The Premmie Promise Foundation

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In 2012 many of our lives were changed forever  when we were introduced to the world of the Micro prem with long battles ahead and friendships forged along the way  and because of our journeys being still fresh in our minds we created The Premmie Promise Foundation.

With encouragement ,tears, laughter and joy we celebrated every milestone together sometimes with sadness as our precious bundles hit hurdle after hurdle …but still they hung on giving us all hope.

Many tears in the corridors as some of our amazing wee champions didn’t win the battle and grew their Angel wings and it is for those still fighting their battle or those that need us .

This Charity was created by strong bonds of friendship that continue to grow every day, to remember our individual journeys and to remind us of how far we have come, to give hope and encouragement to those who have now filled our cot numbers and our shoes as parents on  their new journey…to remind us all that we do not walk alone we are right there … as we ourselves have walked in those shoes and tread those corridors… to remember that a Premmie family doesn’t just stop when you get home its about giving continued support to those at home from birth to teenage years .

 

 

 

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National Premmie Foundation Re-Launch Night

The re-launch of the National Premmie Foundation will take place on Thursday 17th November at ‘The Pier’ in Port Melbourne. We hope that many premmie parents will attend the function to share details about their journey whilst also attracting media and sponsors so that we can continue to raise awareness about premature birth in Australia.

Food and drinks will be served and there will be guest speakers throughout the evening.

We look forward to meeting you on the night.

 

 

If you would like to make a payment via bank deposit please fill in the following online form. Once submitted, the Foundation’s bank details will be emailed to you for deposit.

For credit card purchase please click below and make a payment through paypal.

$40.00 per ticket.

 

We look forward to celebrating with you.
National Premmie Foundation Committee

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

If you have had a baby in a special care or a neonatal intensive care unit, you may like to “give something back” or if you have worked in such environments and have an understanding of the unique journey experienced by these families then perhaps you’d like to become involved in the National Premmie Foundation.

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

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National Premmie Foundation – Family and friends

As a friend or relative of someone who has just experienced the birth of a premature or sick newborn, you might be unsure about how to act. Do I congratulate the parents? Do I offer condolences? Do I avoid them/leave them alone? What should I do and say? Each situation is different and not everyone will react in the same way, but hopefully this information will help you relate to, and support these special new parents.

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.

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Links

Bubhub
The Bub Hub is Australia’s leading pregnancy and parenting website portal. Pregnancy advice, parenting advice, comprehensive Australian directory of pregnancy, baby, parenting & child. BubHub has a commitment to supporting all families in Australia and has information and articles on negotiating the prem journey in Australia.

Early Birds
Earlybirds is a beautiful new collection of baby clothing designed by the mother of a premature baby, especially for premature babies. Boutique clothing, high quality to ensure maximum comfort for your little one!

Essential Baby
The Experience of 114,000+ Parents at Your Fingertips! Australia’s most active online parenting and family communities providing information and resources for conception, pregnancy, birth, parenting and beyond! EB also hosts one of Australia’s largest women’s forums between 800-1000 online in regular daily periods. Well Worth a Visit!

No Fuss Feeding
No Fuss Feeding and Swallowing Centre provides specialist help for a range of feeding problems, facts on feeding babies, toddlers & children, breastfeeding care programs for mums and more.

The Pero Clinic
The Pero Clinic treats people with feeding or swallowing problems, offers professional development about swallowing disorders (dysphagia), and is a centre for research on swallowing assessment and rehabilitation

Think Twins
Think Twins is Australia’s biggest online store for families with twins, triplets and more, offering a range of clothing, books, stationery and gifts specifically for twins. Whether you need a twin feeding pillow, premature clothing sets or the phone number of your local twins club, Think Twins will make life as a parent of premature twins a little easier.

Wee Bundles.com
Custom made cloth preemie dolls are made from 100% polyester fabric in five color choices. They have a fleece inner liner and are stuffed with a combination of all new stuffing and doll pellets(both metal and plastic). The joints are made with metal buttons. Faces can be painted, sculpted or left blank upon request. All dolls come with a hat and preemie diaper.

Huggies
Join the Huggies Baby Club for special offers, baby information, fun & games!

Mum Zone
Your one stop pregnancy, baby, toddler and parenting website full of useful and practical resources, ideas and tips to make life as a mum just that little bit easier and more fun!

Link To Us

NPF is unable to endorse or accept any responsibility for the accuracy of information contained in any of these websites listed.

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Treatment of Pre-term labour

If preterm labour is determined, there are a number of treatments that can be used to stop or delay the labour. These include bed rest, hydration and administration of Turbutaline or Magnesium Sulfate.

If it appears that birth is imenent and the baby is between 24 and 34 weeks gestation, a corticosteroid may be given to the mother 24 hours before birth in an attempt to increase the baby’s lung and brain development.

Although bed rest, fluids and labour-inhibiting medications including steroids may be prescribed, these attempts often merely offer a short delay in the delivery to allow physicians to speed the development of the baby’s lungs and, if necessary, transfer the mother to a hospital that is better equipped for premature babies, such as one with a neonatal intensive care unit (NICU).

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The material provided here is for informational purposes only and should not replace, or be used as a substitute for, professional medical advice


 

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Survival Statistics

What are the chances that my baby will survive?

Many factors determine an individual baby’s chances of survival. The most important factors are:

  • The baby’s gestational age (number of completed weeks of pregnancy at the time of birth
  • The baby’s weight
  • The presence or absence of breathing problems
  • The presence or absence of congenital abnormalities or malformations
  • The presence or absence of other severe diseases, especially infection

In the smallest babies, gestational age is usually most important because it determines if the baby’s organs, particularly the lungs, have developed enough to allow the baby to live within the limits of our current technology. Your baby’s doctor will be able to give you the best estimate of your baby’s chances since he/she can take into consideration many of the above factors. But, no estimate is perfect. Some babies suddenly get sick and die unexpectedly; others defy all odds. General estimates of survival for babies who receive neonatal intensive care are below:

 

Source: NSW Neonatal Intensive Care Study (NICUS) data for 2001 – 2004.

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The material provided here is for informational purposes only and should not replace, or be used as a substitute for, professional medical advice



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Siblings

What do I tell my other children?
It is best to be honest with them. Provide them with the information they seek. However, give them the amount and detail that is appropriate for their age. Very young children ask simple questions and need simple answers. Refer to the new baby by his/her first name, as for any other member of the family.

What are some common reactions of young children to having a baby in the NICU/SCN?
Even very small children can sense that you are upset or sad, and their lives will certainly be altered by your emotional state and the time needed to be with your new baby. Common reactions include:
Thinking THEY CAUSED the baby to come early or be sick.
Magical thinking is very common in children 2-6. This is believing that thoughts or wishes can make things happen. They will not be happy about sharing their parents with a new sibling even though the idea of a new brother/sister may be exciting. They may have wished for the baby not to be born, or they may have accidentally kicked your tummy when being held and think that is whymthe baby is early and sick. Assure them that they did not cause the baby to come early or to be sick.
Thinking that they made you sad or upset by something that they did or said.
Acknowledge that you are sad and unhappy, but assure them that it is not because of something that they did or said, but because the new baby is so small or sick.
Acting out.
Their family environment and their usual routine are changed, and they can sense that those around them are emotionally upset. This makes them feel insecure. They express this by acting out, the only way they know to get more attention. Try to find someone whom they know well and like (grandparent, close friend, favorite baby sitter) who can provide them with extra attention, not just when you are gone but when you are at home too. Also, stick to their usual routine as much as possible, such as time for naps, bed, meals and other activities. If they are in day care or preschool, let their teacher know what is going on so s/he can provide more understanding and attention.
Feeling insecure, left out or alone.

Try the approaches listed under Acting Out. Assure your child that you still love him/her just as much as before the baby came. If your baby’s NICU/SCN has sibling visitation, bring your child to visit the new brother or sister.

Thinking they are sick too.
Having more tummy aches, or other hurts. Try above approaches for increasing attention to them.
Fearing that they will catch the baby’s illness.
Most children know that the common illnesses which they have experienced are spread by contact with someone who is ill (colds, chickenpox, etc.). Assure them that they and you cannot get the baby’s illness.
Wondering who will care for ME when the baby comes home?
Show them that they are still very important to you and to the family. Talk to them about ways that they can make the baby part of the family. Show them that you are proud of things that they can do for themselves that babies can’t.
Regressing.
When children are emotionally stressed, they often regress; that is, return to less mature behaviour. For example, they may have more “accidents” if recently potty trained. They may stop using newly acquired words or refuse to dress themselves. They may start thumb sucking again, use a pacifier more often, want a bottle, or return to using a security blanket. Don’t scold, punish, or talk negatively to them about these behaviors. They are a child’s way of telling you that s/he needs more of your love and attention. When the child feels secure again, s/he will return to the former level of development.

Should my other children visit my new baby?
Most nurseries encourage the baby’s brothers and sisters (siblings) to visit. Studies have shown that children who visit are more responsive to their mothers and to the new baby than those who do not visit and for whom the baby remains a stranger while in the NICU. No negative effects have been identified. Children do not usually show signs of fear or anxiety and most want to, and should be encouraged to, come back again. The visits should be planned with the age of the child in mind. The length of the visit should be appropriate to the child’s attention span. Often very young children only want to stay a few minutes. Children over five may need more time to feel comfortable. They are more aware of how the baby is different from full term babies and may need to be encouraged to interact with the baby.

Nurseries have rules/guidelines for sibling visits. Find out about them so that you can plan their visit.

Common NICU Rules:

  • Children should be healthy, not have fever, a cold, diarrhea, vomiting, coughing or sneezing.
  • Children should not have recent exposure to communicable diseases such as chicken pox, roseola.
  • Children should wash hands and follow other procedures for visitors in the nursery.
  • Children should be supervised during the visit. It is best to have two adults when a child is visiting, so one can supervise the child once he/she is through visiting.
  • Children should remain at the bedside of their own sibling, and not be allowed to go from bed to bed or run around the nursery.

Prepare Your Children in Advance for Their Visits
Give them an idea of the size of the baby. Often small children expect a life-sized playmate. A picture of the baby will help.
Describe where the baby will be (e.g., in a room with many other babies and people and sounds, including alarms; in an isolette or on a bed under a warmer). If you have a picture of the baby, go over some of the things in the picture and why they are there: the isolette keeps the baby warm; wires attached to the baby’s chest with patches to be sure the baby is breathing OK; patches over the eyes to keep out bright light; etc. If you don’t have a picture of your own baby, try drawing a picture for your children, or show them pictures from a book.
Assure the children that the various things that are in, around, or attached to the baby don’t hurt, but are needed to help the doctors and nurses take care of the baby.
Tell the children what they can do to visit with their brother/sister. This includes talking to the baby and usually touching the baby. Encourage the children to bring something for the baby to help them feel the baby is really their brother/sister and a part of the family. This can be picture of themselves, a picture they have drawn or painted, or something for the isolette such as a small toy or balloon.

What are common concerns of children while visiting?
Pay attention to your children’s comments and emotional reactions during the visit, and help them understand the things that worry them. Common worries include:
Why are the baby’s eyes covered? Why are the baby’s eyes shut? Can s/he see?
Does ______ hurt the baby (monitors, IVs, eye patches, etc.)?
Worries about being in the isolette. Will they ever get out? How do they get out?
Will the baby grow more hair?
How does the baby eat? Can I feed the baby?
Can I hold the baby, or, why can’t I hold the baby?
After the visit, ask them if they have questions about the baby, about the nursery and how they feel about their brother/sister. Make them feel that their visit was important for the baby, that how they feel is important to you, and that they are as important to you as the baby is.

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Meriter Health Services. Preemie Health. Retrieved September 7, 2007, from http://www.meriter.com/living/preemie/other/siblings.htm

The material provided here is for informational purposes only and should not replace, or be used as a substitute for, professional medical advice


 

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Being the parent of a NICU/SCN baby

Approximately 40,000 babies are admitted to Special Care Nurseries each year in Australia, for a variety of reasons. Approximately 21,000 of these babies are born prematurely, others have congenital abnormalities, breathing difficulties or injuries resulting from birth, some have infections, and there are many other reasons why babies may be admitted. Around 6,000 babies require critical and intensive life support each year. (Laws, Grayson & Sullivan 2006)

You and your baby may not have gotten your full 9 months, the birth plan went out the window, the celebrations of birth missing and you must now experience the rollercoaster ride of ups and downs, setbacks and triumphs, which very well could be one of the greatest life challenges you ever face.

Powell (2001) states that “ Most people experience the loss of someone or something of great importance several times during their lives (Bonanno, 2001). When grief is related to loss of an experience, not a death, how does one grieve or cope? Boss (1999) coined the term “ambiguous loss” when studying the wives of pilots missing in action in Vietnam and Cambodia. They had no information and no official verification that anything had been lost, thus were filled with conflicting thoughts and feelings. This ambiguity aptly describes the feeling of loss after a premature birth. The parents have a live baby, thus there is no proof that anything was lost. Furthermore, society expects joy at the birth of a child, so the loss that parents of a newborn premature baby feel is confusing. The final trimester of a pregnancy is a time for the mother to prepare physically and psychologically for the birth. Since prematurity interrupts the natural order of a pregnancy with little to no warning, parents are often in shock and confused about their role.

Reading parents’ narratives of the birth of their preemies, it became increasingly clear that they were attempting to manage an “ambiguous loss”. The respondents were undergoing various emotions of grief because they were mourning the loss of a full-term pregnancy. The participants were shocked, saddened, and angered that their child was suffering from a serious medical condition and may die. However, they were unable to experience the emotions of grief to their full extent because their baby was alive. The participants did not know how to communicate and accept their grief because they were to be celebrating their child’s birth. This “ambiguous loss” resulted in an overarching “joy-grief” contradiction. ”

Parents of NICU/SCN babies often feel a sense of loss, guilt, regret and distress about how their baby came into the world. Many deliveries resulting in NICU/SCN admission are traumatic ones, and not how we planned or imagined having our baby to be. Some of the common feelings are:

  • Loss at not being ready to not be pregnant any more
  • Loss and regret that you and your baby didn’t get your full 9 months
  • Guilt that you didn’t carry your baby to term
  • Guilt that your baby has a congenital abnormality or problems resulting from labour and delivery
  • Loss and regret at not having the birth you had planned or wanted
  • Trauma and distress at what you went through during labour and delivery
  • Loss of the celebrations related to birth
  • The loss associated with not having photos or footage of your baby’s birth or straight after birth
  • The loss of not getting that first hold straight after birth

These are all normal feelings. It can help to talk or write about your experience, talk to parents who have been through similar experiences, talk to a qualified counselor/social worker or psychologist, bond with your baby, celebrate milestones in the NICU/SCN, take lots of photos, and focus on the positives.

Having your baby stay in the NICU or SCN can be a very stressful, emotional and traumatic time for baby and parents. You are meant to be celebrating the birth of your baby but must experience a rollercoaster ride of emotions and the new experiences of having a premature or sick newborn. You are probably experiencing a range of emotions and feelings like:

  • sadness anger
  • loss blame
  • fear disapointment
  • guilt isolation or loneliness
  • powerlessness anxiety
  • numbness grief
  • overwhelmed

Understand that these feelings are normal. Hopefully the knowledge that what you are feeling is common to most NICU/SCN parents gives you some comfort or relief and helps you to know that you are not alone.

One of the most difficult things about these emotions is that you may also be experiencing feelings of happiness, love and joy. These contradicting feelings and emotions can be very confusing and exhausting. You are happy to see your baby, but not happy that they are here like this. You feel joy when they make progress but are still saddened by what they are going through and the struggles they still face. Take and experience each emotion as it comes. Don’t feel guilty or silly about how you are feeling. Your feelings are valid and you do not have to explain or justify them to anyone.

It is important during this difficult time that you and your partner (if you have one) support each other.
First accept that you may have different feelings and emotions even though you are experiencing the same situation. If your partner wants to talk and share their feelings, listen without judgment or trying to fix the situation. Share your thoughts, fears and feelings with each other. Avoid conflict – you are both going through a difficult time. Lean on each other, compromise, talk about problems. Most of all remember that you both share the bond of being parents of your little one and feel the same love for your child. You both want what is best for him/her.

Parents who take care of their own needs during a difficult time are better able to support their baby. Most parents are able to cope with having a NICU baby. However there are times when a parent should seek additional professional help. These occasions include any parent feeling or showing any of the following:

  • Prolonged agitation or anxiety
  • Depression or extreme hopelessness
  • Impaired daily activities or job function
  • Suicidal thoughts
  • Prolonged, inhibited or absent grieving
  • Extreme physiologic/psychological reactions
  • Substantial guilt
  • Substance Abuse – alcohol or drug use
  • Psychotic states
  • Uncontrolled rage

Parents of NICU/SCN are thought to be at a greater risk of Post Natal Depression and Post Natal Post Traumatic Stress Disorder . The term Post Traumatic Stress Disorder (PTSD) refers to a disorder that can occur following the experience or witnessing of life-threatening events. It is difficult for some people to understand that childbirth can be such an event. The Birth Trauma Association in the United Kingdom has identified some of the causes of Post Natal PTSD as mode of delivery, mothers fear of her own safety or that of her child, lack of control, attitudes of staff, inadequate pain relief, lack of support and previous traumatic event.

As mentioned previously preterm labour and delivery is often traumatic. Mothers may not have control over the mode of delivery, with some women requiring emergency c-sections or instrumental deliveries that were not what they wanted but were necessary for ensuring the best chance for themselves and their baby. When you know you are delivering your baby early, there is always the fear that they will be sick or die. Some mothers of premature infants felt a lack of control whilst in labour and during delivery. Their birthing experience wasn’t a “normal” full-term one and therefore they had to rely on the medical staff to do what needed to be done and decisions may have needed to be made without much discussion or explanation. Support is important in helping parents of NICU and SCN babies cope with their feelings of trauma, stress, sadness, etc.

Effective Strategies for Coping
During the first few hours, days & weeks following the admission of your baby it is helpful to:

  • Take it one hour at a time, one day at a time. If needed, just take things moment by moment.
  • Try to maintain some type of a normal routine or develop a new normal one.
  • Get enough sleep or at least enough rest.
  • Participate in regular exercise to relieve stress and tension. Even walking helps.
  • Eat a balanced diet. Limit junk food. Drink plenty of water.
  • Avoid using alcohol, medications or other drugs in excess or to mask the pain.
  • Take time to do things and be with those people who comfort and recharge you.
  • Talk to Nurses, Social Workers & other NICU Parents for advice. Those who care for babies and who lived through and survived similar events can offer valuable insights.
  • Find creative ways to express intense feelings. Paint, photograph, scrapbook, draw, create something. There are even special journals for NICU babies.
  • Remember coping skills you have used to survive past life challenges. Draw upon those inner strengths again for this current challenge.
  • Celebrate the firsts. First touch, hold, nappy change, feed, coming off ventilator or CPAP, getting tubes taken out.

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The material provided here is for informational purposes only and should not replace, or be used as a substitute for, professional medical advice



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