding and standards of care. It also offers a friendly ear to parents going through this rollercoaster experience.

If you would like to apply for a position on the committee or would like further information. Then please contact the support group in your area, the group details can be found at www.prembaby.org.au/contact-us or if there is no group in your area contact the NPF direct on: contact_us@prembaby.org.au

The birth of a premature or sick baby is a traumatic and emotional event for the parents. They will experience many emotions during this time, such as:

Fear of losing their child and/or long term problems for their baby

Guilt about not carrying baby to term or that they are sick

Anger – why my baby?

Sense of loss of a full-term/healthy pregnancy and the desired type of birth. Loss of experiences like that first hold and being discharged with your baby.

Lack of control/powerlessness. The parents must watch as others take on the role of primary care giver to their baby.

What NOT to do
Avoid comparing the situation to another child/baby’s illness or hospitalization. This only serves to minimize parent’s grief and the circumstances surrounding their situation.

Do not intrude/pry. The parents may feel the need for privacy. This might include not disclosing full details of baby’s condition or treatment. It may also include restricting visitation – parents often feel the need to protect their baby from stress, judgment and intrusions. They may feel the need to keep baby “all to themselves” while their baby is so fragile. Respect these boundaries and the parent’s need for time to bond with their baby and feel like a family. Remember that the needs of the parents come before yours.

Avoid giving parenting advice. Even though you are trying to help, this is not a full-term/healthy baby. Baby will have different needs to every other baby and need special care. Also avoid giving advice about baby’s medical care/treatment unless parents ask for your input.

Avoid abandoning the parents – Stay in touch. You will be able to tell whether or not they want more contact, visits, support, or to be left alone for a while. Respect their attempts to cope and take their lead on the level of involvement they need from you.

Do not place more importance on your feelings about what has happened than those of the parents. It has affected the parents far more than anyone else.

Avoid talking about setbacks that may happen or challenges that baby may face in the future (death, developmental problems, physical disabilities, etc.) If the parents are comfortable discussing these issues, they may bring them up.

Do not expect the parents to attend family gatherings, birthdays, etc. They are already spreading themselves thin while running their household, working and spending time with baby.

Do not visit when sick – Do not visit the hospital or the parents if you are unwell. A virus or infection that you or I can easily fight off may be deadly to a premature or sick newborn. If the parents become sick they will be unable to visit their baby.

How to help

• Congratulate the parents on the birth of their baby. Give the same attention/acknowledgement to them that you would give to any other birth.
• Offer to post birth announcement in the newspaper
• Acknowledge the stress and toll NICU/SCN life can take.
• Offer positive comments when visiting or being shown photos of baby.
• Offer to babysit siblings
• Offer to pass on information to other family members and/or friends.
• Cook meals for the family
• Offer to help out with housework, grocery shopping, lawn/garden upkeep, etc.
• Drive parents to the hospital. Parking can often be hard to find and/or expensive.
• Offer to keep parents company while they visit baby, or meet them for lunch or dinner.

What not to say
“Didn’t you know something was wrong?”
Comments like these are seeking blame. They will add to the mothers feeling that it is somehow her fault.

“At least you get a full night’s sleep while the baby is in hospital.”
The parents would like nothing more than to have their baby home. Comments like this minimize their feelings and the gravity of what they are going through. Mother may also be expressing breast milk every 3-4 hours, waking and wondering how her baby is, phoning the SCN/NICU at all hours to make sure things are ok, not relishing in a full night’s sleep.

“At least you didn’t get really big and uncomfortable.”
Mothers of premature infants would have loved those extra months of pregnancy for their baby and themselves.

“He/she must be in so much pain.”
This may add to the parents’ feelings of helplessness, guilt and sadness.

“When can I hold the baby?”
Put the parents’ feelings and needs before your desire to be involved, hold the baby and be included. Parents will be very protective and may not want anyone to touch or hold baby. Wait until the parents ask you if you would like a hold of their baby.

“Will they be normal when they get bigger?”
The parents are trying to get through this experience one day at a time. They do not need to be reminded about problems that may affect their baby in the future.

“It must be hard to watch someone else take care of your baby.”
Parents can find it difficult to take on, and feel confident in their role as this baby’s parents, largely due to the fact that someone else is caring for their baby and they cannot take baby home with them. It is a very difficult thing to have to ask to touch or hold your own baby and to have to leave them in someone else’s care every night.

“How do you leave him/her there every night?”
It is heart wrenching, painful and devastating to leave your baby in hospital every night. Try not to make the parents think about it any more than they need to.

“My grief lies all within,
And these external manners of lament
Are merely shadows to the unseen grief,
That swells with silence in the tortured soul.”
William Shakespeare

You cannot make their baby better or take away their pain. All you can do is be supportive and understanding.

back to information page

Ask the nurses to take foot and hand prints if baby is stable enough to do so. When baby is stable enough, it is a great idea to have hand and foot casts/impressions made. You will be surprised at how fast they will grow!

Start a journal/diary about your baby’s NICU/SCN journey. You can include information daily about baby’s condition, medications, weight, and other circumstances and events such as coming off a ventilator, graduating to a hot cot, operations needed, first bath, first breastfeed or suck feed, etc.

Talk to other parents in NICU/SCN. You will probably be surprised at how many parents want to share their experiences and feelings with others who are going through the same thing. You can build friendships and support each other.

A frozen meal for lunch or dinner makes a good ice pack for transporting EBM to the hospital.

Dress your little one in their own clothes if the unit allows it. This may not be possible until baby is stable enough and provided clothing doesn’t interfere with leads or lines.

Decorate baby’s incubator if the unit permits it.

Take video footage as well as photos

Invest in a good hand cream to combat dry, cracked hands.

Do whatever you need to to feel OK and if that means calling up the hospital at all hours, so you can sleep a little better, do it. You might be up expressing anyway!

Celebrate every step, every milestone, with photos, cards to baby, video footage, even a cake.

Don’t be afraid to do your little one’s cares. The nurses will help you and show you how.

Keep asking for kangaroo cuddles if your baby is stable.

Have hand sanitiser in your purse, for all the times you touch elevator buttons, eftpos machines, hand rails etc in the hospital. You need to take every measure to not catch a cold, because it is upsetting to be at home and not be able to visit your child.

If you are expressing, the expressing room is a great place to meet other mum’s. Even if you are shy, it’s really worth it, and before long you won’t even realise what you are doing.

Take care of yourself, eat lots of healthy snacks, drink lots of water.

Read stories to your baby, they know your voice.

Sing to baby. They know your voice and will be soothed an reassured by it.

If you don’t understand what a Doctor has told you, ask them again, and again, and again until you understand, and then the next day and the next day when you’ve forgotten.

Take your own coffee cup and cutlery to use for lunch

Educate yourself, read books on Premmies, surf the internet

Ask to keep old leads, arm bands, phototherapy masks, etc.

Most importantly, don’t blame yourself, let go of the guilt

Photography tips & handy hints
Light/flash reflects of the Perspex/plastic of the incubator. Have the side or top open if possible.

Many units have a digital camera. Ask nurses to take photos of any significant or special moments that happen while you’re not there.

You can put mum or dads wedding band on baby’s arm as a size comparison or use something else next to baby to show how small they are. A tennis ball is good for comparison or lay “normal” newborn baby clothes next to baby and photograph.

Take photos while doing cares.

If baby’s bedding needs changing, ask if you can put your hands in the incubator and hold baby up in your 2 hands while the sheets/blankets are changed – this makes as beautiful photo.

back to information page

The birth of a premature or sick baby is a traumatic and emotional event for the parents. They will experience many emotions during this time, such as:

Fear of losing their child and/or long term problems for their baby

Guilt about not carrying baby to term or that they are sick

Anger – why my baby?

Sense of loss of a full-term/healthy pregnancy and the desired type of birth. Loss of experiences like that first hold and being discharged with your baby.

Lack of control/powerlessness. The parents must watch as others take on the role of primary care giver to their baby.

What NOT to do
Avoid comparing the situation to another child/baby’s illness or hospitalization. This only serves to minimize parent’s grief and the circumstances surrounding their situation.

Do not intrude/pry. The parents may feel the need for privacy. This might include not disclosing full details of baby’s condition or treatment. It may also include restricting visitation – parents often feel the need to protect their baby from stress, judgment and intrusions. They may feel the need to keep baby “all to themselves” while their baby is so fragile. Respect these boundaries and the parent’s need for time to bond with their baby and feel like a family. Remember that the needs of the parents come before yours.

Avoid giving parenting advice. Even though you are trying to help, this is not a full-term/healthy baby. Baby will have different needs to every other baby and need special care. Also avoid giving advice about baby’s medical care/treatment unless parents ask for your input.

Avoid abandoning the parents – Stay in touch. You will be able to tell whether or not they want more contact, visits, support, or to be left alone for a while. Respect their attempts to cope and take their lead on the level of involvement they need from you.

Do not place more importance on your feelings about what has happened than those of the parents. It has affected the parents far more than anyone else.

Avoid talking about setbacks that may happen or challenges that baby may face in the future (death, developmental problems, physical disabilities, etc.) If the parents are comfortable discussing these issues, they may bring them up.

Do not expect the parents to attend family gatherings, birthdays, etc. They are already spreading themselves thin while running their household, working and spending time with baby.

Do not visit when sick – Do not visit the hospital or the parents if you are unwell. A virus or infection that you or I can easily fight off may be deadly to a premature or sick newborn. If the parents become sick they will be unable to visit their baby.

How to help

• Congratulate the parents on the birth of their baby. Give the same attention/acknowledgement to them that you would give to any other birth.
• Offer to post birth announcement in the newspaper
• Acknowledge the stress and toll NICU/SCN life can take.
• Offer positive comments when visiting or being shown photos of baby.
• Offer to babysit siblings
• Offer to pass on information to other family members and/or friends.
• Cook meals for the family
• Offer to help out with housework, grocery shopping, lawn/garden upkeep, etc.
• Drive parents to the hospital. Parking can often be hard to find and/or expensive.
• Offer to keep parents company while they visit baby, or meet them for lunch or dinner.

What not to say
“Didn’t you know something was wrong?”
Comments like these are seeking blame. They will add to the mothers feeling that it is somehow her fault.

“At least you get a full night’s sleep while the baby is in hospital.”
The parents would like nothing more than to have their baby home. Comments like this minimize their feelings and the gravity of what they are going through. Mother may also be expressing breast milk every 3-4 hours, waking and wondering how her baby is, phoning the SCN/NICU at all hours to make sure things are ok, not relishing in a full night’s sleep.

“At least you didn’t get really big and uncomfortable.”
Mothers of premature infants would have loved those extra months of pregnancy for their baby and themselves.

“He/she must be in so much pain.”
This may add to the parents’ feelings of helplessness, guilt and sadness.

“When can I hold the baby?”
Put the parents’ feelings and needs before your desire to be involved, hold the baby and be included. Parents will be very protective and may not want anyone to touch or hold baby. Wait until the parents ask you if you would like a hold of their baby.

“Will they be normal when they get bigger?”
The parents are trying to get through this experience one day at a time. They do not need to be reminded about problems that may affect their baby in the future.

“It must be hard to watch someone else take care of your baby.”
Parents can find it difficult to take on, and feel confident in their role as this baby’s parents, largely due to the fact that someone else is caring for their baby and they cannot take baby home with them. It is a very difficult thing to have to ask to touch or hold your own baby and to have to leave them in someone else’s care every night.

“How do you leave him/her there every night?”
It is heart wrenching, painful and devastating to leave your baby in hospital every night. Try not to make the parents think about it any more than they need to.

“My grief lies all within,
And these external manners of lament
Are merely shadows to the unseen grief,
That swells with silence in the tortured soul.”
William Shakespeare

You cannot make their baby better or take away their pain. All you can do is be supportive and understanding.

back to information page

Thank you
NPF Committee

Celebrate Australia’s Little Miracles with the National Premmie Foundation’s

Children’s Rose Fundraiser

Purchase a rose for yourself, as a gift for a family member or friend currently in the Neonatal Intensive care unit, or to support the work of the National Premmie Foundation. Then plant your rose and watch it flourish as it flowers and grows over the years. These special roses help raise funds to support the work of the National Premmie Foundation.

Important note: We are unable to deliver to TAS due to quarantine restrictions

Price: $16.00 per rose

Postage: $10.00 for 1 rose, $4.00 per each additional rose

When: Roses are delivered in the month of July 2010 directly to your nominated address.

How to order:

Credit Card

• For orders up to 5 roses click on the “pay via credit card” button below

• For orders over 5 roses to pay via credit card please email us at contact_us@prembaby.org.au and we will forward an invoice to you for payment

Direct Deposit

• View our order form for bank details (at bottom of form)

Cheque/Money Order

• Print our order form and send it to us via post with your cheque and/or money order

Please note: We cannot place personal cards/messages with the roses.

We are looking for families who are happy to appear in local and National Press.

If you have had a premature baby and experienced RSV or bronchiolitis we want to hear from you!

We have several media outlets looking for focus families who can tell their story as well as appear in print, on radio or television. All of the families will have the support of NPF’s media representative and whilst no fee is payable, all expenses will be paid if any travel is involved. To be an NPF media star, send your story in  less than 100 words to info@prembaby.org.au and we will be in touch if you are successful. Deadline for stories is May 1^st, 2008. Good Luck!