Resources

If you're having a C-section, this list compiled by our community may prove useful to help you know what to pack. There are also some top tips at the end of the list to aid your recovery.

If you're planning to pump milk whilst your baby is in NICU and cannot feed for themselves, this list of things you may need could be worth taking a look at. Collated from responses from our community of NICU parents, the list is made up of things people who have been in your shoes have used and found important.

If you know you're going to need a NICU stay in advance, this packing list collates responses from our community who have been there of what they would pack if they were going to NICU. If you're already in NICU you may still find it useful to know what you might need further into your stay.

We asked our community how medical professionals can support mothers whilst their babies are in the Neonatal Intensive Care Unit (NICU). The guidance focuses on making mothers feel supported, understood, and integral to their baby's care.

When your friend or loved one has their baby, it is meant to be a happy occasion, where you wrap them up in love and cuddles and celebrate their little one coming into the world. It may not be that way when their baby ends up requiring a NICU stay. Know that there is a lot that you can do, but the person likely can’t tell you what they need because they probably don't quite know themselves.

This week we share Katie’s story about prematurity, PTSD and post-traumatic growth.

This week we share Chloe’s story, a late preterm baby who has overcome all the odds.

This week on the podcast we talked to the wonderful Danielle and Tyler Morris, a couple who had their son at 24 weeks and 4 days, which makes him a micropreemie. Their journey inspired Danielle to set up @nicu_experience on Instagram

Lily, a two-time NICU mum, tells us about her experience of difficult pregnancies, miscarriages, twins and multiple NICU stays.

Jack, a NICU Dad, openly shares about his journey with his twins, talking about his experience of becoming a father to twins in the NICU as well as helpfully sharing his advice on what helped him through his neonatal experience.

After going through such a significant life event, I feel almost uneasy trying to find a place to start with this story, but I am choosing to begin with hope.

It's been 2 years since I wrote our first post on Miracle Moon. A lot as happened, and yet, not much has happened too. Charlotte is at the brink of going into 3-4 year clothing and that blows my mind!

Our baby girl Audrey was born in October 2019 at 26 weeks and 3 days as a result of severe pre-eclampsia and HELLP syndrome.

Last Christmas we were still in hospital with Jasper, his due date was Boxing Day but he decided to come in September.

When I had my son, Grayson, I began to suffer from post-natal depression. I am not depressed, I just have depression; I will feel better.

I met NICU with a bang. The sight of Wilf and the noises will always haunt me, I couldn’t believe what was going on.

I was thrust into the NICU world at 100 miles an hour without a chance to pause and catch my breath. My baby was born premature. I knew that babies could be born early but never did I ever even pause to think that MY baby would be born prematurely.

I had never heard of NICU before. When I had my crash section under GA as soon as arriving to MAU, I knew nothing of what was about to happen.

After having my first born I was told that my next birth would be 'easier', which I naively believed. I was massive, baby was growing into a very big boy and I was under the care of a consultant for previous complications during pregnancy.

I'm Amber, and I have a 6-month-old called Amelie. I am currently still on maternity leave from my job as a Paediatric Haematology/Oncology Nurse. Going in to have my baby, the last thing I expected was for her to end up in NICU.

My name is Roz and this story is about my daughter, Millie, who was born at term but had to have a 12 day stay in our local NICU/SCBU for high jaundice levels. My husband and I found that to be the hardest 12 days of our lives, until 2020 hit.

Dear Salma who just found out she is pregnant, You’re going to be a different person this time next year.

My name is Leanne, I'm 30 and a high school Science Teacher. Flora is my first baby and was due on the 2nd June. Flora started to make and attempt to enter the world as I was about to turn 32 weeks pregnant.

Our NICU stay occurred when our first child was born prematurely at 32 weeks, due to the quick onset of pre-eclampsia. Clodagh (now 7 months actual age) was due on the 22nd of February 2020.

Jenna tells her story about her premature NICU baby, Aurora Rae.

Deciding to have another baby often isn’t a simple task. Having another baby after NICU when your first (or previous) was sick or premature is a whole different – incredibly complex – ballgame, with no rule book.

Lottie, the driving force behind Leo's Neonatal, is opening up about her journey.

Most people don't know that a large majority of NICU admissions are babies who are born at full term. It is necessary to shed light on this, as there are often misconceptions that only premature babies need neonatal care, which is not the case.

What PPROM is, what should you know, how can it impact you emotionally and stories of hope.

Services available to support parents who have been through NICU both nationally and regionally.

Amanda Griffith Atkins' journey through parenthood offers a poignant look into the world of raising a child with a disability. Her honesty and compassion shine through, providing a community for parents facing similar challenges.

NICU can be an overwhelming experience; having some solid information about what it can be like and how to prepare may help to rationalise and help normalise these thoughts and feelings.

Join us for an enlightening and much needed conversation with Katie Ross, whose expertise as a neonatal occupational therapist and a mother with NICU experience brings a wealth of insights to our podcast.

As a paediatric nurse my daily routine starts by walking onto a ward of poorly babies and children, with a smile on my face ready to start work. Never did I imagine I would be the one walking onto a ward crying for my poorly baby.

Mindfulness expert Nicole debunks the biggest mindfulness myths.

I had a very specific plan for my pregnancy and especially for my birth, which did not go to plan. These are a few things I wish I could go back and tell myself.

Intrusive thoughts can occur at any given time, but, in this instance, I am going to focus on intrusive thoughts when you have had a baby, the impact they can have on you, and how to begin to overcome them.

When you experience intense distress and trauma, your reaction is going to be one of fight, flight or freeze.

Imagine feeling as if your thoughts or actions have the power to kill the people you love the most, and living with the very real (in your own mind) responsibility that you are "keeping them alive" by doing these things.

Having a premature baby changes you: the fear that the baby might not survive outweighed the excitement of meeting the child I had been growing in my tummy the last few months.

My name is Eilidh and I'm a first time mum to Ruairidh, who is now 17 months old. I am a doctor who is currently on medical leave for PTSD related to my son's birth.

We experience a lot of loss when we are parents of a baby who has spent time in NICU. Life is not how you imaged, and it can feel like those firsts you wanted for you and your baby have been taken away from you; these feelings are hard to cope with.

“My breastfeeding story felt like a full on novel, it took me 3 and a half months before I was able to solely breastfeed and it felt like it took all of me to commit to it. I feel lucky I have been able to continue.”

Georgina shares her NICU breastfeeding story for Breastfeeding Awareness Week - “Looking back now, I can see I did my absolute best.”

I had a very specific plan for my pregnancy and especially for my birth. These are a few things I wish I could go back and tell myself.

After going through such a significant life event, I feel almost uneasy trying to find a place to start with this story, but I am choosing to begin with hope.

Jack, a NICU Dad, openly shares about his journey with his twins Remy and Luca. He talks about his experience of becoming a Father to twins in the NICU whilst also having another child at home.

Lily, a two-time NICU mum, tells us about her experience of difficult pregnancies, miscarriages, twins and multiple NICU stays.

This week we share Chloe’s story, a late preterm baby who has overcome all the odds.

This week we share Katie’s story about prematurity, PTSD and post-traumatic growth.

Services available to support parents who have been through NICU both nationally and regionally

Do you know that 60% of NICU admissions are with babies who are born at full term (37 weeks+)? I didn’t. And most people don’t.

Deciding to have another baby often isn’t a simple task. Having another baby after NICU when your first (or previous) was sick or premature is a whole different – incredibly complex – ballgame, with no rule book.

In this episode, we’re joined again by Lizzie from season 2 who shares her experience on the NICU ward and how she managed the difficult transition into home life afterwards.

Our guest Inga Warren has 30 years of experience in improving care for infants and their families – learn more about how you can help your baby in NICU in today’s podcast episode.

Cristina became a first-time mother to twins at 40. Even with her doctorate in psychology, she still felt unprepared for the conflicting emotions she experienced. Learn how she handled it all in today’s episode of The NICU Space podcast.

Feeling alone and unsupported when grieving the loss of your baby can be really difficult. Our guest today, Dr Kara Davey talks through why therapy might be a good option for you, even if you see grief as a natural process to go through.

The Skye High Foundation joins us to share more about their work supporting parents who have lost a twin, triplet or multiple through creating the purple butterfly symbol.

Worrying about how to handle your NICU kid starting school? Feel like you aren’t getting enough support? SENCO Carolyn and safeguarding lead Abbie share their advice in today’s episode.

In the first episode of season 3, we’re answering your questions on life during and after NICU and introducing you to our new community, The NICU Space.

It's final episode of Season 2 and we're delving into what it's like to be spending Christmas in a neonatal intensive care unit.

This week on the podcast, we talk to Catriona, the Founder of The Smallest Things, a UK premature baby charity that supports families in their journey after neonatal care and seeks to improve the long term outcomes of premature children.

In this episode, we speak with Katie Sabin, a dedicated PhD student at King's College London, who leads the 'EXPAND Study'. Her research sheds light on the emotional support needs of NICU parents, addressing important gaps in support.

Lorna talks about her NICU experience with her first baby, her mental health journey, SuperDinky and about having a full term baby after NICU.

In this episode, Lady Sarra tells us all about her time in NICU, how she coped with her baby being in a hospital far away from home and how all of this has driven her to become a Bliss Ambassador.

Today we are talking to Sophie, who has had three babies in NICU and years of experience working with parents to help them bolster their mental health.

In this episode we talk about Danielle and Tyler’s experience of fertility struggles, of having a micropreemie in neonatal care during the pandemic and the impact this experience had on them as a couple adjusting to life as parents.

In this episode, we talk to Faye, a nurse and advanced tongue-tie practitioner who is on a mission to support parents in uncovering the root causes of their babies' reflux. Reflux is a common challenge for parents of premature babies.

In this episode we have a heartfelt conversation with Jade, as she shares her deeply personal journey through parenthood. Our discussion covers essential topics, providing valuable insights into fertility, birth, and baby loss.

In this podcast episode we talk to Dr Michelle Tolfrey, a Clinical Psychologist supporting people with baby loss and a parent with lived experience.

Emma shares her personal journey through neonatal care, baby loss, and how these experiences led to the incredible creation of Cover My Bubble.

Beth talks about her multitude of experiences: from her personal experiences with postnatal depression and complex PTSD following the loss of her son to her role as a neonatal nurse and co-founder of Superdinky.

At the time of recording, Lizzie was currently pregnant and knows that she is going to be spending some time in neonatal care with her baby. Lizzie reached out to me and asked if it would be helpful to share her story.

Lottie's journey is one of resilience, strength, and determination, as she opens up about her personal experiences and the vital work her charity does.

In this episode we discuss Madeleine's experience of finding out at 20 weeks that her child would have medically complex needs and would need a neonatal admission when they were born, and the feelings she underwent during this.

In this episode, we talk about the rollercoaster of emotions that came with giving birth prematurely and underscoring the incredible impact of seemingly small adaptations in maternity wards.

Join us for a conversation with Katie Ross, whose expertise as a neonatal occupational therapist and a mother with NICU experience brings a wealth of insights to our podcast.

Amanda will be talking about her personal journey into parenthood and her experience raising her first child with Prader-Willi syndrome. We discuss her time in the NICU and the challenges of raising a child with complex medical needs.

This week we speak to the women that attended our first Miracle Moon Therapeutic Group and kindly agreed to share their experience, covering topics such as self blame, meaning making, second guessing yourself, anxiety, grief and PTSD.

This week we are talking to Karen about her experience becoming a parent and how as a result she changed her job to support other families experiencing NICU.

This week we talk to Dr Jess Daigle about her experience with experiences of pregnancy, loss, birth, prematurity and NICU. She offers a new perspective, given that she was used to being on the other side as a medical professional.

In this episode, we discuss Beth’s experience of pregnancy after NICU, how she went on to recover from her PTSD and how she is approaching this pregnancy after experiencing NICU first time round.

In this episode, we discuss Beth’s experience of pregnancy after experiencing a miscarriage, the impact of anxiety on her pregnancy, her birth of Ziggy at 34 weeks and NICU experience.

Today we are talking to Kayleigh Summers about her experience of birth trauma.

In this episode, we discuss Scott’s experience of birth trauma, neonatal care and mental health following the birth of his children, as well as about the stigma and lack of support available.

Today we are talking to Dr Jenna Brough, AKA Tribe Psychology, a Clinical Psychologist who specialises in supporting parents throughout the perinatal period.

In this episode we talk to Sarah Digregorio, who had her daughter at 28 weeks and as a result wrote a very honest and open book based on her experience.

In this episode, Georgie and Frankie talk about what life has been like for them since Season 1.

Georgie and Frankie discuss anxiety around pregnancy, how it may impact the dads, having conflicting feelings about getting pregnant and being in NICU again, as well as sharing their personal experiences surrounding pregnancy after NICU.

This week we talk to Jen who had her baby at 33 weeks unexpectedly.

This week we talk to Emily & Lindsay, Occupational Therapists and co-authors of Sensory Babies, about the role of an OT in NICU and beyond, developmental milestones in NICU babies, and more.

Kayla and Jess talk to us about how they coped with their long and traumatic hospital stays living in Canada, and how they want to help other mums of sick children to raise awareness and let families know they aren't alone.

This week we talk to Sam about her experience of having her baby, T, at term in the NICU.

Tash speaks about her experience of having her baby prematurely at 30 weeks, and the impact of having a cervical stitch.

This week on the Miracle Moon Podcast, we spend some time just the two of us reflecting on 2020, the good, the bad and how it has left us feeling now.

Abbie had her baby Grayson at 30 weeks due to pre-eclampsia and HELLP syndrome, and talks about the shock of having her baby early.

We will be speaking to Emma about We about comparison and how it is easy to fall into the trap of comparing your premature baby to other babies of a similar actual age.

This week we talk to Kirsten about her experience of giving birth to her son, Machair, during which she experienced placental abruption.

Our guest, Tori, will be talking about her experience having her first baby, Phoenix at 25 weeks.

Our guest, Olivia, will be telling us tells Lenny's story after being born at 24 weeks due to Chorioamnionitis, about his heart surgery to correct Pulmonary Valve Stenosis and how she's feeling a year on.

We will be talking about what not to say and not to say to a NICU mum, as well as speaking to Salma, who will be talking about her experience in NICU at the start of the pandemic.

If you are, have been or will be a NICU parent, this podcast is here to support you through it all.

Christmas can be a hard time for a lot of people, especially if you’re in NICU or recently come home. This Q&A episode addresses a lot of common problems in the hopes of making Christmas a less difficult time for you and your loved ones.