#nicusurvivor

[leahrosejewels]

Flashback to those first days of parenthood, the ones that challenged us with a critically ill child. I remember the NICU at Columbia Presbyterian Hospital, I don't want to go back. Must keep my CHD child safe from CoVid-19. Keeping him home now. #chdwarrior #chdsurvivor #heartbaby #specialchildren #staysafeathome #nicusurvivor #jewishmom #coronavirustimes #parenthoodmoments #momartist #chdawareness #nicudays #isolatedbutnotalone https://www.instagram.com/p/B_ziPX6H-dQ/?igshid=i5r7z8y5n3na

[smile-in-my-eyes]

This smile is keep us sane and driving us up the wall #socialdistancing #staythefuckhome #myhero #preemie #prematurebaby #rainbowbaby #survivingtwin #24weeker #24weekpreemie #micropreemie #preemiemilestones #preemiepower #nicugrad #nicusurvivor #lifeafternicu #toddlerboy #blueeyedboy #MaverickRikleyArdron #littlefighter #beatingtheodds #MavericksMilestones #gtube #tubie #channelmumvillage @channelmum #myformerbump @thebump @babynewstory @ourlittlepreemie #2inheaven2onearth #toddlerlife #lifewithatoddler https://www.instagram.com/p/B-DwAZxDj62/?igshid=1ccxab4izyjbo

[amandzel-ward]

All the girls together #ellarooski and #babygirlward #preacherskids #nicubaby doing so good and progressing like a champ #preemiepower #survivingthenicu #mommymoments #mommyblogger this is my life currently getting Julia hone and since this is our 3rd #nicustay I'm going to post all new content on being #nicustrong being a #nicusurvivor you might be going through this too you can get do this #acupfulofgrateful (at Sisters of Charity Hospital)

[carteblanche-joelsjourney]

Hardest lesson we have to learn #nicusurvivor #expreemie #shortgutsyndrome #broviacbaby #tubie

[heart-and-soles]

Hey neonatal nurses, thank you. Thank you for caring about me when I was too worried about my little man to care about me. Thank you for caring for him when I had to leave. Thank you for the kind words and easy explanations when the doctors left me confused. Thank you for preparing me for the day I could hold my little man for the first time. Thank you for letting me cry to you. Thank you for celebrating the day my son hit 4 pounds. Thank you for making the NICU a little less scary. You deserve a heck of a lot more than one day to be celebrated. #neonatalnurse #NICU #nicunurse #marchofdimes #nicusurvivor #premature #prematurityawareness

[raechstar]

Happy 1st month baby! Hold on tight! :) Amasuction all your secretions away :p #nicusurvivor

[smile-in-my-eyes]

Please keep families like mine as you walk through your daily life #CLD #pneumonia #myhero #preemie #prematurebaby #rainbowbaby #survivingtwin #24weeker #24weekpreemie #micropreemie #preemiemilestones #preemiepower #nicugrad #nicusurvivor #lifeafternicu #toddlerboy #blueeyedboy #biglittleguy #littlefighter #beatingtheodds #CPAP #gtube #gerberphotosearch2020 @gerber #channelmumvillage @channelmum #myformerbump @thebump @babynewstory @ourlittlepreemie #2inheaven2onearth #coronavirus #coronavirusawareness #covid19 #covid19awareness https://www.instagram.com/p/B9zsr2hl4qB/?igshid=yyyxduw52asf

[smile-in-my-eyes]

You know what is making me incredibly frustrated? People who are stock piling that are not among the vulnerable. Obviously grab what you need and maybe a spare BUT dont clear the shelves. My son was born at 23 weeks, spent 215 days in the NICU and came home needing BIPAP as he has severe chronic lung disease. Last winter he was hospitalized 6 times for RSV and reoccuring pneumonia complications and had one PICU stay. This winter he has faired better which is what I am holding onto in the event he does contract COVID-19 hopefully it wont kill him or put him in critical condition. He isn't even three and he has been through more medically than most do in a whole lifetime. As for me as a mother I have already lost my first son Rikley 7.5 hours after his preterm birth as well as Maverick's identical twin Matthias 13 days after birth I am not prepared to watch my son suffer in critical condition or worse. This is Maverick last April with RSV complications in Victoria General's PICU. For the majority of the population who come in contact with COVID-19 you will be unwell for a week or two. For my son this or likely worse is what it will do to him. It is ridiculous that I cant find things like tylenol, hand sanitizer or other cleaning products. At the moment we are okay but it's concerning for if things continue to progress as quickly as they are, and I worry for families like ours that don't have any of the those essentials. Please be rational and don't fall into a state of panic. Buy supplies in accordance to need and not in fear. There are families like mine that need these supplies and cant find them. #PICU #CLD #pneumonia #myhero #preemie #prematurebaby #rainbowbaby #survivingtwin #24weeker #24weekpreemie #micropreemie #preemiemilestones #preemiepower #nicugrad #nicusurvivor #lifeafternicu #toddlerboy #blueeyedboy #biglittleguy #littlefighter #beatingtheodds #CPAP #gtube #gerberphotosearch2020 @gerber #channelmumvillage @channelmum #myformerbump @thebump @babynewstory @ourlittlepreemie #2inheaven2onearth #coronavirus #coronavirusawareness #covad19 https://www.instagram.com/p/B9stxiJlIhj/?igshid=4sm3mlzc3mq4

[smile-in-my-eyes]

Out little #hobbit enjoying second breakfast of toast with herb and garlic cream cheese. This boy loves to eat, which feels so incredible from where he started. #feedingtubeawareness @gieaters #gieaters #learningtoeat #myhero #preemie #prematurebaby #rainbowbaby #survivingtwin #24weeker #24weekpreemie #micropreemie #preemiemilestones #preemiepower #nicugrad #nicusurvivor #lifeafternicu #toddlerboy #blueeyedboy #MaverickRikleyArdron #littlefighter #beatingtheodds #MavericksMilestones #gtube #tubie #channelmumvillage @channelmum #myformerbump @thebump @babynewstory @ourlittlepreemie #2inheaven2onearth #toddlerlife #lifewithatoddler https://www.instagram.com/p/B9XMhu6FOOk/?igshid=rslpdhyax7i0

[smile-in-my-eyes]

Well yesterday was fun, cue the eye rolling. The only thing that goes through Maverick's gtube is medications when needed and up until recently a daily multi vitamin. With his new found ability to eat gummies and fruit snacks he has recently transitioned to daily his daily gummy vitamin. Yesterday afternoon I gave Maverick his daily gummy vitamin and put the bottle back in the cupboard. Not long after I left the kiddos unattended for mere minutes for a quick bathroom break. When I came out the funny vitamins were spilt all over the floor and Maverick had both fists filled. So there I was unsure of how many he had eaten or if I had found this little turkey in time. So a quick call to 811 and a transfer to poison control to thankfully tell me he would have had to eat 300 for it to be a problem, it's a bottle of 250. Moral of the story where there is a Maverick there is a way. I just keep reminding myself I prayed for an active, wild child 🤦🏻‍♀️🤷🏻‍♀️ This is a picture of him trying to get more of his gummies. He was pretty ticked at me. #littleclimber #poisoncontrol #learningtoeat #myhero #preemie #prematurebaby #rainbowbaby #survivingtwin #24weeker #24weekpreemie #micropreemie #preemiemilestones #preemiepower #nicugrad #nicusurvivor #lifeafternicu #toddlerboy #blueeyedboy #biglittleguy #MaverickRikleyArdron #littlefighter #beatingtheodds #MavericksMilestones #gtube #tubie @gerber #channelmumvillage @channelmum #myformerbump @thebump @babynewstory @ourlittlepreemie #2inheaven2onearth #toddlerlife #lifewithatoddler https://www.instagram.com/p/B9Hc8w2Flrz/?igshid=736fbrqqn6ce

[smile-in-my-eyes]

I've always hated those food covered baby/toddler pics...here I an eating humble pie because I never thought this day would come. Nearly 7 months without tube feeds. Life is beyond expectations these days. #feedingtubeawareness #proudmom @gieaters #gieaters #learningtoeat #myhero #preemie #prematurebaby #rainbowbaby #survivingtwin #24weeker #24weekpreemie #micropreemie #preemiemilestones #preemiepower #nicugrad #nicusurvivor #lifeafternicu #toddlerboy #blueeyedboy #MaverickRikleyArdron #littlefighter #beatingtheodds #MavericksMilestones #gtube #tubie #channelmumvillage @channelmum #myformerbump @thebump @babynewstory @ourlittlepreemie #2inheaven2onearth #toddlerlife #lifewithatoddler https://www.instagram.com/p/B9DaGDIl0GM/?igshid=dujcfhi4x1ar

[smile-in-my-eyes]

Someone was too quiet in the kitchen this morning. This little turkey had snuck himself some leftover birthday cake 🎂🍰 #letthemeatcake #sweettooth #learningtoeat #myhero #preemie #prematurebaby #rainbowbaby #survivingtwin #24weeker #24weekpreemie #micropreemie #preemiemilestones #preemiepower #nicugrad #nicusurvivor #lifeafternicu #toddlerboy #blueeyedboy #biglittleguy #MaverickRikleyArdron #littlefighter #beatingtheodds #MavericksMilestones #gtube #tubie @gerber #channelmumvillage @channelmum #myformerbump @thebump @babynewstory @ourlittlepreemie #2inheaven2onearth #toddlerlife #lifewithatoddler https://www.instagram.com/p/B8xDL3EFCAw/?igshid=1nn0z9mxutt3i

[smile-in-my-eyes]

Someone really loves his cheese wiz (dont judge me) sandwich. This is a huge milestone working on eating sandwiches as it's a lot of chewing which is a lot of work for this kid. Proud mom!! @gieaters #learningtoeat #saycheese #myhero #preemie #prematurebaby #rainbowbaby #survivingtwin #24weeker #24weekpreemie #micropreemie #preemiemilestones #preemiepower #nicugrad #nicusurvivor #lifeafternicu #toddlerboy #blueeyedboy #biglittleguy #MaverickRikleyArdron #littlefighter #beatingtheodds #MavericksMilestones #gtube #tubie #channelmumvillage @channelmum #myformerbump @thebump @babynewstory @ourlittlepreemie #2inheaven2onearth #toddlerlife #lifewithatoddler #toddler https://www.instagram.com/p/B7xH3a3FzCS/?igshid=1sd0u23988yna

[smile-in-my-eyes]

So unfortunately our time home was short. Maverick was orginally hospitalized for pneumonia on Thursday evening. Although still not 100% he appeared to be on the mend and was discharged Saturday afternoon. Sunday both kiddos seemed to do a gradual decline. That evening, Maverick, following back to back desats some as low as 71, was readmitted for his pneumonia and confirmed RSV. Cosy although unwell seemed okay at home. Monday following the steady decline of energy, liquid intake, urine output and the inability to keep anything down was admitted that evening. Maverick was able to hold reasonable sats last night with oxygen or a nebulizer. He appears to be over the hump and will likely be ready for discharge tomorrow, fingers crossed. Unfortunately Cosy has continued her decline. One of the prices we pay to live in such a beautiful place is there isn't always a pediatrician on call at our hospital and policy states that for a pediatric patient to be admitted a pediatrician must do so. Sunday evening there was a pediatrician on so Maverick could be admitted locally, yesterday there was not. We are waiting on Cosy's chest xray and blood work to see if that will tell us anything. This is likely RSV but the swab takes a few days to come back. She is still unable to keep anything down and her intake is less than an ounce every few hours so she is needing iv fluids. This likely means she needs a formal admittance but that can't happen here until Thursday. The discussion is for a transfer to Nanaimo. Please continue to send Maverick all the healthy, healing vibes and start the same for Miss Cosy. Hopefully we can see some improvement over the next 6-12 hours and can avoid a transfer out. As always, thank you for all 💕 #CLD #pneumonia #hospitalstay #justkeepswimming #RSV #myhero #preemie #prematurebaby #rainbowbaby #survivingtwin #24weeker #24weekpreemie #micropreemie #preemiemilestones #preemiepower #nicugrad #nicusurvivor #lifeafternicu #toddlerboy #blueeyedboy #biglittleguy #MaverickRikleyArdron #littlefighter #beatingtheodds #CPAP #gtube #tubie #myformerbump @thebump @babynewstory @ourlittlepreemie #2inheaven2onearth #babygirl https://www.instagram.com/p/B7l9MTgldSI/?igshid=u0m8jspi3gpa

[smile-in-my-eyes]

Yes this is the face of chronic lung disease and pneumonia. Maverick was admitted to hospital last night following oxygen sats bouncing between 88-93, indrawing and excess work of breathing. Xrays showed he has pneumonia in his upper right lung, Knowing when to take Maverick to the hospital is tricky. He isn't your average kiddo, his lungs are more fragile and because he is so use to working harder he often doesnt display symptoms until he is really sick. Thankfully we have an oximeter at home and saw the subtle changes. For most you'd look at this picture and feel happy but the truth is this energy was short lived. It makes me sad that he is just so use to having the simple task of breathing be harder than it is for others that even when he feels like garbage he can put on this big happy face. We have our fingers crossed for a short hospital stay and that we can keep it local. It's hard to know for sure as Maverick has a history of quick recoveries but also fast declines. Send us all your happy, healthy and healing vibes. #CLD #pneumonia #hospitalstay #justkeepswimming #myhero #preemie #prematurebaby #rainbowbaby #survivingtwin #24weeker #24weekpreemie #micropreemie #preemiemilestones #preemiepower #nicugrad #nicusurvivor #lifeafternicu #toddlerboy #blueeyedboy #biglittleguy #MaverickRikleyArdron #littlefighter #beatingtheodds #MavericksMilestones #CPAP #gtube #tubie #channelmumvillage @channelmum #myformerbump @thebump @babynewstory @ourlittlepreemie #2inheaven2onearth https://www.instagram.com/p/B7cSChfDqbb/?igshid=17tk3a7v94cq2

[smile-in-my-eyes]

Helping? Or hindering with #laundry 🤷🏻‍♀️ #myhero #preemie #prematurebaby #rainbowbaby #survivingtwin #24weeker #24weekpreemie #micropreemie #preemiemilestones #preemiepower #nicugrad #nicusurvivor #lifeafternicu #toddlerboy #blueeyedboy #biglittleguy #MaverickRikleyArdron #littlefighter #beatingtheodds #MavericksMilestones #gtube #tubie #channelmumvillage @channelmum #myformerbump @thebump @babynewstory @ourlittlepreemie #2inheaven2onearth #toddlerlife #lifewithatoddler #toddler https://www.instagram.com/p/B6rJYYZFjwg/?igshid=wg5s98yh3z26