#FeedingTube

MOST RECENT

Just because he’s pretty

I’m back from a short social media break. The last few days have been extra painful due to my Gastroparesis symptoms, and trying to eat by mouth didn’t help. Although I know that my digestive system can’t handle solid or puréed foods anymore, the desire to experience once-familiar tastes and textures persists. It pops up and nags at me, despite nausea and abdominal pain. I think it’s tied to social situations, memories, holidays, comfort, and basic human survival instinct. Having a feeding tube doesn’t make that instinct go away, nor does the absence of physical hunger. Most of the time, eating doesn’t cross my mind and I channel my thoughts and energy in other directions. Other times, nausea knocks me flat and all I can do is close my eyes and hope for a wave of sleep to roll over me. I’m truly thankful for the consistent nutrition that @katefarms formula provides through my j-tube. This isn’t a wildly unique challenge, and it highlights the struggle between knowing what’s best for my body and longing for some “normalcy” and simplicity. Life with a feeding tube can be very isolating, especially when it’s the primary source of nutrition. If you’re also struggling to accept a future of enteral feedings, you’re not alone. I’m here to chat and send gentle hugs. As for anyone else with a Tubie friend or family member; please make yourself available to listen. Talking to a trusted love one—someone who won’t judge me or give unsolicited medical advice—is the most constructive way that I process my frustrations. In my experience, difficult feelings only fester when kept hidden. For me, misplaced guilt and shame are the real kickers. As if I’m supposed to have superhuman strength and “messing up” with food is a personal failure. Well, it’s not. My body is messed up and my gastrointestinal system is failing; the person inside needs to give herself a break (and stop talking in third person). You deserve a break, I deserve a break, and it’s okay to be a work in progress. That’s where I am. // Wearing @ritueldefille “Fortune Teller” Forbidden Lipstick [Image Description: Maria looks into the camera with dark plum lips and tousled hair. Her head and shoulders are pictured.]

You will never completely know what this moment means to my mommy heart❤️ or how much blood,sweat and tears (ooohhh so many tears) have brought us to this moment.....this child😍has his mommies heart,soul and being💫🌟I will NEVER apologize for loving you fiercely, holding you endlessly and caressing your tiny little Frankenstein head😂😬 You are ALIVE!!!! And Im so absolutely thankful for it💜. Silly billy!!!
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#myheart #warriorchild #prsbaby #feedingtube #feedingtubeawareness #pierrerobinsequence #craniosynostosis #littlebjird #willemsadventure #littleboy #rarediseasesa #careforare #awareness #finallyeating #almostatubiegrad #notube

⭐ BACK TO SCHOOL SALE ⭐

We all know how important it is to have 'the right bag' at school! For this reason we're offering a 15% discount on our Bespoke Service until the end of August!
Send us a bag you love and we will adapt it into a unique tube-feeding bag. You can find out what the bag requirements are on our website by copying and pasting this link... https://tubieego.com/pages/bespoke-service
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#tubefeeding #tubie #tubielife #tubiebaby #ngtube #gtube #feedingtube #meettheSENparent #enteralnutrition #tubefed #inclusivefashion

I had a *slightly* disappointing day today and really need to do something about this whole GI thing.

I'm just angry and frustrated about the way things are going. But tomorrow is a new day and hopefully it will be better.
Fingers crossed right?

#ehlersdanlossyndrome #gastroparesis #feedingtube #wheelchair #wheelchairmodel

YOU ARE NOT UNRELIABLE. Hear us?! 📷: @connorrrmorris #chronicloveclub

Almost done. I got 4 broken hours of sleep and woke up at 6 am to do round two of my prep. I was unable to keep it down, and spent the morning getting sick. I feel horrid and will probably need another tube change. This is exhausting. Hopefully tomorrow will be better. #pain #exhausted #bornthisway #invisibleillness #progress #healing #chronicillness #medicine #dysautonomia #gastroparesis #HSD #hypermobile #california #queer #girlswhosmokeweed #weedismedicine #legalize #pot #ganja #ganjagirl #mmj #marijuana #medicalmarijuana #stoner #high #cannabis #cannabiscommunity #feedingtube #tubie #livingroom

When you thought you've had it all, I got tested again. Right now my body is weak but my mind stays strong. "Chin up baby girl, someday everything will make perfect sense." So, for now, laugh at the confusion and smile through the tears. It takes time to heal, but it also takes courage. And that's something I will never ever lose. I've decided to open up more about my way through recovery. To show you the ups and the downs. Why? To give you more insight about living with an invicible illness. I also want to reach people like me, people who are also struggling. I hope I can help and inspire by sharing my stories. It might sound strange, but despite the shittie situation I'm in, I feel stronger than ever! Never forget your healthy side. Your illness doesn't define you in any way, although it looks like that sometimes. When you fall down, find back your power and use that as your weapon. And remember; it's okay to fall, don't feel bad about it. Love yourself with everything you are❤️
#mentalhealth #hospital #admitted #recovery #metalhealthawareness #ptsd #ptsdrecovery #staystrong #feedingtube #emotions #depression #exhaust #inspire

As McKenzie has gotten older, she’s become more aware of things, especially her feeding tube. She’s embarrassed and is shy about it because I don’t have one and neither do her friends in class. It wasn’t until she went searching for a button on mommy last night that I broke down crying after she went to bed. Well...we talked about her button and how it’s nothing to be ashamed of. You are beautiful, strong, smart and such a sweet little girl that mommy now has a button like you. She was so happy! Started dancing around singing “mommy has a button” 😁. Even told her friends at daycare that “mommy has a button”.
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Side note: thank the Lord she doesn’t know what tape is yet because I couldn’t find any glue 🤣🤣. I’m picking some glue up today so she doesn’t feel alone on this journey.



#ButGod #InItTogether #MyWhy #preemie #micropreemie #feedingtube #mom #momlife #toddler #toddlerlife #nicugrad #love

There are many reasons why tube-feeding may be needed and we thought we could focus on a few to raise awareness and share experiences.
If you are affected by dysphagia (difficulty swallowing) then tell us about it! Let's tell stories and share resources. What you share may help the next person going through a diagnosis...... Other weeks we'll focus on areas such as heart conditions, lung conditions, failure to thrive, food aversion, etc so keep an eye out for the condition that affects you.
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#dysphagia #dysphagiaawareness #tubefeeding #tubie #tubielife #tubiebaby #ngtube #gtube #feedingtube #enteralnutrition

@rubensbarn #max is recovering well from his surgery last night. Fingers crossed he’s up for visitors today as I know a certain someone is excited to see him!!
Looks happy and cosy in his @maxomorra_official and his @closeparent nappy. .
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#feedingtube #feedingtubeawarenessweek #toyslikeme #toylikeme #dolllikeme #maxomorra #closeparent #clothnappy #jejunostomytube #gastrostomytube @heveababy #hevea #lovebabipur

Beware abdominal pain!
Especially after the placement of a feeding tube or after the initiation of feeding. Air in the belly is no bueno! Air visible on the right is normal (gastric air bubble). Management- exploratory laparoscopy vs laparotomy! #surgeon #surgery #surgeonlife #feedingtube #feedingtubeawareness #doctor #medicine #medstudent #physicianassistant #nurse #freeflap #omfs #omfsurgery #headandnecksurgery #lekarstwo

The moment when you walk in the bedroom & for no reason turn on the light to see your child fast asleep in a soaking wet crib because she somehow disconnected her feeding tube. Out of bed, new pj’s and new bedding while this peanut becomes more and more amused with the whole ordeal. Thank you Lord, that I wasn’t asleep yet, and decided to turn on the light to check on her even though I knew she was asleep. #feedingtube #specialneeds #gtubebaby #feedingtubeawareness #gtubeproblems #feedingtubeproblems #ellajeanstribe #cdls #hearingloss #limbdifference #luckyfinproject #giissues #corneliadelangesyndrome #cyberfamily #cdlswarrior #shethinksshesfunny #ilovethisgirl #eclampsiasurvivor #annularpancreas #thesweetlife

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