#gtubelife

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This little man likes to taste ALL the SWEET things. #fightingformygeneral #gtubelife #curesma
6 months post open heart surgery! Can you believe it?! As much as we wanted to avoid being at the hospital today, we ended up at the ER with big brother, Kane. We were in luck, and were assigned Calla's favorite medic. He swooped in as soon as he saw her, and had to get a Calla hug... and her face just lit up. This guy has been there for her so many times, at the ER and as a medic with #sunstar . When no one else could get an IV line in her at our local ER, he did. Thank you, Caleb, for taking such good care of our kids! #misscallajane #CallasCrimsonArmy #10monthsold #heartbaby #heartwarrior #chd #asd #vsd #chdwarrior #chdawareness #chdprincess #6monthspostop #openheartsurgery #ohs #gtubebaby #gtubelife #gtubeawareness #gtube #newlife #zipperscarclub #happybaby #smallbutmighty #andthoughshebebutlittlesheisfierce #hospitalfamily #babysfirstcrush #medicsrock #hesnowafirefighter #shessohappy
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Some pink drink for me and some for him. 💕 Some of you may think...”You’re giving that to him?? Omg, what are you thinking?” #sharingwhatworksforus 👍🏻 So, why do I give a few ounces of my beloved “pink drink” to my tiny sweetness? 🤷🏼‍♀️ 3️⃣ words....ALPHA. LIPOIC. ACID Once we received Ethan’s dx of EDS & Dysautonomia I was on the hunt for good ways to combat his symptoms. To help his body function the best it can WITHOUT using meds. I had already started him on the xfactor kids which has helped him with constipation and regular poops. #hooray 💩 ALL WHILE, giving his body key vitamins/minerals without sugar. #thegutfeedsonsugar #toomanyantibiotics #malabsorption Unfortunately, fatigue is a VERY real part of his life. Napping for hours and struggling after therapy sessions. Pain has also been an ongoing issue. I HAD to find an alternative. #mamasjob ALA has many benefits. A few being... 🌱it plays a key role in energy production. #fatiguehelp 🌱It also functions as an antioxidant, protecting the cells from damage and helping restore levels of other antioxidants, like vitamins C and E. These 2 vitamins are key for E’s health because they help prevent bruising and promote collagen. #edsprobs 🌱Alpha-lipoic acid also reduces #inflammation which helps with pain in his joints and muscles. On top of the ALA, this Slim contains XOS which is a prebiotic that FEEDS the probiotics in his multivitamin. Key for his immune health and sleep. #twothumbsup SO, now you know. 🗣 You know Slim is more than what you might have thought. You know it’s benefiting my child and the symptoms he struggles with daily. This gem is WAY more than losing some pounds. It’s, LITERALLY, helping my child’s body function as appropriately as possible. #BOOM #ehlersdanlossyndrome #pain #specialneedsmom #dysautonomia #alternativemethods #chronicpain #inflammation #life #lifestyle #success #sweetboy #photooftheday #guthealth #vitamins #minerals #energy #fatigue #gtube #gtubelife #malabsorption
Could not have said it better Mr Kelly! Your speech and life story was inspirational. This is exactly how C.C.Moo feels, this is how I try to live my life and run our company! One smile, one positive comment, one selfless gesture can truly make a difference! ccmooclothing.com info@ccmooclothing.com @annaolson0403 #rockyourq #Digeorgesyndrome #lifewithdigeorgesyndrome #adaptiveclothing #gtubeclothing #gtubeclothes #gtubelife #gtubekids #gtubebaby
People ask me alllll the time about jack-jack’s #gtube and what it’s like to change it... well we changed it today. It’s nothing that cool at all, although you do NOT want to change when the babe has a full tummy bc that is gross and very leaky! 🤢 Jack has some granulation tissue around his right now so it’s a little redder than usual, but that’s normal too. I still wish we would have gotten jack’s gtube much sooner bc it’s so much less stressful than the NG. Feel free to DM me or comment if you’re in the same boat I was in and not sure which way to lean! 💗 #gtubelife #iloveatubie #tubielife #gtubechange #granulationtissue #medicallycomplex #tubiemom #pyridoxinedependentepilepsy #specialneedsmom #tripletherapy #gtubedependentformeds #advocatelikeamother #dragonmom
As of today Liam is OFFICIALLY COMPLETELY WEANED FROM VALIUM WOOP WOOP! 🙌🏻 he’s been suffering mild withdrawal and throwing up all day today 😣 we’ve been giving him pedialyte to make sure he’s getting those fluids. I’m very surprised that he hasn’t been fussy. Overall, even with him vomiting, he’s happy! I’m so incredibly happy to have another sedative gone. We are coming for you next, clonodine! 👊🏼 Liam’s been so cuddly and loving lately. Especially towards his sisters. Something about those girls just makes him feel whole. All in all, he’s still doing great. ❤️ #LiamStrong #hypoplasticleftheartsyndrome #hlhswarrior #hlhssurvivor #hlhsawareness #chdwarrior #chdsurvivor #chdawareness #halfaheart #heartwarrior #heartmom #1in100 #zipperclub #gtube #gtubebaby #gtubelife #gtubeawareness #gtubefed
ccmooclothing.com info@ccmooclothing.com Omgoodness how adorable is she! We feel such privilege to be able to assist with making life just a bit easier for fellow tubie families. "Just wanted to send you some pictures of our Audrey in your clothes and thank you from the bottom of our hearts for all the do for our family. It makes our lives so much easier and we are grateful for the hard work and dedication you put into them! ❤️ The Lemek Family @suz_lemk #adaptiveclothing #adaptiveclothes #gtubeclothing #gtubeclothes #gtubelife #gtubekids #gtubebaby
A 500ml Flocare Insulated Milk Bag being sent out to a very luck little man today. Always dream big! #insulatedmilkbag #keepingitcool #tubielife #tubieaccesories #stylishandfunctionalfeeding #tubefed #gtubelife #gtubeawareness #tubiefunau
HAPPY BIRTHDAY BEANS! It is with a grateful heart that we get to celebrate Beans 3rd birthday. 3 years ago we were given news of his Chromosome deletion that rocked our world. So many miracles have happened & hurdles have been jumped. (some wonderfully some not so much.) You are so loved and cherished. As we celebrate Beans today we are also taking a moment to send a special Birthday to Hattie Joy Wright in heaven. Hattie was part of our C.C. Moo family. We lost Hattie but heaven gained an angel. She also would have celebrated her 3rd Birthday today. @jaleenjoy The sleeveless onesie makes a great swimsuit! We were able to just unzip it for feeds rather than take off and put back on the wet suit. @annaolson0403 @22qfamilyfoundation #rockyourq #Digeorgesyndrome #lifewithdigeorgesyndrome #adaptiveclothing #gtubeclothing #gtubeclothes #gtubelife #gtubekids #gtubebaby
Care Bears Regular Button Pads! All the powers. #buttonpads #tubefeeding #tubiebling #fedisbest #gtubepads #gtubelife #tubiefunau
When your soon to be 5 yr old wakes up quiet and you hear the feeding pump alarm go off to find her in the middle of her room covered in Triple Paste and her pump pulled apart...... 🤦🏻‍♀️☕️🤦🏻‍♀️😂 #gtubelife #triplepaste #cantgetmadatthatface #ohgigi
I have been having a hard time emotionally this week with my baby growing up, I just love this age and the funny things he does and cute faces he makes, that I just wish he could stay like this forever. Well Thursday we happened to be visiting the GI doctor, and my Timehop reminded me that he had been at the GI exactly a year ago with a picture I took then. So I decided to do a then and Now picture and I was not prepared for the comparison. What happened to my chubby peanut?!?! A year ago he wasn’t even able to sit up without pillow support (an Mom right there to catch him when he toppled over), he wasn’t crawling and would only walk in his walker. He hadn’t had any food orally in 6 months and I was still in my learning process. Here we are a year later and Uriah, walks, runs, crawls, is always dancing, trying to sit at the dining room table instead of his high chair (keep trying mister, you need a seat buckle 😃). He eats almost anything you put in front of him (except sweet potatoes) and is drinking nectar thickened liquids. He has gotten taller and gained a little bit more weight, heck even his feet grew a teeny tiny bit lol! Oh and for the most part he sleeps thru the night which is huge! This momma can’t believe what a difference a year makes. Uriah has come so far in a year and yes, there is still a lot of things that need to be figured out or worked on but I know it’s only a matter of time. He is such an amazing little boy with such a fun personality and I can’t wait to see what the future holds for him but I just wish time would slow down!! #sweetbraveuriah #gtubelife #genedeletion #geneticdeletion #tubiebaby #tubie
Easy way to wash all those syringes, bottles, etc. Bring yourself a pan, and the drainer I had was collapsible. After washing them I rinsed with bottled water. #camping #lifehack #gtubehack #gtubelife
*SOUND ON* This is how I try to study before my trolls go to bed. They won’t let me leave so I am forced to stay in my room until they fall asleep. Only until then am I able to crack down on my school work. I can’t wait until they are ok with sleeping in their own beds again. That routine was out the window after my daughter came home from the hospital back in March. Until that day comes again I’ll just enjoy listening to the hilarious conversations I hear every night. #studysesh #studydistractions #twinconversations #twins #eatbugs #imhungry #liar #yourgtubefed #isometimesfightyoutoeat #gtubelife #threenagers
In honor of Mr. Beans 3rd birthday enjoy a 15% discount July 13th-15th! Use code: HAPPY3RD #gtubeclothes #gtubelife #gtubekids #gtubebaby #adaptiveclothing #Digeorgesyndrome #lifewithdigeorgesyndrome #22q #rockyourq @22qfamilyfoundation @annaolson0403
Today was a bittersweet day for me and Kylie-Bug as we spent our final day with the amazing ladies at the Early Intervention IU classroom 😢. Throughout the past year, these ladies have gone above and beyond to make sure that Kylie was given every opportunity to be successful in her learning and development in order to be ready for Kindergarten this year. And for that, we will forever be grateful. Also, while I am thrilled that we will be able to remain with the same PT, Mrs. Jess, I am so very sad that we are also saying goodbye to Kylie’s OT, Mrs. Jenny 💔. There will never be another that can replace the bond and love we have for her. 😢 Now, we will make our way onto the next step, Kindergarten!!!!! #trachbaby #tracheostomy #trachinit #trachinitonedayatatime #gtube #gtubebaby #gtubelife #tubielife #tubiebaby #lovethemforever
While I’m super thankful for medical supplies, I am at a loss for storage. Our current house doesn’t have much room for it all to be put away. Send me all of your clever medical supply storage ideas! I have the handy over the door shoe organizer right now but it doesn’t hold everything. 😅 #gtubelife #gtubeawareness #gtube #gtubekid
This sweet boy wore his backpack during a feeding for the first time today! #makingmoves #gtube #tubie #gtubeawareness #gtubelife
Very girly tube belt on its way to Ireland! 🍀💌♥️❤️💗 #PiQuuHandMade #GTubeBelt #gtubelife #gtube #PEG #GJTube #Mickey #BellyButton #Gastrostomy #Gastrostomia #feedingtubeawareness
✅Today we got our labels done which means we are in business ! Feeling blessed !!!!! #godisgood #believe #entrepreneur #happy #longtimecoming #sogreatful #babygtube #gtubelove #gtubelife #gtube #babies #passion #logo
GTube and Port *Superman Set ....... I know everyone loves super heroes ! How about this cute Superman Tubbie ? 😍 Ready to order from our website !!! #tubbies #babytubbies #gtubebaby #gtube #gtubelife #cute #superheroes #love #superman #supercute
Baby GTube and Port *BUMBLE BEE Set .........🐝🐝🐝🐝🐝 #gtubebaby #gtubelife #gtubeawareness #gtube #gtubeandport #gtubeaccessories #gtubefed #gtubelove #bumblebee #yellow #summer
👋🏻Welcome to our Instagram ! Our First Sale ! So excited to start this journey and make babies all around the world happy ! 👶🏻👶🏼👶🏽👶🏾👶🏿 🌍 #babies #gtubebaby #tubies #gtubelife #gtubeawareness #entrepreneur #businesswoman #businessowner #usps #gtubecovers
Leo’s teachers & therapists swear he will use a fork or spoon sometimes at his day health program, but we have yet to witness this miracle 🦁❤️😂 #leothelionheart #chdwarrior #gtube #mickeytube #gtubelife
How beautiful and courageous this little guy is. Every single day he amazes us. He is a wild, free, and loving spirit. He has embraced his tube so well, and never lets it slow him down. We love you so much Leif. #gtubelife #gtube #tubie #gtubeawareness
I honestly wouldn’t have been able to get by some days if it weren’t for Liam’s PICU nurses. They have seen me at my worst. They have wiped the tears from my eyes. They have saw the terror and fear in my eyes. They have seen the anger. They hugged me through it all and was sympathetic. Liam became a part of their lives. They cared for him like I do. They’ve watched him succeed. They gave me hope. I’m forever grateful for the nurses who cared for Liam. #PICUawareness #Pediatricnurses #LiamStrong #hypoplasticleftheartsyndrome #hlhs #hlhsawareness #chdwarrior #chdsurvivor #chdawareness #gtubebaby #gtubelife #gtubeawareness #1in100 #zipperclub #heartmom #heartwarrior #heartkiddo
Tubie baby! Here's a fun picture of what Isabellas feeding tube looks like. It's called a MiniOne Mickey button. We use an extension to connect to it to feed her. Swipe to see me getting ready to give meds/vitamins while watching Tarzan! We push meds through syringes in her extension port. #gtube #feedingtube #gtubelife #wedodisney #momlife #specialneedsmom #medicallyfragile #cuteasabutton #gtubeawareness #feedingtube #micropreemie #oralaversion #honestcompany #targetstyle #hemangioma #strawberrymark #vascularbirthmark #happybaby #hellpsyndrome
She always loves having lunch with her big brother 💚 #gtubelife #ournormal #seriouslylovesherbigbrother
Hard to believe it’s already been a year since Brennan’s first surgery. The G-Tube and port-a-cath were game changers. Made our lives so much easier! We have had a lot of ups and downs over the last year but we have been truly blessed to watch this strong little man grow into his personality and thrive after his surgeries! #iloveaprunebellybaby #prunebellysyndrome #kidneydisease #iloveatubie #tubiebaby #gtubelife #oneyearagotoday #throwback #tbt
Recovery! He always does well with his procedures 😍😍 #procedure #bigboy #expreemie #hospitalgown #pedialyte #iv #sweetboy #26weekers #gtube #gtubelife
Recovery! He always does well with his procedures 😍😍 #procedure #bigboy #expreemie #hospitalgown #pedialyte #iv #sweetboy #26weekers #gtube #gtubelife
Recovery! He always does well with his procedures 😍😍 #procedure #bigboy #expreemie #hospitalgown #pedialyte #iv #sweetboy #26weekers #gtube #gtubelife
Summer holidays in one week only! Can't wait! 🏞️🏖️🏔️🏝️🌞 #PiQuuHandMade #Reusable #gtubepads #FeedingTube #FeedingTubePads #gtubelife #GTubeBaby #GTubeCovers #PEG #Mickey #BellyButton
Put on your Sunday clothes, there’s lots of world out there! 🎶
I’m so happy that I could probably cry 😭 Liam is chewing on a beef stick and he is enjoying it! No choking, no gagging, no throwing up. And he knows how to properly swallow! So I think it’s time to set up a swallow study that way we can start trying table foods without him possibly aspirating. He has been doing so good, you guys. He is gettin stronger each day. He is using upper body strength more now. He knows when he does something good! He is just so full of love. He is the happiest child I have ever met in my life. I’m so proud of this milestone. We are a step closer to eating by mouth! 🥘 everyone please praise this boy! This is such a good day. #hypoplasticleftheartsyndrome #hlhs #chd #chdwarrior #chdsurvivor #chdawareness #gtubebaby #gtubelife #gtubeawareness #heartwarrior #hearthero #heartmom #heartkid #1in100 #zipperclub
The cutest belly I’ve ever seen. ❤️ #gtube #tubie #gtubelife
This girl. That last picture though 😂. Probably the only picture I have of her being unhappy.
The smile you have when you’ve grabbed the water syringe out of mommy’s hands so many times that she gives up and then you crawl away quickly to make sure she doesn’t steal it back from you 🙄 #tubiebaby #gtubelife #gtubeawareness #shesgrowinguptoofast #mylittlebiggirl #nostoppingher #myminime #twinning #blessed #messyhairdontcare #trachlife #trachlifeofadiva #momlife #weekend #love #smile #happy #momlifeisthebestlife #cute #mom #dailyparenting #toddlers #daughter #myworld #medicalmama
Tiffs Thoughts // When you dream of bringing your baby home and sitting up late with them feeding, nurturing, and cuddling, you don't imagine an IV pole next to your pillow. I dreamed of breastfeeding our little lady (why else have I carried these boobies around?). Never did I think I'd bring home a sweet baby with a feeding tube. It's strange how normal this life has become. We don't really know much different. I took this picture today (and made my bed) to remind myself that God always has a better plan than me. He knew what we needed when and has ordained us to be Isabellas parents. I'll admit most the time I'm not 100% sure what I'm doing but I lean into God, think back to the wisdom I learned in the NICU, ask professionals and/or sometimes google it. 😂If you swipe you'll see Bella's sweet bassinet in our room. I staged this picture with her blanket and bunny. (She sleeps without them in there)...Our daughter is HOME. Thank you for surrounding us with prayers and support. I'm still so amazed at your generosity and outpouring of love. Just yesterday my momma handed me a card from a friend/family member with cash in it. 💗God provides and knows what we need. Thank you for teaching me more about Him through you. And thank you Isabella for teaching mommy how to love well. #learningtolove #preemie #gtube #feedingtube #tubie #gtubebaby #gtubelife #nicumom #nicugrad
A little bit about myself... I am a 34 yr old mother of b/g twins. My daughter has Turner Syndrome and is currently tube fed. My kids are the reason for me going into nursing and they are my life. I have a year left of prerequisites and I can’t wait to apply to nursing school! I will be officially divorced soon, and to say I have a lot of anxiety about nursing school is an understatement. It’s one of those situations where I have no choice but to thrive and kick ass for me and my kids. My daughters extensive medical background has given me an opportunity to fall in love with the medical field and who knows where I’ll end up but I can’t wait to see. I created this account so I can look back at my life and never forget the struggle and sacrifice. I am totally open to nursing school tips and if I am able to return the favor someday then that brings me happiness. Enjoy! #nursingschool #nursing #futurenurse #twinmom #momlife #gtube #turnersyndrome #soontobedivorced #anxiety #movingforward #wouldntchangeathing #iloveachallenge #gtubelife #tattoomom #twins #threenagers #theyplaymeeveryday #venting #neverforgetyourstruggle #ifyoucantfindamotivatorthenmotivateyourdamnself #iftheresawilltheresaway #studytipswelcome
Greens from the garden, kale, spinach and parsley. And it’s all going straight into Lucy’s tummy, literally. #gtubelife #gtubekid #gtubefeeding #organicgardening #growyourowngreens #foodismedicine
Not a new photo, but a cute one. Adorable outfit courtesy of Aunt Betho. #gtubelife #tubiemodel #downsyndrome #heartbaby
I have so many pictures of this boy sleeping, they have been my favorite pictures to take of him since he was born. He always looks and seems so peaceful. Sleeping all around is still a bit of a up and down rollercoaster for us but I am just embracing the tough nights and reminding myself that he is little, at nap times when he wakes up after 40 minutes (which has been his normal the past 2 weeks+) I remind myself I was able to pee alone and drink my coffee. It’s the little things! #sweetbraveuriah #developmenallydelayed #genedeletion #geneticdeletion #gtubelife
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