Say Yes Anyway: Traveling with a Medically Complex, Disabled Child

Growing Our Family After Trisomy 18

What if the bravest decisions aren’t the ones made without fear… but the ones made while trembling? In this deeply personal episode, A Little Extra Momming - a podcast from the Extra Care Collective - dives into the raw and complicated story behind the decision to have baby #3 while raising a medically complex child. In the middle of PICU admissions, life supports, sleepless nights, and constant uncertainty, Mandi and her husband were forced to wrestle with impossible questions: Do we keep growing our family when life already feels this fragile? Do we protect ourselves from more pain… or stay open to more love? This episode digs into the emotional reality of medical parenting, the hidden weight carried by siblings of disabled children, and the terrifying truth that certainty was never promised to any of us in the first place. It’s about motherhood inside chaos. Hope coexisting with grief. Choosing life while fully aware of how badly life can hurt. And somehow, it’s also about joy. Wild sisters. Hospital hallways. Fear. Laughter. Survival. Tantrums. And the kind of love that changes the architecture of an entire family. If you’ve ever wondered how people keep saying “yes” after heartbreak — this episode is for you.

Don’t Starve Hope. Buy a Balloon Arch.

We weren’t thinking in years. We were thinking in days. In stability. In “nothing went wrong today.” And then, in a post-op appointment right around Christmas, a surgeon said something that quietly cracked everything open: “Make sure you bring her by the clinic around her first birthday. We love to celebrate those.” Just like that—someone spoke a future into the room we hadn’t allowed ourselves to touch, and were still terrified to hold. This episode is about what happens when fragile hope stops being abstract… and starts looking like a milestone you might actually reach. It’s about what it feels like to plan a first birthday for a child you were never sure would get one. About almost sending invitations, and then finally doing it. About RSVPs that turn fear into something heavier: belief. And it’s about what I almost never do. I outsourced the balloon arch. That might sound small—but it wasn’t. I don't usually do "extra" like that, but I did. Because this wasn’t extra. This was everything on the line. We went all-in on a birthday we weren’t sure we were allowed to expect. And somehow… we got there. A room full of people. A pink wheelchair that arrived just in time. A first birthday that became more real than fear. And a reminder I keep coming back to: Don’t starve hope. Buy a balloon arch.

FPIES, Feeding Tubes & Medical Curveballs — with Lindsey White

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 applying * A third child with unexpected, more complex GI issues * Feeding tubes & feeding challenges * Hospital stays + ongoing care logistics * Finding (and refinding) the right doctors * Managing family schedules with multiple medical needs * Living with constant unknowns FPIES, pediatric GI disorders, feeding tubes, medically complex children, rare disease parenting, chronic illness parenting, hospital life, care coordination, special needs parenting, medical mom life This 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.

That Hospital Life: Building a Home ICU

Show Notes In 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 failure * The reality of repeated hospital stays and how your role changes over time * Learning when to manage at home vs. when to go in * How advocacy is built through experience, not personality * Why you are the most consistent expert on your child * And how it’s still possible to build a life—your life—inside all of this At 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 escalation These 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 [Extracarecollective.com] That Hospital Life - What You Bring With You [https://open.substack.com/pub/extracarecollective/p/that-hospital-life?r=7y9v1l&utm_campaign=post&utm_medium=web&showWelcomeOnShare=true] That Hospital Life (cont.) - What We Take Back With Us [https://open.substack.com/pub/extracarecollective/p/that-hospital-life-cont?r=7y9v1l&utm_campaign=post&utm_medium=web&showWelcomeOnShare=true] Our Sick-Day Action Plan (for respiratory viruses) [https://open.substack.com/pub/extracarecollective/p/sick-day-action-plan?r=7y9v1l&utm_campaign=post&utm_medium=web&showWelcomeOnShare=true]

Say Yes Anyway: Traveling with a Medically Complex, Disabled Child

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 lifesavers When things get messy (and they will), these are non-negotiables: • Disposable chuck pads (underpads): https://tinyurl.com/ChuckPad-Amazon [https://tinyurl.com/ChuckPad-Amazon] • Puppy pads (great backup in a pinch): https://tinyurl.com/PuppyPad-Walmart [https://tinyurl.com/PuppyPad-Walmart] ⸻ 🔌 Backup power = peace of mind If 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-WalMart [https://tinyurl.com/Jackery-WalMart] https://tinyurl.com/Sinkeu-Amazon [https://tinyurl.com/Sinkeu-Amazon]  🛏️ Safe sleep anywhere Creating a safe setup on the go matters more than comfort aesthetics. • Portable toddler bed rail (foldable): https://tinyurl.com/FoldableRail-Amazon [https://tinyurl.com/FoldableRail-Amazon] https://tinyurl.com/FoldableRail-Walmart [https://tinyurl.com/FoldableRail-Walmart] • beanbag positioning pillows https://a.co/d/048dBA7L [https://a.co/d/048dBA7L] And even memory foam filler to make your own configurations:  https://a.co/d/0iCn3TlM [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 [https://a.co/d/01GUbN3o] ⸻ ✈️ Oxygen travel essentials Flying or long travel days require the right equipment. • TSA-approved portable oxygen concentrator (example): https://www.inogen.com/products/inogen-one-g4/ [https://www.inogen.com/products/inogen-one-g4/] ⸻ 🚗 Car travel safety Some 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 [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!!