List of the most popular hashtags for theme #NICUJOURNEY

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

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

The first picture was taken on June 19, 2017, on the day of our first failed fertility cycle. I spent the whole day in this spot on the couch, crying and receiving puppy cuddles. I took this picture and promised myself to revisit it on a much brighter day. . The second picture was taken today. Same spot, same puppy. This time, that brighter day has arrived. Yes, we don’t sleep, it takes us 40 minutes to leave our 6x6 square, and we’re quarantined until further notice (#trachmom), but shortly after this picture was taken, the light of my life fell asleep on my chest. The journey to get here is certainly not how I pictured it, but I am so full of gratitude. . The past few years have been the hardest imaginable. Infertility, stillbirth, nicu time, life support, and chronic illness have landed me on this exact couch time after time, miserable and unable to imagine a future of any kind. But, as I lay here today, I’m so thankful for the road that led me to my Lily. To all of the mothers laying on your couches today, I see you, my heart is with you, and you’ll have your second picture one day, too. . . #infertility #pcos #fertilityjourney #pcosawareness #infertilitysucks #stillbirth #stillbornstillloved #nicugraduate #nicugrad #micropreemie #24weeker #preemie #preemielife #preemiejourney #nicu #nicubaby #niculife #nicujourney #trach #trachbaby #tubie #gtubebaby #medicallycomplex #twin #survivingtwin #twinlesstwin #medicallyfragilechild

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

Please STOP calling me at noon. I just fell asleep and I’m tired

Smiling for the very first time! This #26weeker sure loves the sound of his mommy’s voice. #fromminitomoose #preemie #preemies #nicu #niculife #nicujourney #nicumom #nicudad #preemiepower #preemiestrong #preemielove #prematurebaby #prematurityawareness #healthypregnancy @fromminitomoose

. 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