The NICU Space by Miracle Moon – Détails, épisodes et analyse

Sending your NICU child to school for the first time can be really difficult – we know the feeling! So, with the aim of alleviating some difficulties for you, we’ve brought Abbie and Carolyn onto the podcast, where they’re sharing all their knowledge around educational support. Abbie is a qualified family worker and safeguarding lead. She's also a NICU mum to twin girls born at 27+5, who are now two and a half, and is now a neonatal advocate and storyteller since her NICU experience. And Carolyn is deputy head at her school, and SENCO. She has been teaching for 17 years and has been a SENCO for 14 of them. 

We’d love to have them back for another episode in the future, so please do send us any questions you have for them via the usual channels below!

In this episode, we’re chatting about:

• What a SENCO is and does and how they will support your child’s needs at school
• The role an EHCP plays in your child’s support
• Why it’s so important to reach out to your child’s school and discuss their neonatal stay, even if you haven’t got any issues to raise currently
• What parents need to be looking out for to work out if their child needs educational support

💌 Check out the full show notes for this episode here, where you can find timestamps, a transcript and any links or resources we think are relevant to this episode. If this episode resonates with you or if you have questions, reach out to us on Instagram or shoot us an email at hello@miraclemoon.co.uk.

🎧 We love engaging with our listeners! Share a screenshot of this episode and don't forget to tag us on Instagram ⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠@miraclemoonuk⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠ when you're tuning in.

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🙏 A huge thank you to Emma at Cover My Bubble for supporting our podcast - you can find out more about all that Cover My Bubble offer at ⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠www.covermybubble.co.uk

Welcome back to The NICU Space podcast! We’re back for season 3, and after a little revamp and new name, we’re so excited to share all the amazing episodes we have planned for you. In this episode, we’re kicking off by sharing the answers to some questions we hear often and sharing some parts of our experiences that you might find comforting to hear. We’re also introducing you to our new community, The NICU Space, so if you’d like to learn more about that, the link is in our show notes. We can’t wait to see you there!

In this episode, we’re:

• Welcoming you back to season 3 of the podcast!
• Filling you in on our childrens’ school transitions and worries that go hand-in-hand
• Sharing the answers to some questions from our audience on topics like: being there for others who are going through NICU, helping family to support you better and how to get help if you need it
• Telling you all about our new community, The NICU Space

💌 Check out the full show notes for this episode here, where you can find timestamps, a transcript and any links or resources we think are relevant to this episode. If this episode resonates with you or if you have questions, reach out to us on Instagram or shoot us an email at hello@miraclemoon.co.uk.

🎧 We love engaging with our listeners! Share a screenshot of this episode and don't forget to tag us on Instagram ⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠@miraclemoonuk⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠ when you're tuning in.

⭐️ Help us spread the word by leaving a review and subscribing...that way, you won't miss a single episode.
🙏 A huge thank you to Emma at Cover My Bubble for supporting our podcast - you can find out more about all that Cover My Bubble offer at ⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠www.covermybubble.co.uk

!Content Warning! Explicit discussion surrounding miscarriage in the first trimester and hemorrhaging. 

In our latest podcast episode, we have a heartfelt conversation with Jade, also known as the Mindset Mumma (@themindsetmumma), as she shares her deeply personal journey through parenthood. Our discussion covers essential topics, providing valuable insights into fertility, birth, and baby loss.

Jade, a mother of two children conceived via IVF, candidly discusses the emotional challenges associated with fertility, the struggles faced by parents dealing with fertility issues, and the key messages she wants to convey to others on a similar path. We also explore the impact of these experiences on her relationship and her thoughts on expanding her family.

The episode delves into the emotional aspects, including the impact on relationships, managing difficult conversations and experiences. We also discuss sensitive topics like a harrowing hemorrhage, baby loss, and miscarriage, with an explicit content warning. Jade bravely shares her experiences and her journey through PTSD, along with her fears regarding mortality.

Our conversation touches on the complexities of considering having another child after experiencing baby loss and birth trauma and how this journey has affected her relationship with her IVF-born daughter. We'll also provide guidance on what to say and what to avoid when supporting individuals going through IVF and baby loss.

We love engaging with our listeners! Don't forget to tag us on Instagram ⁠@miraclemoonuk⁠ when you're tuning in.

Help us spread the word by leaving a review and subscribing...that way, you won't miss a single episode.

If this episode resonates with you or if you have questions, reach out to us on Instagram or shoot us an email at hello@miraclemoon.co.uk. You can also find us on our website, ⁠www.miraclemoon.co.uk⁠.

A huge thank you to Emma at Cover My Bubble for supporting our podcast - you can find out more about all that Cover My Bubble offer at ⁠www.covermybubble.co.uk⁠

Music: Moments by Shane Ivers - https://www.silvermansound.com

In this podcast episode we talk to Dr Michelle Tolfrey, a Clinical Psychologist supporting people with baby loss and a parent with lived experience. In her first pregnancy in 2015, Michelle had an ectopic pregnancy, she was quickly rushed back to work, it was very much treated as a physical health problem. Michelle got pregnant again 5 months later, at 37 weeks it was confirmed that her baby, Orla had died. She then became a peer in the loss community, where she then realised the importance of community in loss. Michelle’s second daughter was born 11 months later and is now 6 years old. Since this point, Michelle started “from the other chair” a blog where she spoke about managing life after loss with both hats of being a loss parent and a Psychologist, she has since gone on to develop “The Loss Collective”, which looks to support people at work who experience baby loss. 

Our Conversation Topics Include:

• Michelle's Journey into Parenthood and Her Experience of Loss

• How Her Personal Experience Inspired Her to Support Others

• Demystifying EMDR for Grief and Loss (It's Not Just for PTSD)

• Navigating Overwhelming Emotions Surrounding Loss including comparison, self blame and uncertainty 

• Coming to terms with there being “no reason” 

• Disenfranchised grief 

• Supporting Parents in the Workplace: The Importance and Approach

• Advice for Those Experiencing Baby Loss at Work

• What Michelle Would Tell Her Past Self and What Others Need to Know

• The Most Powerful Steps Toward Healing

• Words of Wisdom for Parents Facing Similar Challenges

This episode is a heartfelt conversation about grief, loss, and the vital support available to those who need it most. Join us as we delve into Michelle's remarkable journey and her mission to help others find their way through loss.

Connect with Dr. Michelle Tolfrey: Find Dr. Michelle Tolfrey on Instagram @fromtheotherchair and @the_loss_collective and explore The Loss Collective's work www.thelosscollective.co.uk Also, find more of her work on substack drmichelle.substack.com

We love engaging with our listeners! Don't forget to tag us on Instagram @miraclemoonuk when you're tuning in.

Help us spread the word by leaving a review and subscribing...that way, you won't miss a single episode.

If this episode resonates with you or if you have questions, reach out to us on Instagram or shoot us an email at hello@miraclemoon.co.uk. You can also find us on our website, www.miraclemoon.co.uk.

A huge thank you to Emma at Cover My Bubble for supporting our podcast - you can find out more about all that Cover My Bubble offer at www.covermybubble.co.uk

Music: Moments by Shane Ivers - https://www.silvermansound.com

Not all babies make it home from NICU, this is the incredibly painful reality for some parents who have time in neonatal care. In this important episode, we sit down with Emma, the founder of Cover My Bubble, a family-run insurance company. Emma shares her personal journey through neonatal care, baby loss, and how these experiences led to the incredible creation of Cover My Bubble.

In this episode we discuss: 

• Emma's Neonatal Care Experience and Loss of her Daughter Lillie
• How Emma Stays Connected to Lillie and How she has coped with the Loss
• The Birth of Cover My Bubble: Supporting Families with Insurance
• Understanding Insurance: Bump Cover, Critical Illness Cover, and Life Insurance
• The Practical Benefits of Insurance for NICU Parents
• Additional Insurance Benefits: Free GP Services and Mental Health Support
• Making Insurance Accessible: Breaking Down Barriers

This episode offers an honest and educational discussion on neonatal care, baby loss, and the role insurance can play in supporting families. Emma's story provides comfort and insight for those who have gone through similar experiences or may encounter them in the future.

Connect with Emma

Find Emma on Instagram at @covermybubble and visit her website at www.covermybubble.co.uk

We love engaging with our listeners! Don't forget to tag us on Instagram @miraclemoonuk when you're tuning in.

Help us spread the word by leaving a review and subscribing...that way, you won't miss a single episode.

If this episode resonates with you or if you have questions, reach out to us on Instagram or shoot us an email at hello@miraclemoon.co.uk. You can also find us on our website, www.miraclemoon.co.uk.

A huge thank you to Emma at Cover My Bubble for supporting our podcast - you can find out more about all that Cover My Bubble offer at www.covermybubble.co.uk

Music: Moments by Shane Ivers - https://www.silvermansound.com

Being a NICU nurse: A Conversation with Beth of Superdinky

Tune in to this episode of The Miracle Moon Podcast, where we have the privilege of speaking with Beth, one half of Superdinky. Beth talks about her multitude of experiences – from her personal experiences with postnatal depression and complex PTSD following the loss of her son Tom, just before he turned 2 years old to her role as a neonatal nurse and co-founder of Superdinky. 

(Trigger warning- Child loss)

From Mum to Neonatal Nurse

Beth started her journey into parenthood with the struggle of postnatal depression, loss of her child, Tom at age 2 and further mental health issues such as complex PTSD. Beth decided that she wanted to give back and support others as a result of her experiences and trained as a neonatal nurse. She has now worked in some of the country's largest NICUs and is currently bereavement lead in the special care baby unit where she currently works. 

Guiding Parents Through the NICU Journey

In this episode, Beth shares her insights into NICU nursing, the nuances of her role as a bereavement lead, and the importance of collaboration between parents and medical staff. She offers invaluable advice on navigating the complexities of NICU, including protecting oneself from the emotional toll.

Embracing Compassion and Kindness

Throughout our conversation, Beth emphasises the importance of compassion and kindness in the NICU community. From the overwhelming experience of navigating PTSD and coping with loss, Beth shares her experience on finding the right support, moving from unhelpful to helpful coping skills and fostering self-kindness.

Beth sheds light on the neonatal nursing crisis, emphasising the challenges nurses face in an emotionally demanding environment. She highlights the importance of teamwork, debriefs, and the significance of caring not just for babies but for entire families.

Superdinky: Spreading Joy and Compassion

Beth and her business partner Lorna (NICU Mum) launched Superdinky in 2020, a venture driven by their desire to bring joy to NICU parents. Superdinky creates adorable vests for NICU babies, offering a sense of normalcy and empowerment to parents in a challenging environment. Beth speaks passionately about their mission to spread awareness about NICU and provide support through their unique pay-it-forward scheme, you can find out more and pay it forward here: Premature Baby Clothes | Superdinky and follow them @superdinkyuk.

We love engaging with our listeners! Don't forget to tag us on Instagram @miraclemoonuk when you're tuning in.

Help us spread the word by leaving a review and subscribing...that way, you won't miss a single episode.

If this episode resonates with you or if you have questions, reach out to us on Instagram or shoot us an email at hello@miraclemoon.co.uk. You can also find us on our website, www.miraclemoon.co.uk.

A huge thank you to Emma at Cover My Bubble for supporting our podcast - you can find out more about all that Cover My Bubble offer at www.covermybubble.co.uk

Music: Moments by Shane Ivers - https://www.silvermansound.com

This week, we're bringing you a special episode that sheds light on an important perspective. Join us as we speak with Lizzie, a mum-to-be who is about to start her NICU journey. 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, her experiences and feelings. We are going to hopefully also do another episode with her once she has had her baby, to talk about how the experience was for her. 

Lizzie's story is a testament to the varied paths to motherhood. As a solo mum who utilised a sperm donor, she underwent three rounds of IVF. Her journey included not just one, but two surgeries and the heart-wrenching experience of a miscarriage. 

At the 10-week scan, Lizzie's reality took a new shape. She's a midwife herself, and her knowledge added depth to her experiences. Her baby was diagnosed with an abdominal wall defect known as exomphalos, creating a huge uncertainty for the rest of her pregnancy. Lizzie discusses how she has coped with the uncertainty, the anxiety, the grief and how she is preparing to start her journey as a NICU parent. 

We explore topics such as: 

• Single Motherhood 

• IVF and Sperm donation

• Being a “geriatric” Mother

• Coping with a medical diagnosis 

• The importance of community 

• How to prepare for NICU 

• Bonding with your baby, in the womb and in NICU 

• Navigating the unknown 

Lizzie's journey is just beginning, and she's preparing to step into the world of NICU. Her story is one of hope, uncertainty, strength, and community. As we conclude this episode, we invite you to join us in sending positive thoughts Lizzie's way as she embarks on this journey. We are hoping to catch up with Lizzie again in the future when she is home.

We love engaging with our listeners! Don't forget to tag us on Instagram @miraclemoonuk when you're tuning in.

Help us spread the word by leaving a review and subscribing...that way, you won't miss a single episode.

If this episode resonates with you or if you have questions, reach out to us on Instagram or shoot us an email at hello@miraclemoon.co.uk. You can also find us on our website, www.miraclemoon.co.uk.

A huge thank you to Emma at Cover My Bubble for supporting our podcast - you can find out more about all that Cover My Bubble offer at www.covermybubble.co.uk

Music: Moments by Shane Ivers - https://www.silvermansound.com

This week, we're honoured to have a truly inspirational guest on The Miracle Moon Podcast: Lottie, the driving force behind Leo's Neonatal, a charity that provides crucial support for NICU parents based in the North East. 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.

Living with Loss and Navigating NICU -- Trigger warning- Baby Loss

Lottie was pregnant with twins, Leo and Oscar, at 21 weeks, her waters broke around Leo. She delivered Leo at 24 weeks, and he passed away after 4 hours. Lottie's pregnancy journey continued and she gave birth to Oscar just 4 days later, at 25 weeks. In our conversation, Lottie sheds light on her experience of having a child in NICU for over 100 days. She discusses the challenges of managing respiratory issues, the rollercoaster of hospital visits, and the impact on her mental health. 

Transitioning from NICU to Home 

The path from NICU to home comes with its own set of challenges, from health anxiety to the search for control in an unpredictable situation and we discuss all of the ways that it may feel on transitioning from hospital to home. Our conversation touches on various topics, including the need for control after NICU, health anxiety, how tricky “normal” experiences like baby groups are and the lasting impact on mental health

Leo's Neonatal: A Beacon of Support for NICU Parents in the North West

Lottie established Leo's Neonatal in honor of her son. This incredible charity offers a range of support services, including NICU-friendly baby groups, trauma-informed care, and peer and professional support for NICU parents. They also provide a much-needed space for baby loss support, an area often overlooked. Lottie highlights the wonderful work that Leo's Neonatal is doing, making a significant impact on the lives of NICU parents.

NICU Mental Health Awareness Week

Lottie's dedication to supporting NICU parents extends to organizing NICU Mental Health Awareness Week, taking place from September 18th, 2023. During this week, Leo's Neonatal will be raising awareness about the mental health challenges faced by NICU parents and offering ways for people to get involved and show their support.

To learn more about Leo's Neonatal and the incredible work they do, visit their website at leosneonatal.org or follow them on Instagram @leosneonatal. If you're in the North East, you can access their valuable support services through their website.

We love engaging with our listeners! Don't forget to tag us on Instagram @miraclemoonuk when you're tuning in.

Help us spread the word by leaving a review and subscribing...that way, you won't miss a single episode.

If this episode resonates with you or if you have questions, reach out to us on Instagram or shoot us an email at hello@miraclemoon.co.uk. You can also find us on our website, www.miraclemoon.co.uk.

A huge thank you to Emma at Cover My Bubble for supporting our podcast - you can find out more about all that Cover My Bubble offer at www.covermybubble.co.uk

Music: Moments by Shane Ivers - https://www.silvermansound.com

Today on the Miracle Moon Podcast, we're honoured to have Madeline Cheney join us, the creative force behind the podcast and Instagram page @therarelife . Madelines platform serves as the ultimate solidarity hub for parents navigating the uncharted territory of raising children with rare conditions. Just like we do here, Madeline fosters an environment of candidness and authenticity, creating a validating and normalising community for medical parents.

Neonatal Care & Rare Conditions

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. We also talk about their journey through NICU with a child with medically complex needs and a rare genetic disease, whilst also juggling the care of a toddler at home. We discuss the impact of becoming a medical parent and how it can influence mental health, relationships and our world view. We discuss feelings that many medical parents feel but may not always articulate- such as resentment, jealousy, bitterness, grief, intense primal love and uncertainty. 

Key quotes: 

“The day you find out something is different about your child, you become the person you never thought you would be” 

“I had a lot of feelings of inadequacy and overwhelm and having no idea what anyone was saying. I knew nothing about the NICU.” 

“I will do anything to keep this child alive… it was survival mode” 

“NICU wasn't all trauma, I have fond memories… this feelings of I get to see my baby, I felt so much excitement” 

“The first few weeks at home were hellish adjusting to being home without the nurses there to hold our hands and we didn't know what we were doing with the medical devices” 

“I ache for the pain she went through (my daughter at home), cos I was in pain. I grieve everything she went through and I went through” 

“The unknown part of it complicates grief, you're grieving what you have gone through but you are also not sure what else is going to happen” 

“I feel the protective feeling that most parents feel but on steroids because of everything he has been through” 

“When I recognise it is grief and sadness, sometimes that feels more unmanageable than anger” 

Connect with Madeline:
For those seeking a community that understands the unique challenges of parenting children with rare conditions, Madeline's podcast and Instagram page, @therarelife, offer valuable insights and a sense of belonging. Her work resonates with parents navigating similar journeys, providing a place where experiences can be shared and understood.

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We love engaging with our listeners! Don't forget to tag us on Instagram @miraclemoonuk when you're tuning in.

Help us spread the word by leaving a review and subscribing...that way, you won't miss a single episode.

If this episode resonates with you or if you have questions, reach out to us on Instagram or shoot us an email at hello@miraclemoon.co.uk. You can also find us on our website, www.miraclemoon.co.uk.

A huge thank you to Emma at Cover My Bubble for supporting our podcast - you can find out more about all that Cover My Bubble offer at www.covermybubble.co.uk

Music: Moments by Shane Ivers - https://www.silvermansound.com

Join us this week to dive deep into a topic that hits home for many parents who've walked the NICU journey alongside us. Remember that Instagram post we shared a while back? The one where we shed light on the challenges NICU parents face while navigating maternity wards? The response was simply overwhelming – so many women shared their stories, revealing just how much stress NICU parents go through on top of an already challenging situation.

We start by reflecting on the incredible impact that Instagram post had. It sparked a global conversation, bringing to light the struggles NICU parents encounter within maternity wards.

We dive into some of the emotional stories that were shared with us. These stories showed us firsthand the urgent need for change and support in these situations.

In this episode we are joined by the amazing Bethany (@_hairby_bethany), who's graciously sharing her own journey of having a premature baby at 32 weeks. She opens up about the challenges she faced within her local hospital.

We talk about the shock of being considered a low-risk pregnancy and the rollercoaster of emotions that came with giving birth prematurely.

Motherhood within the context of neonatal care is a complex landscape, and we delve right into it.

Bethany's determination to drive change shines through as she discusses how she raised a formal complaint about her experience.

You'll get to know about the Patient Advice and Liaison Service (PALS), an invaluable resource for addressing concerns with medical care.

Ever heard of Maternity Voices Partnerships (MVPs) and Patient Advisory Groups (PAGs)? We're talking about these local avenues for advocacy and how they play a crucial role in bringing about change and how you can get involved in your local community.

We're underscoring the incredible impact of seemingly small adaptations in maternity wards. These seemingly minor changes can create a world of difference for NICU parents' experiences.

Our mission with this podcast is to be a part of advocating for these changes. We're hoping to inspire you to join this cause and be agents of change.

It's important to note that this episode was recorded prior to the Letby case verdict. It is crucial to remember that the need to raise concerns and advocate for change remains as important as ever.

We love engaging with our listeners! Don't forget to tag us on Instagram @miraclemoonuk when you're tuning in.

Help us spread the word by leaving a review and subscribing...that way, you won't miss a single episode.

If this episode resonates with you or if you have questions, reach out to us on Instagram or shoot us an email at hello@miraclemoon.co.uk. You can also find us on our website, www.miraclemoon.co.uk.

A huge thank you to Emma at Cover My Bubble for supporting our podcast - you can find out more about all that Cover My Bubble offer at www.covermybubble.co.uk

Music: Moments by Shane Ivers - https://www.silvermansound.com