S2E26 | Exploring NICU Parental Support: Insights from the EXPAND Study with Katie Sabin

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

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

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

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

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

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

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

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

!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

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