During our time in hospital with our daughter, we often felt terribly, terribly lost, and it was only after a few weeks, that we started to get our bearings. Since being out of hospital, more and more things have become apparent to us that would have been useful during our time there.
As a result, we have come up with a Parents Handbook, a guide intended to help parents and carers to navigate this difficult time. You can download the Parent Handbook in PDF format, along with some ideas for how family and friends can help.
Ask Questions – never be afraid to ask questions
Can you explain what that means?
Ask for more information about your child’s diagnosis, prognosis and treatment. Start with the doctors and nurses who are caring for your child, if they can’t answer all your questions, find out where to go for more information. Oftentimes, the more you know and understand about what’s going on, the less scared and more reassured you can feel.
Don’t rely on Google for information, you’re likely to end up misinformed. Your first source of information should the people who have the training and the knowledge, and who know your child.
How can I be involved in my child’s care?
Even if your child is in NICU or PICU, you may still be able to carry out simple tasks like; changing their nappy, washing them, or feeding them. If your child has a feeding tube, nurses will usually be quite happy to show you how to run feeds yourself. These may seem like small things, however they allow you to bond with your child and the benefits to both of you are immeasurable.
Can I hold my child?
It can be very daunting and distressing to see your child covered in tubes, bandages, lines and wires. You may be concerned about hurting them or causing discomfort. However if you ask, with a little bit of assistance, you may be able to hold and hug your child. Something, again, which will greatly benefit both of you.
What am I entitled to?
Being in hospital with a child for an extended period of time can affect families financially. Find out, or ask someone to find out for you; are there discounts for hospital patients for the car park? For the local Laundromat, restaurants or hotel? Is there government assistance available for your situation? Are you eligible for carers leave or compassionate leave from work?
Look after yourself
This is extremely important. You cannot look after your child, or their siblings, if you are emotionally and physically drained.
Eat well; The temptation in this situation is to go for comfort food. Certainly don’t deny yourself chocolate and coffee! However you’re not going to do yourself any favours eating greasy fast food every night. Try and eat at least one fresh meal a day and keep fresh fruit on hand for snacks. You’ll feel much better for it.
Get out; Leave the hospital (you don’t need to leave the grounds) just get outside the building. If you can manage a small walk or even participate in one of your usual physical activities like yoga or visiting the gym, you’ll be amazed at the difference this can make to your day.
Get some sleep; This is not always possible, especially if you are staying in the hospital with your child. However the lack of sleep can build up, and severely affect your ability to cope and function. If you need to go home or back to the hotel during the day or even at night to get sleep while someone else is with your child, do it. Get some sleep and come back feeling a bit more human.
Take a shower! Often you’ll be exhausted, and getting into a shower seems like too much effort. Another very small thing that can make a world of difference.
Practice mindfulness; Mindfulness helps reduce stress by focusing your attention on the present moment. There are a number of ways you can do this such as meditation, mindfulness colouring books or breathing exercises. You can even eat an apple mindfully. Look at the numerous apps and websites available, and find something that works for you.
Hope for the best, but be prepared
By this we mean, remain positive, however don’t only accept the ‘best case scenario’ and expect everything to go to plan.
For example, if doctors give your child a recovery time of 2-4 weeks, plan according to 4 weeks or even more. More often than not, your child will be fully recovered sooner. However sometimes, things don’t go according to plan, and if you’ve only accepted the best-case scenario, you’ve made things so much harder on yourself.
Trust your instincts
You know your child best, and you are your child’s advocate. If you think that something isn’t right, persist. Ask for a second opinion, ask for a doctor or specialist from another discipline. Find someone whose opinion you trust, and get the answers you need.
By the same token, is it important to understand that the staff in the hospital are human too. They work long shifts, can be exhausted and have their own worries. It’s only natural that they are going to miss things and occasionally forget. In being your child’s advocate, sometimes you need to make sure things aren’t missed or forgotten about.
Ask what help is available within the hospital. There are a myriad of staff and facilities on hand to help you, your child and your family; services like physiotherapists, play therapists, lactation consultants, music therapists, social workers, sometimes even financial advisors. There are also facilities available to you like family rooms, laundry rooms, showers and play centres.
Most children’s hospitals have volunteers who will sit with your child, read them stories or even play games with them. This is fantastic for when you need time to run errands, or even have a break and get some fresh air.
Ask family and friends for help. This isn’t always easy, however more often than not, these people want to help you, they are just unsure of what they can or should do.
Along with this handbook, we’ve also put together a list of suggestions, of ways that family or friends can help. Print it off or email it to anyone who offers help; share it with your family and friends on social media; or if your child has a scheduled surgery, send out before you go in. By letting them know how they can help, you are more likely to get the help you need.
Have you been through this experience?
What are some things that did, or would have helped you?