Circle Of Care Optimising Outcomes for Newborns (COCOON)

Caring for yourself

  • Self-care is important for all of us and is even more crucial for parents of sick and preterm infants. During your baby’s time in Butterfly, you will have a lot to contend with in addition to worrying about your sick baby. You will be confronted by new faces, new language, new equipment and a new environment. As well as all of the difficulties you’ll face inside the ward, our families still have to deal with day-to-day pressures from the outside world such as getting older children to school on time, running a business, and the upkeep of the family home. 

    We hope the following suggestions will help to ease the burdens by teaching you about life in Butterfly. You can read the educational materials at your own pace to get tips on how to look after yourself and to learn many of the practical skills you will need to care for your baby, such as how to change a nappy or use a nasogastric tube for feeds. Of course, nothing can take the place of the support and mentoring that can be offered by your bedside nurse and the multi-disciplinary team caring for your baby, but we hope that having this information gathered together in one place and available at your fingertips will be a good start; helping you to settle in and making you feel more comfortable during your baby’s time with us.

    Please ask us if you need help any time, day or night, and remember that your baby needs you to be as healthy as you can be so never feel “guilty” for taking time out to look after yourself.

    Here are some suggestions from our social workers on how to look after your self during your Butterfly journey:

    Physical care

    • get outside - the fresh air will do you good
    • exercise is great for stress, so go for a walk around Royal Park
    • eat healthy and energising fresh food, and try not to skip meals
    • drink plenty of water
    • try to fit in a good night’s sleep whenever you can 
    • create routines for you and your family

    Emotional care

    • spend time with friends and family away from the ward
    • accept offers of help and support
    • ditch self-criticism/judgmental thinking about your actions, feelings and emotions
    • seek support from a social worker, peer, counsellor, or one of our Infant Mental Health team
    • write down your feelings and thoughts in a journal
    • take time out together with your partner 
    • talk with other families on the ward – the parent-to-parent support you can give one another is worth its weight in gold

    Spiritual care

    • take time to be by yourself to think or write
    • take a walk in a park or out in nature
    • do something creative – paint, draw, write, dance, sing
    • seek support from RCH’s Pastoral Care team or your community leaders

    How NICU may impact your emotional and mental health

    Having a baby in the Newborn Intensive Care or Special Care Unit is a traumatic experience.

    No one is ever really prepared. You have probably felt emotions during your baby’s Butterflt stay that you never imagined feeling. You have celebrated things you never knew you would, and seen things you never imagined.

    All of the emotions that you experience here – grief, guilt, depression, anxiety, fear – are normal and appropriate. They are natural responses to traumatic events. They are not a sign of weakness. They are a healthy part of adapting and adjusting to being your baby’s parent.

    Here are some of the things you may be feeling, or may feel in the coming weeks and months:

    Grief and guilt 

    Grief is what you feel when you lose something that is important to you. If your baby is here it is normal to grieve. You are allowed to feel sad and angry that your pregnancy didn’t go as you expected, and that your baby has needed medical care. You might be feeling guilty that you have done something to cause this. The truth is that you can do everything "right" and still end up in NICU, and you can do everything "wrong" and still have a healthy birth. 

    Talk to your baby’s doctors and ask questions. You may or may not be able to find reasons why this happened. While it’s important to find out what you need to do to take care of your baby and yourself, it is also important for you to forgive yourself and your body.

    Depression, anxiety and acute stress

    Sometimes it can be hard to tell the difference between feeling tired and feeling depressed. While your baby is in Butterfly, you are probably trying to keep up with a busy schedule of driving back and forth to the hospital and managing things both here and at home. It’s understandable if you’re feeling emotional and exhausted. However, it’s important for you to recognise signs of depression and know what to do if the symptoms persist. 

    Sometimes it seems like Butterfly is the perfect place for creating anxiety and stress! While your baby is here, you learn to be hypervigilant. You wash your hands hundreds of times and watch the monitors and equipment to keep track of everything your baby is doing. It can all make you feel a little crazy. 

    Anxiety can feel like:

    • Nervousness – you’re aware of all the things that can go wrong and feel like you’re always waiting for the next bad thing to happen.
    • Fearfulness – you’re afraid of what happens here and worried about what your baby is feeling.
    • Anger and irritation – you’re either mad at the people around you or mad at the situation, but you can’t stop feeling annoyed.

    You may feel:

    • Frightened – you may have witnessed terrible and terrifying things.
    • Disconnected – you might feel like this isn’t real and that these things can’t possibly be happening.
    • Surprised by what you are feeling – a sound or smell might trigger an overwhelming reaction or make you feel like you’re reliving something that already happened.

    While all these feelings are normal, it is important for you and your family to recognise if they become a problem and know how to get the help and support you need if they do.  

    Where can I get help if I need it?

    You can ask your bedside nurse or the ward clerk to contact one of our Social Workers or Infant Mental Health specialists.

    Talk to other parents on the ward or in the Parent Lounge. They will tell you if they don't feel like talking but many parents do want to share their experiences. There is no substitute for the parent-to-parent support that can be offered by people who are going through the same experiences. Foe example, one mother told us that when her baby “did his first poo after his surgery” she wanted to shout it from the rooftops she was so excited, but none of her friends “got it” as their babies weren’t in hospital.
     

    If you would like to reach out to peers beyond the ward, please click on the following link to find a list of support groups: http://www.rch.org.au/supportgroups/

    We have also hand-picked some websites for you to look at here: 

    • Life's Little Treasures: Supporting families of premature and sick babies.  
    • Miracle Babies: Supporting families of premature and sick babies.   
    • Australian Multiple Birth Association: Peer support and education for families of twins or higher order multiples. 
    • PANDA (Perinatal Anxiety and Depression Australia): Information, telephone helpline, referrals for counselling.  
    • Caring Mums: Home-visiting trained volunteers, mums themselves, who provide a shoulder to lean on for mothers of newborn babies. 
    • Child FIRST: Child and family information, referral and support teams across the state. Each Child FIRST provides a central referral point to a range of community-based family services and other supports within each of their catchment areas.  Ask your social worker about your local Child FIRST.
    • WIRE (Women's Information and Referral Service): Offers support for issues such as family relationships and legal issues, domestic or family violence, housing and homelessness, and general information. Phone 1300 134 130.