Coping with having a premature or sick newborn in a neonatal intensive care unit (NICU) or special care nursery (SCN) can be extremely difficult. It can be also be a very stressful and lonely time for parents and carers. It's common for parents to feel a range of complex emotions, and each person will handle the crisis in their own unique way.

Over the Miracle Babies Foundation's 15 Years of Nurturing, many parents and carers have shared their stories and advice with us. A lot of the advice are things they wish they knew when they started their journey.

Here is some practical advice NICU/SCN parents should read to help navigate their way through the hospital journey.

1. Try to learn all you can about the medical equipment, medical conditions and staff who are helping to care for your baby.
2. Don’t be afraid to ask questions, the NICU and SCN staff have a wealth of knowledge and are there to help you.
3. Ask to spend time having cuddles, don’t wait to be offered. Kangaroo care can help your baby maintain a stable heart and breathing rate, and develop better both physically and mentally.
4. Spend time reading stories to your baby. Your baby has spent months in-utero listening to your voice and it can be a truly special time for both of you to share.
5. Keep a journal of your baby’s progress and your feelings while you are in the NICU.
6. Say “hello” to other parents in the NICU or SCN and make time to chat with each other. The friendships and support networks formed in hospital will be a great comfort once you have been discharged.
7. Take lots of photographs and video footage of your baby. Some parents take pictures of their baby next to an item, such as a wedding ring on the baby’s wrist or arm. This will give people an idea of your baby’s size later on. Or you can possibly take some hand/footprints if your baby is stable enough.
8. Be as much of an active participant in your baby’s day as you can, it’s all part of preparation for graduation day.
9. Keep yourself healthy, especially if you’re in for the long haul, you will need the stamina.
10. The routine handwashing can leave your hands dry and cracked in a short amount of time. Invest in a good hand cream to help with dry hands and keep a hand sanitiser in your purse to use after you touch money, handrails, etc.
11. Celebrate every milestone, no matter how big or small.
12. Leaving your baby in hospital can be a very emotional time. Do whatever it takes to help you feel okay, even if that means calling the hospital numerous times a night to check how your baby is doing. Be open to telling people you aren’t coping or how you are REALLY feeling – you need the support too.
13. If you feel you need a break from visitors, don’t feel guilty. Those that love you will understand so don’t be afraid to tell them when you need some space.
14. While your baby is sleeping, spend time just watching them. Observing their facial expressions and activities will help you get to know your baby and their little personality.
15. Above all, try and stay positive and be kind to yourself.

We hope some of this advice from other parents has been helpful.

ADVICE FOR GRANDPARENTS

We’re also looking for similar advice and tips for grandparents of NICU/SCN babies. If you are a grandparent who has been through the Miracle baby journey with your grandchild, please share your story and some advice for those going through it so they know they're not alone.