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Moving on from Butterfly

  • When the time is right for you and your baby, you will move on from Butterfly. Most babies who leave the ward go home, either directly or via Care by Parent (see “Where to stay” in "My room" section of Butterfly tab in the My RCH app for more information). About a third of babies move on to other wards within RCH or go back to their referring hospital or a hospital closer to home. Sadly, a small number of babies each year do not survive to leave with their parents. These patients usually receive Palliative (comfort) Care before they pass. There is a separate section on this if you would like to read it.

    The brief section on “Going home” in the “My ward” section of the app explained how important it is to start planning for discharge almost as soon as you arrive! This is to avoid needlessly prolonging your baby’s stay in hospital and all the potential difficulties doing so might cause for you and your family.

    One of the most important reasons for creating the COCOON model of care was to prepare families for the time when they will leave Butterfly. COCOON aims to engage families as early as possible in their baby’s care and teach them the skills that they will need to feel confident and competent to look after their babies.

    If you work through the COCOON educational resources via the app or website with your baby’s bedside nurses, care coordinators and doctors during your baby's stay, we hope that you will feel well prepared for your baby’s discharge. The earlier you start the process after admission, the earlier you will feel comfortable taking care of your baby’s day-to-day needs.

    “Baby stuff”

    In the lead up to going home, many parents ask us to advise them on what “baby stuff” they need before they can take their baby home.  Here is a list of practical items:

    • Car restraint
    • Pram or travel system
    • Breast pump if you are expressing breastmilk
    • If you are using EBM or formula, you will need bottles, sterilising equipment and a bottle warmer
    • A safe, clean surface for nappy changing; nappies and wipes
    • A baby bath
    • Clothes, wraps and blankets
    • Suitable baby toys and books
    • Cot or bassinet for sleeping.  Don’t forget about Safe Sleeping Guidelines! You can find them at Sids and Kids.

    There are many other items that are marketed to parents as “must haves” but a basic list, as above, can initially be limited to the themes of sleeping, eating, travelling, dressing, nappy changing, bathing, and playing. Once you get home you can figure out if you really need the other “must haves” or not.

    Before you go, the ward clerk, your baby’s care coordinator, or another staff member will provide you with the following, as required:

    • A medical discharge summary that details your baby’s reasons for being in Butterfly, what treatments they required and what, if any, ongoing treatment needs to be continued
    • If your baby did not have a care coordinator assigned to them during their stay, their follow-up appointments will be listed in the discharge summary. If they did, you will be given a copy of their appointments on a separate page. If you do not receive the appointment times before you go, they will be sent to you in the mail.
    • A copy of the discharge summary is also usually sent to your GP, Maternal Child Health Nurse (MCHN), and your baby’s referring hospital.
    • A prescription for medications or special formula, if required. Often the medications themselves are supplied before you leave and our pharmacist or one of the doctors will tell you how to give the medicine(s).
    • Details of any extra teams who will come to see your baby at your home, if required. For example, your baby may need to be seen by the Post-Acute Care (PAC), the RCH@Home, or the Home Enteral Nutrition (HEN) teams.
    • Details of any extra equipment you may require at home, although this is usually delivered BEFORE discharge. Examples include home oxygen or suctioning supplies. You may need to pick up some additional supplies yourself from the Equipment Distribution Centre (EDC) on Level B2 near the Green Lifts.

    Remember, going home does not mean going it alone!

    • You can continue to refer to this information for tips on reading your baby's cues, routines, feeding, cares, etc., or anything else you found helpful during your stay
    • We will most likely see you back at one or more of our Specialist Clinics 
    • In the meantime, you can contact your nurse coordinator or bedcard consultant after discharge, if necessary, by calling Butterfly on (03) 9345 5000, or the Department of Neonatal Medicine administrative assistant on (03) 9345 5008.
    • Don’t forget that there is plenty of support on offer outside of the hospital.  You can contact your GP or MCHN; or call the Nurse-on-Call Helpline (1300 60 60 24) or contact your local hospital Emergency Department if you need advice outside of normal working hours. 

    Family resuscitation training videos

    Before you go home, you may want to watch the resuscitation videos we have made to teach parents some Basic Life Support techniques. We hope that you will never need to resuscitate your baby at home but you may feel more comfortable knowing how to do it just in case it is ever required. Please feel free to ask any member of your baby's clinical team if you have any questions about the videos.

    Follow this link to view our family resuscitation training videos.