When you get home from the neonatal unit

Find out more about follow-up appointments and adjusting to life with your premature or sick baby after leaving the neonatal unit.

Follow-up appointments

Once your baby has left the unit, you may need to attend follow-up appointments. These appointments will check your baby’s health and development.

You will have been given a red book, where information about your baby is recorded. It will be helpful to bring your baby’s red book to these appointments.

Many parents feel anxious about attending follow-up appointments. You may want to write down a list of questions you want to ask before each appointment. Doing this may help you feel more in control. You may also want to take someone with you to help you remember what was said, or to talk to about how you are feeling.

For some babies there are several follow-up appointments, and this can be hard to manage. They can take up a lot of time and be very tiring, especially if you have to travel long distances to and from hospital.

If you are finding it difficult to manage the number of appointments you have, your health visitor may be able to help you rearrange some of them. You can talk to them and see if this would be possible. You can also talk to the healthcare professionals your baby is seeing to see if you can get more than one of the appointments on the same day.

Travelling to and from hospital and hospital parking can be expensive. Your health visitor or staff at the neonatal unit may be able to tell you more about what support you can get with travel and parking costs.

Having visitors

When you get home, friends and family are likely to want to come and visit you and your baby. You may want to limit visitors for a time after leaving the neonatal unit so that you have private time together to settle into being a new family. You may also limit visitors to reduce the risk of visitors passing on infections to your baby.

Babies born premature or sick have a higher risk of infection. When you leave the neonatal unit, it is important to avoid contact with adults and children who have cold or flu-like symptoms or stomach upsets. This will reduce the risk of infection for you and your baby. We have more information about how to notice if your baby is becoming unwell and how to reduce the risk of infection. Babies born premature may also be more sensitive to bright or noisy environments, so limiting visitors may prevent them from getting overstimulated.

It is important that you do not allow anyone to smoke in the same house as your baby. All babies’ lungs are not mature at birth, and exposure to tobacco smoke can affect the growth of their lungs. For premature babies, being around smoke can increase the risk of them getting an infection in their lungs.

You may find it stressful if you have visitors who want to hold or touch your baby. If you are nervous about this, try and explain the situation to them before they arrive. They will understand and want to support you.

Finally you are all out of hospital and everyone wants to visit. Don’t be afraid to say no – you will want time to be a family in your own way.

Megan, mum to Fergus

Going out and about

Unit staff may advise you to be cautious when going outside with your baby if they are at an increased risk of infection. They may also advise you to stay away from people with cold and flu-like symptoms, and encourage you to wash your hands thoroughly to help avoid infection. They may advise this particularly during the winter months, as this is when your baby is at a higher risk of getting bugs and viruses. We have more information about how to help your baby avoid common infectious illnesses.

Many parents find it is important to make time to go out and get some fresh air. Being outside can help improve your mental health. You may want to ask a friend or family member to look after your baby while you go out for a walk.

Just like other parents out and about with a young baby, you may see people you know or even strangers who want to congratulate you. You may receive insensitive comments from people, although they might mean well. For example, parents have told Bliss they have found it upsetting if people commented on their baby being small. When people have no experience of your situation, they may not know the right thing to say. It is okay to not engage in these conversations, especially if they may make you feel frustrated or distressed. It may make you feel more in control to explain the situation to them, but remember that it is up to you to decide how much or little you tell others.

Feeling less isolated

Some parents feel isolated if they have to restrict the number of visitors they have or how often they go out. Feeling lonely and isolated is not unusual for parents of babies born premature or sick. You may feel like no-one understands what you are going through, or that you don’t want to burden anyone by talking about how you feel. Connecting with people around you can help, and this doesn’t have to be in person. You can phone, text or email close friends and family to stay in touch. You may also want to use the Bliss and Netmums forum to speak to other parents of babies born premature or sick to get support.

Bonding with your baby

Some parents find it difficult to bond with their premature or sick baby. This often gets better with time. If this is something you are worried about, you can talk to your health visitor or community neonatal nurse.

Baby massage can be a great way of bringing you closer to your baby, and is also very good for your baby’s health and well-being. It has been shown to be especially useful to help you bond with your premature or sick baby. It can make your baby feel loved and help you learn about your baby’s needs. You may also both find it very relaxing. Talk to your health visitor about whether massage is suitable for your baby.

If you are finding it difficult to bond with your baby weeks or months after your baby was born, this may be a sign of postnatal depression. We have more information about this and where you can get support.

Making routines

Some parents find that they are able to form sleeping and feeding routines, but not all parents do. You will get to know your baby and will learn to understand their needs at different times. Try not to feel pressured and take it one day at a time.

Sleeping

When you get home, it can take some time for your baby to settle into their new environment. You may have some concerns about how little or often your baby will sleep, and how to get them into a sleeping routine. You will also want to ensure your baby sleeps safely. We have more information about sleep that you may find helpful.

Family life

Having a premature or sick baby often has an impact on the whole family.

If you already have children, you may find adjusting to being at home more difficult. Some parents find it hard to balance looking after their other children and their new baby. You may want to ask family and friends to help. They may be able to take children to school or nursery, or help with housework. We have more information about ways that family and friends can help support you.

Children can be affected if they have a sibling born premature. They may find it hard to adjust if you have had to spend long periods of time in the neonatal unit away from home. They also may need help to understand why you need to spend more time looking after your new baby, and the attention their younger sibling is getting.

Try and be open with them about what is happening. You could aim to keep them as involved as you can, and give them the opportunity to help out if you can.

We have four children at home and keeping things as normal as possible was really hard. I felt guilty if I was at the unit with the twins and guilty if I was at home with our other children.

Talia, mum to Joe and Ashley