#gtubelife

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Were you lucky enough to snag a sample? If so be looking out for it! If not no worries, there will be more opportunities in the future! #tubiepads #gtubelife #gtubepads #gtubebabies #shoplocal #shopsmall #gtube #handmade #girlsprints #boyprints #cutefabrics #absorbent #soft #feedingtube #feedingtubeawareness #gtubebaby #gtubekids #tubie #tubiebaby #tubiekids #tubielife #tubiemom
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New modification!! A pouch can now be attached to our Medi-Care Pocket. 🙌🏻👏🏻🙌🏻👏🏻. My biggest hurtle with creating adaptable clothing is imagining the world the you live in. Imagining your struggles. Imagining your pain. Imagining your life! And then finding way to make that life just a tiny bit easier. You all are rock stars! And I thank you for allowing me to see a glimpse of your life with your little tyke!
#transformationtuesday Conner 2 years ago today just minutes after his first emergency surgery that saved his life vs. today! I’m constantly in awe of this kid and his strength! 💪🏼
So this happened today in speech therapy. Lip rounding with the straw AND sucking AND swallowing without a single problem. In fact, there were smiles and giggles nearly the entire time. Conner hasn’t willingly drank out of anything on his own like this since his bottle days which was over a year ago. And even with the bottle, it was a struggle. Conner had a very strong oral aversion and is 100% tube fed. Days like today remind me that he will get there at his own pace. So proud of this kid!
There are only four kinds of people in the world. Those who have been caregivers. Those who are currently caregivers. Those who will be caregivers, and those who will need a caregiver. - Rosalyn Carter • #caregiverlife #giveeverythingbutup #specialneedsmom #specialneedsparenting #iamtsc #autismawareness #medicallyfragilechildren #gtubelife
First attempt at batch blending Conner’s food...made possible by nap time and Red Bull.
Costco run made easy with the @swingthingofficial ! We are still working on Conner’s trunk control and sitting on his own, but in the meantime this is 🙌🏽
Latest orders complete & headed to their new homes! I have many different fabric options & if I don't have one you are looking for let me know & I’ll see if I can locate something for you! #tubiepads #gtubelife #gtubepads #gtubebabies #shoplocal #shopsmall #gtube #handmade #girlsprints #boyprints #cutefabrics #absorbent #soft #feedingtube #feedingtubeawareness #gtubebaby #gtubekids #tubie #tubiebaby #tubiekids #tubielife #tubiemom
She dropped almost a pound, has another lung infection, we are up to 2.5 hours a day of chest therapy and breathing treatments-- and I'm trying to find something uplifting to say... Meanwhile she just smiles through it! Talk about the lemonade 😢😍 #sheliftsme #inspiresme #callierae #cysticfibrosissucks #gtubelife
When you're in the middle of a solid nap and mom wakes you up to take meds. #gastroschisiswarrior #gtubelife
"Sometimes Conner’s blend sprays out of his gtube instead of going in. 😑" Who else feels this #gtubelife ? (@ourlifeafternicu )
Instant Endo relief from eo. Now a walk and maybe a bite to eat. It's actually nice today. #babywearing #babywearingmama #wearallthebabies #naturalmama #crunchymama #endometriosis #essentialoils #cbd
Our girl has been running a 101*+ fever for over 24 hours. Dr. Moore has assured us that it's only a cold, be that we should keep a close watch on her just in case there are any sudden changes. Please keep Calla in your thought and prayers, and hopefully this girl can get better quickly. #misscallajane #CallasCrimsonArmy #sickbaby #immuneproblems #chd #chdwarrior #chdawareness #chdprincess #vsd #asd #openheartsurgery #zipperscarclub #scarsarebeautiful #gtubebaby #gtubelife #gtubeawareness #gtube #newlife
These 7 months have flown by, and it's such a bittersweet feeling. This little girl amazes me Every. Single. Day. She always has a smile on her face, always seems to see the positives, and always brightens the hearts of the company that she keeps... but I have the most bittersweet feelings as this girl blooms her way through infancy and charges toward toddlerhood. #misscallajane #CallasCrimsonArmy #7monthsold #chdwarrior #chdawareness #heartbaby #1in100 #openheartsurgery #chd #vsd #asd #zipperscarclub #scarsarebeautiful #gtubebaby #gtubelife #gtubeawareness #gtube #slowdowntime
Can you believe none of my girls are into mermaids 🧜🏻‍♀️ or unicorns 🦄 ?!? They are totally missing out because i would buy them so much stuff! Ha. Good thing my awesome customers eat them up!! Claim any of these fabrics with your bag of choice before Monday, using coupon code MAGIC at my Etsy shop and I’ll cover the shipping. #sewveryfoxy #gtube #gtubebaby # gtubekid #tubie #tubiebaby #tubiemom #tubefed #fedisbest #feedingtube #tubielife #gtubelife #jtubelife #gtubelove #feedingtubebaby #continousfeeds #feedingonthego #etsysellersofinstagram
I am so excited Julian started crawling this week😃😃 Julian was in the hospital for 182 days and basically bedbound the whole time so he fell behind. Thanks to long hours and weeks of physical therapy he’s finally starting to do things himself like crawling next will be walking I’m so excited. We are also working with occupational therapy and speech therapy so he can learn to eat by mouth. #gtubebaby #gtubelife #chdawareness #chdwarrior #chdlife #chdsurvivor #zipperclub #mommysuperhero #pulmonaryhypertension #pulmonaryveinstenosis To all heart Family’s when did your CHD Warriors started walking?
Pretending this is chocolate ice cream 😔🤦🏽‍♀️🤮🍫🍦
New blend...increasing carbs in hopes he will gain like me when I eat carbs! Conner has been stuck in the 21lb range for months...he gets longer, but not wider. It’s a problem many people would wish for, but we need this boy gaining! I am hoping this is the right combo for him!
This one a kind bag is now LIVE in my shop. www.sewveryfoxy.com. It’s holds a 500ml infinity bag and pouches for ice packs!! Hurry before it’s gone! #sewveryfoxy #gtube #gtubebaby # gtubekid #tubie #tubiebaby #tubiemom #tubefed #fedisbest #feedingtube #tubielife #gtubelife #jtubelife #gtubelove #feedingtubebaby #continousfeeds #feedingonthego #etsysellersofinstagram
This kid. Baseball makes her happy. 😍 #Autism #fragilexsyndrome #epilepsy #gtubelife #vns #cbrmagic #magicfresno
There’s a special little girl in Texas that will get some a fun mail from me this week! #tubiepads #gtubelife #tubiemom
And just like that, we start the day all over again. • They say that kids thrive on routines but quite frankly, as a special needs mama who juggles EVERYTHING in order to keep my child alive, keep my job, and try to keep making healthy meals and normal life chores going... routines help me thrive too. Many thanks to @katiewilsonphoto for capturing my “before Lorelei wakes up” routine of drawing meds for a couple of days. It’s so much easier to grab and go during the day this way! • What routines help you get through your day? This is one I picked up along the way... always looking for new special needs mom hacks!
Guess who's back on the growth chart?! THIS GIRL! 1% Baby! It was a big week for her. Hitting the growth chart and having her first tastes of food big girl food. 13 pounds, here we come! We love our SLP, Miss Cara! #CallasCrimsonArmy #misscallajane #6monthsold #chdwarrior #chdawareness #vsd #asd #openheartsurgery #gtubebaby #gtubelife #timeforsolids #nomnom #carrots #loveourslp #slpsrock #feedingtherapy
Idk but I think he likes these. It's a start. #CHARGESYNDROME #zippycuplife #gtubebaby #gtubelife
Oktaś! 💞 From his mum: "We just realize the therapeutic significance of such "dressing". Even from something that is ugly, unnatural and related to the disease, you can make something that looks pretty and attractive. Something that increasing the feeling of uniqueness not otherness. :) " #PiQuuHandMade #Reusable #GTubePads #PodkładkiPodGastrostomię #Gastrostomia #Gastrostomy #GTubeCovers #PEG #GTube #GJTube #Mickey #BellyButton #FeedingTubePads #PodkładkiPodPEGa #OsłonkiGastrostomijne #OchronkiPodPEG #OsłonkiPodPEG #FeedingTube #GTubeBaby #GTubeKid #Tubie #TubieBaby #TubieMom #TubeFed #TubieLife #GTubeLife #JTubeLife #GTubeLove #FeedingTubeBaby #EtsySellersOfInstagram
Is there a design or character you would like to see in my shop? Leave your suggestions below and you may see them soon in my shop. #bellabuttonsgtube #bellamadalynetsy #tubie #buttonbuddies #gtubelife #whatdoyouthink
💜Today is Epilepsy Awareness Day.💜 💜I HATE watching this video. This is the video I took to show Conner’s neurologist. He was diagnosed with a rare form of epilepsy called infantile spasms. 💜His spasms did not present as spasms often do (startle or head drops). I share this video in hopes that it helps someone spot spasms sooner. His were subtle, but the damage done to him and babies with infantile spasms is devastating. The longer the spasms go uncontrolled, the more the child can digress. Conner stopped chatting and smiling in a very short time. His vision got noticeably bad and he had terrible nystagmus. 💜The worst part about spasms? Not every child responds to treatment and there’s no set treatment that is used. All treatments are give and take. We treated Conner with a high dose steroid called ACTH. During treatment, Conner started vomiting daily, he began refusing to eat and ultimately ended up with a gtube. 💜I am beyond grateful that it stopped his spasms and he has been seizure free for just over a year.
Happy Monday from this kid. At least one of us thinks it’s funny that he threw up all over the wall (vomiting is normal in this house). Not pictured: Conner laughing as I clean it up. Also not pictured: vomit that made it all the way down the wall and into a puddle on the floor 🤦🏽‍♀️
"Some days, she has no idea how she'll do it. But every single day, it still gets done" -author unknown This! I feel this way on a daily. The overwhelming feeling of is there enough time in the day, did I forget something, is there a doctors appointment today, or therapy session, are my bills paid, what about his meds did I miss one, or is it time to pump again or have I eaten today?... not only was I a new mom a year ago I got the added challenges of being a mom to a medically complex heart baby, who lived 6 months inpatient and fought several battles to stay alive. Even though it's definitely a stressful, tough, tiring, and eventful life I wouldn't trade it for anything in this world. Because those good days, hours, minutes even seconds make it all worth it! Liam has been a true inspiration and has changed me for the better. My little hero I hope you know what you mean to me and how much you are loved 😍❤ #chdsucks #chdlife #chdwarrior #CHDAWARENESS #heartwarrior #heartbaby #hearthero #hlhswarrior #hlhs #hlhssurvivor #tubie #gtubebaby #gtubelife #tubielife #tubiemom #heartmom #heartmomlife #alwaysmybaby
Inside the life of a mom with a medically complex child.... My nightly routine consists of drawing up all his meds needed for the next day. When we first got discharged back in September I was so nervous with his cares and needs that I didn't think I could be left alone with my own child. Isn't that sad when you don't feel safe being alone with your own baby. Well as I sit here today I feel comfortable being alone with him, bathing him myself, and just spending the day with him with mommy and son time. Especially since michael is working a lot of houes here lately. We as a family have come a long way in just a short 6 months and I hope that we continue to progress and become stronger as a unit. #InTheLifeAsAHeartMom #chdsucks #chdlife #chdhero #chdaware #chdwarrior #CHDAWARENESS #brokenheart #HLHS #gtubebaby #tubielife #gtubelife #tubielife #HeartWarrior #hearthero #heartbab #halfaheart #heartmomlife #TubieMom
Got my baby some cute gtube covers!❤ #peppapig #gtubecovers #mickeybutton #gtubelife #etsy #socute #mybabyboy
My little warrior is trying to be mobile lately. He is starting to play on his knees and roll all round. 😍❤ #activebaby #tubiebaby #tubielife #tubie #gtubebaby #gtube #gtubelife #gtubeawareness #chdlife #chdaware #chd #chdwarrior #chdhero #hearthero #heartwarrior #heartbaby #TubieMom #heartmomlife
Time for bedtime meds! Only a strong woman has a smile like that after 4 days after her 4th hip surgery! 💪look at that smile 😁 #cerebralpalsyawareness #cerbralpalsystrong #timeformeds #strongwomen #specialneedsmom #specialneeds #gtube #gtubelife
Food prep for Mila. She’s starting to eat more textured food. Don’t have to purée as much anymore. Woohoo Mila!!!! Way to go. #gtubelife #specialneedsmom
Coming off my new shopping experience high like... 👆🏽🤦🏽‍♀️🙄 Sometimes Conner’s blend sprays out of his gtube instead of going in. 😑 #gtubelife #squeasygear #ourlifeafternicu #sayitdontsprayit #gtube #feedingtubeawareness
Balloon check today. Under the tube holding it in place is what we call a balloon. Like a water balloon. Its filled with water that blows it up to allow the tube to stay in place. So I’m doing a water check today. In Boston I’d have my tube changed every 3 months but in the Uk it’s every 6 months. I’m going on 6 months now. Because I’m so used to it being changed every 3 months I’m doing the balloon checks more often just to be precautious. That’s all there is to it. But definitely time for a new tube. 😊😊#gtube #gtubelife #cysticfibrosis #cfrd #diabetic #diabetes
Momma meant to post this sooner, but... yeah, she's a bit flighty. 😂 Can you believe this girl is 2 months post ❤ surgery?! She's also gained more than 2 pounds since her heart repair. Still working on mastering that necessary skill of oral eating though.😒 #callascrimsonarmy #misscallajane #6monthsold #gtubebaby #gtubelife #gtubeawareness #chdwarrior #chdawareness #chdprincess #2monthspostop #heartrepair #scarsarebeautiful #newlife #yagottaeatgirlie #babywearing
Today is Cook Children’s Day! We’ve spent a good chunk of the last year either at Cook or traveling to and from Cook. Thankful to have all the specialists Conner needs just 4 hours down the road! #cookchildrensday #cook100years #happybirthdaycook #fortworth #fortworthtexas #texas #ourlifeafternicu #EEG #epilepsyawareness #epilepsywarrior #epilepsysucks #ostomy #NEC #bowelsugery #gtube #gtubelife #infantilespasms #therapydog #sitstayplay_cc #peakthedragon #specialneeds #therapydogvisitsformom
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