We Saved You a Seat

Joining Forces 2021: Meet Our Keynote Speakers and Some FAQ

On March 26th, 2021 from 9:00am - 12:00pm, Oklahoma Family Network will host our 14th Annual Joining Forces Conference, with Keynote Speakers, Dr. Jennifer Jones and Dr. Kami Gallus (from Oklahoma State University) and we are excited to host them on the podcast today.  After a brief introduction, sharing their mission and professional vision, they provide us a glimpse into their keynote address for the Joining Forces Conference.

We follow up Dr. Jones and Dr. Gallus' interview with Oklahoma Family Network Associate Director, Heather Pike, who answers some frequently asked questions about Joining Forces.

Join us for the 14th Annual Joining Forces Family & Professional Partnership Conference!

MISSION -- To provide learning opportunities for supporting individuals and families through partnerships of community members, agencies, and organizations throughout Oklahoma.

OVERVIEW -- Joining Forces: Family & Professional Partnership Conference brings together local, state, and national leaders to discuss best practices and promising practices in the area of family-professional partnerships. Come join us as we learn together from some amazing Oklahoman's and how we can all Foster Belonging with HOPE and working together in community. This is where you "belong".

#JoiningForcesConference #FamilyProfessionalPartnerships #Belong #HowToBelong #Inclusion #IBelong #OthersBelong #Diversity #OklahomaFamilyNetwork #OklahomaStateUniversity

Rare Day Awareness: 1P36 Chromosome Deletion Syndrome

Welcome to Rare Disease Day, which is celebrated the last day of February every year.  Today we want to honor all the amazing families who walk daily in the world of "rare", and take a moment to share one family's journey through birth, diagnosis, therapies, and awareness.

"Rare Disease Day is a day where people can see this and realize the hardship of fighting something you know nothing about." - Sumathy Lal

"Nothing about rare diseases is simple - not the diagnosis, not the daily care, not the long term." - Unknown

Rare Disease Day is designed to bring awareness to rare diagnoses and the journey many families face alone or quietly.  Today, we hope you will hear the words from a beautiful young mom who faces the world of rare head on, as she searches for answers and understanding.

For more information on rare disease day please visit:  https://www.rarediseaseday.org/

For more information on 1p36 Chromosome Deletion Syndrome please visit:  http://1p36.com/

 

G-Tube and Trach Conversation: One NICU Mom's Experience

 (Photo Credt: Scantling Photography)

Christel Longoria has shared her birth story many times with many families.  This podcast shares a piece of her NICU journey, that primarily focuses on the emotional decision to provide Declan with a trach, and then a g-tube. 

Christel is always willing to have tough conversations around hard topics with other families as they process making difficult decisions from a parent perspective regarding feeding tubes and tracheostomies.  

#GTubeAwareness #FeedingTubeAwareness #PrematurityAwareness #NICU #TrachAwareness #25Weeker #FeedingTherapy 

 

NICU Awareness: Preeclampsia, Women's Heart Health, and Support through NICU

If you've met the Mahler family, you have made life-long friends. Cara and Matt's son, Silas, born at 28 weeks and 6 days gestation, weighing just 1 pound, 11 ounces provided these first time parents with memories they'll never forget.  Listen in as she describes the (minimal) early preeclampsia symptoms and the slow road to recovery, after Silas was born, including keeping her heart healthy after preeclampsia.

Cara shares how some amazing nurses took care of Silas and her in postpartum; and then describes why she didn't get involved in support groups initially, yet eventually sought out peer support as she transitioned home with a NICU baby.

#NICUAwareness #SoonerStart #Preeclampsia #HeartHealth #Prematurity #IUGR 

For The Village, Inc: Enhancing Birth Outcomes in the Black Community

"In the United States a Black baby is 2-3 times more likely to die before reaching their first birthday compared to a white baby. A Black woman is 3 to 4 times more likely to die due to pregnancy or labor complications compared to a white woman. Providing informed, genuine, empowering, and evidenced-based support to Black families during the peri-natal period will make a difference with these statistics. When these services are provided to Black families by Black birthworkers we have the potential to make an even bigger impact." - For The Village, Inc.

Listen in today as Oklahoma Family Network introduces you to For The Village, Inc., a non profit established to enhance birth outcomes in the Black community. 

Today you will meet Farah Antoine-Mayberry, OT, CLC and hear her heart, as she speaks to the: what and why, For the Village, Inc was established; and then hear how you can become an active part of the solution for better outcomes in the Black community.

To learn more about For the Village, Inc, visit: https://forthevillageinc.org/

#BlackHistoryMonth #ForTheVillageINC #HealthEquity #BlackMaternalHealth #BlackInfantMortalityRates #BlackMaternalHistory

NICU Awareness: 24 week twins, twinless twin, therapies, and hope

Today our guest host Tamra Crabtree, speaks with mom, Gabbi Gifford, about her twin girls Eliana Rose and Harper Mae, born at just 24 weeks and 1 day gestation.  Gabbi gives us a glimpse into some heartbreaking and precious moments, she and her husband Sirandon, had during their 98 day Neonatal Intensive Care Unit stay.

We skim the surface on topics like prematurity, twins, raising a twinless twin, transition from NICU, integrating therapies into their lives, Oklahoma resources (SoonerStart, SoonerRide), and how we tend to compare our children to others.

 

To learn more about the resources Gabbi mentions in her podcast, please take a look at the resource links below:
SoonerStart (https://sde.ok.gov/soonerstart)
SoonerRide (https://oklahoma.gov/ohca/individuals/soonerride.html)

National Newborn Screening Awareness Month (Jennifer Baysinger)

September is National Newborn Screen Awareness Month.

Jennifer Baysinger, Progam Manager for Oklahoma State Department of health has been a registered nurse for over 19 years. She obtained a Master’s Degree in Nursing Administration in 2013. Her primary  career has been centered on the health of infants and children. In 2008, Jennifer joined the Oklahoma Newborn Screening Program as the nurse coordinator. She was in this role for three years and then had to move to another state with her family. During her time away from newborn screening she worked in a variety of nursing roles, but nothing tugged at her heart the way newborn screening does. Jennifer returned to the Oklahoma Newborn Screening Program as the Program Manager in summer of 2018 for the Oklahoma State Department of Health.

Contact Information: 

Jennifer Baysinger, MSN, RN

Newborn Screening Program Manager

Oklahoma State Department of Health

405-271-6617  ext 56756

jenniferxa@health.ok.gov

 

Resources:

Oklahoma Newborn Screening Program Website: nsp.health.ok.gov

National Newborn Screening Awareness Month (Annie Evans & Susan Mays)

September is National Newborn Awareness Month: 

Passionate about helping families find good quality healthcare that transcends cultural and language barriers, Annie Evans works to creatively engage different stakeholders in Expecting Health’s programs through outreach efforts, development of practical tools, and monitoring of impact for quality improvement. She focuses mostly on our online engagement initiatives from both a technical and conceptual perspective. 

 

Annie currently manages the Newborn Screening Family Education Program which created Navigate Newborn Screening, the free, online educational module for families.  Annie received a Master of Public Health from George Washington University.

 

Susan Mays lives in Mukilteo Washington with her husband and two children. She is a passionate advocate for Newborn Screening after their life got flipped upside down when her oldest daughter was born with a rare metabolic disorder. After an uneventful pregnancy and delivery they couldn't wait to start their lives as a family of 3. Then 2 weeks later came the call which would change lives forever. 

Indie, Susan's daughter, had tested positive for a life threatening metabolic disorder which was thankfully caught during a routine public health program called Newborn Screening. Without this early detection and diagnosis, Indie's condition is lethal. Because of it, treatment and management was able to be started right away and Indie is having the opportunity to grow and develop typically. Susan believes every baby born in the U.S. deserves this same privilege and because of this she advocates for NBS in a variety of ways. One of which is volunteering with the Expecting Health team and is an ambassador for the Navigate Newborn Screening Program. 

 

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Helpful Links: 

 

• Baby's First Test
• Expecting Health
• Navigate Newborn Screening
• Oklahoma Family Network
• Expecting Health Contact: info@expectinghealth.org

 

Mental Health Support

DeAnn and her husband Scott Warfel live in Oklahoma City and are the parents of five daughters ages 25 to 12. Three of their daughters are adopted through DHS and two are biological. DeAnn graduated from Oklahoma City University School of Law and worked in the health care field for many years; however, God called her home to home educate her children when their health issues became significant. Through the years their family has dealt with many concerns such as epilepsy, autism, bipolar, addiction, anxiety, depression, suicide attempts, self-harm, disruptive mood dysregulation disorder, RAD, and many more. DeAnn realized how important it was to find a network of people who could help you through some of these issues and people who could remind you that you are not alone. She has taught classes through the National Alliance on Mental Illness and continues to support families as she can. She currently continues to homeschool the last of her five children.

 

Oklahoma Family Network: http://oklahomafamilynetwork.org/

 

National Alliance on Mental Illness: www.nami.org 

 

Valuable site for teaching how to deal with a child who is mentally ill. Helps with teaching communication skills and collaboration skills: www.livesinthebalance.org

 

CMV Awareness: Family Stories & Facts

Between 50 percent and 80 percent of adults in the United States have had a CMV (Cytomegalovirus) infection by age 40. Once CMV is in a person's body, it stays there for life. CMV is spread through close contact with body fluids. Most people with CMV don't get sick and don't know that they've been infected. (https://medlineplus.gov/)

CMV affects 1 in every 200 babies born. The symptoms range from completely asymptomatic to severe. It is the most common non-genetic cause of hearing loss at birth and unfortunately often contributes to progressive hearing loss. Many babies are born with no (or missed symptoms), but may later develop hearing loss or have other development issues. Pregnant women should take appropriate precautions to reduce their risk. 

June is CMV awareness month. Guests Ellie Pryor and Cara Gluck share their personal stories of giving birth to their children whom received a diagnosis of CMV and what they would like other families to know about this common virus.

ADDITIONAL RESOURCES:

www.oklahomafamilynetwork.org

https://www.nationalcmv.org/ 

https://www.facebook.com/oklahomafamilynetwork/