Avsnitt
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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.
Katie's daughter was born five days before Christmas, 13 weeks early. Christmas Day was a particularly difficult time for the family as they watched their little girl battling for her life. She fought hard and came home ten weeks later.
Katie found the run up to her daughter's first Christmas at home particularly tough and talks to us about how she got through it and how she is feeling this year.
The episode is full of hope and ends with a special thank you to our listeners for joining us for season 2. Season 3 is coming soon!
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 [email protected]. 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
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This week on the Miracle Moon 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 children born prematurely.
Catriona, who is also a paediatric Occupational Therapist with over twenty years experience working with children, young people and families, founded The Smallest Things in September 2014 following the premature birth of both her sons. She volunteers her time for the charity and is passionate about making the world a better place for children born prematurely and their families.
We discuss:
Catriona's own experience with her sons' premature births at 29 weeks.
The emotional toll of NICU stays and the struggle of returning to work too soon.
The charity's efforts and success to extend parental leave and the importance of employer support.
How people can talk to their workplace about supporting NICU parents now, and become an “employer with heart”.
How the charity is supporting children born prematurely in their educational journey.
The Prem Aware Award Scheme and free teacher training for supporting premature children
Understanding the subtle learning difficulties of prematurely born children.
The vision of the smallest things and how they want to work closely with health visitors to increase understanding of NICU.
Find out more about what the smallest things are doing on their instagram @thesmallestthingscharity or on their website: www.thesmallestthings.org
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 [email protected]. 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
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Saknas det avsnitt?
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In this informative episode, we speak with Katie Sabin, a dedicated PhD student at King's College London, who leads the 'EXPAND Study' (Exploring Parental Emotional Support Needs After NICU Discharge). Katie's research sheds light on the emotional support needs of NICU parents, addressing important gaps in support. We delve into her findings and their potential impact on NICU parental support.
**Our Conversation Topics Include:**
- The 'EXPAND Study': Understanding Emotional Support Needs of NICU Parents
- The Importance of This Research: Filling Gaps in NICU Parental Support
- Key Findings: Uncovering the Emotional Impact of NICU Experiences
- Potential Impact: Enhancing Post-Discharge Support and Awareness
- Necessary Changes: Transforming the Landscape of NICU Parental Support
- Getting Involved: Contributing to the Research and Support
Join us as we discuss the critical need for improved emotional support for NICU parents and the potential for positive change through Katie's research.
Follow the EXPAND study here to find out more and get involved.
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 [email protected]. 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
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This week on the podcast, we talk to Lorna. Lorna is a NICU mum and the co-founder of SuperDinky/@superdinkyuk a clothing brand which makes super soft organic cotton vests for tiny babies.
She has a background in fashion design and started the brand with a neonatal nurse (Beth, who has already been on the podcast) following her own NICU experience. The brand has two aims, to make the world's best NICU baby clothes and to support the mental health of NICU parents.
Lorna says she believes that NICU parents do not get sufficient mental health support so she sees SuperDinky as a way to connect parents, build community and bring them a moment of joy during a potentially traumatic experience.
Earlier this year Lorna had an unexpected home birth at 37 weeks with her second baby after live blogging her pregnancy. She is here to talk about her NICU experience with her first baby, her mental health journey, SuperDinky and about having a full term baby after NICU.
Thank you for sharing Lorna!
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 [email protected]. 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
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Today we are absolutely honored to be talking with Lady Sarra Hoy. Lady Sarra gave birth to her son Callum 11 weeks early due to HELLP syndrome and was thrown into NICU life.
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. Lady Sarra dedicates her time to raising awareness of and improving neonatal care.
This is such a profound episode of our podcast and we really hope you enjoy listening to Lady Sarra and feel inspired by her reminders that you are not alone.
Find Lady Sarra here: @sarra.hoy
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 [email protected]. 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
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Today we are talking to Sophie Burch, Nurture You. Sophie has had three babies in NICU and years of experience working with parents to help them bolster their mental health.
In this episode, Sophie tells us about her son and twins who all required a NICU stay and gives advice to parents on how to navigate NICU whilst being aware of their mental wellbeing.
Sophie runs “Beyond Birth” which is a program that builds awareness of perinatal mental health, it is a gentle introduction to looking after yourself and Sophie normalises mental wellbeing practices in a very accessible way. She has a book for parents called the Beyond Birth Guide and leads practitioner training to run parent support groups. Sophie has embarked on a new venture called 'Nurture You', which empowers people to build their resilience, confidence and self-awareness.
Find Sophie here: @sophie_nurtureyou
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 [email protected]. 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
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This week we speak to Danielle, who is the person behind @nicu_experience on instagram and her husband Tyler. Danielle and Tyler had a baby who was born at 24 weeks and 4 days due to PPROM. In this episode we talk about their 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 Mum and Dad. We talk about what is difficult for Dads in the NICU and what helped Tyler in the times when he couldnt be at the hospital. We also discuss anniversaries, birthdays and how tricky feelings of grief and loss can be.
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 [email protected]. 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
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In this episode, we talk to Faye from @rockabyehub, 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, and Faye's insights are invaluable for anyone facing this issue.
We explore essential topics like managing reflux with a feeding tube, identifying silent reflux in babies, and the journey to successful breastfeeding after a missed tongue tie diagnosis. Faye also sheds light on advocating for tongue tie assessments for premature babies before discharge.
We also delve into Faye's personal experiences as a parent and her transition into becoming a pillar of support for others. Learn how she helps parents dealing with babies experiencing reflux and the impact of prematurity and NICU stays on gut health and reflux.
Tongue tie and its effects on feeding are discussed, along with strategies for seeking support for reflux and distinguishing between tongue tie, reflux, and allergies. Faye also offers heartfelt advice for parents navigating the challenging path of NICU life with a baby experiencing stomach issues.
Join us as we hear Faye's story, her journey of advocacy, and her mission to empower parents dealing with reflux, providing crucial resources and support to those in need. If you or someone you know is facing these challenges, this episode is a must-listen for insights, guidance, and advice.
Find out more about Faye, here: Rockabye Hub | Tongue Tie, Infant Feeding, Reflux & Colic
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 [email protected]. 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
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!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 [email protected]. 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
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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 [email protected]. 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
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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 BarriersThis 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 [email protected]. 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
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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 [email protected]. 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
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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 [email protected]. 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
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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 [email protected]. 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
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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.----
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 [email protected]. 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
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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 [email protected]. 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
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Join us for an enlightening and much needed conversation with Katie Ross, known as @bloominglittles on Instagram. Katie's expertise as a neonatal occupational therapist and a mother with NICU experience brings a wealth of insights to our podcast. In this episode, we delve into how we can enhance NICU care by advocating for positive touch, empowering parents and caregivers, providing information about how to care for your baby and how to best support them in a baby-led way.
Katie's background as a Neonatal Occupational Therapist, combined with her personal NICU journey, enables her to offer a comprehensive perspective on the needs of NICU babies and their caregivers. Her role as a mother who has spent time in NICU and a professional who has worked within the NICU setting gives her insights a unique depth, she is able to understand the emotional impact of NICU as well as what we can therefore do to support parents to learn and develop to look after their babies best on NICU.
Throughout this episode, Katie talks about critical aspects of NICU care and advocacy. She highlights the link between nurses and parents, shedding light on how this dynamic can impact the care journey. Katie discusses the importance of advocating for positive touch and skin-to-skin contact, emphasising the need for education to facilitate these practices effectively, both for parents and staff. We also talk about how learning this information after having your child in NICU can at times feel tricky, but the importance of knowing that you did the best you could with the information you had and also the need to spread this awareness and knowledge for all.
We explore important questions such as...
“What if one nurse tells me something is OK and another says something different”
“How can I advocate for me and my baby in times of stress and trauma”,
“How can I connect and care for my my baby whilst they are in NICU”
“How do babies communicate in NICU?”
“How would you know your baby is in pain, what would you need to do?”
“The importance of physical touch”
Empowering Caregivers and Parents:
One of the core missions of Blooming Littles, Katie's platform, is to educate parents and NICU staff to support the development of NICU babies. Katie has developed an online program that is designed to equip NICU parents with the knowledge and tools needed to care for their babies during their time in NICU. Katie advocates for baby-led interaction and underscores the significance of recognising babies' cues and signs of stress. You can find out more about Katie on instagram at @bloominglittles and on her website www.bloominglittles.com where you can also find more information about her course.
Key Quotes and Takeaways
Throughout the conversation, Katie provided some powerful quotes...
- "I had been treating as the therapist, in the same room where I had my child 7 hours later."
- "We can have and create positive experiences in the NICU."
- "I advocate for baby-led interaction and experience, learning your baby's cues is a great place to start."
- "There are different signs of stress and overstimulation to look out for...when we stop and offer support (for our babies) we see that stress sign diminish."
Join us in this episode and please let us know what you think by tagging us @miraclemoonuk when you tune in. Consider leaving us a review, and subscribing so you don’t miss an episode. If you have been impacted by this episode or have any questions, please contact us on instagram or at [email protected] or 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
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In this episode, we sit down with Amanda Griffith Atkins, a Marriage and Family Therapist, mother of a child with a disability, and a passionate advocate for parents. Amanda's Instagram platform provides a supportive space for parents of children with disabilities to connect and share their experiences.
During our conversation, Amanda opens up about her personal journey into parenthood and her experience raising her first child, Asher, who has Prader-Willi syndrome. We discuss her time in the Neonatal Intensive Care Unit (NICU) and the challenges of raising a child with complex medical needs.
Amanda shares insights into the emotional toll of parenting a child with special medical requirements, including the impact on work, relationships, and personal well-being. She discusses coping with difficult emotions like jealousy and grief, as well as managing the uncertainty that comes with such a journey.
Throughout the episode, Amanda provides valuable advice and perspective, offering comfort to parents who may be facing similar challenges.
Connect with Amanda on Instagram: @amanda.griffith.atkins or visit her website: www.amandagriffithatkins.com.
Join us in this episode and please let us know what you think by tagging us @miraclemoonuk when you tune in. Consider leaving us a review, and subscribing so you don’t miss an episode. If you have been impacted by this episode or have any questions, please contact us on instagram or at [email protected] or 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
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This week we speak to Nicola, Katie and Chloe. These women attended our first Miracle Moon Therapeutic Group and kindly agreed to share their experience. We also hear about their stories, how NICU has impacted them and how the group helped.
We cover topics such as self blame, meaning making, second guessing yourself, anxiety, grief, PTSD and how the group has helped these women feel less alone, validated and supported.
To join our next therapeutic group, please find out more at www.miraclemoon.co.uk
Join us in this episode and please let us know what you think by tagging us @miraclemoonuk when you tune in. Consider leaving us a review, and subscribing so you don’t miss an episode. If you have been impacted by this episode or have any questions, please contact us on instagram or at [email protected] or 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
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This week we speak to Karen. Karen is a parent who has been through neonatal care herself and she now works as the Parent and Family Engagement Lead For Yorkshire and Humber ODN (operational delivery network). In this episode we discuss.
We discuss Karen’s experience of becoming a parent and how as a result she changed her job to support other families experiencing NICU. Karen talks about her role as a parent and family engagement lead and the work she does to help other families and neonatal units. Karen shares a little bit about how the system is set up to support parents and the work that is being done to make changes and put neonatal care on the radar of maternity services and how changes are needed for NICU parents on maternity wards. We also discuss how you as a NICU parent can become involved in making changes in your local area through parent advisory groups and maternity voice partnerships.
Find out more about Karen and the work she does at @neonatal-yh or contact her on [email protected]
Join us in this episode and please let us know what you think by tagging us @miraclemoonuk when you tune in. Consider leaving us a review, and subscribing so you don’t miss an episode. If you have been impacted by this episode or have any questions, please contact us on instagram or at [email protected] or 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
- Visa fler
