A Little Extra Momming | Parenting medically complex and disabled kids

When your third child rewrites everything you thought you knew about medical parenting.In this episode, I talk with Lindsey White—mom of three navigating complex GI conditions, including Food Protein-Induced Enterocolitis Syndrome (FPIES)—and what happens when experience doesn’t transfer - doesn't prepare you for what comes next.We get into feeding tubes, hospital life, doctor searches, and the reality of managing a medically complex family when nothing follows the expected path.FPIES explained (real-life symptoms + why it’s often missed)When your “medical parent experience” stops applyingA third child with unexpected, more complex GI issuesFeeding tubes & feeding challengesHospital stays + ongoing care logisticsFinding (and refinding) the right doctorsManaging family schedules with multiple medical needsLiving with constant unknownsFPIES, pediatric GI disorders, feeding tubes, medically complex children, rare disease parenting, chronic illness parenting, hospital life, care coordination, special needs parenting, medical mom lifeThis episode is for parents navigating feeding issues, complex diagnoses, and the exhausting reality of figuring it out as you go.Know a parent deep in medical chaos? Send this their way.

Show NotesIn this episode, I’m sharing a layered look at what it actually means to parent a medically complex child—through 12+ hospital stays, ICU admissions, and the process of building a “home ICU” system over time.This isn’t a linear story. It’s a real one.We talk about those early days of bringing a medically fragile child home with no roadmap… the exhaustion, the uncertainty, and the moments no one really prepares you for. From there, I walk through how care evolves—what different levels of respiratory support actually mean, how hospitalizations can become cyclical, and what it looks like to slowly build confidence in both home care and hospital decision-making.This episode also explores:How to think about medical tools as support—not failureThe reality of repeated hospital stays and how your role changes over timeLearning when to manage at home vs. when to go inHow advocacy is built through experience, not personalityWhy you are the most consistent expert on your childAnd how it’s still possible to build a life—your life—inside all of thisAt its core, this conversation is about rhythm.Not perfection. Not control.But learning how to live, decide, advocate, and breathe inside a life you didn’t plan—but are actively building anyway.To make this episode more practical, I’ve included a few resources based on our real-life experience:A “Take to the Hospital” list (what we bring from home to make stays smoother)A “Take Home from the Hospital” list (items you can keep instead of letting them go to waste)A simple outline of our home sick-day regimen, including airway clearance routines, nebulizer use, suction timing, and how we think through escalationThese are not prescriptive or one-size-fits-all.They’re simply examples of what has worked for our family—shared in case it helps you ask better questions, feel more prepared, or build your own systems over time.If you’re new to this world, or even if you’ve been in it for a while:You don’t have to have everything figured out.You’re allowed to learn your child as you go.You’re allowed to build your rhythm over time.And you’re still allowed to live your life inside this story.Resources MentionedFinal Note:All links are temporarily available for FREE SUBSCRIBERS to our Substack articles with the Extra Care Collective. ExtraCareCollective.com That Hospital Life - What You Bring With YouThat Hospital Life (cont.) - What We Take Back With UsOur Sick-Day Action Plan (for respiratory viruses)

When traveling with a medically complex and disabled child, there is a constant tension between what’s possible and what’s safe. This episode lives right in that space. From a cross-country road trip on hospice to a Make-A-Wish trip that nearly unraveled, it’s an honest look at the beauty, fear, and split-second decisions families like ours carry. Not every yes is right for every family—but this is what it looks like to weigh the risk, and choose "yes" anyway.Practical Items for Traveling:Travel looks different when your child depends on equipment—but it is possible. These are the practical items that make it safer, smoother, and way less stressful.⸻🧻 Quick clean-up lifesaversWhen things get messy (and they will), these are non-negotiables: • Disposable chuck pads (underpads):https://tinyurl.com/ChuckPad-Amazon • Puppy pads (great backup in a pinch):https://tinyurl.com/PuppyPad-Walmart⸻🔌 Backup power = peace of mindIf you rely on a feeding pump or oxygen, power isn’t optional. • Portable power station (must have grounded 3-prong outlets):https://tinyurl.com/Jackery-WalMarthttps://tinyurl.com/Sinkeu-Amazon 🛏️ Safe sleep anywhereCreating a safe setup on the go matters more than comfort aesthetics. • Portable toddler bed rail (foldable):https://tinyurl.com/FoldableRail-Amazonhttps://tinyurl.com/FoldableRail-Walmart • beanbag positioning pillowshttps://a.co/d/048dBA7LAnd even memory foam filler to make your own configurations: https://a.co/d/0iCn3TlM⸻🧊 Feeding on the go*Always bring the whole replacement kit. If you don't have one, bring a safe sterile item (catheter or alike) to keep stoma open until you can get to a pediatric ER with a replacement for you.Keeping feeds safe + accessible is everything. • Insulated backpack for tube feeds (cute, non-medical):https://a.co/d/01GUbN3o⸻✈️ Oxygen travel essentialsFlying or long travel days require the right equipment. • TSA-approved portable oxygen concentrator (example):https://www.inogen.com/products/inogen-one-g4/⸻🚗 Car travel safetySome kids cannot sit upright safely—this is critical. • Car bed (for infants/children who must lay flat in the car):https://tinyurl.com/Car-Bed-Reference**Your hospital’s Physical Therapy department should be able to provide you with one covered by insurance with a prescription.  If you do not like the models they offer (can be large), here is another option you may look into. ☝️ Final thought:You don’t need a perfect setup—you need a prepared one.Start with safety, add comfort, and build your system over time. This is for your sanity and freedom. Safe travels!!

In Episode 3, I sit down with my friend Lindsey Waibl to talk about her journey as a medical mama to her 11-year-old daughter, Dylan, who has Trisomy 18. Lindsey shares how not knowing Dylan’s diagnosis before birth unexpectedly worked in their favor, how a series of life-changing procedures helped shape Dylan’s path, and how she gradually found her voice as Dylan’s fiercest advocate. We also talk about the power of community and why no diagnosis is ever one-size-fits-all. If you’re in the thick of the unknown, this episode is a reminder that you do not have to do this alone.

After Ellie’s diagnosis, life felt like it split into a “before” and “after.”In this episode of A Little Extra Momming, Mandi shares the deeper story of those early days: the phone call, the fear, the grief, the support that carried them, and the slow beginning of finding hope again.If you’ve ever wondered how to keep going after devastating news, this episode is for you. You are not alone—and your story is not over.Follow us on Instagram: @ALittleExtraMommingSupport our mission: https://gofund.me/17534cfeb

Episode 1: After the DiagnosisIf your child has just received a serious medical diagnosis, it can feel like the ground has disappeared beneath you. Fear, grief, and uncertainty can be overwhelming — but you are not alone.In this episode of A Little Extra Momming, we talk about the first moments after a life-changing diagnosis, the mix of hope and fear that comes with it, and the reassurance that your family’s story isn’t over. One step at a time, you can start finding your way forward.🎙 A Little Extra Momming — because your child is not forgotten, your family is not broken, and support starts here.Links & Resources:• Follow along on Instagram: @aLittleExtraMoming• Support our mission: https://gofund.me/35e43ce70