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OUR FIRST GROUP THERAPY //////// taking advantage before it starts snowing (#causeCanada), "preschool" was held at a park this past Tuesday for the weekly group activity. Nick and I both had the day off, so we took her together. She did some walking around and we were busy trying to keep her from licking the whole playground ("licking everything" is her current obsession and had to whip out her soother to help prevent her from doing so πŸ˜‚). It's hasn't even been 2 weeks since starting GRIT, and we're already noticing gains in her mobility -- as she's more willing to crawl with less and less encouragement from us (she's super stubborn and always tries to get us to retrieve things for her), as well as walking.
#evannastrong #evannasspecialheart #evannasroadtorecovery #yycfamily

||| stollery, day 4 ||| and we're DISCHARGED πŸŽ‰πŸŽ‰ After an xray to check the "plugs" they inserted into her liver after the cath, some blood work, and a final chat with Dr. S, – we were told we could take our little girl home with instructions to follow up with a cardiologist next week.
For the most part Evanna is doing well, and we're just dealing with some post-anesthesic nausea right now.

Random shameless plug: we've already had to pull over on the side of the highway just outside of Edmonton to deal with a major vomiting situation. She was just so uncomfortable, when I noticed our old @ellie.ears sitting in a corner at the back of our SUV. They were sent to us back when Evanna was coming out of PICU in 2015 and we were working towards going home – but at the time she had somewhat poor neck strength. I quickly got Nick to fetch them, and while she still feels pretty crappy, it's made her noticeably more comfortable in her car seat. Anyways, grateful we had them in our vehicle, and to Chrissy for sending them to us over 2 years ago ❀️ #evannasspecialheart #evannastrong #stollerykids #stollery #prayersforevanna

Good News/Bad News - GN is we tried some new positions today during physical therapy and Evanna tolerated and liked it quite well. She usually HATES tummmy time, but she didn't mind this modified position and so I'm taking that as a win. BN is last week Evanna tested positive for Rhinovirus (your common cold), but because she wasn't symptomatic they didn't do anything about it. However, with a slightly increase of secretions and thickness, they decided to put us on isolation.... which means I get to sport a lovely yellow gown and our daily walks have been put on hold. They did another swab yesterday, so hopefully it'll come back negative or that the medical team soon decides that she is fine and not need isolation anymore. While I personally don't feel she's being symptomatic (no runny nose, etc) and Pulmonology says that every kid her age is going to have an increase of secretions due to teething (Evanna has a about 6 coming in right now), I guess it's better to be safe than sorry.
#EvannasSpecialHeart #PrayersForEvanna #JustDontTakeAwayHerSoother

We told Evanna that we accidentally deleted Frozen πŸ˜‚ #jk

I took this picture a few days ago, and we continue to pull it out to have a good laugh. I've since decided that it's too good not to share with you all.

#EvannasSpecialHeart #EvannaStrong

|| where do I begin? || Evanna continued to somewhat deteriorate late Wednesday night, and so when her heart rate rose well into the 170s and her core body temperature increased while her extremities became ice cold (due to past incidents, this symptom alone scares the bajebbies out of me), we decided to pack things up and take her into Emergency (where we of course got the VIP treatment). Based on original symptoms, it was initially thought we were dealing with something viral and we could go home today and continue to ride it out.... BUT blood results came back at midnight (along with a few other lovely symptoms), and we now know we're dealing with a bacterial infection. Evanna has now been started on IV antibiotics, and talks of going home won't even begin until we start to see negative cultures (which also means daily blood draws... 😭). So there is a huge chance that we will indeed be spending Canadian Thanksgiving for a THIRD year a row as an inpatient (heartcrushing to say the least). However, Evanna has actually remained quite stable this whole time (just periods of increased temperature, heart rate + respiratory rate -- in which Tylenol and Advil have been working well to alleviate), so my hope is we can switch to oral antibiotics soon and take Evanna home early next week.
Other notes -- yesterday happened to be Evanna's "Heartiversay" of her very first open heart surgery (ie. the main one), so I somewhat joked that she wanted to spend it with her medical team (as we did last year too). -- we transferred out of the PICU this afternoon, have settled on Unit 2 (our home away from home), and are resuming our oh-so-familiar "hospital mode" way of life. -- she got a quick ECHO (ultrasound of the heart) this morning to make sure there is no vegetation growing on the conduit within her heart. All seems to be well, but we'll recheck by ECHO on again on Monday (vegetation in her conduit would mean a trip back to Edmonton and even another open heart surgery fyi). #prayersforevanna #evannasspecialheart

I feel like once Evanna learns to talk over her trach, we're going to have quite the "chatty Cathy" on our hands πŸ˜‚ ////// 11.03.2016

#MissEvanna #EvannasSpecialHeart #EvannaStrong #TrachBaby

PCICU Day 219 || It's been a "better day" today (I have to use quotations because I have to laugh at what's considered a better day in our situation). They haven't had to chemically paralyze Evanna since 5pm yesterday, but she is still requiring to be heavily sedated. Anytime she wakes up, she gets angry, desats (her O2 levels drop), and her blood pressure and heart rate go up.
The biggest issue in my opinion is that Evanna is incredibly fluid overloaded, and is incredibly uncomfortable. She is so puffy and swollen (the reason for the current lack of Evanna photos), and so I really think once we diuresis her and make her pee more, she'll be much better.

Overall, we think Evanna has finally turned a corner, and we are taking small and tiny baby steps back in the right direction. We still have a long ways to go, but the fact that we haven't had to paralyze Evanna today, is an improvement in my opinion!

12.05.2015

#PrayersForEvanna #EvannasSpecialHeart

οΏ½οΏ½ I interrupt your long weekend for a awesome little announcement οΏ½οΏ½ the immunology clinic FINALLY called me yesterday and told me that they have Evanna's test results from the blood work we did back in July. Just like I figured – her immunology numbers dictate that she does indeed have a great + normal immune system!! While I'm not surprised (the way she continued to fight infection after infection while in hospital and the stability we've enjoyed since coming home), it's still a relief to know we have one less thing to worry about. This means we have also been given the all clear to slowly starting getting Evanna caught up on some vaccinations ////////// immunodeficiency is common among the 22q11 "digeorge" community (Evanna's chromosomal defect that caused her heart and airway issues), which is why we had to test Evanna, but wait til she was at her best before we could to the blood work and get the go ahead to proceed with any live vaccines. #evannasspecialheart #evannastrong

||| stollery, day 3 ||| well, the moment we've been waiting for since October/November is FINALLY here! We know Evanna is in great hands (with the same AWESOME anesthesiologist she had back in December for that tough PICC line insertion), but remain anxious and nervous about what kind of results we're going to receive after. Staff were taken back by her easygoing nature while transferring her over to the procedure bed and laughed when she fought the sleeping gas and sat up for as long as she could to watch Tangled on the tablet (which obviously didn't last long). Prayers for a smooth cath and gentle results ❀️ #evannasspecialheart #evannastrong #stollerykids #stollery #prayersforevanna

MOST RECENT

#CALIFORNIABOUND ///////// it's been well over a day since we received a life changing phone call, and I'm still trying to see through my literal tears of joy and compose myself long enough to share our incredible news. Much to our medical teams disbelief (as they remained honest in their opinion of our dire situation based on Evanna's "not so great" cardiac cath results), Dr. Hanley feels he may in fact be able to help Evanna and has provided quite the interesting surgical plan for her.
This is a referral I have been advocating for since LAST September (we're literally just a few weeks away from the 1 year mark of me asking our cardiologist if she'd send Evanna's records down to California for his review)..... and besides our original 400 day hospital admission, this has been one of the most emotional and mentally exhausting things I've had to endure and deal with. We had some very unexpected roadblocks and heartbreaking delays come our way during this consult, and it's been difficult remaining hopeful at times, while also preparing for the huge possibility that we'd we receive a "no" -- all while knowing that our daughter's LIFE and quality of life is what's at stake here.

I tried my best to explain all the details, such as Dr. Hanley's surgical plan, the timeline and when we're aiming for all this to happen, the out-of-country funding application process, and even the logistics that baby brother is bringing to all this in a new BLOGPOST. Clickable link is located in my IG profile || theirvinefamilyblog.com

#evannaheartscalifornia #californiaorbust #acaliforniamiracle #evannasspecialheart #evannastrong

NO NEWS IS GOOD NEWS /////// I don't mean to have these long pauses in-between updates and milestones, but I'm sure you can all relate to those periods that routines, work, and "life" in general are all that you have energy for, and things like social media just isn't a priority – plus we're just trying to enjoy some everyday normalcy with friends and family this summer. I do sometimes start to feel a little guilty when it's been longer than a week or two between posts (as I remain conscious to those who've come to know and love our little girl), or the fact that it's been days since I've put Evanna in some real clothes (she's been chilling in just a diaper the past 3 days πŸ™ˆ) and snapped a few photos..... but can I blame it on this heat wave?? [EVANNA UPDATES] Two weeks ago, Nick took Evanna to her cardiology appointment, and everything looked great– so for the first time ever, we've been cleared for SIX months until our next cardiac appointment. Barring any arrangements that would have to be made IF we hear that Dr. Hanley has accepted Evanna's surgical case (it was confirmed that Evanna's cath package was couriered to California on July 6th), we won't see Dr. Fruitman until after the New Year -- crazy!!
Part of the reason for this nice little extension, is we're currently seeing Respirology every 4-6 weeks for continued ventilator weans, so there are still "specialist eyes" on Evanna on a fairly frequent basis, and we're blessed with very fluid communication between these two specialties at ACH. Nick and I agreed with this decision, as we know our cardiologist is just a phone call away, and see this only as a huge step forward.
Speaking of Respirology, we see them in less than 2 wks with the goal to decrease Evanna's ventilator PEEP pressure from 8 to 6 (which is practically nothing pressure wise!) and inform them of our "sprinting" status. While it varies day-to-day (some days she has less stamina than others, and we always put her back on the ventilator if she's not handling it well), I'm ecstatic to share that Evanna just did a FOUR hour sprint off the ventilator this morning πŸŽ‰πŸŽ‰πŸŽ‰ #slowandsteady #evannasroadtorecovery #evannasspecialheart #evannastrong

SUMMERTIME FREEDOM /////// while I still dream of mountain adventures, long days at the pool and carefree vacations, this summer has given me some hope that it's only a matter of time.

Yesterday we spent the morning at a pancake breakfast (in celebration of the Calgary Stampede)..... but Evanna's lack of experience with large crowds unfortunately caused a mini meltdown which meant I spent most of the time suctioning and trying to keep her calm + content. I was almost feeling a little defeated to be honest.
However, later that day, we spent a lovely evening with Nick's family and before we knew it, it was 10:30pm (2 hrs past her bedtime) and Evanna was still as happy as could be. Altogether we spent 10 HOURS out of the house and SIX of those were spent "sprinting" OFF the ventilator (3hr sprints 2x/day πŸŽ‰πŸŽ‰πŸŽ‰). We still have a long ways to go, but I just have to take a moment to marvel at far we've come and can just imagine what this firecracker is going to continue to accomplish over the next yr.
#evannastrong #evannasroadtorecovery #evannasspecialheart
photo by @lissables photography

BLOG UPDATE //////// alright, I finally powered through a did a MUCH needed blog update (....cause I still gotta pump out the rest of our family photos and summary of my 1st trimester, but for chronological purposes – needed to finish this first). Link in my IG profile.

It's a recap of our trip up to Edmonton for Evanna's cardiac cath, an explanation of why the results weren't exactly as black + white as we had hoped, the current STATUS OF OUR CALIFORNIA REFERRAL, and what we've been up too the first half of summer β˜€οΈ Also, if you haven't already listened to it, there's a link to my 15 minute podcast interview with @orangesocks__ that summarizes our journey thus far, and despite the last few years being incredibly hard, things are looking up and we have a lot to be thankful for!
#evannasspecialheart #evannastrong #evannasroadtorecovery #theirvinefamily

NEW EXPERIENCES /////// Nick and I both had the day off, and so I wanted to use it to its full advantage. With Evanna sprinting off the ventilator (I'd say we currently average about 2.5hrs 2x/day), her increased stamina, and her overall stable health -- I'm trying to expand Evanna's world outside the 4 walls of our home. For the longest time, outings were reserved for medical appointments and the odd social event in an attempt to keep her safe and protected. However, we're starting to enter new territory of increased "freedom", but with that still comes its challenges. Developmentally, Evanna is still a good 2 years behind (despite being 3 yrs old... 1.5yrs on sedation medication confined to a hospital bed + additional months of sickness tends to hinder development), so it's really hard to find activities that are both appropriate for her developmentally AND that are trach/oxygen friendly. Today we literally "tested the water" with the kiddie pool at our local rec centre, and it went a-okay. They only charged us for one adult (I think the cashier recognized how limited our visit was going be while falling in love with this little redhead.... something that happens quite often), and we stayed for just over an hr. We hope to purchase a kiddie pool of our own later this week (as it's going to be a hot one), and continue to try our best and expose Evanna to new things this summer. Any suggestions?

#evannasroadtorecovery #trachbaby #evannastrong #evannasspecialheart

||| stollery, day 4 ||| and we're DISCHARGED πŸŽ‰πŸŽ‰ After an xray to check the "plugs" they inserted into her liver after the cath, some blood work, and a final chat with Dr. S, – we were told we could take our little girl home with instructions to follow up with a cardiologist next week.
For the most part Evanna is doing well, and we're just dealing with some post-anesthesic nausea right now.

Random shameless plug: we've already had to pull over on the side of the highway just outside of Edmonton to deal with a major vomiting situation. She was just so uncomfortable, when I noticed our old @ellie.ears sitting in a corner at the back of our SUV. They were sent to us back when Evanna was coming out of PICU in 2015 and we were working towards going home – but at the time she had somewhat poor neck strength. I quickly got Nick to fetch them, and while she still feels pretty crappy, it's made her noticeably more comfortable in her car seat. Anyways, grateful we had them in our vehicle, and to Chrissy for sending them to us over 2 years ago ❀️ #evannasspecialheart #evannastrong #stollerykids #stollery #prayersforevanna

||| stollery, day 3 part 2 ||| Evanna was in the Cath Lab for roughly 5 hours – and considering this was just a "diagnostic cath" (ie. no ballooning or stents placed), it was definitely a tad on the longer side, as they encountered some trouble trying to access the left side. Unfortunately Evanna's history and extremely high tolerance of sedation medication caused a few minor issues towards the end, which meant we had to make a little pit stop to the PCICU for about 5 hours before we could go back upstairs to our room. While Evanna handles anesthetic beautifully – she metabolises through it insanely quick, and so they had to throw a LOT at her, including a paralytic towards the end, which meant it was safer to recover under the close eye of the ICU.

So cath results - overall, there weren't any major changes and everything essentially remains the same as her last cath from 2 years ago. Good news is her lung pressures remain favourable, which means there are no contradictions for a potential future surgery. However, there is still a huge question mark in whether there is anything to rehabilitate in regards to her MAPCA's/collaterals, and Dr. S remarked that most cardiac surgeons in the world wouldn't touch her. He's aware of Dr. Hanley and his reputation, and basically reiterated what our cardiologists have said -- that if anyone can help Evanna, it'll be him. So now it's just another waiting game of sending down these cath results to California and seeing what he says.
The plan is to rest easy tonight (we just got back up to ICE), do some blood work in the morning, go over the cath results again with Dr. S in the morning, discharge, and drive back to Calgary. Thanks for all the love + prayers!

#evannasspecialheart #evannastrong #stollerykids #stollery #prayersforevanna

||| stollery, day 3 ||| well, the moment we've been waiting for since October/November is FINALLY here! We know Evanna is in great hands (with the same AWESOME anesthesiologist she had back in December for that tough PICC line insertion), but remain anxious and nervous about what kind of results we're going to receive after. Staff were taken back by her easygoing nature while transferring her over to the procedure bed and laughed when she fought the sleeping gas and sat up for as long as she could to watch Tangled on the tablet (which obviously didn't last long). Prayers for a smooth cath and gentle results ❀️ #evannasspecialheart #evannastrong #stollerykids #stollery #prayersforevanna

||| stollery, day 2 ||| well, at 4pm we were informed that Evanna's cath was indeed being cancelled/postponed, as the first 2 cases took too long. We're completely bummed.... but knew this was also a possibility, and are just waiting to hear what the new plan will be.

This is by far the healthiest and strongest Evanna has ever been while inpatient at the Stollery, which means we got to be a little adventurous and try some new things like ride a tricycle this morning while trying to pass the time (stuff that I could only dream of just 2 years ago). It's been a super long day of waiting, and despite being NPO (no food or fluids) since 7am, Evanna was such a champ about it. Seriously, this girl has been through so much in her little life, yet remains so happy, calm and content with everything, and I couldn't be more proud to call her mine.
UPDATE: we're now scheduled to be FIRST case tomorrow πŸŽ‰πŸŽ‰ (which if I'm going to be honest, would prefer over being last case today). #evannasspecialheart #evannastrong #stollerykids #stollery #prayersforevanna

||| stollery, day 1 ||| we got confirmation at 10 this morning that we indeed had a bed, and were on the road towards Edmonton just 30 minutes later. The drive went really well, and Evanna only got a little antsy/grouchy towards the end (normal toddler behaviour in my opinion lol). We are now admitted and settled on the ICE unit ("intermediate care environment"), as her trach requires higher observation that the regular rooms can't provide.
We met with the doctor this afternoon who will be performing the cardiac cath tomorrow (Dr. S), and confirmed that they will indeed be going through her liver and the overall goals of this procedure (imaging for Dr. Hanley, check lung pressures and do ballooning of any collaterals if they can). He also made a comment that he has heard a LOT about Miss Evanna (he's somewhat "newer" to the Stollery, and so this is our first time meeting him), and apparently is well aware of her reputation.... 😳My only disappointment is that we're currently slated for 3rd case tomorrow, which means there is a small possibility we could be bumped (however, our nurse reassured me they've taken cases as late as 5pm), and she'll have to be NPO (no food) during the day vs while sleeping.
PCICU has been made aware of our admission (actually ran into a favourite intensivist of ours while grabbing a grilled cheese sandwich -- my favourite thing to eat here), but have high hopes that she won't need to go to the ICU after and can just return to the ICE room postop β€” where we'll stay overnight for monitoring (followed by blood work the next morning to check some liver numbers). #evannasspecialheart #evannastrong #stollery #prayersforevanna

new blog post ||||||||| the cardiac cath that we've been working towards since October/November is officially less than two weeks away! This is the procedure that Dr. Hanley from LPCH/Standford Hospital in Califonia requires in order to make a decision on whether he can help Evanna, and potentially improve her prognosis and quality of life. We're actually quite worried, stress and extremely anxious about the results we're going to receive from this procedure, and I've gone into great detail on the blog (while explaining in lamen terms) as to why those feelings are very legit and real based on what we already know about Evanna's current state and our cardiology teams caution to Nick and I about this referral and whether Dr. Hanley will be able to accept our case. Prayers and good thoughts would be greatly appreciated for Evanna, and even Nick and I,Β to feel some peace and reassurance during this time, for a safe Cath, andΒ that the results will be in our favor and appease Dr. Hanley and his team.

#linkinprofile #evannasspecialheart #prayersforevanna #evannastrong #theirvinehome

|| WHO WANTS AN UPDATE??! || so my blogging has slightly fell to the wayside over the past month (and I was doing so good last month too), but I've just uploaded a fresh post this evening! There's a few more pictures from Evanna's birthday, what our family has been up too over the past few weeks, the awesome progress Evanna's been making weaning OFF the home ventilator (πŸŽ‰πŸŽ‰πŸŽ‰), and the DATE of our upcoming cardiac cath that's slated in just a few weeks time (which means our anxiety levels have officially started to elevate)! We have a busy month ahead of us to say the least, so head to the blog for all the details [link posted in my IG profile], and I promise to be a better updater in June #theirvinefamily #evannastrong #evannasspecialheart

WE'RE SPRINTING πŸŽ‰πŸŽ‰πŸŽ‰ || we had an airway appointment today, and we trialed Evanna OFF of the ventilator!!! I repeat -- Evanna is now SPRINTING OFF THE VENTILATOR!!! Pictured is Evanna with just an HME (which provides humidity) and oxygen.

The Respirologist felt she could handle it based off her bronchoscopy that he did back in April, and so we gave it a go (and our trach clinic RT and nurse were just as excited and surprised as we were when given the orders lol). Evanna did extremely well for about 1.5 hrs, and all her "numbers" remained within normal limits (CO2, Heart Rate, Respiratory Rate) – and in fact, her oxygen saturations consistently stayed in the high 80s and low 90s (she normally sits between 75-85 due to her heart defect). However, as we reached the 2 hr mark, Evanna's "work of breathing" was noticeably worsening and was sounding more "wheezy".... which mean some of her malacia showing and parts of her lungs were beginning to collapse, so we called it and put her back on the vent.

So, based on today, we've been given permission to sprint Evanna for 1 hour, TWICE a day! We will then reaccess at our next appointment​ on June 7th and go from there (ie. potentially increase the amount of time Evanna can be off the ventilator). Considering where we were just over a MONTH ago (PEEP of 12) – this is a huge win for us, and I'm extremely excited for a #ventfreesummer.

#evannasspecialheart #evannastrong #evannasroadtorecovery #trachbaby

This little fighter has come soooo far since this photo was taken, in part thanks to the #albertachildrenshospital and the #StolleryKids We share her photo today to help @atbfinancial raise funds through their #ATBwishes4heroes program! Have a photo of your little one (& their #ellieears) that has used either of these hospitals? Share it with us! Repost this and tag @atbfinancial to help raise funds.
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#EvannaStrong #EvannasSpecialHeart #yyc #yeg #strongasamother #motherhoodrising #ig_motherhood

AND WE'RE DISCHARGED πŸŽ‰πŸŽ‰ || by far our happiest ICU admission to date, and I'm seriously on Β c l o u d Β n i n e Β right now. While the medical team was busy rounding on other patients this morning, the nurse practitioner came in after talking to the Respirologist on the phone and stated that everything seemed to be in order and we could immediately take Evanna home.
We actually ended up running into the Respirologist out in the parkade (it's actually the second time this has happened lol), and he reiterated how happy he was with Evanna's bronchoscopy results + revealed that he had actually sprinted her off the ventilator for an extended amount of time while in the OR and she handled it just beautifully. We'll now be seen back in clinic in about 4 wks and look at making additional decreases (though I'm not sure whether it'll be in the form of vent settings decreases or play with the idea of sprints off the vent). My head is spinning at how fast this is all of a sudden going – but we've been​ warned in the past that once Evanna was "ready", the process would gain momentum and changes will start to happen on a more consistent basis.

Again -- a PEEP of 8 😍 (I may have sung that as we were walking out of ICU lol). #evannastrong #evannasspecialheart #prayersforevanna #theirvinehome

BRONCHOSCOPY RESULTS πŸŽ‰πŸŽ‰πŸŽ‰ || so the bronchoscopy results are even better than I had anticipated (partially because I was too afraid to get my hopes up). We had the same Respirologist that did it last year – which was great for consistency purposes.

For the longest time, Evanna was on ventilator settings of β€œ27/12”. The number β€œ12” representing the level on PEEP (pressure) Evanna requires to help β€œstent open” her VERY floppy trachea. When someone undergoes a procedure and needs to be intubated – you can generally extubate a person successfully off the ventilator around a PEEP of 4-5.... so yes, Evanna required more than DOUBLE the amount of pressure to support her breaths (I can't emphasize enough how high that number is). In the OR, the Respirologist was able to go all the way down to a PEEP of 2 πŸŽ‰πŸŽ‰ I’m seriously in shock right now!! While there are still are a several steps to take before we start taking Evanna off the vent – this means we’re definitely headed in the right direction, and weaning off the ventilator and decannulating (taking the trach out) may be much closer than we thought!

At the moment Evanna is back in the ICU on her home ventilator with settings decreased to 20/8 (so the PEEP has been decreased from 12 to 8). Evanna's being monitored for 24 hrs... but we're not quite sure what the plan will be after that. They may discharge us tomorrow and have us hang around these settings for a few months before trying to wean again, or do another decrease or two in the morning. Due to the fact that this is the first massive decrease we've ever done since Evanna's trachoestomy, they may be reluctant to push much further right now, but we'll know more in tomorrow.
Thank you SO much for all the prayers today -- they were definitely heard, and I'm one super happy mama right now.

#evannastrong #evannasspecialheart #prayersforevanna #theirvinehome #albertachildrenshospital

BRONCHOSCOPY || tomorrow morning, Nick and I will be taking Evanna for her bronchoscopy procedure at the Alberta Children's Hospital. Last year's​ left us extremely disappointed and upset (I definitely shed several tears), and we found ourselves somewhat on a plateau over the past year in regards to Evanna's trach journey. I can't convey enough how extremely nervous (but cautiously optimistic) I am for tomorrow's​ procedure and the results we'll get back. My hope and prayers is that the Respirologist will see the cartilage of Evanna's trachea is starting to "stiffen" and "harden", and that we can FINALLY start to wean some of her vent settings and work towards some sprints off the ventilator this year.
It's been awhile since I've asked, but if you can – please send a few prayers our way tonight.

March happenings, including some additional medical updates, some exciting and special "preschool" news, and quick cardiology update have just been uploaded to the blog || link listed in my IG profile || theirvinefamilyblog.com

#evannastrong #evannasspecialheart #prayersforevanna #theirvinehome

On a side note... how freakin' awesome is Evanna's shirt?!! #completelyobsessed😍

shirt c/o @hi_stomastoma
bows c/o @ab.bows

SURVIVIRS GUILT || the heart community continues to loose so many beautiful little souls, and despite the medical advancements, so many still don't make it. My newsfeed is OFTEN filled with a lot of heartbreak due to all the medical support groups I'm apart of, and it can sometimes weigh heavily on me. The hardest ones are those who's journey's so closely echo our own – the ones with very similar heart defects and/or airway complexities. They snap me out of the "blissful and content place" we've created for ourselves the past year, and are always a sharp reminder of our own reality. My heart breaks for their loss and I quickly stop what I'm doing and reach for Evanna. Thoughts then begin to mix between "why is Evanna currently doing so well?" with "are we next?".... and I start to experience what our social worker called "anticipatory grief". While Nick and I have come to terms with our situation and are good at focusing on the "here and now", that doesn't mean we have our "moments" either and let our minds "go there". It's only natural and just something we have to go through on this sometimes rocky, shaky, treacherous, and broken path. [rest in peace Kurtis + Richie ❀] #evannasspecialheart #evannastrong #CHDAwareness

BEDTIME ROUTINE WITH A TRACHED TODDLER || our life is considered very unique + different having a child with a trachoestomy, so people are generally very curious about what life is like behind closed doors. Yesterday marked our 2 anniversary since that surgery that has forever changed our lives, and I decided to film our bedtime routine and what goes into it (ie. nightly trach care). I think what surprises people the most is when we "disconnect" Evanna momentarily as we transport her between the bedroom and living room vents. "Can she breath?".... yes she can! In short, Evanna does breath on her own, but due to a "floppy/weak trachea", requires pressure to help "stent open" her airway. These very quick disconnects are completely fine, safe, and cause absolutely no distress whatsoever (Evanna actually sometimes finds it funny when she accidentally disconnects herself throughout the day lol). FULL 7 MINUTE VIDEO CAN BE FOUND ON THE BLOG ---> direct link listed in my IG profile [theirvinefamilyblog.com]

#evannastrong #evannasspecialheart

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