NICU Babies Parent Support

Latest Episodes:

Episode 83: Finding the Best Pediatrician for Your NICU Baby ft. Dr. Ari Brown Sep 06, 2023

Show notes

Your child's pediatrician is likely one of their most important; it's where all things begin. Author of the "411" series and revered pediatrician, Dr. Ari Brown, gives great insight on traits you should look for in your own pediatrician, vaccine schedules and resources to help you be the best advocate for your NICU baby.

In this episode, we chat about:

After receiving your degree in child development, what made you pursue a career in pediatrics?
What are things your pediatrician should be looking at and considering if your child is a NICU graduate? What traits should you consider in your pediatrician to best serve your child?
When should a parent consult a pediatrician and when should they seek counsel from an additional specialist for their child?
What should the relationship look like between a child's pediatrician and their other specialists?
In an age of digital medicine, i.e. Dr. Google, how do you counsel your parents on when to seek medical care and when to treat things at home?
Describe the ideal pediatrician-patient relationship.
Let's talk about delayed vaccination schedules for medically fragile children.
Tell us about your books: Baby, Expecting and Toddler 411. What can reader's expect?
For a NICU parent who feels hyper-sensitive to every symptom their child presents, what's your best advice?

Ari Brown, MD is a practicing pediatrician in Austin, Texas, for over 25 years after completing her pediatric residency and fellowship in developmental/behavioral pediatrics at Harvard Medical School/Children's Hospital Boston. Her passion to advocate for children and educate families extends beyond the office setting. She is the author of the bestselling "411" parent education book series including Baby 411: Clear Answers and Smart Advice for Your Baby's First Year with the new 20th anniversary/10th edition out this year, Toddler 411, and Expecting 411 available where books are sold and on Amazon. She also hosts online courses on newborn care and sleeping through the night. She has appeared on numerous national news and talk shows including NBC's Today Show, Dr. Phil, and CNN. She is a trusted voice for children's health, serving as a spokeswoman for the American Academy of Pediatrics (AAP). Dr. Brown has received the American Academy of Pediatrics Lifetime Achievement Award for child health advocacy.

Connect with Dr. Brown:

Twitter: https://twitter.com/baby411

Facebook: https://www.facebook.com/expecting411

TikTok: https://www.tiktok.com/@aribrownmd

Website: https://baby411.com/

Buy Dr. Brown's books:

https://amzn.to/3drAzH3

Learn about Dr. Brown's online newborn care and sleeping courses:

https://store.draribrown.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

Episode 82: Common NICU Breastfeeding Problems ft. Dr. Leah Jordan Aug 30, 2023

Show notes

Women often hear that breastfeeding is natural, but many encounter challenges or hurdles. Neonatologist and breastfeeding advocate, Dr. Leah Jordan, shares tips on establishing a good milk supply, finding good lactation support and advice on managing stress when nursing your NICU baby doesn't go as planned.

In this episode, we chat about:

What led you to pursue a career in neonatology?
Why are you so passionate about breastfeeding and health equity?
What should a new mom know about breastfeeding if she's expecting a NICU stay?
Establishing milk supply, particularly for a NICU mom, can often be highly stressful. Tips and suggestions? What's safe and what isn't?
How can a mom advocate for getting good lactation support?
Once she leaves the NICU with her baby how can she get support if she runs into challenges or subsequent hospital stays?
If your baby is NPO (Latin nil per os) "nothing by mouth", what support can the hospital provide for storing your pumped milk?
What's your best advice to a NICU mom who is stressed about nursing her new baby?

Dr. Leah Jordan is a board certified pediatrician from Minnesota who loves supporting NICU moms in reaching their breastfeeding goals. She recently completed her fellowship and joined Children's Minnesota as a neonatologist. Her research centers on the use of quality improvement methodology to promote breastfeeding in the NICU and beyond.

Learn more about breastfeeding:

https://llli.org/breastfeeding-info/

The NICU is hard. We're here to help.

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

Episode 81: The Importance of Donor Milk ft. Veronica Cogwin Aug 23, 2023

Show notes

When formula or breastfeeding isn't a viable option for your NICU baby, donor milk may be the next best alternative. Former Mothers' Milk Bank at Austin Board Member and NICU mom, Veronica Cogwin, shares about her daughter's personal experience as a donor milk recipient.

In this episode, we chat about:

Tell us about Victoria's birth.
What did your breastfeeding journey look like with your micropreemie?
When did donor milk become a viable possibility for your daughter?
What were some of the risks Victoria faced without donor milk?
How long did she receive donor milk?
How is your daughter doing now, nearly eight years later? What role did donor milk play in her early development?
Explain your role advocating for donor milk.
How can a mom donate her milk to a local milk bank?
What is the screening process like?
What's your best advice to a parent considering utilizing donor milk for her NICU baby?

Veronica Cogwin is the mom of five children, including a micropreemie, Victoria, born at 24 weeks. Veronica is a strong advocate of donor milk after it played a major role in helping her daughter grow and thrive in the NICU. She is a graduate of Texas A&M University and a former member of the Board of Directors of the Mothers' Milk Bank at Austin.

Connect with Mothers' Milk Bank at Austin:

https://milkbank.org/

The NICU is hard. We're here to help.

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

Episode 80: Helping Your Child in School Through IEPs and 504s ft. Amber Feller Aug 16, 2023

Show notes

IEPs! 504s! Sometimes those services provided by the school can feel overwhelming, even when know they can benefit our child. School Board Trustee and NICU mom, Amber Feller, breaks it all down into practical steps, with action items to help you focus so you can assist your child in receiving the services he or she needs.

In this episode, we chat about:

What led you to pursue a fulfilling, but sometimes contentious, spot on the local school board?
You have both school board and parent experience with services provided by the public school system. Biggest take home lesson from both experiences?
Some parents may be familiar with early intervention (looks different in every state), but what is an IEP and how does it differ from a 504?
When a child graduates from high school, how do they get help in college?
How does a parent begin the process of asking for help for their child from PK-12?
What questions should they ask and how do they know their rights?
Does the school district make a diagnosis based on testing they do or is that up to the parent and an outside medical professional?
What do you think parents should know about IEPs?
Sometimes there's a negative stigma with receiving help through special services. How can a parent (and a child) overcome that stigma?
What's your best advice to a parent seeking an IEP for his/her child?

Amber Feller has been actively involved in Round Rock ISD schools since 2008 serving in various volunteer roles and she currently serves as a Trustee on the School Board. Amber has also been very active in the community while serving through Girl Scouts, Boy Scouts, her church and her children's extracurricular activities. Amber earned her Bachelor's of Science in Sociology, with a Minor in Math, from Texas A&M University and her Master's of Education in Counseling from the University of North Texas. She is a Licensed Professional Counselor as well as a Nationally Board Certified Counselor.

Connect with Amber:

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

The NICU is hard. We're here to help.

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

Episode 79: What to Do When Your NICU Kid is Bullied ft. Sr. Josephine Garrett Aug 09, 2023

Show notes

Just when you find your rhythm, something like school bullying enters the picture and it can often feel overwhelming and frustrating. Sr. Josephine Garrett, a licensed mental health school counselor talks strategies, perspective and encouragement in dealing with bullying.

In this episode, we chat about:

How and why did you pursue counseling?
You serve both a school and have a private practice. What are the similarities and differences in serving those two populations?
Some NICU babies have challenges that are easily detected once they leave the hospital, but sometimes parents find themselves encountering hard things as their babies become older and enter school. How do you, as a counselor and mental health professional, advocate for students differently than other school staff?
What's an ideal student to counselor ratio?
Often, a NICU baby becomes a target, if you will, for school bullies. Maybe they have a device, a physical challenge or their size makes them vulnerable. How can the family work with the school counselor to address that?
What are some things you do with your students to help them process trauma, work through hard emotions or feel comfortable in who they are?
When should a parent be concerned?
What's your best advice to a parent who has a child struggling in school, academically, socially or emotionally?

Sr. Josephine is a native Texan born and raised in Houston. She completed a BA in Politics with a Business concentration at the University of Dallas. Following graduation she began a 10-year career in banking, serving as Vice President in the Home Loans division of Bank of America. In 2011, she shifted her focus and began formation to be a Religious Sister with the Sisters of the Holy Family of Nazareth. She is a Clinical Mental Health Counselor for her local school and she also serves children in private practice.

Connect with Sr. Josephine:

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

Website: https://nazarethretreats.org/people/sister-josephine-garrett

The NICU is hard. We're here to help.

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

Episode 78: Breastfeeding Awareness, Birth Photography & Doulas ft. Leilani Rogers Aug 02, 2023

Show notes

Today, you get the trifecta! Doula, birth photographer and breastfeeding advocate Leilani Rogers shares about her breastfeeding awareness passion project, which was an outgrowth of her work as a birth photographer. Those two passions then led her to obtain her doula certification. Her knowledge and experience in all three is certainly a gift!

In this episode, we chat about:

How did you find your calling in birth photography?
Your birth photography accolades are many! You even hosted the public breastfeeding awareness project for five years. What was the purpose of that project and why were you inspired to create it?
How did birth photography lead you to pursue certification as a doula?
What does a doula do, particularly in the case of a high-risk pregnancy?
What is a "doulatog" as you share on your website?
Women and their partners might be apprehensive about hiring a birth photographer, a doula or both, what would you say to alleviate some of those fears?
When you're considering hiring a photographer or a doula, what are some questions you should ask to ensure it's a good fit?
Do all doctors/hospitals allow for a photographer or a doula? What questions should a new mom ask?
How can a NICU mom benefit from services like birth photography or a doula?
What's your best advice to a parent who wants to hire a photographer or a doula?

Leilani Rogers became interested in birth as a young mom with preterm labor with all four of her children. She became more empowered and informed with each pregnancy, and when she documented her first birth in 2011 her life as an artist intersected with her love for and knowledge of birth perfectly. She is also a trained doula and a mentor to budding young photographers worldwide.

Connect with Leilani:

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

YouTube: https://www.youtube.com/@PhotosbyleilaniRogers

Facebook: https://www.facebook.com/leilani.rogers.photographer

Website: https://PhotosByLei.com

Learn more about the Public Breastfeeding Awareness Project:

https://www.photosbylei.com/2014/07/29/public-breastfeeding-awareness-project/

The NICU is hard. We're here to help.

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

Episode 77: Palliative Care of Neonates ft. Dr. Elvira Parravicini Jul 26, 2023

Show notes

Trigger warning: In this episode we talk about death and dying.

Not every baby leaves the NICU but it has been Dr. Elvira Parravicini's passion to serve those families with infants who have life-limited or life-threatening illnesses. The Neonatal Comfort Care Program seeks to address those needs and support those families from diagnosis, to delivery and beyond.

In this episode, we chat about:

How were you led from your specialty of perinatology and neonatology to your work in palliative care?
Can you define what palliative care means?
What is the Neonatal Comfort Care Program and how does it assist parents?
If a parent has a baby who has a life-limiting or life-threatening condition, what can they expect in a neonatal program and how does that differ from adult palliative care?
End of life issues are complicated and very personal, how do you accompany a family through an extraordinarily difficult experience while respecting their wishes?
If a hospital does not have a service similar to yours, what are some things a parent can do, or people they can reach out, to assist them in giving honor to their baby's life?
What's one myth you'd like to confront when it comes to palliative care?
What's your best advice to a parent who has a child who won't be leaving the NICU?

Dr. Elvira Parravicini is an attending neonatologist at NewYork Presbyterian Morgan Stanley Children's Hospital, the Director of the Neonatal Comfort Care Program and an Associate Professor of Pediatrics at Columbia University Medical Center. She obtained a certification in palliative medicine from Harvard University. She was born, raised and went to school in Milan, Italy, and moved to the United States in 1994. Her passion for helping the most fragile patients in the neonatal population inspired Dr. Parravicini to create a unique and innovative program for infants affected by life-limiting or Life-threatening conditions. The Neonatal Comfort Care Program addresses the complex medical and non-medical needs of infants and their families. The interdisciplinary Neonatal Comfort Care team supports expectant mothers of babies diagnosed with a life-limiting condition during the perinatal journey, from diagnosis to delivery and beyond.

Palliative Care Training Course:

https://www.neonatalcomfortcare.com/events-2/2023/9/20/2023-next-level-perinatal-palliative-care-training-course

Connect with Dr. Parravicini:

Website: www.neonatalcomfortcare.com

The NICU is hard. We're here to help.

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

Episode 76: How One Mom's Grief Moved Her to Action ft. Misti Staley Jul 19, 2023

Show notes

Trigger warning: In this episode we talk about death and dying.

Sometimes, families leave the hospital without their NICU baby. Misti Staley shares about the beautiful life of her son and how the challenges they encountered during his care inspired her to honor his memory after his passing. That outgrowth of generosity is now blessing NICUs and their families around the world.

In this episode, we chat about:

Freeman's birth.
What devices/assistance came home with him and how did you adapt to those changes?
What is the Freearm and how did the idea of it come about?
What were some of the challenges (design or otherwise) you encountered when designing and marketing it?
How do you think this device can honor Freeman's memory?
What's your best advice to a NICU mom who is stressed about the devices or assistance her baby is discharged with?

Misti Staley's son Freeman was born in 2015 after a healthy pregnancy, but after birth, Misti learned of his many medical complexities. Freeman spent 3.5 months in the NICU, was home for 5 weeks and then spent 5 long months in the PICU, before sadly losing his battle with pulmonary hypertension at 10 months old. After Freeman's passing, Misti built Freeman Playground in Helena, Arkansas; an ADA playground with ramps and a poured in place rubber surface. Through all that Misti learned through Freeman's tube feeding journey, Misti also created the FreeArm- a tube feeding device that holds gravity syringe feeds, pump feeds and infusions at the hospital home and on-the-go. Freeman's legacy of love continues through Freeman Playground and the FreeArm.

Connect with Misti:

Facebook: www.facebook.com/freemanplayground/

Facebook: www.facebook.com/FreeArm

Instagram: www.instagram.com/freearm.tube.feeding.assistant/

LinkedIn: www.linkedin.com/company/staley-house-llc-creator-of-the-freearm/

LinkedIn: /www.linkedin.com/in/mististaley/

Learn more about FreeArm:

https://freearmcare.com/

Find additional "fun" products to help your medically fragile child:

https://freearmcare.com/friends

The NICU is hard. We're here to help.

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

Episode 75: Caring for Your Child's Wounds ft. Media Esser Jul 12, 2023

Show notes

NICU baby skin is sensitive and often requires proper wound care, either from a lack of development or other treatments required by the NICU staff. Media Esser, a board-certified wound nurse shares common causes of skin damage, suggestions on making wound care easier and tried and true rules of thumb when caring for damaged neonate skin.

In this episode, we chat about:

What is a wound care specialist?
What is it that makes NICU/micropreemie babies' skin so sensitive?
What are some common causes of skin damage in the NICU?
What are some questions parents or caregivers should ask to ensure they understand wound care treatment and techniques?
How do you know when what you're doing is hurting, or helping, your baby's skin?
What are some rules of thumb you use as a wound care specialist when working with NICU skin?
What is your best advice to a parent who is feeling overwhelmed by their baby's wound care treatment or care?

Media Esser is a nurse scientist, neonatal nurse practitioner and board-certified wound nurse, currently in a Level II NICU in Green Bay, Wisconsin. Dr. Esser also holds the position of Assistant Professor and Neonatal NP Program Chair at Alverno College in Milwaukee. She is a consultant for evidence-based practice, a NICU review course content, quality improvement, skincare research, and she presents on all those topics on a local and national level. Dr. Esser is passionate about neonatal skincare, specifically diaper dermatitis in the NICU, and has published many manuscripts and chapters on the topic.

Links to Media's research:

https://www.researchgate.net/profile/Media-Esser

Connect with Media:

National Association of Neonatal Nurses: https://my.nann.org/myprofile/profile?UserKey=a5ab1838-c37d-4dfe-8ed1-7de4d8c12dca

The NICU is hard. We're here to help.

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

Episode 74: Preparing Your Baby for Surgery ft. Dr. Tory Meyer Jul 05, 2023

Show notes

So, your baby is having surgery. Whether it's acute, routine or planned, pediatric surgeon Dr. Tory Meyer, shares what parents can expect, what questions to ask and how to approach the procedure with the best possible information.

In this episode, we chat about:

What led you to pursue a career in pediatric surgery?
What are the most common surgeries you perform?
For planned surgeries, parents have time to prepare their child for the procedure. What can a parent expect at the appointments leading up to the surgery?
What kinds of questions should a parent be asking of the surgeon and the surgical team?
In your opinion, what makes for a successful surgical experience for both the child and the parent?
For emergency surgeries it can often feel overwhelming and chaotic for both the child and the parent. How can a parent make the best decision with limited time? What questions should they be asking?
Sometimes there is a clear answer for a family when making a surgical decision and other times, it's not as easy. How do you help families decide the right course for their situation?
What's the best part about being a pediatric surgeon? Most challenging?
What's your best advice to a parent who has an upcoming surgery and feels scared and overwhelmed?

Tory Meyer is a Pediatric Surgeon at Austin Pediatric Surgery. He is the past Chief of Staff and past Chairman of the Pediatric Leadership Board at Dell Children's Medical Center and is Clinical Affiliate Faculty at the Dell Medical School. Dr. Meyer is co-founding member of Operation KidDocs, a surgical mission group, and the present Vice Chairman of Westcave Outdoor Discovery Center.

The NICU is hard. We're here to help.

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