List of the most popular hashtags for theme #PREEMIELIFE

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

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

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

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

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

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

✳️BALANCED BABY POSITIONING INCLUDES SIDELYING✳️ I always like to say that babies aren’t 2D pieces of paper to be flipped front to back. Laying your baby on his or her back is obvious and you’ve heard about Tummy Time but not many people outside of the infant development professions talk to parents about the benefits of the sidelying position during awake times. Baby may stay on her side without support or may need the support of a hand, leg or rolled blanket. Baby may be fully on the side of his body or at any incline between that and flat on the back. Baby may practice rolling from side to back or side to front…and you can roll him back in. Baby can look and touch toys while on the side - all while helping prevent (and treat) head flattening/Plagiocephaly. Learn more about positioning your baby for optimal development and head shape in my free email course Avoiding the Baby Helmet (link in bio).Don’t have a newborn? Tag a pregnant or new mama friend to share a helpful tip! [Maeve is 4 wks old here. Playmat is the amazing Play Gym from @lovevery ] • • • • • #plagiocephaly #torticollis #occupationaltherapy #physicaltherapy #cranialband #newmomtips #thirdtrimester #waitingforbaby #newmomsurvival #aota #newbornlife #newmomproblems #babyhelmet #childdevelopment #simplymamahood #mynameismama #honestlymothering #ohheymama #preemielife #momsofmultiples #breechbaby #familyofthree #headedhome #onedayold #1monthold #2monthsold #3monthsold #kbnmoms #kidbloggersofig https://app.convertkit.com/landing_pages/78555?v=7

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