"You never know how strong you are until being strong is the only choice you have"
We know that this is not how you hoped life with your new bab(ies) would begin. Being on the neonatal unit can be a very stressful and emotional time and even going home can bring up some new and unexpected issues. We have put together a list of all the things we wish we had known at the start of our own neonatal journeys and have asked the lead nurse for the SW Network to provide a response to these. We hope it helps you.
Love from the SW Neonatal Network Parents Group x
What I wish I'd known about being on the neonatal unit...
I wish I’d known that as parents we are the experts of our own children, even when they are tiny babies and that we should trust our instincts. When a doctor told me this, I felt a sense of relief, a bit more like mum and more bonded with my child.
Having a baby on the neonatal unit can be very overwhelming. You may find that nothing feels ‘normal’ or as you expected it might feel as new parents. You are the most important people in the care of your baby. You will be supported by the Neonatal Team but you are your baby’s primary carer and your instincts are a huge part of that. Neonatal staff will do all that they can to support the close and loving bond between you and your baby. If you feel there is something you need or are feeling confused about please find a member of the team that you feel you can talk to.
I wish I’d know that my feelings for my children were going to evolve over time and that it’s ok to celebrate – or not want to celebrate, a premature birth at first.
There is no right or wrong in how you might be feeling. The neonatal unit is an alien environment to most new parents. You may have mixed emotions following the birth of your baby and you may find it difficult to understand them. Your neonatal team are able to sign post you to services where you can get emotional support to help you through this challenging time. The team will support you at a pace that is best for you and your family.
I wish I’d known that all feelings are normal; guilt, grief, sadness, not feeling connected.
It is normal to experience a range of emotions after having a baby, let alone after having baby that might be poorly or early. The neonatal team are there to support you as well as your baby, if you are experiencing any of these feelings please talk to them, they will be able to sign post you to where you can get emotional support to help you through this challenging time. The team will support you at a pace that is right for you and your family.
I wish I’d known that it’s also okay not to be with your baby all of the time – you have you look after yourself too
You are welcome to be with your baby as much or as little as you would like. You are the most important people in your baby’s life. The neonatal unit can be quite a challenging environment to sit in for long periods of time. It’s important that you look after yourself in a way that feels right for you. Taking regular meals, getting fresh air and gentle exercise may all help in your own recovery following your baby’s admission to the neonatal unit. There is no right or wrong and it’s okay to take time away from the unit if that feels right for you.
I wish I’d known that even if they don’t finish every single drop of milk and keep it down every feed that they would still grow and flourish – just at their own pace.
On the neonatal unit we get very excited about precise amounts of milk and it may feel like that’s a strong focus for health care staff. Your neonatal team will look at your babies weight and growth over a period of time, please don’t worry if you baby doesn’t complete every feed. Remember that some days, as adults, our appetites vary. It is the same for babies too. Lots of different factors influence how babies grow. Please talk to your neonatal team if you are worried about how your baby is feeding.
I wish I’d known not to be so incredibly fixated on his weight, but just to enjoy him and enjoy peacefully feeding him.
There are lots of factors that influence how quickly a baby grows and puts on weight. It’s difficult to know what is right and wrong and you may hear lots of different opinions from well-meaning family members and friends (and sometimes Healthcare Professionals). You have just met your baby, it’s important to take time to get to know each other. Getting to know your baby can take time and that is ok. If you are feeling worried about any aspect of your babies care please talk to your Neonatal team, they may be able to help answer some of the questions you have.
I wish I had known that it’s ok to take time to heal your-self.
Going through labour and birth is not an easy task. Even the most straightforward of labours can leave women feeling exhausted and sore. Taking time to physically heal and recover from your birth experience may seem to you like it should take a backseat to being there for your baby once admitted to the neonatal unit. It’s crucial that you take time to rest and follow midwifery advice to help heal yourself. You may find that you are experiencing difficult thoughts and feeling a range of negative emotions. That’s ok. On top of the usual pesky pregnancy hormonal shifts that post-partum mum’s experience you also have the added stress of having a poorly baby. The neonatal team are there to support you as well as your baby, if you are feeling overwhelmed please talk to your nurse or doctor who will be able to sign post you to where you can get support to help you through this challenging time. The team will work with you at a pace that is right for your family.
I wish I had known that it takes time to connect with your babies, mine were not on the neonatal units for long really, but I didn’t feel like a mum until I got home.
Having a baby on a neonatal unit can be very overwhelming. You may find that nothing feels ‘normal’ or as you expected you might feel as new parents. You are the most important people in the care of your baby. You will be supported by the neonatal team but you are your baby’s primary carer and your instincts are a huge part of that. Neonatal staff will do all that they can to support the close and loving bond between you and your baby. If you feel there is something you need or are feeling confused please find a member of the team that you feel you can talk to.
I wish I had known that I would have feelings like jealously toward my partner as he was able to do more care while I was poorly – and that these feelings didn’t make me a bad mum.
It is not uncommon to have these feelings towards a loved one, and it does not make you a bad mum. Often while your body is healing, particularly if you have undergone major surgery, you may not feel physically or mentally able to do all that you initially thought you would for your baby. You and your partner are a team, and your family will be your baby’s greatest supporters as they grow and develop. If you are feeling negatively towards a partner it might help to talk through those feelings. You are your babies mum; no one else can take your place. Your role is vital. Please talk to your neonatal nurse who will be able to support you in finding the right person to talk to.
I wish I’d known about mental and emotional support – I felt this was overlooked. I felt guilty for not being well myself. More emotional and mental health sign posting would have been good.
Your neonatal team will be able to sign post you to supportive professionals and services to help you process the challenges around having a baby on a neonatal unit. It can be common for parents to feel that their needs are less important than their baby’s. You are important and it is crucial that if you feel unwell that you have some support. There are lots of online resources to support new parents, for example Bliss have lots of different ways of helping families. You can also contact your General Practitioner (GP) if you feel it would be easier to talk to them about how you are feeling.
I wish I’d felt more confident about pumping on the ward. I spent a lot of time away from my baby, queuing for the expressing room. I gradually got more confident and went from private room, to screen, to just turning my chair around or slinking behind the incubator.
When you first arrive on the neonatal unit it is normal to feel nervous. You are in an unusual environment and your baby’s admission to the neonatal unit may or may not be planned. You will be asked how you wish to feed your baby and if you choose to breast feed or express there will be lots of different places you can do this. The staff on the neonatal unit are more than happy to facilitate whatever they can to help you feel comfortable so that you can express and feed your baby in a way that helps you to relax. What is important to us is that you have the right tools to engage in building a close and loving relationship with your baby, no matter how you choose to feed. Please talk to one of the neonatal staff if you think there is something different that can be done on the unit to make you feel more at ease.
I wish I’d known it was ok to get your boobs out, it’s a hospital – no one cares! I was able to suggest to other mums how to drape the cover over the incubator to make the space feel a bit more private but I wish I hadn’t been so shy to begin with and wasted so much time.
Your Neonatal team are all trained and competent in supporting expressing and breastfeeding mums. They understand that just because you have walked on to the unit you may feel differently from other mothers around being undressed on the unit. Take your time, go at your own pace and find what’s most comfortable for you, every mum will have a different comfort level with breast feeding/expressing. The neonatal team will support you to feel comfortable and confident at being the expert on your baby. Please be reassured, they will have seen many women at different stages of undress, some will be hugely confident and others will prefer more privacy. The team will do the best they can to help create a feeding environment that is right for you and your family.
I wish I’d known about pumping and that I could take a pump home. After trying to hand express for three days with a midwifes help but no colostrum, a nurse said to pump and that I could take one home as I was being discharged the next day, it was such a relief.
Please speak to your neonatal nurse if you are being discharged and are expressing. Most units have loan pumps that you can take home with you (some may require a nominal deposit). If a unit does not have a pump loan system there are lots of places you can hire hospital grade pumps from. Your nurse should be able to help you with this.
I wish I’d known that there was a reduced rate for parking.
When you first arrive on the neonatal unit there will be a lot of information to take in, about your baby, the environment itself and about the facilities within the hospital. Families take in information in different ways; it’s ok to ask questions, even if you have asked them before. It’s hard to ask questions about what you don’t know, your neonatal unit will have an admission leaflet which should outline where you can go to get food, parking details and other housekeeping information to make your stay on the neonatal unit more comfortable.
What I wish I'd known about going home...
Some people are comforted by schedules and they can keep the NICU Schedule. They make me anxious so I wish I had known a) The first couple of nights are going to be tough no matter what as you all settle in, and b) throwing the schedule out of the window is ok! Just feed on demands and get through it as best you can
You may have been dreaming about taking your baby home from the moment you entered the neonatal unit, you may feel anything from nervous, excited to down-right terrified. This is normal. On the unit, staff have routines to follow to help plan multiple workloads to ensure that each infant receives every bit of care they require. Some people really like the routine put in place and find it helps keep them organised and under control at home. Babies do not necessarily like plans or routines, nor do they understand them! Similarly to you, your new baby may be hungry at a different time to their scheduled meal, or they may sleep through a feed. It’s ok to ditch the plan, it’s also ok to try and keep one. The most important thing about the first few days and weeks is the lovely opportunity you have to learn about each other. Spend lots of time cuddling and being close. Being a parent to a new baby is an exciting but tiring time, accept help and support so you can focus on what you feel is most important.
I wish I’d known that your baby stops being a premature baby and starts being a new born and its actually different. It was a bit of a shock (but lovely!) to have a more awake baby who did a bit more than just feed and sleep.
It can be a little bit of a shock when your lovely squishy baby goes from being all curled up and sleeping 23 hours a day so suddenly having wide open eyes that seem to watch your every move (usually at 3am!!). Babies develop at an alarming rate, just as you feel you are getting to know them and understand what they like and dislike, they go through another developmental leap and you may feel you have to restart that process. It’s wonderful and exciting watching your baby grow. Make sure you are taking rest and looking after yourself so you can enjoy these little moments. If you would like any information on how to play and support your baby’s development, talk to your health visitor who will be able to sign post you to some great resources.
I wish I’d known that it is ok to have the feeling that you have been cheated on with your baby, or to feel jealous of others. I wish I’d known not to bottle it up.
Everyone’s journey into parenthood is completely different. It’s ok to be sad or feel cheated of the experience that you had planned for. No-one wishes to have a poorly baby, and it’s ok to feel that. If these feelings are beginning to get you down, or you are feeling low, there are people who can support you. NHS Trusts offer the opportunity to discuss your pregnancy and birth with the Obstetric, Maternity or Neonatal team who looked after you. You can also speak to your health visitor or GP if you feel you need further support to move forward from some of the negative feelings that you are experiencing. It’s ok to not be ok. Move at your own pace, only you know what is right for your family unit.
I wish I’d known not to compare my baby to others on the unit (my baby was overdue) I used to beat myself up with comparisons. I couldn’t understand how he could be so big and so poorly and how I couldn’t hold him but other mums could hold their little babies. My biggest problem was I bottled this, then came home, didn’t talk and suffered with PTSD that took me a long time to get over. But it was all because I felt I wasn’t allowed to express negative feelings.
Sometimes we feel we are ok, and we journey through a difficult or emotional experience such as having a baby on a neonatal unit thinking we’re ok. Until we are not. Sometimes there is a warning, sometimes there’s not. It is natural to compare our situations to others, it would be pointless to tell you not to. But another families experience will never be the same as yours. It is heart breaking being unable to hold your baby, as neonatal staff we understand this and will always do our best to facilitate cuddles even if your baby is really poorly. It’s important to express any emotion that you are feeling, you are important. It can feel like you are at the bottom of the importance pile when you are at home trying to integrate a new little person into your existing family. You matter, and your mental health is paramount to enjoying this special time. If you are followed up by the neonatal community team talk to them, they will be able to help signpost you to help to begin to unpick how you are feeling. If you don’t have a neonatal community nurse, your health visitor or community midwife will also be able to help, alongside you GP. You are important.
I wish I’d known that people would describe my baby via their birth date as if they should be acting like a three month old etc. I felt I had to do a lot of explaining.
You are the expert on your baby. Some health care professionals will have some an understanding of ‘corrected dates’ and the development of a pre-term baby, sadly some others won’t. You may also find that a lot of your friends and family don’t understand either. This may be really frustrating and it’s ok to feel that way.
I wish I’d known that people in public would be annoyed if you stopped them from touching your baby even when you had badges up. It’s hard to go from sterile and hand washing to the big wide world of germs.
Isn’t it funny how the minute you are pregnant all sense of personal space seems to evaporate for strangers? Hands on belly’s, touching of babies, it’s a wonderful thing that the public celebrate new life, but crikey no one wants strangers touching their new fragile babies!! There are cute little badges that you can pin to your car seats and prams that say please don’t touch, although some-times people will completely ignore these! Germs are unavoidable and on the whole not a terrible thing for us as individuals, being mindful about visiting heavily populated areas during cold and flu season, is sensible. If you are worried about your baby’s health your health visitor and GP will be able to support you.
I wish I’d known that health visitors and even GP’s will not always remember to do a ‘corrected’ age. Many have not had prior experience with premature babies. I often felt like I was educating them!
You are the expert on your baby and you and your family will often be the best person in the room to explain the journey your baby has been on. Some health care professionals will have some an understanding of ‘corrected age’ and the development of a pre-term baby, sadly some others won’t. You may also find that a lot of your friends and family don’t understand either. This may be really frustrating and it’s ok to feel that way.
I wish I’d known to take their hospital name band with you for a keepsake. Like you would have if you hadn’t been in NICU. We had so many of them over the time we were in that when we were told we were being discharged we ripped it off and were so eager and excited to get him home, we didn’t even think about it. I wish I had kept it.
In all of the excitement of preparing to leave the neonatal unit for home it is easy to forget the small things. It can sometimes help to gather these little mementos throughout your whole neonatal stay. You may feel you want to forget your neonatal experience and get back to ‘real life’ as quickly as possible, but you may feel differently moving forward. The neonatal unit will form a huge part of your baby’s story and it may be nice to share some of your experiences with them as they grow older and begin to explore their past. Keeping photos, journals and writing down key memories (even if you think you will never forget them!) will help you re-visit this chapter in your life in the future.