List of the most popular hashtags for theme #GTUBE

It's moments like this with My (1 out of ) Mr. #stealyourheart #teamchace that I know I would never get back. But I'm so happy that I recorded this video at his follow up appt, so I could always go look at and cherish this time while seeing his growth. I love his little voice in this video and forgot how cute it was when he was saying his name and told me my name is Daddy not (Rosco). ⠀ ⠀⠀ PS: he still lives with his parents like the shirt says ‍♂️ ⠀ ⠀⠀⠀ #tloce #thelifeofchaceelijah #niafa #neverinafightalone ⠀⠀⠀⠀⠀⠀⠀⠀⠀ #congenitalheartdefect #chdwarrior #chdawareness #chdsurvivor #heartdefect #heartwarrior #heartsurgery #chd #tetralogyoffallot  #openheartsurgery #tof #smib #pha #gtube #feedingtubeawareness #openheartsurgery  #childrenshosptial #trultfocusedfilms #ifonlyyouknewchd #feedingtube #nymmg #ipopla #locs #locstyles

Another solid day @smiletherapyforkids! We were here in early April and Conner tried SO hard to successfully complete this exercise, but couldn’t quite do it. Now check him out! #strongereveryday #neverquit

Sometimes we whisper like we’re telling secrets . At the end of this video, you can see that Lily is speaking but not making any noise. Sometimes, depending on the position of her trach, she can’t get any air up to her vocal chords. As her lungs grow stronger it will be easier for her to push air and talk, but for now we’re working on managing the frustration that comes with inability to consistently communicate. With our therapists, we’re introducing some basic sign language and working to keep her calm when she doesn’t feel heard. . . #nicugraduate #nicugrad #micropreemie #24weeker #preemie #preemielife #preemiejourney #nicu #nicubaby #niculife #nicujourney #trach #tracheostomy #trachbaby #tubie #gtube #gtubebaby #medicallycomplex #iugr #twin #survivingtwin #twinlesstwin #medicallyfragile #preemiepower #preemiestrong #rebeltrachmoms #nicutonow

This little monster is down for the count again. Her trach stoma is colonized with MSSA (methicillin-susceptible staphylococcus aureus) and is prone to flare ups during times of stress. She’s been popping teeth like a mad woman, which has allowed the MSSA to invade again. This is something that most trach kiddos experience- colonization of a super bug is very common and very annoying. She’s needing more oxygen, working harder to breathe, and relatively lethargic. We’re working hard to avoid hospitalization, so for the next several days you can find us in quarantine, glued to the couch, in our @dockatot throne, watching Netflix ✌ . In all seriousness, this weekend was supposed to be Lil’s birthday/thank you party for our NICU staff. We’re incredibly sad to have to postpone it, but keeping this babe safe is our number one priority . . #nicugraduate #nicugrad #micropreemie #24weeker #preemie #preemielife #preemiejourney #nicu #nicubaby #niculife #nicujourney #trach #tracheostomy #trachbaby #tubie #gtube #gtubebaby #medicallycomplex #iugr #twin #survivingtwin #twinlesstwin #medicallyfragile #preemiepower #preemiestrong #rebeltrachmoms #nicutonow

Hoops #choosekind #bekind #kindiscool #differentiscool #scarsarecool #treachercollinssyndrome #treachercollins #gtube #hardofhearing #microtia #bahahearingaid #mandibulardistraction #craniosynostosis #babywithtcs #facialdifference #childrenwithfacialdifferences #selfacceptance #selflove #stopbullying #nicu #picu #specialneeds #specialneedschildren #wonder #wonderthemovie #wonderbaby #auggiepullman

Confident. She decided that she was ready to show the world (Kauai) tubie patootie. So proud of her. This recent chapter has been a tough one, but she always end on top. A little girl asked her what it was and without hesitation she told her. My heart sang praises in everything she has over come these past few months. While she has so much healing to do, today seems to be the Kickstarter. #thegutsymom

How Maddison feels about getting the IV out! . . . . . #specialneedsmom #specialneedsjourney #medicalmama #medicalmom #momlife #mommyhood #momsofinstagram #honestmotherhood #motherhoodinspired #thisismotherhood #motherhoodunplugged #bekind #gtube #tubie #tubiebaby #tubefed #tubefedbaby #feedingtube #medicallycomplex #developmentaldelay #globaldelay #globaldevelopmentdelay #cerebralpalsy #hypotonia #cpwarrior #cpbaby

After continual high fevers we came back to the paediatric ward this morning for our follow up appointment with the doctor on duty. Initial labs are suggesting there could be a possible UTI, but it’s not conclusive. However we do know Maddison is fighting some sort of infection. They’ve done more bloodwork and ran a broad-range antibiotic intravenously to help her little body fight this thing. . I knew when I left the house this morning we’d be gone for the majority of the day (I’m glad I packed snacks!) No idea how long we’ll be here for, but we will be waiting for the labs to come back, hopefully they will have some answers and we can properly treat this thing! Maddison has been a trooper, only fussing for the bloodwork. She just wants lots of cuddles and some Paw Patrol. . . . . . #specialneedsmom #specialneedsjourney #medicalmama #medicalmom #momlife #mommyhood #momsofinstagram #honestmotherhood #motherhoodinspired #thisismotherhood #motherhoodunplugged #bekind #gtube #tubie #tubiebaby #tubefed #tubefedbaby #feedingtube #medicallycomplex #developmentaldelay #globaldevelopmentdelay #cerebralpalsy #cpwarrior #fighter

We jumped right in to this intensive block with four appointments today. I’m especially excited about our time @smiletherapyforkids because we get to meet some amazing kids and their parents! So far we’ve met @briellaandme and @dear.divy.jane! Two hard working, strong little ladies! Ready for day ✌...after some much needed sleep !