Published on Anna's 5th birthday, this episode features Megan DeRuiter, mom to Anna who has Trisomy 13. She discusses the confusion of Anna being given a poor prognosis despite presenting well, the impact of her healthcare background on her early journey and what she has learned about the Trisomy 13 community. Extra To Love is a non-profit organiza…

In this episode of Extra To Love: A Trisomy Podcast, host, Jenn, and her husband, Matt, reflect on the impact of parenting a child with Trisomy 18 on their marriage over the past 6 years. They share their personal experience, lessons they've learned, ways they are still trying to grow and more. They also share the unique experience of navigating a …

Are belief and faith the same thing? Listen as Julie compares the two, and discusses that God not only wants us to have faith, but commands it! Extra To Love is a non-profit organization that aims to improve the lives of people with Trisomy 18 and Trisomy 13 by supporting their families. Through Extra To Love: A Trisomy Podcast, we hope effected fa…

Chelsi, mom of 5 year old Jazz who has Trisomy 18 (Edwards Syndrome), joins Extra To Love: A Trisomy Podcast to share her wisdom and perspectives on how Jazz's life has impacted their family, if this journey is worth it, the importance of connecting with the trisomy community and more. You definitely don't want to miss this episode! Follow Jazz's j…

We are joined by Audrey Brock (M.S. CCC-SLP) and Olivia Lane (M.S. CCC-SLP) join us to share all about speech therapy, communication using AAC, and more. Although most people with Trisomy 18 or Trisomy 13 are non-speaking, that does not mean they are non-communicating. Communication can look many different ways, and speech therapists have a wonderf…

In this Ministry Moment, Julie shares on resilience and the call to persevere through trials. With an encouraging call to reframe our thinking, let this Ministry Moment give you a new wind to continue to be resilient through the obstacles you are facing. Extra To Love is a non-profit organization that aims to improve the lives of people with Trisom…

At Extra To Love, we are firm believers that a child's value is not based on the number of their days here on Earth. Evie, who had Trisomy 13 and lived 56 days, had an impactful, love-filled life. Evie's mom, Emily, shares about how their journey changed her, how she includes Evie in her baby sister's life, and her favorite memories shared with her…

In this Ministry Moment, Julie provides the ever-empowering reminder - If God is for us, who can be against us? In God we are strengthened and equipped to face each challenge, with Jesus - the source of our strength - walking right beside us. Extra To Love is a non-profit organization that aims to improve the lives of people with Trisomy 18 and Tri…

Our guests this week hold special meaning to ETL, as they have been the physical therapy providers for the kids of our ETL team members and have been cheerleaders for them every step of the way. In this episode, Rianna Silverstein, DPT and Kaitlyn Evers, DPT share their perspectives on their experience treating children with trisomy 18, discuss wha…

In this Ministry Moment, Julie encourages listeners to lean into community with the reminder that scripture repeatedly demonstrates the power of joining with others, especially in challenging times. Extra To Love is a non-profit organization that aims to improve the lives of people with Trisomy 18 and Trisomy 13 by supporting their families. Throug…

Jeanna Polacek, mom to 5 year old Mia who has full Trisomy 18 and co founder of Edwards’ Syndrome Association joins Extra To Love: A Trisomy Podcast to discuss their surprising birth diagnosis, the milestones Mia has reached, the relationship Mia has with her baby sister, as well as the heart and mission of Edwards’ Syndrome Association. We also di…

This week Julie discusses nurturing a spirit of gratitude and choosing to see God's hand in the midst of difficulties. If you are struggling to feel gratitude, let your challenge this week to be acknowledging your blessings. When you notice the good things in your life, even something like air conditioning in the summer heat, write it down or say t…

Home Health Nurse of 15 years and medical mom Tomi Moe joins Extra To Love: A Trisomy Podcast to share her perspective on how to identify and keep great nurses, realistic expectations for parents and more. Her experience being in many home as a nurse and also having nursing in her home for her child gives her unique and valuable insight to share. W…

In this Ministry Moment, Julie considers Joseph's role in our saviors life, and how we can glean the importance of an earthly father from what we know about him. Like Joseph, man trisomy fathers are thrown into situations they never could have predicted. Faith in God empowered Joseph to not only accept the situation, but to be the husband Mary need…

Kelly, mom of 5 year old Kora, who has Trisomy 13 (Patau Syndrome) joins us to share their story of ups and downs, and the beautiful life that Kora now leads as a big sister and almost-first-grader. Extra To Love is a non-profit organization that aims to improve the lives of people with Trisomy 18 and Trisomy 13 by supporting their families. Throug…

In this week's Ministry Moment, Julie encourages listeners to remember that we are doing the Lord's work every day, and reminds listeners to consider Colossians 3:23-24 - in whatever you do, work as if you are working for the Lord. Caring for a child with disabilities such as those associated with Trisomy 13 and Trisomy 18 can be taxing and can lea…

On this episode of Extra To Love: A Trisomy Podcast , we're talking to Jennifer Springer, Director of Operations for ETL. Jennifer is connected to the trisomy community through her granddaughter, Sage, who had trisomy 18. Jennifer talks about the choice to be the "village" that is needed to raise a child with disabilities, her love for the trisomy …

Julie Hawkins, Extra To Love Board Member and a Director of Children's and Family Ministry, begins a new feature on the ETL Podcast, Ministry Moments. It is our hope that each Ministry Moment provides the uplifting encouragement you need to continue seeking God's face through uncertainty. Extra To Love is a non-profit organization that aims to impr…

Lacey Ponder, mom of Eloise who lived 14 months and had Trisomy 18, discusses the shock of their birth diagnosis, the decision to focus on speaking life over her daughter, and how she finds comfort in the truths of the gospel as a bereaved mother. Extra To Love is a non-profit organization that aims to improve the lives of people with Trisomy 18 an…

Families are often told to consider the burden their child with special needs will have on their neurotypical children. What better way to remove the stigma than to allow the opportunity for their siblings to speak on their experience! Five children ranging in ages 13 to 17 joined the Extra to Love podcast to discuss their prospective of having a s…

Audrey Mercier gives a glimpse into the life she has with her daughter, Cecilia "Cece" who has Partial Trisomy 13. She was vulnerable with her heart and journey. She has just completed her first year of medical parenthood and is doing an incredible job! You can find her on facebook and instagram @reslilientmama_co. Extra To Love is a non-profit org…

Emma, Jenn and Amber announce some exciting changes and goals for 2024 with services offer from Extra to Love. Extra To Love is a non-profit organization that aims to improve the lives of people with Trisomy 18 and Trisomy 13 by supporting their families. Through Extra To Love: A Trisomy Podcast, we hope effected families will be empowered, connect…

Charity joins Emma and Amber on this episode to talk about the way she juggles her many hats and accomplishments. Charity has a heart to serve and give Maggie a life well lived and loved! The diagnosis her daughter has wasn't the end, but a beautiful revelation of things that really matter in life! Extra To Love is a non-profit organization that ai…

Jenn, Emma, and Amber discuss the events and emotions leading up to the very emotional first birthday of their children with Trisomy. We are often told the chances of even getting one is slim to none, as the first has come to pass, they discuss what it feels like as each birthday for their child comes back around. Asher is a little boy who will be …

The name "Journey" is the perfect name for a little girl who is described by her Mom as an answered prayer and a true blessing in her life! Listen in as her Mom, Deirdra tells the story of her birth, diagnosis, and the advocacy that has followed. Journey is a four year old girl who is quite the fashionista, and has a beautiful relationship with her…

Amber, Jenn, and Emma discuss their experience with "Hospice/Comfort Care" measures. One of us skipped over it, the other was not given a choice and the last of us chose it! In this episode we discuss our vastly different experiences and what lead us to make the decisions we did. We discuss the importance of titration of the FIO2 for your child. Di…

Podcast Co-Host Jenn takes us through the journey of her own grief of loss and life with another medically complex child. Asher, is her four year old son who has Trisomy 18, the odds have been completely stacked against him from the beginning. Asher has done incredible and amazing things despite the statistics he was compared to! Extra To Love is a…

Charity Nelson tells the story of her pregnancy, birth and life with daughter Maggie who is 3 years old and has Trisomy 18 (Edwards Syndrome). With a trach and GJ tube and two fun siblings, Maggie's story demonstrates the way medical complexity and fullness of life can coexist. Charity shares how she has witnessed God in the details of Maggie's lif…

Amber, Jenn and Emma sit down with Jenn’s close friend, Laura, to discuss how raising a child with trisomy has impacted their friendship. The ladies have an insightful conversation regarding how to discuss medical complexities with typical children and how to be a supportive friend to someone with a disabled child. Extra To Love is a non-profit org…

In this episode Kathryn discusses the impact her daughter's Trisomy 18 diagnosis had on her as a NICU nurse and her family. Indiana's lasting impact on her family isn't determined by the length of her life! Kathryn discusses the complications she had and all the things that make her daughter the blessing that she is. Extra To Love is a non-profit o…

Emma, Jenn, and Amber discuss the current state of their marriages and the impact a special needs child has had on their relationships and friendships. Extra To Love is a non-profit organization that aims to improve the lives of people with Trisomy 18 and Trisomy 13 by supporting their families. Through Extra To Love: A Trisomy Podcast, we hope eff…

Emma Springer, founder and Executive Director of Extra To Love, tells her journey with her daughter Sage's diagnosis, delivery and life. Emma is a mother of 2 and Registered Nurse. Sage is the inspiration behind Extra To Love! Extra To Love is a non-profit organization that aims to improve the lives of people with Trisomy 18 and Trisomy 13 by suppo…

In this weeks Extra Caffeinated Mom's segment, Amber, Jenn and Emma reflect a bit on statistics, and whether or not they are accurate. They also share a peak into their kid's stories by talking about the accessories they have. So grab whatever fuels you, and join these extra caffeinated moms as they premier the Extra to Love Podcast. If you are a f…

You need a care plan, referrals to fair care and consults to have fair care. Goal is to meet medical needs, stabilize, consult, intervene. From respiratory support to surgeries. How to assert your child’s needs for medical fair care.

Cooperate. Know your unit director, your case manager, social worker, charge nurse, social worker, consults, and their team.

Having a child with medical complexities and developmental delays is hard, but no need for pity. With this great task, it is the steadfast hope and long suffering that bring peace amongst the challenges.

Having a medical fragile child requires hours and days to months and for some years, in medical ic setting. There is much to learn, do and fight for as well as tend to the child. This is how I had to step away from some roles and ask for grace as I learned how to bring us all into our new life with the newest member…

Intensive medical

Power of the Holy Spirit

Helping our kids

Who do you look to for support and information on caring for and loving a child with Rare Trisomy? Medical care has its place. But they don’t know this life, if they do they help. Your child deserves those who can and will help. Kace a dear friend passed away and his two years of life is a testimony to the purpose and joy of life, even with a diagn…

The fatigue, fear and work of being a medical parent can rob us of enjoying this earthly life, we must calm and care for ourselves and then offer a calm and peace to our children as we help them live a earthly life.

Pastor Brian

What we need from prenatal care, each other and to know about t 13 and t 18.

If you have a rare trisomy child who has a CHD (heart complication) get consults. now! Always!

When do I ask for fair care? Full care? And what do I do?

All my children have a future in them. Glimpses of their personality and gifts come often. What a joy to see what they can become and do as they join Society, my dAugnter with t 18, she will too!

To finish the pod cast “home scary home” coming home from hospital life can be a hard transition, but also a time for growth. The transition is hard, but you can do it!

When the time came to head home from the nicu I felt scared and it was hard.I can say now, it was worth it!

Rose wears glasses! How did we know she needed them? How did we get her prescription? How has she done with them? Let me tell ya!