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In honor of Congenital Heart Defect Awareness Month I am excited to bring to you my conversation with @kierra.irvine. We are speaking about her beautiful daughter Evanna who was born with a life threatening CHD. They have been through an incredible journey and it's not over yet! She's also my first Canadian guest, so that's exciting! She is a great example of living in the face of adversity. #evannasspecialheart #chdawareness #chdawarenessweek

“hardships often prepare ordinary people for an extraordinary destiny.....” I’ve partnered with the organization @tuffsprout for the next year to help raise awareness for children facing extraordinary challenges and even raise a little bit of money for the Stollery Foundation (the hospital we called home for most of 2015). To find out more -- make sure to visit their website to see how you can help. Also, if you decide to make a purchase from their shop --- make sure to enter "Evanna" into the ORDER NOTES, which will ensure proceeds (20% of net profits) from that purchase are directed towards the Stollery Foundation!
#tuffsprout #stollerykids #evannasspecialheart #evannastrong

Wonder what's she's pondering about... Sorry for the slight silence on our end. Between family photos on Friday (yes I'll post a few when I get them back from our photographer), and lots of family coming to visit this weekend, my phone has been somewhat neglected. Evanna is doing relatively well, and they're going to try another home ventilator trial tomorrow. Like I mentioned before, this is our ticket out of the ICU and the key to getting Evanna home.
Evanna has had all of her lines taken out except for her PICC line, which is pretty incredible. She continues to handle her sedation medication wean just beautifully, and she could actually be off 2 of the 3 major sedation medications she's on by mid May!
I can't wait for Evanna to get off sternal precautions again (she's got another 4 wks to go), so we can really start some physical therapy. OT & PT came by and accessed Evanna on Thursday, and I was completely dreading with what they were going to tell me in regards to Evanna's development. Instead they were actually thrilled at what Evanna WAS doing and are extremely optimistic that once we are past some precaution periods (sternal and back to NG feeding), that Evanna will progress very nicely.
On the normal milestone front, Evanna's two top teeth are really coming in, and I'm sure will pop out any day now!
This beautiful headband is from @noxxaz A few of my FAVOURITE Etsy shops sent some very special headbands to Evanna for her birthday. I can't wait to put them on Evanna and show them off! She's definitely the best dressed baby in this hospital! [Rest of this status has been posted in the comment section below]

Got pictures back tonight from our photographer, so I thought I would share one right away!

#GuenardPhotography #EvannasSpecialHeart #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

I feel like Evanna can never catch a break. Just a few days ago, our "problem list" was slowly starting to shrink and I could envision home, but now it feels like a mile long given the last 24 hours. I rarely get a phone call from the hospital, but last night around 2am we got one. So what's going on? Well, Evanna has a few infections brewing again, and it's from multiple places. First is from a urine culture that they did in Edmonton before we left came back positive. Secondly, and MUCH more concerning is that ulcer/hole at the top of her sternotomy scar and under her trach. Last night the intentivist put a q-tip in it, and it went quite deep. They're worried about it infecting the conduit in her heart which would be just devastating (seriously I can't convey how bad it would be if Evanna's conduit in her heart got infected). They're consulting radiology to see if they should do an ultrasound or CT to check exactly how deep that "hole" is, and we're praying it's not close to her conduit.
Last night Evanna continued to vomit a lot, so they turned off feeds completely. They've restarted them at an very low volume on a continuous rate this afternoon, and we're hoping to do a few small increased throughout the day as tolerated, and hopefully Evanna can keep everything down.

Finally, Evanna is on incredibly high ventilator settings, so much so, that they brought up that if they go any higher, they may have to flip her back over to the hospital vent. They're not rushing into anything, but we will definitely be consulting with Pulmonology today to get their opinion. He CO2 levels are pretty high right now, so between that and her "hole", Nick and I are pretty stressed at the moment. ✖✖PRAYERS PLEASE✖✖ Thank you.

PICU Day 268 || 30.06.2015

#PrayersForEvanna #EvannasSpecialHeart

So I finally did a blog post!! This is the longest I have ever gone without blogging since we started this journey back in October, but I feel a small sense of relief to finally be caught up. While most of the post is straight copy and paste from my Facebook and Instagram updates, I have added some details surrounding the July 1st events and some of the conversations that took place that day. Overall, it's a nice summery of the last 2 weeks, and hopefully I won't get behind again.

Link listed in my IG profile || theirvinefamilyblog.com

#EvannasSpecialHeart #PrayersForEvanna #EvannaStrong

Milestone Alert: Evanna got her very last Methadone dose tonight!! Yeah for no more narcotics 🎉🎉 Tomorrow we begin weaning her Chlonidine -- it's not a narcotic, but it's still a mild type of sedation being used on Evanna. #GoEvannaGo

PICU Day 313 || 14.08.2015

#EvannasJourneyHome #EvannaStrong #EvannasSpecialHeart

While it was done a few times down in the PICU, every morning since we've been on the unit, a new feeding bag is hung up with an adorable design drawn on it for Evanna. I've meant to post about it earlier, but today's drawing is definitely worth a little recognition. I just LOVE our nurses!
Day 332 || 02.09.2015

#AlbertaChildrensHospital #EvannaStrong #EvannasSpecialHeart #PrayersForEvanna

MOST RECENT

“hardships often prepare ordinary people for an extraordinary destiny.....” I’ve partnered with the organization @tuffsprout for the next year to help raise awareness for children facing extraordinary challenges and even raise a little bit of money for the Stollery Foundation (the hospital we called home for most of 2015). To find out more -- make sure to visit their website to see how you can help. Also, if you decide to make a purchase from their shop --- make sure to enter "Evanna" into the ORDER NOTES, which will ensure proceeds (20% of net profits) from that purchase are directed towards the Stollery Foundation!
#tuffsprout #stollerykids #evannasspecialheart #evannastrong

NOVEMBER 9TH |||||| swipe left to see the amazing growth and progress!

Today holds so many emotions -- but mostly of happiness and triumph. After 400 HUNDRED (that's 13 whole months people!!) very long and exhausting days – full of some of our most heartbreaking moments, we FINALLY got to bring Evanna HOME back on November 9, 2015 🏡 I can't even begin to try and explain what we endured physically, emotionally and mentally that year, and it essentially felt like our entire lives were put on "pause" during that time. We got to meet so many incredible people along the way and are so fortunate for the bond and relationships we built with every single intenstivist, doctor, RT, nurse and staff member between both the Stollery and ACH (and always enjoy running into them from time to time and showing her off). Over the last 2 years we've finally been able to play a little "catch up" and experience many wonderful moments, but I still sometimes mourn over what was lost too. It certainly pushed Nick and I to the edge, but we didn't crumble and became an impeccable team (if I don't say so myself). We had to spend a lot of time apart while Nick fulfilled his duties as a husband, father and employee and continued to work full time back here in Calgary and I stayed in Edmonton with Evanna, but it only made our relationship stronger.

Today's anniversary also makes me feel a little defeated in a (very) small way. While we've come so incredibly far and experienced such a great year of growth and development, it also highlights the mountains we still have ahead of us and feel like we're "starting all over again" in a sense when I think about our next surgery(ies) in California next year. Traveling to a completely different hospital in a completely different country is just slightly overwhelming when I think about, but know we'll figure it all out -- just like we always have.

#evannasspecialheart #evannastrong #theirvinehome

//////////// "young fighter" --- while completely unintentional (Nick and I were really just trying to find a girl name we BOTH liked lol), we later found out (like AFTER she was born and in the ICU) it was actually the meaning of Evanna's name and just love how absolutely perfect her name truly is.

Over the next year or so (so I will be posting about them from time to time), I'll be partnering with the organization @tuffsprout that's based up in Edmonton to help raise awareness for children facing extraordinary challenges and even raise a little bit of money for the Stollery Foundation (the hospital we called home for most of 2015). To find out more -- make sure to visit their website to see how you can help. Also, if you decide to make a purchase from their shop --- make sure to enter "Evanna" into the ORDER NOTES, which will ensure proceeds (20% of net profits) from that purchase are directed towards the Stollery Foundation!
#tuffsprout #stollerykids #evannasspecialheart #evannastrong

HEARTIVERSARY /////// though Evanna has already undergone 4 open heart surgeries to date, we will always "celebrate" and recognize that very first one that took place now 3 years ago on October 6, 2014. I can honestly say we had absolutely NO idea as to the journey that would follow and the absolutely insane ups and downs we'd endure during that initial 13 month admission. We were pretty optimistic going into that very first surgery due to how well Evanna thrived those first handful months we got to spend with her at home after she was born, and truly thought we'd be home well before Christmas that year.
Despite much preparation for what we thought would happen postop, we were definitely naive to the major left turn our "heart journey" would take and the sacrifices our family would be asked to make along the way. While Evanna has come SO FAR since then, and we have learned so much along the way (that we "can do hard things"), I'm sort of at a loss for words (essentially both heartache + grateful at the same time) when I think about her upcoming 5th open heart surgery down in California at LPCH/Stanford – which is slated to be her biggest surgery to date. While I would never wish our situation on my worst enemy, I'm continually grateful for all the blessings we've also received along the way. I'm speechless when I think about all the love and support we CONTINUE to recieve and in awe of the huge impact Evanna has made in the world. I haven't been great at "showing it", but believe when I express just how amazing she's been through all of this. Evanna is seriously the most happy and content little girl I've ever met, and it boggles my mind how easy going she continues to remain despite everything she's been through.
I feel truly honoured to be her mother and despite how emotionally + mentally draining it can be – will continue to cross valleys, swim oceans and move mountains for her (which we kind of are when you think about it lol). #evannasspecialheart #evannastrong #heartiversary #chdawareness :::::::::::::::::::::::::::::::::::::::::::::::::::: #HeartMom #HeartWarrior #HeartHero #HeartBaby #chd #22q11 #22q #DiGeorgeSyndrome #PulmonaryAtresia #MAPCAs

GOODBYE EXERSAUCER /////// yes, this is absolutely considered a huge deal in our household and a very bittersweet moment to say the least. We first introduced the exersaucer back when Evanna was 1.5yrs old and she was still in hospital -- probably a month prior to discharge (so..... exactly 2 years ago this month). While it was a bumpy start when we first started putting her in it (as it generally is with anything new we introduce to her), it definitely became a vital part of her recovery and development over the past few years. Our previous Physical Therapist even stated that while from a professional standpoint she's against overuse of exersaucers, she saw the huge benefit it was (along side her standing frame of course) for Evanna in learning to weight bare. It provided Evanna this sense of safety (something that's super important for her personality wise), yet lots of freedom to learn to stand and build the strength she needed to do so.

Technically she's outgrown it for quite sometime now, but it's still been a favourite toy of hers and a source of great entertainment..... however, it's become increasingly unsafe to use the heavier Evanna has become 😂 so last wk Nick broke it down and we're slowly adding it to our recycling bin (as it's in no condition to pass down to baby brother lol). Just another accomplishment and step forward for Miss Evanna!

#evannasspecialheart #evannastrong #evannasroadtorecovery :::::::::::::::::::::::::::::::::::::::::::::::::::: #yycblogger #yycliving #calgary #calgaryblogger #yycfamily #yyc #yeg #trachbaby #toddlersofinstagram #littleandbrave #candidchildhood # #thehappynow #canadianblogger #HeartHero #CHDAwareness #CHD #HeartWarrior

MEDICAL UPDATE ////////////// in case you haven't had a chance to read my latest blogpost (clickable link available in my IG profile), I provided a few little updates on some recent milestones Evanna's been reaching over the past few months. Most notably is we were seen in vent clinic back at the end of August and were able to wean her home ventilator settings once again -- to a PEEP of 6 🎉🎉🎉. I know that number doesn't mean much to many, but essentially after almost 3 years (October 2014) – we went from being on some of the highest ventilator pressures you can be on, to now being on very low/minimal ones – and continuing to get closer and closer to decannulation (taking the trach out). However, with news that we're heading to California in the near future for a very big open heart surgery (10+ hrs), the Respirologist wants to somewhat put vent weans on the back burner as we refocus our attention to cardiology. That said, he still wants us to work towards sprinting Evanna off the ventilator during all waking hours at our discretion, as he believes that will be the best way get Evanna strong and ready for this very intense surgery Dr. Hanley is proposing.
The whole Respirology team is absolutely thrilled about our California news, and any cardiac improvements will just translate to respiratory improvements ☺️ #evannastrong #evannasspecialheart #evannasroadtorecovery ::::::::::::::::::::::::::::::::::::::::::::::::: #yycblogger #yycliving #calgary #calgaryblogger #yycfamily #momswhoblog #yycmom #calgary #calgaryblogger #specialneedsmom #missevanna #yyc #trachbaby #chdawareness #MommyBlogger #22q #canadianblogger

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 😂). 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

FIRST DAY OF PRESCHOOL ///// earlier this year, we began the process of getting Evanna enrolled into early intervention preschool here in Calgary. Alberta Education provides special funding called "PUF" to help children like Evanna who had a rough start and will need a lot of help integrating into the school system. Based on her age, we had to start this year in order to benefit from all 3 years that she qualifies for (the maximum). While I initially didn't think she was ready when we began this process, Evanna has just blossomed beautifully she over the summer and believe some added daily structure is just what we need and couldn't come at a better time. We went with an organization (as there are several to choose from) that came highly recommended from both local medical moms and the hospital, as were told this particular organization specializes in super medically complex children and very familiar with the trach population.
At the moment, the program will be HOME BASED for Evanna's benefit, so that means a private Developmental Specialist comes to our house every afternoon with the option to attend group therapy (ie. music class, etc) on Tuesdays. So excited to see what this year will hold for Evanna and continued development ❤️ #evannasspecialheart #evannastrong #gritcalgarysociety #yycmom

///// how could I could not move mountains for her?
THANK YOU so much for the outpouring of love and support over this past week. I know so many people were anticipating an answer from Dr. Hanley/Stanford Children's Hospital almost as much as we were, and truly just want the best for Evanna. It definitely took way longer than expected to get to this point (so thank you for your patience?? lol), but I suppose it's true when they say "good things come to those who wait". I wrote a new post that contains some additional details that didn't make it into last weeks post (I seriously could not write that post fast enough to share with everyone lol), and revealed a few "tender mercies" that goes to show the incredible timing of all this ❤️ clickable link available in my IG profile || theirvinefamilyblog.com

#evannaheartscalifornia #acaliforniamiracle #evannasspecialheart #evannastrong

#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

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 🎉🎉🎉). 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 ☀️ 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 🎉🎉 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 🎉🎉 (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 — 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 ||| it's been a roller coaster of emotions this past week with the absolutely heartbreaking passing of @somerpickel's daughter Avelyn (Evanna's "MAPCA sister") a few days ago, and have been beside myself with tears and grief since receiving the news. It's just hits way too close to home and am I'm completely devastated for Somer and her husband Sean right now. In the blog post, I've briefly describe the extremely difficult journey this family (that I love so much) has been through over the past year and a half, and linked to their YouCaring account that was created to help pay off the accumulated medical bills and now added funeral costs. Thank you ❤️ I also added a small respiratory update from Evanna's Complex Airway Clinic appointment that she had last Wednesday, and the logistics of how we're getting Evanna up to Edmonton TOMORROW for her HUGE cardiac cath Wednesday morning [clickable link available in my IG profile]. #livelikeavie #evannasspecialheart #mapcas #evannastrong #theirvinehome

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, to feel some peace and reassurance during this time, for a safe Cath, and 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 (🎉🎉🎉), 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 🎉🎉🎉 || 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

|| T H R E E 🎉🎉🎉 || yesterday this little girl turned the big [3] and we celebrated but throwing a little party that was all things strawberry -- perfect for this darling redhead.
Wrote a few thoughts and some things I want to remember up on the blog, so click the link in my IG profile or head to theirvinefamilyblog.com for more. //// adorable white bows courtesy of @ab.bows, who just launched their newest release yesterday ❤

#theirvinehome #missEvanna #evannastrong #evannasspecialheart

AND WE'RE DISCHARGED 🎉🎉 || by far our happiest ICU admission to date, and I'm seriously on  c l o u d  n i n e  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 || 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

We certainly don't get to pick the challenges we are dealt but we do know that the challenges will come. Sometimes we need to be in preservation mode to survive, but it's important to always believe there can be a lightness again. There is hope. There is joy even in the hardest of times. @kierra.irvine #evannasspecialheart #chdawareness

In honor of Congenital Heart Defect Awareness Month I am excited to bring to you my conversation with @kierra.irvine. We are speaking about her beautiful daughter Evanna who was born with a life threatening CHD. They have been through an incredible journey and it's not over yet! She's also my first Canadian guest, so that's exciting! She is a great example of living in the face of adversity. #evannasspecialheart #chdawareness #chdawarenessweek

A few weeks ago, I stated that due to recent events I wasn’t able to plan much for Congenital Heart Defect (CHD) Awareness this year. Well the morning after that particular blogpost went live, my sister Danika sent a text to ask if she could run a few ideas by me, as she wanted to raise a little awareness herself, and told me to call her when I had a moment. When I finally called her back, she asked if she could write a post on how CHD has personally affected her, and give some perspective as a family member. I immediately loved the idea and told her to get it to me as fast as possible. With my sister's permission, I've published what she wrote up on the blog and sharing some of the beautiful words that she has said [link in my IG profile] theirvinefamilyblog.com {if there is one thing I've learned over the past few years, it's that Nick and I come from very supportive families who have continued to love us and Evanna despite everything we continue to endure, which unfortunately isn't the norm for many families of complex children. we are so incredibly blessed, lucky + fortunate for the family that surrounds us ❤} #chdawareness #chdfamily #evannasspecialheart #evannastrong #heartmonth

|| H A P P Y H E A R T  M O N T H || with the best intentions of raising CHD Awareness this month, the truth of the matter is BECAUSE of Evanna's congenital heart defect and everything that's been going on since her latest open heart surgery, I'm just barely keeping my head above water right now (hence the lack of posting since our discharge). We are currently in the thick of our battle with countless appointments, checkups + monitoring, that I've been unable to commit any CHD Awareness campaigns BECAUSE how much it's affecting our lives right now.

With that said, I've got just ONE contest for you guys. I've hooked up with @mightywarriordesigns to giveaway a $20 shop credit. They are also donating $2 from each sale generated from their "heart collection" to the Stollery Foundation throughout the entire Month of February.

How to ENTER ////// 1⃣ follow both @kierra.irvine + @mightywarriordesigns 2⃣ tag friends! Each tag will equal an entry.... so the more tags, the more enteries you will have ❤ Thank you so much for your support. xo

#CHDAwareness #EvannasSpecialHeart #HeartWarrior #HeartHero #HeartMom #EvannaStrong #MightyWarriorDesigns #Giveaway #Shopsmall #CanadianMade

|| happy Sunday ❤ || things remain pretty quiet over here.... but that's all about to change starting this week! In the meantime, I've written a little review of our 2016 (and reveal what Nick and I have been working on behind the scenes both in-between and during hospital admissions, and why we've been even busier then you can imagine lol), and look back at all the "little curveballs" that came our way last year.
I then talk about what we have on the docket for 2017 and why we're so incredibly nervous as we move forward into this year.
The blogpost is now live and the link can be found in my IG profile 😘

#evannasspecialheart #linkinprofile #theirvinehome #evannastrong #hospitallife #trachlife

|| #cousinlove || all the cousins in their adorable Christmas attire. There may have been many tears and some shouting involved in the capturing of this photo...but it was worth it lol.

#christmas2016 #evannasspecialheart

|| christmas 2016 || I fully intended to mail out Christmas cards this year.... BUT we've been a little busy the last few months....so this will have to do. Merry Christmas from our family to yours 🎄

#evannasspecialheart #christmas2016

|| it’s a christmas miracle 🎄 || though we were suppose to be admitted until December 27, our awesome medical team pulled some special strings, and arrangements were made so we could be D I S C H A R G E D yesterday! We were fully committed to be in hospital through the holiday weekend – but on Thursday, the nurse practitioner came into our room and asked how we felt about going home early if it could be done. We immediately agreed, and plans were quickly put into motion (so though I didn’t talk about it in my last post, I can’t express how busy we've been trying to get all our ducks in a row in order to pull this off). Because Evanna is on TWO IV antibiotics for another 4 days, they’ve arranged for the HPTP homecare nurses to come out to our house every day and essentially do 2 line changes in order to properly administer the antibiotics she’s on (apparently she was the LAST child they added to the holiday weekend homecare list). Though we didn’t complain about being in hospital during Christmas, we are incredibly grateful that our medical team would go to great lengths to ensure we got to spend Christmas at home as a family (and away from all the icky viruses going around). So much to be grateful this holiday season ❤ #evannasspecialheart
#evannastrong
#prayersforevanna
#christmas2016

Last week I was lucky enough to meet this family and capture there journey. Evanna was 3 days post op from her 4th open ❤️ surgery. Thank you again Nick and @kierra.irvine #writeyouonmyheart #evannasspecialheart #evannastrong #chdawareness #stalbertphotographer #yeg #yegphotographer #stollerychildrenshospital #themonochromaticlens #heartwarrior

|| postop day 7 || chest tube is finally OUT, and some much needed cuddles were accomplished today. We think Evanna is experiencing some slight withdrawals now that we've discontinued her hydromorphine, so it wasn't all fun and smiles this afternoon like we had hoped for (not to mention the endless linen changes). She's been throwing up all day – but we don't think it'll last long, being she was only on sedation drugs for less than a week.

The cardiologist on call this weekend happens to be one of our favorites here in Edmonton (doesn't hurt that her husband is one of our favorite intensivists too!), and she couldn't believe how amazing Evanna recovered after this surgery -- as she definitely remembers our last open heart surgery and the long hospital admission that followed suit. While assessing her, the cardiologist marveled at Evanna's very content nature and overall calm demeanor (not to mention how big she has gotten) and commended Nick and I on how well we've done as parents.

Talks of transfer are starting to happen, and the team has already been communicating with Calgary as we currently aim for Tuesday. We may not be discharged home by Christmas (due to the double IV antibiotic treatment course she'll be on until at least the 26th), but at least we'll be back in Calgary surrounded by family.
Thanks again to @laramietraczphotography for returning today to capture a few more moments of this admission. Can't wait to share the rest later ❤

#evannastrong #evannasspecialheart #prayersforevann

|| postop day 5 || it's been a bit of a rollercoaster over the past 24hrs – but overall, Evanna is still doing "well". Things are happening somewhat at a snail's pace, and it's times like this that I miss the PCICU – which has the ability to make changes more frequently and at a much faster rate. I'm trying to remind myself that Evanna is doing fantastic when you take last year into consideration, but it doesn't make the situation much easier at the moment.
Evanna's chest tube is still putting out a lot of blood (well, technically it's "serosang") with no signs of slowing down, and so the earliest we think it can be removed won't be til at least Sunday (if not longer....). We believe the biggest culprit is how incredibly fluid overloaded Evanna currently is, and so one of the ways for all this fluid to kind of "escape" is through her chest tube (which to be fair, is much better than accumulating in her lungs). Evanna was also quite miserable all day yesterday and into the night (retching and rolling around the bed in some pain), so I had the cardiology resident paged and we came up with a new game plan around midnight. We flipped Evanna from oral to IV lasix (a diuretic) and gave her two suppositories yesterday. Basically we are trying to clear Evanna of poop and move fluid off of her as quickly as possible (though because we're not in ICU, they won't go as quick as this mama would like....). Since then, Evanna has had several bowel movements and 3 good diapers full of pee, so my anxiety level is dropping and I'm starting to calm down as she has been much more settled today.

On the plus side, they removed her pacing wires this morning and she got a PICC line just after 4pm, so I feel like we've still had a very productive day despite the chest tube delimma.
Prayers that we can continue to clear/dry Evanna out (though not too dry, as her heart requires a "fluid preload" 😉), and the chest tube will slow down so the team can safely and successfully take it out ///////// #prayersforevanna #evannasspecialheart #evannastrong

|| #aprayerchainforevanna || Evanna was taken back into the OR for her 4th open heart surgery earlier this morning -- making this her 10th surgery to date. She woke up super early and was literally bouncing around all happy as she rode down on the stretcher (which thoroughly entertained the operating room team). While this situation can somewhat feel routine to Nick and I, it honestly gets harder and harder to hand her over to the surgical team for a very invasive and major procedure. The risks become greater and greater everytime they have to "reopen" her, and I definitely found myself getting a lot more emotional and scared this morning then I usually allow myself too.
So please please join us in a little prayer chain for Evanna and I'll update when I can ❤

#evannasspecialheart #evannastrong #prayersforevanna

|| still in Calgary || I won't go into details right now, but I just got off the phone with the head of the Stollery PCICU (who also happens to be our primary intensivist) and made my concerns about this latest surgery bump well known (the one that was ORIGINALLY booked for November 23.....). There's a time and place for patience and grace, and then there are moments that call for the mama bear to come out and advocate for my medically fragile child ✌[....fyi NEW** surgery date is December 12th]

#evannasspecialheart #prayersfortiredandstressedparents

|| EVANNA STANDING 🎉🎉🎉 || as promised, here's a little look at some of our progress lately. At 2.5 years old (which is why this is such a big deal), Evanna can now go from sitting on our knee to standing up against the couch and for significant amounts of time. We work at this everyday, and I hope this will lead to taking some steps in the very near future ❤ #evannastrong #evannasspecialheart #evannasroadtorecovery #milestonealert

|| this photo is just too adorable NOT to share || first off, THANK YOU for the endless birthday wishes this past week. I celebrated by going with my best friend to Vancouver/Seattle over the weekend and got home late Tuesday night. Nick took me out for dinner last night and I have some additional plans for later this weekend (yes, I'm one of those ppl who likes to stretch out their birthday lol). Nick and I are now busy with work obligations, and getting loose ends tied up before next week's surgery in Edmonton.

Today after still not hearing from Calgary’s PICU, I finally called the unit this morning to inquire the details of our elaborate transfer to Edmonton on Monday morning. I assumed they would have us stay the night before the transfer, but the team informed me that we don’t have to come until morning of – which makes me super happy that we can enjoy one more night in our own beds.

Basically the next few days will be filled with packing (or “repacking” in my case), work, additional birthday fun, lots of physio (I need to post a video of Evanna's awesome standing skills as of late asap), and squeeze in as much quality family time that we can. Please keep Evanna in your prayers that she remains healthy and strong over the next week in anticipation of Wednesday's surgery ❤

#evannasspecialheart #evannastrong #theirvinehome

[HAPPY HOMEVERSARY] Today marks a truly special + joyous occasion, because exactly one year ago – we finally got to bring Evanna home for the first time in over »» 400 Days «« As you can physically see, Evanna has come SO far over the past year and just absolutely thrived since coming home. A few personal thoughts and pics have are now live on the blog /// theirvinefamilyblog.com /// link listed in my IG profile

#theirvinehome #evannasspecialheart #evannastrong #evannasroadtorecovery

|| look who hung out with mommy upstairs while purging this little girls closet today? || Alright, so I have two big things I would like to announce -- first is we have a surgery date for Evanna's 4th open heart surgery on [NOVEMBER 23rd]. They have a bed set aside for us in the PCICU at the Stollery on the 22nd, so I believe we'll be admitted down here at ACH on the 21st and flown up by the transport team first thing the next morning.

Secondly, is another milestone we have "somewhat" finally achieved. To DATE, Evanna has spent a total of 457 nights in hospital, however that number will obviously continue to grow. Thankfully our admissions of late have been on the more manageable side and the moment Evanna bounces back and is stable, we get to take her home. This MEANS (at age 2.5) that this past month we have reached a point of being home as many nights that we've spent in hospital. Unfortunately our upcoming admission/surgery will make us hang around this "50/50" point for a little while, but it's better than "in hospital most of her life" -- wouldn't you think?? #missevanna #evannasroadtorecovery #evannasspecialheart

|| housebound || about 6 weeks ago, I experienced a "trigger moment" where I suddenly felt completely overwhelmed by our situation and the implications that come with having a medically fragile child. For the first time ever, tears streamed down my face while writing a post in regards to an incredibly sensitive topic. I poured my soul in what I hope to be a series of important subjects that I've become passionate about and create awareness for.
This post was initially published by Milk + Confetti (@milkandconfetti) -- a local community blog that I am now a contributor for (so if you're a Calgary mama, I highly recommend following them), that is now live on our family blog.
Thank you all for your continued love + support as we continue to endure this long and profound journey #theirvinehome #evannasspecialheart #evannastrong [theirvinefamilyblog.com ///// link listed in my IG profile]

This little warrior, Evanna, is home. 🏡 Unfortunately it is only temporary because in a month she will have her 4th open heart surgery. Let's fight with her, okay?!? 💕💕💕
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#childhoodcancerawareness #evannastrong #evannasspecialheart
#childhoodcancer #pediatriccancer
#morethan4 #kidsgetcancertoo #cancersucks #leukemia #trachbaby

|| back to baseline || well I'm pleased to say that we are completely back to baseline and Evanna has resumed all her normal silly shenanigans to say the least. We heard back from Edmonton this evening about what they discussed during cardiac conference today, and their recommendations + somewhat "big plans" for the next few months.... but I'll save those details for another day.
Last night we changed one of Evanna's IV antibiotics to oral, and will begin the HPTP process tomorrow which means we can hopefully be discharged later on this week once Nick and I get our IV pump training (for the other IV antibiotic Evanna will remain on for the next several weeks). SLOWLY getting caught up with responding to all the loving messages, texts and wonderful comments. You guys are truly the best ❤

#prayersforevanna #evannastrong #evannasspecialheart

|| “JUST A COLD” || words that are so often innocently spoken. While Evanna has had mild colds in the past – this one definitely threw us for a loop, and shows just what “a little cold” can do to a medically fragile child like her. It resulted in areas of Evanna’s lungs to collapse and the inability for her to maintain proper oxygen saturations. Without a doubt, I know that if it weren’t for Evanna’s trach allowing a way to provide extra pressure to help open things up, she would have had to been sedated + intubated to safely support her through this cold.

There’s been a few interesting differences between this admission compared to the past, and it’s both made a few things easier and a few things extra hard. Toddler traits are definitely poking through, and it shows in how the we have to handle and treat Evanna at this unique age. She’s certainly gotten a lot stronger, and while that’s definitely been a good thing stamina wise – it also makes it difficult for when we have to things like daily pokes for blood and bag her to recruit areas of collapsed lung. For the most part Evanna remains easygoing and laid back – but she definitely fights us more when we’re doing something that she doesn’t like…. and we’re at an age that you can’t reason with her either. I took this photo while they were doing a “lung recruitment” yesterday, as I thought it was so unique to watch Evanna react to getting “bagged” as a trached toddler (something most people would never see). It was slightly amusing to observe the staff try and cater and do things on Evanna’s terms so that she will cooperate with them and not resist procedures + therapies. #evannasspecialheart #evannastrong #prayersforevanna #albertachildrenshospital

|| BACK IN PICU || so while we think we finally have a handle on this bacterial infection, we're now dealing with enterovirus as well (aka "the common cold"), and bought ourselves a ticket back to ICU (oh the joys of hospital acquired illnesses....). While symptoms started last week (in the form of snotville), Evanna started to have trouble yesterday morning and was struggling to keep her oxygen saturations up. Once we began to surpass Unit 2's threshold, it was decided that we needed to transfer back down to ICU in order to better support Evanna and was brought down yesterday afternoon. We're currently on 12L of oxygen (😱), increased her ventilator peep to 14 (!!!) and doing lots of bagging to help rerecruit some areas of her lungs that had collapsed. Overall Evanna is still doing well (I know that's a weird thing to say considering where we are, but once you experience the criticalness of last year, we just have a very different perspective on what sick actually looks like) and is somewhat completely unfazed by this whole ordeal.

We have finally gotten 1 negative blood culture back and booked a PICC line for Friday in anticipation of 2 more negative cultures this week (so prayers for continued  negative cultures). I believe the plan is to hang out in PICU until Friday, get the PICC line, and if we're doing well from a respiratory standpoint, go back to floor, get IV training and take Miss Evanna home sometime next week. *fingers crossed* //////////// It's been a busy admission to say the least, as it's given me a chance to see and talk with a few specialist's that we normally have to wait months to see – and discuss a few big things that we are working on this year to continue to improve Evanna's health. A silver lining if you will. Just wanted to explain why it's taking more effort than normal to write and post these updates on a consistent basis ❤ #evannastrong #evannasspecialheart #prayersforevanna

|| ENDOCARDITIS || well the bad news just keeps coming our way. The infection is STILL not clearing, and so the team believes that her hardware (the conduit + bovine valve) are infected and we are dealing with full on Endocarditis. We have a few plans moving forward, but they all still come down to the fact that we have to clear this infection first.
They will do an ECHO (ultrasound of the heart) tomorrow to see if they can see anything, but even if they don't see a vegetation – that still doesn't rule out the diagnosis due to how far out we are since we've started on antibiotics (Thursday morning), but labs are still showing bacteria growth. For reference, the bacteria that we're dealing with is pseudomonas -- which is normally the bug we see in her trach. It's generally not a big deal when it colonizes there, but it's definitely not a good thing when in it's in her blood stream (they actually were shocked to see pseudomonas on the lab results, as it's not one commonly found in blood). It's also not a bug they normally deal with in regards to Endocarditis either, so it's definitely left a few doctors scratching their heads on how to proceed.

We are literally in a "hurry up + wait" type situation. We now know that we are facing quite the lengthy IV antibiotic course, but they can't even place a secured PICC line until we've cleared the infection first. There is even a small possibility that we may have to go to Edmonton for another open heart surgery to replace the conduit + valve -- but again, they won't be able to do anything until they clear the infection first (as the new hardware would just get infected). We're not at the "Edmonton option" yet, and we're still hoping a good long dose of IV antibiotics will do the trick, BUT it's still a topic that has been discussed and an option on our table.
We came in thinking we'd only be in for a few days – a week max, and we are now facing the possibility of a few months (with right now the goal of 5-6 wks if we can get away with just antibiotics alone). It's going to be a long month to say the least.... so lots of love + prayers would be greatly appreciated.

#prayersforevanna #evannasspecialheart #evannastrong

|| sunday update || let's start with the good news -- Evanna is completely back to baseline and has been doing great since Saturday morning. We're literally just hanging out as if we were at home, and if we didn't have a foot IV, we could probably resume our physical therapy activities too (ie. standing & weight bearing). As for the bad – we haven't gotten a negative blood culture yet, and so we're still waiting on that piece before we can make an antibiotic plan (for how long, and when we can switch from IV to oral). We did bloodwork today, so we are PRAYING we see a negative result after 24 + 48hrs ////// fingers crossed ////// #prayersforevanna #evannastrong #evannasspecialheart

|| 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

|| oh EVANNA || we experienced quite the long evening last night, and so this mama is a little tired to say the least. For the past 24 hrs, Evanna has been requiring anywhere from 5-8L of oxygen from her normal baseline of 4L. Though she had a fairly decent day with Nick yesterday, when I came home from work, I immediately could tell something was wrong. Evanna’s respiratory rate was in the high 50s and even reading at 60 on the ventilator (that’s a breath every.single.second). Her heart rate went as high as the 160s, she was extremely warm to the touch, and overall we were having a really hard time keeping her oxygen saturations within an acceptable range (which for Evanna is 75-85). We of course called the cardiologist on call, and while she said we could definitely bring her into emergency, she also stated it was up to us and what we felt was best (they trust our instincts as her parents...and the fact that Nick is a Paramedic doesn’t hurt either). It’s always such a hard decision to make, because no matter what reason we bring Evanna in for, based on her diagnosis and extensive history – it’s an automatic admission for us (for precautionary purposes). It becomes a struggle to us on what’s the greater risk – keeping her home where she could possibly get worse, or take her into hospital, where we have to deal with endless blood pokes, IV’s and even pick up something WORSE in hospital (which has happened in the past). Our home is equipped with many powerful tools – and essentially we’re a “mini hospital” that allows us to treat Evanna at home and avoid the hospital as much as possible. However, we have our limitations (and unfortunately Evanna’s heart can cause her to deteriorate faster than the average child) and it becomes an internal struggle trying to figure out what our threshold is and at what point, do we need to seek more intense treatment. For us – the extra oxygen is definitely a big limitation. [CONTINUED BELOW IN THE COMMENTS ↓↓↓]

|| #ontheblog || earlier this year, I did a spotlight Q+A for a another blogger. I spent a fair amount of time thoroughly answering her questions, and so I have now "reblogged" the post on our family blog. I give a little synopsis of our journey thus far, what is the hardest part of our unique situation, how we maintain balance and emphasis the importance of "self-care". If you're interested in reading, head to theirvinefamilyblog.com [link listed in my IG profile] 📷 @jennieguenard #guenardphotography #theirvinehome #evannasspecialheart #evannastrong

IMPORTANT UPDATE || alright, I've decided to be open and honest about a few situations currently going in right now -- and I'm basically "laying it all on the table". Things are still not rainbows and butterflies with Evanna and her health, and while we've already climbed some pretty big mountains, the truth of the matter is we are currently standing at the base of several more mountains and have no idea how it will all play out. I'm advocating for some pretty big things that will either improve + enhance Evanna's quality of life and her prognosis, OR we may not get the answers we're looking for and face some pretty hard truths + realities.
I've written a really big blog post explaining it all and why we are in need of some major prayers. We have been the recipient of so much love over the past 2.5 years, and so I feel like I owe it to those who love Evanna and our family about what's going on and keep you guys in the loop. ///////// Link listed in my IG profile || theirvinefamilyblog.com

#prayeraforevanna #evannasspecialheart #evannastrong 📷 @jennieguenard

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