This is a list of some things you might like to think about and do while your baby or babies are in the Neonatal Intensive Care Unit (NICU). Some of these things you may already have been told, or know about, which is great, but some you may not have thought about and might be helpful to you during your NICU stay.
- Take lots.
- Remember photos that include all the equipment that surrounds your baby - they may be interested in it when they are older, it can be easy to just take photos of your baby's beautiful face when the NG tube is out for example, but get a couple with it in too.
- Try to take photos that have something in them, such as a doll or teddy bear, for a size comparison. You can keep including the item at regular intervals, and it helps you to see how small your baby was, and how much they have grown.
- If your baby is small enough you could put your wedding ring, or other ring, over their arm like a bracelet.
- Consider a camera with date/time stamps on the photos so you know when they were taken - it can be difficult to keep track.
- You might want to see if you can leave a disposable camera with your baby for the nurses to take pictures with (however keep in mind that the quality may not be great, and it may go missing).
- Ask if the NICU has a video camera available, some hospitals have a video camera available and you just have to bring in your own film and can then video your baby (easier than bringing in your own video camera).
- If you have twins with similar toys but a different colour (or just different toys) try to include the toy in each picture so that later you will know which twin the photo is of.
Most importantly, remember that it is your baby... not the NICU's.
- Keep a diary or journal. It is great to try to include some personal things like how you are feeling and thinking, and what is going on with you.
- A start is just to include some of the more medical information such as how much oxygen your baby is on and their current weight.
- When you are feeling like your baby isn't progressing, being able to look back to where they were a month ago can show you how far they have come.
- Another idea is to leave some pages for the nurses to write on that you can stick in the book, just a couple of sentences is enough (they probably won't have time for much else).
If you haven't been told anything about subsidised parking, ask. Most hospitals offer some sort of parking discount for the families of long term patients.
Check if meals can be provided for you, or if you can get meal vouchers for the cafeteria.
Find out if there is accommodation available within the hospital or nearby for when your baby is struggling and you don't want to leave.
If you live a long way from the hospital, the hospital should be able to help you find accommodation nearby eg a Ronald McDonald House or similar.
Looking after your baby/babies
- Once your baby is relatively stable, you should be able to start doing some of the care yourself.
- If you haven't been shown how to change a nappy or wipe the eyes or mouth, ask, things like that can easily be done by parents rather than the nursing staff. Bed baths, "proper" baths, and gently rubbing oil into dry skin are other cares that parents can do.
- Bring in prem sized clothes to dress your baby in (great for taking photos to show size too, as you can keep the garment). Make sure the clothes have been washed and are named. Provide a few spare sets in case your baby needs to be changed, and make sure there is somewhere (eg a bag) for the dirty ones to be put for you to take home and wash (if they end up in the hospital wash, you may never see them again).
- If the baby has relatives who can sew (eg grandparents) they may be able to make something appropriate for the baby to wear, and it will help them to feel involved with the baby.
- Check with the hospital as to what clothing is appropriate. It will need to be easy to get on and off if your baby is still on oxygen or has other medical needs. Some hospitals won't allow clothing until your baby has reached a certain stage. Some hospitals sell clothing, you may also be able to find some on our Products page.
- Ask for cuddles as often as you like. Always remember that if the nurse says no because your baby is not well enough just then, that is okay, check again later or the next day. Learn about Kangaroo Care.
- Get the nurses to go through and explain not only the equipment and their settings but also the medical charts and how to read them ... you'll know exactly what your baby did and what tests were done without having to ask the nurses. Remember to ask for clarification about anything you don't understand or aren't sure about. If the nurse doesn't explain enough, or you don't understand the first time, ask again. It can be hard to take everything in all at once. Speak to the doctor concerned if you need more information.
- Ask as many questions as you want ... it is your baby, and you have every right to know what is happening to him/her.
- Some hospitals have a training session available where they officially teach you how to do tube feeds (what to watch for etc) and you can then help do the feeds even if you aren't breastfeeding (a nurse just has to be on-call should you run into trouble).
- Ask for foot and hand prints if possible. Thy grow so quickly you won't remember how small they were.
- If things don't go so well, take all the time you need. Do the things you have always desired to do - one mother 'breastfeed' her baby - one drop of milk on her lips as she slipped away.
- Find out how many visitors your baby may have at once, and if there are restrictions on who. If you have other children, check when they may visit and if there are any restrictions there too.
- Take Tissues - nurseries have them but not always enough.
- Get dad involved as much as possible - but don't push him - some dad's can't cope with full term babies, let alone prems. By the same token some dad's might feel left out or pushed away. If there are any problems, find out if there is a male nurse or doctor that can talk to the father and support him.
- Ask to see a lactation consultant or a social worker etc if you feel the need ... these services are usually available even though they may not be directly offered to you. Dad's can make use of the social work service too.
- Find out if there are any talks for parents (or grandparents). Read noticeboards regularly. Check in the Parent's Room (or whatever it is called in your hospital) to see if information is posted there.
- It is important to realise that you and your baby have rights. If you are not sure about something, ask for a second opinion. Make sure you understand the risks and side effects of any treatments offered to your child. Just as you can say "yes", you also have the right to say "no" to participating in research trials if you don't want to do it. Whether you are a public or private patient, you have the right to ask for the options to be presented to you, and to ask for a different doctor to take a look at your baby and to give his/her suggestions about treatment.
- Find out if the hospital offers a support group, or at least try to get to know some of the other parents who also have their baby in the NICU. Get contact details from them, you might see them everyday while your babies are in hospital, but once you go home you will need a phone number or email address to keep in contact.
Access the EB forums to find a heap of parents who have been through the NICU experience and understand what you are going through. Ask questions, get support.
REMEMBER THAT IT IS YOUR BABY... NOT THE NICU'S