gtubebaby gtube tubie micropreemie nicugrad babymodel cutebabys babyfever trachbaby 24weeker nicubaby tracheostomy feedingtubeawareness preemiestrong trisomy18 cute medicallycomplex preemie specialneedsmom tubiebaby babies_with_swagg babiesofinstagram babiesworld babycommercial babykneesocks blackbabiesrock blackbabygirl bluejeanbaby bougiebabies bourgiebabies iugr
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
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
@lovewhatmatters approached me to write Lily’s birth story. It’s now live on their website
.
.
#twinbirth #trauma #survival #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 #lifeafternicu #nicutonow
This is it. My last pump. I’ve been dreading this day since the moment that Lily was born. I had no idea if my body would ever produce for her- through the trauma of premature birth, child loss, NICU time, and the stress of motherhood, all that I could do was pump and hope that I could give my child what she needed to survive. We have never been able to breastfeed as the severity of Lily’s condition was a barrier, so I exclusively pumped 6-8 times per day for eleven months. And now, my body is tired. It’s telling me that it’s time. I feel every emotion, from fear to relief and sorrow, but above all I am so proud of what my body could do for my baby.
1796 pumping sessions
884 hours
160,214 mL
5,341 ounces
1 healthy, thriving micropreemie
.
.
#thisispostpartum #pumpingmom #fedisbest #exclusivelypumping #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 #nicutonow
+=
.
Don’t let this picture fool you, they barely tolerate one another
.
.
#girlsbestfriend #muttsofinstagram #dogsandbabies #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
Monster was thiiiiiiis close to pulling her gastronomy tube out today. It’s a darn good thing she’s so cute
.
.
#preemieproblems #gtube #tubie #nicugraduate #nicugrad #micropreemie #24weeker #preemie #preemielife #preemiejourney #nicu #nicubaby #niculife #nicujourney #trach #tracheostomy #trachbaby #gtubebaby #medicallycomplex #iugr #twin #survivingtwin #twinlesstwin #medicallyfragile #preemiepower #preemiestrong #rebeltrachmoms #nicutonow
those teefers
.
.
#teething #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
Stripes on stripes
.
.
#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 #lifeafternicu #nicutonow