We reached out to you, our StomaStoma community, to share how you survived your little fighter's hospital stay. And, of course, we got some amazing answers and insight which you can check out below. Make sure to keep you eye on our social media posts @hi_stomastoma to get more insight and resources or even add your survival tips.
“Being there when the doctors make their rounds. To get their input and give them yours. No one is a better caregiver than us parents because we know them the best.” @ms_niss80
“Laptop, cellphone charger, elf slippers, bodypillow, sleep mask.” @joyshortepires
“Good snacks, journal to express yourself, coffee, time to make friends with the nurses-this will benefit you in many ways, and comfy clothes/blanket.”@ecnewton
“Coffee, slippers, cell phone charger, pen & paper, and coffee.” @alionsmom
“Notebook to record info from rounds, trail mix, water bottle and coffee thermos.” @thefightingirishmartins
“Pillow & blanket from home, slippers, water bottle and a good book!” @little.brave
“Book of crossword puzzles, extra charging cable, chapstick, blanket, socks, headphones(sleepless nights) snacks, make sure your phone has a good recording app to record for when rounds are done, that's what I did and I could go back and listen.” @giannamaries_mommy
“Electronic essentials, Bible/journal, pillow/blanket/slippers, coffee, and the little babes favorites to comfort them♥.” @kendraaalyn
“Currently in the middle of a hospital right now and I think the most helpful thing for me this round is something I DID NOT bring... guilt. Never stop reminding yourself that it’s not your fault that your little warrior had a setback. It’s all a part of the process and you are doing a wonderful job in caring for her or him ❤.” @dwillofthe9
“A long cell phone charger is a must. Slippers with a good sole (crocs work wonders). Change for the vending machines. No one carries change anymore, and sometimes the vending machine is as far as you’re willing to go. Earplugs and Eye mask. Your one pillow. You won’t regret that one.” @84roses
“Slippers, more clothes for yourself than you'll think you need (so many tubes and ivs disconnected in my lap), long charge cord, books, a nice pillow, dry shampoo, a sound machine, and lots of different beverages.” @chelsleroy
“Headphones: for those times when they may be also asleep and you just can't so you need to send out to music or Netflix.” @emiliana_emily_emma
“Notebook & Pen, charging cord(s), whatever makes going to bed easy for your child & you, good pillow & blanket.” @dirt_rd_dreamer
“Learn the perks! What’s free in the parents room, pet/art/music alternative healing therapies.” @hockeylucy4
- Break big things into smaller chunks — weeks to days, days to hours, hours to minutes.
- Practice gratitude — first thing in the morning and the last thing at night.
- Read good / relevant books - like “Fight Back with Joy”
- Stay in the present… but reflect on how far you’ve come
- Find Balance - i.e. taking breaks, eating lots of dark chocolate and zoning out on Netflix. Guilt. Free. @hi_stomastoma
“COFFEE. All the coffee!!! We got so many gift cards to Starbucks during our 6 months, and it felt like the biggest blessing ❤.” @jennaliesch
“Find a shower! I’ve showered in the residents’ shower, the enormous gurney shower, anywhere I can find to feel human again; it’s worth it! • Find the sun! Inside or outside, just find it and soak in that vitamin D and warmth • Find your voice and be present during rounds. You are your child’s advocate. • Find a non-hospital grade pillow and/or blanket. Little comforts are e v e r y t h i n g. • Find a friend. Whether it’s your spouse or a friend, find someone you can release to.” @thestinette
“Candy, coffee, comfy clothes, Bluetooth speaker and making friends with other parents/staff on your floor ❤.” @mywarriorwilliam
“Learning not to google everything, it was hard to stop. I became friends with everyone in the hospital. I would eat lunch with the cleaning staff or front desk staff. I got to know all our nurses on a personal level. I helped out at the Ronald McDonald house in the hospital. I found documenting our journey thru photography was easier then writing in a journal for me. I have 3000 photos of the NICU alone. A good blanket and pillow oh and dont forget deodorant:) Just remember one step forward sometimes is 100 steps backwards but never lose hope. Each day is another day you survived.” @micropreemiemom