Beyond the NICU

Black Maternal Health Week is recognized each year, April 11-17, to bring attention and action in improving Black maternal health. Justina Kopp, mom to quadruplets and a NICU baby herself, shares how her experience led her to advocacy.

In this episode, we chat about:

• The moment she found out she was pregnant with quadruplets.

• Justina’s relationship with her OB/GYN.

• Her difficult relationship with her MFM doctor and how that made her feel.

• Her care in the NICU.

• How this experience changed how she approaches healthcare, particularly for herself.

• Her best advice to a woman of color who finds herself pregnant, with one baby or more.

Justina Kopp lives in the Twin Cities, Minn., with her husband, Matthew and their quadruplets. She is a 2013 graduate of the University of St. Thomas where she studied Catholic Studies and Biology. Currently, Justina is pursuing a master’s degree in Marriage and Family Therapy at Saint Mary’s University of Minnesota.

Justina’s essay:

https://motheringspirit.com/2023/01/fighting-for-our-lives/

Resources:

https://www.cdc.gov/healthequity/features/maternal-mortality/index.html

https://blackmamasmatter.org/2023-black-maternal-health-week/

Connect with Justina:

Instagram: https://www.instagram.com/justinakopp 

The NICU is hard. We’re here to help.

Hand to Hold is a national nonprofit dedicated to providing neonatal intensive care unit (NICU) parents with personalized emotional support, educational resources and community before, during and after their baby’s NICU stay. NICU support is available at no cost to NICU parents in English and Spanish.

Connect with Hand to Hold:

Learn more or get support at handtohold.org

Follow Hand to Hold on social media:

Facebook: https://www.facebook.com/handtohold

Instagram: https://www.instagram.com/handtohold/  

Twitter: https://www.twitter.com/NICUHandtoHold

YouTube: https://www.youtube.com/HandtoHold   

The following music was used for this media project:

Music: Thriving Together [Full version] by MusicLFiles

Free download: https://filmmusic.io/song/10332-thriving-together-full-version

License (CC BY 4.0): https://filmmusic.io/standard-license

Music: Bright Colors Of Life by MusicLFiles

Free download: https://filmmusic.io/song/7855-bright-colors-of-life

License (CC BY 4.0): https://filmmusic.io/standard-license

Feeding your NICU baby can often be a challenge. April is Occupational Therapy month and pediatric OT Laurie Layne and I focus on how feeding therapy can be utilized and some of the challenges NICU parents may face.

In this episode, we chat about:

• For pediatrics, what exactly does an occupational therapist do and how does it differ from other pediatric therapies?

• When should a parent seek out occupational/feeding therapy?

• What are some things parents should look for in an occupational/feeding therapist?

• If you have a sensory seeker who has heavy oral input (puts everything in their mouth), what can you do?

• What's the most common feeding challenge with NICU babies/premature infants?

• How does a g-tube affect feeding therapy?

• Food texture and food aversion sometimes feels overwhelming, how can a parent combat the fear of feeling like it's never getting better?

Laurie Layne, OTR, received her B.S. in community health from Texas A&M University and her master of occupational therapy degree from Texas Woman’s University-Houston.  She has 25 years of experience in working with pediatric populations in early intervention, school-based services, and private outpatient clinics.  Laurie treats a varied caseload, including children with feeding aversions, sensory processing disorder, developmental delay, autism spectrum disorders, neuromuscular dysfunction, and genetic disorders. She is trained in various feeding methodologies and is Handwriting Without Tears Level 1 certified.  Laurie is the proud mom of three college kids and she enjoys traveling, reading, and playing pickleball.

Links to products:

https://chewytubes.com/products/ps-and-qs/

https://talktools.com/collections/chews-chewy-tubes

The NICU is hard. We’re here to help.

Hand to Hold is a national nonprofit dedicated to providing neonatal intensive care unit (NICU) parents with personalized emotional support, educational resources and community before, during and after their baby’s NICU stay. NICU support is available at no cost to NICU parents in English and Spanish.

Connect with Hand to Hold:

Learn more or get support at handtohold.org

Follow Hand to Hold on social media:

Facebook: https://www.facebook.com/handtohold

Instagram: https://www.instagram.com/handtohold/  

Twitter: https://www.twitter.com/NICUHandtoHold

YouTube: https://www.youtube.com/HandtoHold   

The following music was used for this media project:

Music: Thriving Together [Full version] by MusicLFiles

Free download: https://filmmusic.io/song/10332-thriving-together-full-version

License (CC BY 4.0): https://filmmusic.io/standard-license

Music: Bright Colors Of Life by MusicLFiles

Free download: https://filmmusic.io/song/7855-bright-colors-of-life

License (CC BY 4.0): https://filmmusic.io/standard-license

Birth can be many things: incredible, traumatic, beautiful, scary, empowering or all of them. Birth and postpartum nurse Lo Mansfield will talk about bringing intuition, grace and evidence into the birth experience.

In this episode, we chat about:

• Why nursing, specifically why labor and delivery?

• On your social media channels you talk about balancing intuition, grace + evidence. What do you mean by that?

• You sometimes mention the loss of your own mom while you were pregnant. Many of our NICU parents listening are experiencing grief as they mourn the loss of a "normal" delivery or baby. How did/do you work through that grief?

• What's the best way to communicate to your doctor and L&D nurses your desires for your baby's birth?

• If you are designated as high-risk prior to delivery, what are things that may change your delivery?

• Some moms may feel distant from their NICU baby due to separation at birth, is that normal? If so, what are your suggestions for working through that?

• What's the best thing a laboring mom can do to ensure the best possible birth outcome for her baby?

• What's your best advice to a laboring mom?

Lo Mansfield MSN, RNC-OB, is a specialty-certified registered nurse in obstetrics, postpartum, and fetal monitoring who is passionate about families understanding their integral role in their own stories. She is tired of you being told what to do or what is “best” - and instead believes you should get all the information and then be supported and cheered for as you make up your own mind. She is the owner of The Labor Mama and the creator of the Your Body, Your Birth courses. She is also a mama of three (6, 4, and 2), a wife to Kelvin, a freelance writer, and a mashed potato enthusiast. 

Connect with Lo:

Instagram: https://www.instagram.com/thelabormama/

Facebook: www.facebook.com/thelabormama

Twitter: https://twitter.com/thelabormama  

Website: https://thelabormama.com/

The NICU is hard. We’re here to help.

Hand to Hold is a national nonprofit dedicated to providing neonatal intensive care unit (NICU) parents with personalized emotional support, educational resources and community before, during and after their baby’s NICU stay. NICU support is available at no cost to NICU parents in English and Spanish.

Connect with Hand to Hold:

Learn more or get support at handtohold.org

Follow Hand to Hold on social media:

Facebook: https://www.facebook.com/handtohold

Instagram: https://www.instagram.com/handtohold/  

Twitter: https://www.twitter.com/NICUHandtoHold

YouTube: https://www.youtube.com/HandtoHold   

The following music was used for this media project:

Music: Thriving Together [Full version] by MusicLFiles

Free download: https://filmmusic.io/song/10332-thriving-together-full-version

License (CC BY 4.0): https://filmmusic.io/standard-license

Music: Bright Colors Of Life by MusicLFiles

Free download: https://filmmusic.io/song/7855-bright-colors-of-life

License (CC BY 4.0): https://filmmusic.io/standard-license

Your baby knows your voice from the beginning! Dr. Jenny Koo, neonatologist and children’s author, shares why reading is important and her latest project, aimed at NICU siblings.

In this episode, we chat about:

• This is Dr. Koo's fourth children's book, but her first about the NICU. What prompted her to write the book?

• Where did she find the time to write a book as a doctor and new mom?

• What are some of the analogies she uses in the book to explain the complicated world of the NICU to younger children?

• Of all the medical specialities she could've chosen, why neonatology?

• How has motherhood changed her outlook on parenting and interacting with parents of NICU babies?

• We know that reading to young children is important, how can a parent utilize books in the NICU with his/her baby?

• What are some of your favorite children's authors and books for your own family?

Dr. Jenny Koo is a board-certified neonatologist affiliated with Sharp Mary Birch Hospital for Women & Newborns in San Diego, CA. Dr. Koo’s interest lies in cardiovascular health of newborns, and she is a part of the Sharp Mary Birch Neonatal Research Institute. Dr. Koo is passionate about family centered care and ensuring that the entire family unit – not solely the neonate – is cared for and supported throughout their NICU journey. As a hobby, Dr. Koo enjoys drawing and has authored four children's books.

Connect with Dr. Koo:

Instagram  |  Twitter

Buy Dr. Koo’s other children’s books:

Hamilton & Eleanor’s Adventures

The Little Giraffe Foundation:

The foundation that funded Dr. Koo’s book aimed at NICU siblings for patients of Sharp Mary Birch Hospital for Women & Newborns

The NICU is hard. We’re here to help.

Hand to Hold is a national nonprofit dedicated to providing neonatal intensive care unit (NICU) parents with personalized emotional support, educational resources and community before, during and after their baby’s NICU stay. NICU support is available at no cost to NICU parents in English and Spanish.

Connect with Hand to Hold:

Learn more or get support at handtohold.org

Follow Hand to Hold on social media:

Facebook  |  Instagram  |  Twitter  |  YouTube  

The following music was used for this media project:

Music: Thriving Together [Full version] by MusicLFiles

Free download: https://filmmusic.io/song/10332-thriving-together-full-version

License (CC BY 4.0): https://filmmusic.io/standard-license

Music: Bright Colors Of Life by MusicLFiles

Free download: https://filmmusic.io/song/7855-bright-colors-of-life

License (CC BY 4.0): https://filmmusic.io/standard-license

Diet and nutrition are top priorities in helping your baby grow and thrive in the NICU. Registered dietitian Keli Hawthorne shares how you can play a pivotal role in your baby's daily nutrition.

In this episode, we chat about:

• Why did you choose to pursue a career in nutrition and dietetics, specifically neonatal/pediatric?
• What's the difference between a nutritionist and a dietitian?
• Where can parents go for assistance and help?
• What are some questions a parent should ask their child's nutritionist/dietitian?
• What are the pros/cons of milk fortification in micropreemies or babies smaller than 1600kg?
• You led the effort in getting FDA approval for intravenous omega-3 fatty acid lipid emulsions, but what does that mean for the average NICU baby?

Keli Hawthorne, MS, RD is a Registered Dietitian and the Director for Clinical Research for the Department of Pediatrics at the Dell Medical School at the University of Texas at Austin. Prior to UT, Keli worked as a NICU dietitian and researcher for over 15 years. Her research background focuses on neonatal and pediatric nutrition including mineral absorption, intestinal failure, and human milk fortification for premature infants. Keli was a leader in the national efforts to obtain FDA approval for intravenous omega-3 fatty acid lipid emulsions for infants and children in the US with severe liver damage. She was honored with the Texas Distinguished Scientist Award from the Texas Academy of Nutrition and Dietetics and is a past recipient of the Emerging Dietetic Leader award and Recognized Young Dietitian of the Year. When Keli is not in Austin, she can be found at her nearby cattle ranch.

Connect with Keli:

Instagram  |  Facebook  |  Website

The NICU is hard. We’re here to help.

Hand to Hold is a national nonprofit dedicated to providing neonatal intensive care unit (NICU) parents with personalized emotional support, educational resources and community before, during and after their baby’s NICU stay. NICU support is available at no cost to NICU parents in English and Spanish.

Connect with Hand to Hold:

Learn more or get support at handtohold.org

Follow Hand to Hold on social media:

Facebook  |  Instagram  |  Twitter  |  YouTube

The following music was used for this media project:

Music: Thriving Together [Full version] by MusicLFiles

Free download: https://filmmusic.io/song/10332-thriving-together-full-version

License (CC BY 4.0): https://filmmusic.io/standard-license

Music: Bright Colors Of Life by MusicLFiles

Free download: https://filmmusic.io/song/7855-bright-colors-of-life

License (CC BY 4.0): https://filmmusic.io/standard-license

It’s one thing to receive a diagnosis and a whole other to live it. NICU mom Katrina Moline shares how cerebral palsy has, and has not, affected their daily life.

In this episode, we chat about:

• What is Cerebral Palsy (CP)?

• For children/babies who have CP what are some of the symptoms, developmental challenges?

• When you learned of the diagnosis, what did you do?

• How has CP affected your daily family life? What has been the hardest adjustment?

• How have you grown in the last 13 years since Bryce was diagnosed?

• What's your favorite service that Hand to Hold offers parents and caregivers?

• What’s your best advice to a mom, dad or caregiver whose child has just received a CP diagnosis?

Katrina Moline is the Hand to Hold Operations Director. She earned a bachelor’s degree in communications from Texas State University. Katrina has been a part of the Hand to Hold family since 2009, receiving peer-to-peer mentoring after the birth of her son at 24 weeks and later serving as a peer mentor herself. She is grateful for the opportunity to focus her time and talents on a mission so near and dear to her heart. Katrina, her husband Caleb and their two sons live in Austin, Texas.

Connect with Katrina:

Instagram  |  Facebook

The NICU is hard. We’re here to help.

Hand to Hold is a national nonprofit dedicated to providing neonatal intensive care unit (NICU) parents with personalized emotional support, educational resources and community before, during and after their baby’s NICU stay. NICU support is available at no cost to NICU parents in English and Spanish.

Connect with Hand to Hold:

Learn more or get support at handtohold.org

Follow Hand to Hold on social media:

Facebook  |  Instagram  |  Twitter  |  YouTube

The following music was used for this media project:

Music: Thriving Together [Full version] by MusicLFiles

Free download: https://filmmusic.io/song/10332-thriving-together-full-version

License (CC BY 4.0): https://filmmusic.io/standard-license

Music: Bright Colors Of Life by MusicLFiles

Free download: https://filmmusic.io/song/7855-bright-colors-of-life

License (CC BY 4.0): https://filmmusic.io/standard-license

No high risk pregnancy is the same. Dr. Summers joins me for a conversation about mitigating the risks, working with your OB/GYN and questions to ask.

In this episode, we chat about:

• What defines a high-risk pregnancy and what places a woman in that category?

• If you have some of those risks, what should you look for in an OB/GYN to give you proper care and attention?

• What are some things women can do to mitigate the risks of a high-risk pregnancy?

• When should a women consider meds, therapy (or both) during or after a high-risk pregnancy?

• What are the delivery options for pregnancies that are considered high-risk?

• How can a woman improve the communication between her regular OB and her maternal fetal medicine (MFM) doctor?

• What’s the best advice for a high-risk mama?

Dr. Jenny Summers is a Texan born and raised, who loves working with women throughout every stage in life in women’s health. She is a longhorn and a former child life specialist, who completed her medical school at UT Health Science Center in San Antonio and her residency training at UT Southwestern, serving as chief resident during her fourth year. She has completed a gynecologic advanced pelvic and robotic fellowship.  She currently serves as a clinical assistant professor at The University of Texas Dell Medical School and has been awarded a Rising Star as one of Texas Monthly’s Super Doctors for the past 4 years.

Connect with Dr. Summers:

Instagram  |  Website

The NICU is hard. We’re here to help.

Hand to Hold is a national nonprofit dedicated to providing neonatal intensive care unit (NICU) parents with personalized emotional support, educational resources and community before, during and after their baby’s NICU stay. NICU support is available at no cost to NICU parents in English and Spanish.

Connect with Hand to Hold:

Learn more or get support at handtohold.org

Follow Hand to Hold on social media:

Facebook  |  Instagram  |  Twitter  | YouTube   

The following music was used for this media project:

Music: Thriving Together [Full version] by MusicLFiles

Free download: https://filmmusic.io/song/10332-thriving-together-full-version

License (CC BY 4.0): https://filmmusic.io/standard-license

Music: Bright Colors Of Life by MusicLFiles

Free download: https://filmmusic.io/song/7855-bright-colors-of-life

License (CC BY 4.0): https://filmmusic.io/standard-license

As we celebrate American Heart Month, heart mama and two-time cancer survivor, Kasie Marek, speaks openly and honestly about what it’s like to have a son with Hypoplastic Left Heart Syndrom (HLHS). We have a beautiful discussion about the realities of caring for a child with a serious and rare heart condition.

In this episode, we chat about:

• What is Hypoplastic Left Heart Syndrome (HLHS)?

• How does HLHS affect a family: emotionally, logistically and financially?

• What are the treatment options available for HLHS?

• What are the effects of a heart transplant on a family?

• What’s the best advice for a fellow heart mama?

Kasie Marek is a medical mom trying to figure it all out, one day at a time. A two-time childhood cancer survivor who entered the “nurse" mom world after her first-born, Noah, was born with Hypoplastic Left Heart Syndrome (HLHS). Now, she’s trying to navigate the everyday life of medical to-do lists, while still being a MOM, WIFE, and prioritizing self-care.

Connect with Kasie:

Instagram  |  Facebook  |  Website (personal)  |  Website (business)

The NICU is hard. We’re here to help.

Hand to Hold is a national nonprofit dedicated to providing neonatal intensive care unit (NICU) parents with personalized emotional support, educational resources and community before, during and after their baby’s NICU stay. NICU support is available at no cost to NICU parents in English and Spanish.

Connect with Hand to Hold:

Learn more or get support at handtohold.org

Follow Hand to Hold on social media:

Facebook  |  Instagram |  Twitter  |  YouTube

The following music was used for this media project:

Music: Thriving Together [Full version] by MusicLFiles

Free download: https://filmmusic.io/song/10332-thriving-together-full-version

License (CC BY 4.0): https://filmmusic.io/standard-license

Music: Bright Colors Of Life by MusicLFiles

Free download: https://filmmusic.io/song/7855-bright-colors-of-life

License (CC BY 4.0): https://filmmusic.io/standard-license

It’s a new era in the podcast and new host Kathryn Whitaker shares what listeners (and YouTube fans!) can expect this year.

In this episode, Kathryn chats about:

• Her background and why this podcast means so much to her heart.
• Why the new format (audio and video)?
• What are some topics and guests listeners can expect this year?
• Why don’t more NICUs have Dr Pepper on tap? (ha!)

Kathryn Whitaker is the author of Live Big, Love Bigger, an award-winning book about living an intentional life and how her NICU baby helped her get there. She's a sixth-generation Texan who loves queso, cowboy boots and southern hospitality. On social media and her blog, Kathryn shares her honest take on family life and living in the chaos, all while drinking Dr Pepper and cheering on the Texas A&M Aggies. She has appeared in USA Today, radio and TV stations around the country and is a frequent guest/sometimes host on SiriusXM Radio. Kathryn and her husband, Scott, live with their six children in Austin, Texas.

Connect with Kathryn:

Instagram  |  Facebook  |  Website

Buy her book:

Live Big, Love Bigger

The NICU is hard. We’re here to help.

Hand to Hold is a national nonprofit dedicated to providing neonatal intensive care unit (NICU) parents with personalized emotional support, educational resources and community before, during and after their baby’s NICU stay. NICU support is available at no cost to NICU parents in English and Spanish.

Connect with Hand to Hold:

Learn more or get support at handtohold.org

Follow Hand to Hold on social media:

Facebook  |  Instagram  |  Twitter  |  YouTube

The following music was used for this media project:

Music: Thriving Together [Full version] by MusicLFiles

Free download: https://filmmusic.io/song/10332-thriving-together-full-version

License (CC BY 4.0): https://filmmusic.io/standard-license

Music: Bright Colors Of Life by MusicLFiles

Free download: https://filmmusic.io/song/7855-bright-colors-of-life

License (CC BY 4.0): https://filmmusic.io/standard-license

Guest: Lauren Aboulafia

Lauren is a writer, actor, director, and animator. Lauren most recently animated and directed an animated comedy-drama called “Super Scar”, based on her own traumatic birth experience and NICU story.

Hear more about Lauren's story, and what motivated her to create Super Scar, an animated comedy-drama about a new moms' support group where Lauren, an aspiring superstar, describes her experience of giving birth 3 months early, and her struggle to stay sane amidst the madness of the NICU. 

Hand to Hold® is a national nonprofit dedicated to providing neonatal intensive care unit (NICU) parents with personalized emotional support, educational resources and community before, during and after their baby’s NICU stay. NICU support is available at no cost to NICU parents in English & Spanish.

Learn more or get support at handtohold.org

Follow Hand to Hold: 

facebook.com/HANDtoHOLD

Instagram: @handtohold

Twitter: @NICUHandtoHold