When you speak to parents who have been through the NICU, some talk about having had prior knowledge that they would be there, and some talk about it being a complete surprise. However, what we do know is that 1 in 7 babies end up in NICU, so the likelihood that you either could experience it, or know someone that is going to, could be likely. Therefore, it is important to think about how to prepare for a NICU stay, both emotionally and practically. It can be an overwhelming experience and having some solid information about what NICU can be like and how to prepare may help with some of that feeling of overwhelm and with normalising thoughts and feelings.
Visit the unit if possible
We know that this is more difficult during COVID, however, some units have the opportunity to do this virtually, or nurses may be able to provide information about what the unit is like over the phone. It is worth finding out about things like visitation information, rules, guidelines and to have an idea of what is on the unit and where you might be based.It is helpful to know things like where the milk kitchen is, where the parents rooms and bedrooms are. It is also worth thinking about what is in the hospital and where your closest places are to get food and supplies, especially if you are further from home.
You may have to feed your baby in a different way to how you imagined to start with
We may have prior ideas of how we want to be able to feed our babies, however, it may be that these ideas change or adapt for the NICU experience. A lot of Mum’s find that they have to express, or utilise formula. Some babies need tube feeding in the first instances before they get strong enough to feed orally. It is therefore important that you feel you can ask questions about how to express, and feed your baby and still feel connected to them. We have given a list of things that you may need if you are expressing (here). Talk to the nurses and gain additional support from a lactation consultant if you feel like you need it.
For so many NICU mums, your first experience of breastfeeding (if this is how you chose to feed) will be through expressing, firstly hand expressing into a syringe and then moving onto expressing with a pump every 3/4 hours. It can feel unnatural, especially being away from your baby and expressing. It can also feel pressured, to provide enough milk for your baby. I asked the NICU community about what advice they would give a new mum who was expressing and here is what they said.
- Your baby's stomach is only the size of an acorn, even smaller in preemies, so the amount of milk they need is very small
- It can take days or even a week for people’s milk to fully come in
- It's ok if it doesn't work for you and you move onto formula
- Pump every 3/4 hours to develop the best supply
- Clogged ducts are nasty, to keep them at bay, try to incorporate massage when you are expressing
- Stay well hydrated and eat, it's hungry and thirsty work
- Look at pictures of your baby or smell something that belongs to them
- When you are pumping, set up a little station where you have everything you need right by you.
- Invest in a good pumping bra so you can still use your hands
Create a support network- Connect with other parents who have been through the NICU
When you are in the unit, there are other people around you who are experiencing similar things to you. When you are in the midst of overwhelm and difficult feelings, the idea of talking to others can sometimes feel incredibly difficult. But know, that this is a group of people who will know how you feel and may be able to be friends outside of the hospital environment. If you don’t feel like talking to the people around you, know that there are other people online who are here to support you when you are ready. Miracle moon has a whole host of other people who have been through the NICU, with a variety of experiences. Please get in touch and know there are networks ready to support you when you are ready, instagram and facebook are a great place to make contact, there are lots of supportive pages available.
The NICU routine
The days can seem to repeat themselves when you are on the NICU, whilst there will be differences and changes that you cannot predict, the daily routine repeats itself day in and day out. Visiting the hospital, hand washing, ward round, possibly expressing, your baby will have a feeding schedule, timings for their ‘cares’ (including a nappy change, mouth care, checking their monitors and stats) there also may be a set time in the day where you are able to hold them. The routine may become reassuring as time goes on, it can give you a level of certainty when everything seems so uncertain.The NICU environment overall can sometimes feel overwhelming, there are lots of beeps, flashing machines, other poorly babies. The hospitals are always keen for you to get involved as much as you can with looking after your baby, which will come with time, take it at your own pace and do whatever you need to to look after yourself and your baby.
Look after yourself, you can’t pour from an empty cup
The idea of looking after yourself can sometimes feel completely alien when you become a new parent, especially when you are in the NICU. But the reality is, that often you have been through a difficult birth, maybe a C section, which is substantial surgery. Either way, you have been through something hugely physically and emotionally demanding. You then have to experience the rollercoaster that is the NICU, whilst trying to manage emotionally and physically. Even though it is hard, you have to be able to find space to look after yourself in some way, to rest, to eat, to drink, to talk, to help you to recover and to help you to cope. If you are able to look after yourself in some way, it helps you to be more available for your baby both in the NICU and when they come home.
What ward round is like and how to prepare for it
Ward round can feel like an overwhelming experience if you've not experienced it before. So, what can you expect? A number of different doctors and nurses will come to your babies incubator, they will visit every baby on the ward. They will review the notes and will probably talk amongst themselves at first. There may be medical students with the doctors, so you may find that the doctors ask them questions to test their knowledge. They may ask the nurses for a verbal update on how your baby is doing.
If at any point, you don't understand what they are talking about, ask them to explain it to you.
If at any point, you feel uncomfortable with being present, it is OK to leave.
If at any point, you don't agree with what they are saying, or you think that they have got it wrong, it is OK to question and challenge. If you feel safer doing this when the doctors have gone and just want to speak to a nurse that you know, this is also OK.
You know your baby the best, but they have the medical knowledge to help your baby, therefore it should feel like a team effort in supporting your baby on the ward. You are important in getting them well enough to be able to leave the hospital too. It might be helpful to write down what has been discussed, and any questions that you have for the doctors so that you have it to hand for when the ward round takes place.
Bonding with your baby
People often speak about that instant feeling of love for their baby, that can leave some people feeling like there is something wrong with them if they dont feel this way. But often it can take a little while for those feelings to grow. Especially if you have a physical barrier between you and your baby (an incubator) and you have bought your little one into the world in a way that is traumatic for you. It may be that by doing some of the things below, you can start to increase that bond with your baby as you get to know them. It might take a little bit of time and that is OK.
- Reading to your baby
- Talking to your baby
- Kangaroo care or containment holding when unable to hold them on you
- Feeding your baby, whether that is through a tube or bottle, both parents can get involved
- Attempting to breastfeed if this is what you want to do
- Taking part in your babies cares, mouth care, nappy changes.
- Offering your baby a bath, the nurses on the NICU should show you how to do this when the time is right
- Exchanging smells, using small pieces of material to allow them to get used to your smell and you get used to theirs
- Take pictures and videos
- Look at their face and their movements, many parents say they spend long periods of time just looking at their babies, it's harder to do through a perspex incubator, but spending time sitting next to the incubator and looking through the holes helps you to get to know them.
- Take photos, you may not feel like you want to remember the experience, but every parent I have spoken to has really valued the photos they took
- “Rooming in” and staying on the unit with your baby
- Understanding their medical conditions
- Dressing your baby (when you are able to)
- Looking after yourself so you have the energy to be with them as positively as possible
- Some parents talk about the bond developing more when they get home
Coping with medical procedures
Every NICU baby has their own experiences, trials and struggles throughout their time in hospital. Some babies won’t have many procedures and some will have lots. What is common, is that they will have more medical procedures than babies who are not on NICU and the likelihood is that at some point in your NICU stay, you will have to experience some form of medical procedure and seeing your little baby going through that, can feel extremely difficult. Seeing the bruises, blood, monitors, wires and tubes on your baby can feel overwhelming, anxiety provoking and at times helpless.
It’s OK to feel upset, angry, frustrated, numb, whatever you feel, it is OK. It is an unnatural and unimaginable experience that you possibly didn't think you would go through. It can bring up feelings of guilt and those Mama bear instincts can kick in.
On the days where your baby is having a medical procedure give yourself permission to deal with it in whatever way you feel is best, whether that is staying by their side, or letting the nurses take over, both are OK. Try to take some time in the day to look after yourself in whatever way possible, whether that is taking a short walk, getting some lunch off the ward or getting home and having a bath, it can take its toll on you.
Some things that parents said helped them to cope with medical procedures were:
- Being present and letting them know that you are there
- Not being present and taking some time off the ward, allowing the nurses to support your baby and knowing that that is OK
- Singing to your baby as they are having the procedure
- Relying on family to support them
- Asking questions about the procedures
- Getting reassurance from nurses and doctors that your baby was OK
- Know that it is not your fault that this is happening
- Knowing that it is going to help your baby
- Understanding why they need to happen
- Speaking to other Mums on the unit
- Knowing that the doctors and nurses have done it before and they know what is best
Prepare for the fact that you may have to go home without your baby
There's very little that can prepare you for needing to go home without your baby and others words can sometimes not feel helpful. You are supposed to go home with your baby, have that picture of leaving the doors with your baby in their car seat. This is hard and unnatural and it's very much ok to be sad about this. Your time will come, you will get that picture, that moment will be yours and you won't for a second take it for granted. But for now, it's really hard.
Parents talk about being scared, worried, sad, lonely, guilty, like a part of them is missing, not wanting to leave. Some parents talk about finding it hard to process and feeling numb to it, getting used to it, knowing that it is what their baby needs.
It might be helpful for you to develop a saying “goodbye for now” or “goodnight” routine. If possible, spend some quality time in whatever way you can with your baby before you leave, read to them, kangaroo care, feed them, engage in some kind of bonding activity that gives you some connection. It might be helpful to exchange pieces of material or toys so they have your scent and you have theirs. As you leave, it's ok to cry, to be angry, to feel grief. Try to touch base with a loved one and let them help you through it. Call the hospital whenever you feel you want to. Try to do something to look after yourself, a bath, watching something on TV, recovering, I spent time nesting and organising from the sofa. Maybe focus on getting the house ready for your baby's arrival. Whatever you need to do to get through it, and whatever it is you choose to do is ok. You'll see your little one soon and they are in safe hands.
Sit with the uncertainty
Know that at times, you will feel unprepared, uncertain, unsure and out of control. The more we struggle with this, the harder it can be. Control what you can control, focus on your routine, what you can do for your baby in any given moment, what you can do for yourself and how you can help yourself positively to cope when things become difficult.
Know that you will be in fight, flight or freeze moments at times and this is completely normal
When we perceive a threat, we respond with either fight, flight or freeze. Thinking about this in evolutionary terms, this has helped us to respond quickly to threats and keep us safe. However, when we have repeated exposure to threat, like in the NICU or when we are new parents and our brains have changed so much to additionally respond to threat, we can sometimes get stuck in one of these responses. We might lash out or become confrontational (fight), we might avoid situations (flight) or we may feel stuck or numb and unable to make decisions (freeze). It’s important to be aware of these responses and to know that they are normal responses to anxiety and to the changes that have happened in our brains as new parents. These can feel like very physical responses, our heart may beat faster, we may breathe quicker, feel like our limbs are like jelly, have goosebumps, feel dizzy, there are many ways that our body and brains react to experiencing this reaction.
Talk to people about how you are feeling, especially if you are struggling, it is OK to find this hard, it is hard
The experience of being in NICU can feel overwhelming, you might feel feelings that you didn't expect to feel. For example, guilt about your body and the feeling that you have in some way failed, grief over the experiences you have missed, sadness, anger, jealousy, anxiety, worry. The feelings can feel intense, especially after you have given birth and have so many hormones coursing through your body. Your brain physically changes when you give birth to allow you to experience higher levels of anxiety, so that you can be on high alert to be able to look after your baby effectively. It is therefore normal to experience a whole range of emotions whilst you are in NICU. However, if you feel after some time that the feelings are still intense, impacting your life and you feel like you are struggling, it is important to talk to someone and access support, your GP or health visitor is a good starting point to access help. Mental health issues such as postnatal anxiety, depression and PTSD can be more common in parents that have been through the NICU, so it is important to be aware of how it could impact you. People often don’t feel like things “hit them” until they are home and the dust has settled a bit, so it is incredibly normal to have a wave of emotion or struggle when you get home, but again, if it is difficult to manage and you are struggling, help is available, you don’t have to struggle alone.
It is true what they say, NICU is a rollercoaster
The difficulty about the idea of being able to prepare for the NICU is that realistically, no matter how much you read and talk to other people, sometimes you cannot be fully prepared for what the experience is going to be like. Because it is unpredictable. Some days may feel OK, some days may feel awful. Some days you may feel like you are moving forwards and others it may feel like you are moving backwards. You have to take it a day, an hour at a time to be able to manage the rollercoaster, focus on what is in front of you and what you can do in that day to support yourself and your baby. Your feelings are valid and no matter how long you are in NICU or whatever your experience, you are allowed to feel however you feel about it. Give yourself time to acknowledge all of the different feelings you may feel, it might be good to at times go and get a drink, or some food and decompress or process what has happened that day, maybe write what's going on for you as a way of processing, or talk to others about it.
Grounding exercise when it all feels too much
When we feel like it is all getting a little bit too much, it is important to try and develop our skills in keeping us present and reminding ourselves that we are safe.
Move into a space outside of the ward, maybe at home, maybe outside, where you feel safe.
Start by taking a deep breath, in for 6 and out for 8, repeat this a few times.
Name 5 things you can see, 4 things you can hear, 3 things you can touch, 2 things you can smell and one thing you can taste
Breathe again, in for 6 and out for 8.
You can also do things such as:
Stamp your feet
Shake your body
Run your hands under cold water
Touch a wall and really focus on the sensation of it under your hand, is it hot or cold, rough or smooth
All of these things are to help you ground yourself in the present moment.
Thinking about Dad
Often a lot of focus is on the Mum, sometimes this leaves little space to think about how this experience impacts the Dad. Dad’s can experience trauma surrounding the birth, a feeling of being powerless and helpless can leave them feeling out of control or out of place in the NICU. Dad’s often return to work whilst their baby is still in the NICU, having to take their paternity leave whilst their baby is still in hospital. They may experience similar feelings to you, a fear for their baby, a struggle to bond with their baby, anxiety or feeling low about the situation. You might find that Dad’s don't talk about how it is impacting them, leading to them suppressing their thoughts and feelings. It is important for Dad’s to talk about how they are feeling and to take an active role in caring for their baby where possible.
Overall, Dad can do the same things as Mum when thinking about bonding in the NICU. Often Mum is not able to breastfeed straight away, meaning Dad can get involved in feeding from the start.
Know you are not alone in your feelings
No matter how you feel, there will have been someone else out there who feels the same. Quite often on our page, on our instagram stories, we ask the community to share their thoughts and feelings where they feel alone and every single time, there are huge amounts of others who feel it too. We are here to support you through your experience of NICU and after, we never want a NICU parent to feel alone.