List of the most popular hashtags for theme #MEDICALLYFRAGILE

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

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

Jack has been weaned off his hi-flow this morning after 5 days! The doctors warned me that given his prematurity and his age he will take a little longer to 'bounce back' and may require low flow oxygen in the coming 24 hours, but we are making huge steps in the right direction. He is still getting Mumma's milk through his nasogastric tube but we are reducing the rate and hopefully he will transfer back to full boob feeds quickly (he currently tires at the breast but is keen as mustard for it - no surprises given his size!) Mumma is slowly feeling more in control of her emotions (no longer crying at the drop of a hat) but is missing her other boys & her own bed like crazy. Slow & steady wins the race ♡ • • • *For those who aren't aware, Jack has RSV (a nasty respiratory virus), bronchiolitis and pneumonia . . P.s. it sounds like he says 'hellooo' at the end of this video #miraclemumma

Woke up from my nap clapping . Lily is working so hard to practice all of the skills that we would have introduced months ago- but she was heavily sedated for so long that focus and endurance were very hard for her. Now that she’s home, drug-free, and medically stable, we’re recouping skills at an incredible rate. This week, with the help of my mom, she learned to clap, wave “bye bye”, scream around her trach (), and high five. During moments of down time, she quietly remembers what she can do, and smiles and giggles to herself . I realize that I’ve been bombarding you all with constant kicking, bouncing, smiling, etc pics. Just a few months ago, we had no idea if this child would ever hold her head up, let alone retain and recall any of these things. Just celebrating every tiny thing over here . . #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

Our new favorite morning activity . . #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

Laying on the floor with my girl, thinking about our trach/vent life . Recently, we’ve had a few experiences in public (on the way to doctor appointments) that have been less than stellar. After conversations with a few of our medically fragile friends, I realized that uncomfortable public exchanges are more common than not. This week, while checking in for Lily’s appointment, the woman working at the front desk asked me “What’s wrong with her?” which completely took me aback. Our friends have been asked things like this, all unsure of how to answer. Do we put our heads down and carry on? Do we use this as an opportunity to educate? I love that people are interested in learning about Lily’s accessories, but wish that we were treated less like a freak show and more like humans deserving of compassion. This community has accepted us with loving arms, and we are excited to help change the narrative surrounding these incredible children . . #makingabnormalnormal #loveABLE #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

Taking a little stroll today . . #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 view will never get old . . #biggirl #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

. Lily is experimenting more and more each day with her voice and mouth. She woke up yesterday morning and decided that she can blow raspberries, and now she’s spitting all over everythingggggg . . #gross #butcute #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