Advice for Neonatal Mummies

Having a baby in a neonatal unit can be a stressful time. I hope this guide is helpful for other mummies (and daddies). It contains advice I was given, things I learned the hard way, and my own reflections.

Some of the information will be generic to any mother of any baby in any neonatal unit. Naturally, most of it is based on my own experiences, and specific to my baby’s individual needs.

Hugo, on the day he was born.

Hugo, on the day he was born.

My son Hugo was in the neonatal unit at St George’s Hospital, south London. Hugo was in intensive care, and on a ventilator. He was born at 24 + 4 by emergency Caesarean section due to my severe pre-eclampsia and HELLP syndrome. These illnesses also meant Hugo was growth-restricted, and at birth he weighed just 420 grams (14 ounces).

In no particular order of importance…

It’s good to talk. And sing… Your baby knows your voice. Your voice will offer your baby more comfort than anyone else’s. It doesn’t matter what you talk to your baby about, as long as you do it. I talked to Hugo about my life, how his mummy and daddy met, our families and friends, our travels, favourite films, and what we were going to do together.

We (that is me, and my partner Martin) read books out loud, describing all the pictures.

I also enjoyed singing to Hugo. The nursery rhymes of choice were Twinkle, Twinkle; Baa Baa Black Sheep and How much is that doggy in the window. I sang them several times a day, in that order – it became a bit of a superstition. Hugo loved them. When he was having a good day, he boogied away to my singing. The rhymes also helped calm him on a not-so-good day.

Remember premature babies hate loud noises, and too much light. So, try to keep your voice low, and the incubator cover on as much as possible.

There’s no need to feel embarrassed or self-conscious about talking or singing to your baby. If you do, pretend you’re in a bubble where only you and your baby exist.

Get hands-on: Having a baby in an incubator and on a ventilator is a strange experience. It means that it’s difficult to do all the things with your baby you’d taken for granted that you would be doing, such as feeding, or changing their nappy. At first, it made me feel like I wasn’t being a ‘proper’ mummy.

Giving Hugo a comfort hold.

Giving Hugo a comfort hold.

There are plenty of things you can do to help care for your baby, and feel like a proper mummy. Hugo was so tiny I was at first afraid to touch him, for fear of hurting him. A simple comfort hold can be hugely reassuring for both you and your baby, and I did this every day.

Changing a nappy from the side of your baby, through the incubator doors and taking care not to get your hands or your baby’s legs tangled in the wires can be challenging. As with any new task, practice does make perfect, and your baby’s nurse will always be on hand to offer assistance. Take their expert advice. At first, my involvement with changing Hugo’s nappy was limited to a cautious and delicate dab of his bottom with the cotton wool. I didn’t want to lift his legs to do the whole job – his legs were so tiny, I was worried about breaking them. With the encouragement of his nurses, my confidence grew and I was eventually able to do the whole nappy change, poo and all.

Feeding is another task to get involved in. Hugo had a naso-gastric tube and I preferred to let Martin do it most of the time, as he is more practically minded. I was so scared I would muck up the aspirate (stomach acid, or pH) test that helps make sure the naso-gastric tube is in the right place, and send milk into Hugo’s lungs, or blow up his little tummy with too much air. Again, practice makes perfect and your baby’s nurse will give you plenty of guidance.

Helping change Hugo's bedding

Helping change Hugo’s bedding

Helping wash, and nourish your baby’s delicate skin with oil is also rewarding. Hugo made me laugh, screwing up his face like a proper little boy when I gave him a wipe over.

In my experience, some nurses will actively encourage you to get involved with your baby’s care, and others will get on with doing the cares themselves. If you want to do more, or need help, just ask them. I often had a chat with Hugo’s nurse to ask when things like nappy changes were planned to make sure I could be there, whenever possible, to do it.

Take time out: Being a new mummy is exhausting. Having a baby on the neonatal unit is stressful and exhausting. Adding recovering from a C-section and on top of that recuperating from a serious illness meant I was knackered. All the time.

Whatever the reason for your baby being on the neonatal unit, make sure you get enough rest. I ignored repeated advice to go and rest, so eventually my body took charge of the situation and gave me viral symptoms. Thankfully they didn’t come to anything, but it meant a day out of the unit on enforced rest (for my own good, and in case I was infectious).

That meant no time with Hugo, no helping with cares, and no cuddle that day.

I was gutted, and felt even guiltier than before.

So, take regular time out. Rest.

If you’re not sure, ask: The amount of information you get, and the range of medical terminology will often seem bewildering. It can sometimes be helpful to write things down, especially if the stress and exhaustion does terrible things to your memory, as it did mine.

First photo with Hugo

First photo with Hugo

Never be afraid to ask the consultants, doctors and nurses lots of questions, however stupid the question might seem. If you don’t understand an answer, ask again…and again, if you need to.

On a couple of occasions, I found it useful to seek an explanation from someone else – it didn’t mean the original person was wrong, but different people can express things in different (and sometimes more helpful) ways. Whatever is most helpful to you to understand your baby’s condition and be involved in decisions about your baby’s care is of paramount importance.

Never sit and stew. There will always be someone available to listen and explain. If they can’t help, they will find someone else to talk to you.

Express yourself: Having a baby in a neonatal unit is bewildering and stressful. There is a lot to take in, especially if your baby’s arrival or admittance to the unit was unexpected.

Take advantage of every opportunity that is offered to talk to someone. It’s good to talk, and to get your feelings, hopes and fears out in to the open. You might not find everyone you talk to useful, but you won’t know that until you try.

Martin and I were pleasantly surprised to find talking to one of the hospital chaplains to be the most helpful. You don’t need to be a church goer, or even be religious to approach the chaplains – we’re not. What is important is to feel like you have someone to talk to who you can trust, and who is on the same wavelength as you.

Record, record, record: You will have days filled with joy, and days filled with stress. It can sometimes be difficult to remember what happened, and when. It’s so important to mark milestones: it’s incredible what you get excited about, such as your baby’s first poo!

Hugo

Hugo

Hugo’s progress was recorded through daily Facebook updates. This worked for us as we have friends and family all over the world. These updates, made on a smartphone wherever, whenever meant that these friends and family got to know Hugo, and were rooting for him every step of the way. They also shared every emotion with us, and their messages of support meant that we never felt we were facing the journey alone, or unsupported.

We are now able to track Hugo’s journey through these updates.

Martin and I took hundreds of photos and videos a day. Taking daily photos means you have a record of your baby’s growth, and helps you to see how they are developing. We treasure every one of the photos and videos of Hugo.

Express your milk: Your baby really needs your breast milk. You’ll probably know that the colostrum contains vital antibodies to help develop their immune system. In a world where infection is a daily risk, this is even more important than it is for ‘normal’ newborns. Breast milk has many nutrients that will help your baby’s development, and is much better than formula, which can play havoc with a premature baby’s already delicate digestive system.

Expressing can sometimes seem like a hassle, especially when combined with the necessary cleaning and sterilising of the equipment. It also meant time away from my baby. After a while, I chose to see the time spent expressing as time for reflection and relaxation, away from the rigours of the nursery. The neonatal experience can feel disempowering, so the cleaning and sterilising felt there was at least one thing I was able to assert control over.

Learning the right technique for expressing is invaluable, especially if you are a first-time mum. Help is always available – don’t be too proud or shy to ask.

I found it very rewarding to see my baby tolerate my milk and grow bigger because of it. I was so proud the day that Hugo came off the TPN and got 100% of his nutrition through my milk.

Have plenty of cuddles: Hugo was very tiny, and reacted poorly to handling. We made do with comfort holds for the first couple of weeks.

He was three weeks old when we first attempted a precious cuddle. It was so terrifying, with Hugo dramatically desaturating straight away, I was reluctant to try again for fear of harming him.

Hugo and I enjoying a cuddle

Hugo and I enjoying a cuddle

However, when we did try again, Hugo settled into calm, blissful skin-to-skin cuddles with both of us. It was the best feeling in the world, and well worth waiting for. Feeling his little chest against mine, his fingers tracing my skin, kicking me with his feet and gently boogying as I sang to him felt like everything was right with the world.

Every cuddle was amazing – I would happily have cuddled Hugo all day, every day.

Ask your baby’s nurse whether a cuddle might be possible so it can be worked into your baby’s, and your, schedule. Hugo’s needs meant his nurses had to make sure they had a colleague on hand to offer support.

With a little help from your friends, and family: You’ll probably be inundated with offers of support from your family and friends. It can be lovely to receive visits from family and friends, especially if you are a long way from home for a period of time, like we were.

Accept help and visitors wisely – sometimes the help you need can differ from the support an individual is able, or wants, to offer. Be sure to choose visitors who will be able to cheer you up and offer proactive assistance, as well as look after themselves. You don’t need further stress or distraction from caring for your baby by visitors who need entertaining.

Sometimes the best support can be from a message or card, knowing that family and friends are thinking of you, or having a friend available at the end of the phone, just to listen.

Be kind: You’ll meet people from all walks of life. Different people deal with things in different ways. Reach out.

Hugo, Martin and me

Hugo, Martin and me

Get to know the other parents, and make friends. While this can sometimes make the experience seem like prison (“What are you in for?”; “For how long?”), support from people who know how it feels can be invaluable.

Offer a hug when they need it, or a friendly ear.

You never know when you might that need that hug, or that ear, in return.

The neonatal experience presents ups and downs for every baby and parent, irrespective of the reason for the baby’s stay. It’s all relative.

Remember that every parent is stressed, every parent is tired, every parent is anxious, and every parent shares the same aim: to take their precious baby home.

And finally… Invest in hand cream. This isn’t about having hands that are as soft as your face. Washing your hands several times a day makes the skin very dry, which can lead to open wounds, especially around the knuckles. Not only is this not very hygienic, applying alcohol gel really stings.

Regularly applying a rich hand cream, especially before you go to bed so it can sink in for a couple of hours before you have to wash it off again, can help prevent this.

 

 

The List

Link up your list posts, new and old!

12 thoughts on “Advice for Neonatal Mummies

  1. Sarah says:

    The advice here is amazing! I wish I had read this before seeing my baby for the first time in NICU when he was born 15 weeks early. I couldn’t see him until he was 3 days old as he was sent to a larger hospital straight after birth and I was still ill with HELLP syndrome in our local hospital. NICU seems so so so scary on your first encounter and you are terrified to touch your baby for fear of hurting them. I totally agree that comfort holding is a really good way to build confidence and to feel more involved in your baby’s care. I love the idea of imagining you are in a bubble with your baby as you sing and talk to them as I still feel so self conscious just sat next to his incubator trying to bond with him when there are so many bleeps and people around and the general ‘hub’ that is NICU. Great advice Leigh on all accounts #thelist

    Your writing is a pleasure to read xxx

    Like

    • Leigh Kendall says:

      Absolutely – everything is so overwhelming on a NICU, especially when you first arrive. You need advice that is simple to read and take in, so I thought I’d write this account of things I wish I would have known, or been told. It’s such a strange environment – added to that, with HELLP, getting your head around having such a serious illness, and trying to bond with/care for your baby who is in a little plastic box. Thanks so much for stopping by, and commenting xxx

      Like

  2. Emma Allinson says:

    It is so brave of you to share this, but so valuable to others, I can relate to most thing you have written, my twins were born by emergency c -section at 30 weeks, having cuddles is so precious yet so scary! Fantastic advice. x

    Like

  3. hannah mum's days says:

    Leigh, you are an inspiration. I have been thinking about this a LOT at the moment with a number of my friends having lost babies and/or spent time in neonatal units. I vividly remember sobbing for my friends who had been through this when Reuben was very little.

    I don’t think that baby loss or neonatal care is talked about enough, and I guess it’s because it’s difficult to talk about. The fact that you have put together this wonderful blog and this advice is a testament to you because it is so much more common than we know and it is terribly isolating I’m sure. The section ‘be kind’ really struck a chord. At the time not a single person would say to you be kind to other people and yet you were.

    Thank you for linking in with #TheList
    Hannah xxx

    Like

    • Leigh Kendall says:

      Thank you, Hannah. You’re right, there isn’t much info about neonatal care. It’s one of those things we all like to think won’t happen to us, but babies going into NICU happens more commonly than we might think. It really can be isolating, and I hope this guide helps other parents – especially the things I learned the hard way! I think in an NNU kindness is possibly more important than ever. Thanks for your comment xxx

      Like

  4. bettyallonby says:

    Hi Leigh,

    I don’t have any experience of a neonatal unit but I’m sure this list will be invaluable to anybody that is pregnant because we just never know how when or how our babies will choose to arrive.

    Having read this, if I were to spend time in a neonatal unit in the future, I’d feel more prepared.

    Thank you,

    xx

    #TheList

    Like

    • Leigh Kendall says:

      Thanks, Beth, I hope it’s useful. Having a premature or sick baby isn’t something that many expectant parents think of or consider. I hope that most don’t need to use it, but I’m glad it’s helping others feel more prepared in the event that they do xxx

      Like

  5. liquoriceuk says:

    Fabulous advice Leigh – would agree with all of these. I found it very difficult to take time out to rest when my eldest was in the paediatric intensive care unit (similar to being in NICU) and there were definitely moments of sitting and stewing. We kept our friends and family updated via our blog and I do still look back on it from time to time – it was quite a rollercoaster. Those moments of cuddles are so precious too. Beautiful photos as always of you and your little Hugo – there is just so much love that shines out of them x

    Like

    • Leigh Kendall says:

      It really is so difficult to rest – you just can’t relax when your precious little one is poorly. Those cuddles really were the best times ever. Thank you for taking the time to read and comment xxx

      Like

I'd love to know your thoughts...

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s