Sunday, April 30, 2017

Evanna is [T H R E E]



I’m generally good at keeping my emotions in check and remain level headed.... but then something will trigger and I become this big blubbering mess unable to stop the tears from flowing. Sometimes it tears of happiness… but other times it tears of sadness too. Despite the small level of fear Nick and I live with in regards to Evanna and her health, I'm happy to say that -- 


Evanna – you are officially T H R E E years old!


Another absolutely amazing milestone… and I’m almost having a hard time wrapping my head around it! You have such a personality right now, and it I could sum it up in just a few words -- they would be: calm… yet feisty, content… yet strong-willed, and easygoing… yet determined. It’s crazy that you can be one thing and then another, but allow me to explain:

CALM – Despite hospital admissions becoming shorter and further in-between (such an amazing accomplishment in its own accord), we continue to get tons of compliments on your overall “calm demeanor” and medical staff are always so surprised at well-behaved you remain while getting accessed or going through a procedure. Blood draws are starting to get a bit harder as you get older, but you still take it like a champ!

FEISTY – let’s just say that you would not be here today if it weren’t for this quality. You are one fierce little fighter, who continues to knock one curve ball after the next out of the park and almost make it look a little easy. There's a reason I often use the phrase #EvannaStrong in my updates. 

CONTENT – whether it’s playing for hours and hours by yourself or simply satisfied to sit and watch movies on your tablet… you my dear, are just a dream. While you've started to realize there's a world outside our 4 walls, you're the happiest at home playing with your favorite familiar toys with just mommy or daddy (or one of the nurses) within arms reach.

STRONG-WILLED – while this is a great quality, it sometimes makes certain tasks harder than it needs to be. We definitely see this come out the most during occupational therapy (but if we're going to be honest -- feeding therpay, physical and speech). We are trying so hard to expand your world, but no matter how hard we try, you almost shut down and not entertain new exercises and toys. You know what you like, and nothing else matters! While I hope you never loose this quality, I do hope that as you start to understand the benefit of these activities and be a little more open-minded to try new things. xo

EASYGOING – it’s amazing that despite everything you go through, how practically unphased by it all you remain. I do sometimes wonder if this will be something that will change as you get older, but I still feel like as you begin to comprehend more and more, you’ll still remain somewhat easygoing and continue to go with the flow as we’ve always done so in the past. You've been handed a rough set of cards, but continue to take it all in stride -- I couldn't be more prouder to be your mom than I already am!

DETERMINED – when there's something you want, you won't stop til you get it. Whether it's trying to gain our attention, play with a certain toy, watch a movie, or dictate how a medical task is completed. While you're very good at getting your nightly trach care done, lying perfectly still for ECHO's or receive breathing treatments (ie. that we did to treat that horrible cold that landed us in PICU last October) -- it's still done on your terms. You'll behave wonderfully for not so pleasant medical procedures, but only when it's done under favorable conditions... ie. you get to watch a move on the tablet. But hey, we'll take what we can get, and are happy to do whatever it takes to keep you happy. You endure more than most 3 year olds do, but take all those expectations that have thrusted upon you with so much grace and dignity -- and couldn't be more proud and honored to call you ours.  

 ////// things I want to remember ---
˔ you always wake up so incredibly happy and excited, it's infectious - wish I was that excited to wake up in the morning lol.
˔ despite your current lack of speech, you definitely know how to tell us what you want or express when you're either happy or upset.
˔ you do this cute little happy bounce when we've figured out what you want and we comply.
˔ brushing our hands aside is generally how you tell us no - but it's so adorable nonetheless.
˔ you get so excited when we pack up and are getting ready to take you out, and when we pull into the garage arriving home.
˔ your favorite movies currently consist of Frozen (still!), Monsters Inc (probably your #1 right now), Lilo & Stitch, Finding Nemo, Tangled, and Lion King if you're in the mood. It's really hard to "get you onto new movies", but I keep trying in an effort to save our sanity.
˔ while you're becoming less reliant on soothers, you always have "a favorite", and it always seems to change monthly lol.
˔ the "if you're happy and you know it" game is your favorite thing to do with your dad.
˔ I always gets asked if you tug or pull on your vent tubing, but the most you ever do is pick up and move the tubing if it gets in the way of your playing. It's kind of funny to witness.
˔ still doesn't happen very often, but once in awhile, you'll finally give in and give me a quick cuddle. Just a few days ago, your dad figured out that if he uses a blanket as a pillow (as he doesn't have boobs), you'll cuddle with him for a few minutes too.
˔ you absolutely love getting up on my lap and insist we play "peek-a-boo". you've even begun to dictate when I should cover my eyes, or uncover them to say "peek-a-boo".



Right now, things are GOOD. Close to perfect that we haven’t experienced in quite some time (which I would pin point to the summer after you were born). We’re essentially able to live “season to season” right now, and it’s a marvelous feeling to say the least! We’re very busy, but enjoying a lot of normalcy lately – and the future is starting to look very bright. We’re gaining some real momentum, and the flow of good news about your health right now has us feeling “cautiously optimistic”. I still have moments where I grow afraid of when this "period" will end, but I try my best to quickly shake those feelings away and enjoy the here and now while we can.

You continue to be our greatest blessing and life lesson… all rolled into one really cute package, and we love you so very much! 

[More pictures of Evanna's "Strawberry Shortcake" themed birthday party will be posted when I do my next update in a week or two]

Sunday, April 23, 2017

|| on c l o u d n i n e + Easter ||

April is off to a fantastic start – and I really hope this is the beginning of a positive trend! I'm over the whole “when it rains – it pours” bit that we’ve been enduring for quite some time, and so I'm really looking forward to how the rest of this year will continue unfold.

Of course I’m currently referring to our mini ICU admission and fantastic bronchoscopy results that took place a few weeks ago – but I can’t emphasize enough how this procedure, and the results that followed were such a huge deal! Because my social media updates on Instagram and  Facebook were pretty detailed and thorough, I’m going to save myself a little bit of time and just copy + paste them here – –



[INSTAGRAM UPDATES]

April 5, 2017


BRONCHOSCOPY RESULTS || 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 “27/12”. The number “12” representing the level on PEEP (pressure) Evanna requires to help “stent 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 🎉🎉 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.


April 6, 2017

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).

Since our discharge, things have actually been quite low key and don't have much more update on. The Stollery has called and confirmed that we're slated for an early June Cath date (*cue sigh*), and I will confirm that everything is in order at our next cardiology appointment that we have later this week.

Our next Complex Airway Clinic appointment has been scheduled for May 10th (which is just a few weeks away)! Unlike past CAC appointments that are generally for monitoring and check-up purposes only-- this will essentially be an "all day" thing (which I'm already mentally preparing for), as the respirology team plans to do more ventilator decreases! Hello #ventfreesummer (if I say enough, then it just has to happen, right?)!! At the moment, I don't know what those decreases will entail (ie. additional PEEP decreases or experimenting with some actual sprints off the ventilator), but I'm still excited nonetheless.... and based on how well she handled the first big decrease -- I'm confident she will do well and handle it just fine. We also plan to ask about a passy muir valve (aka "speaking valve")... which will help direct air through Evanna's vocal cords and hopefully help enhance the noises she's already making and have a chatty toddler in no time! We weren't able to entertain the idea before, as this valve actually adds PEEP, and due to how high her PEEP was before, were told we had to wait until some decreases we made before experimenting with one. Some kids don't like pussy muirs -- but we're still keen to try one and see what Evanna will do when we put it on her trach *fingers crossed*.

[EASTER]
Evanna with her cousins Alexa, Dax and Xoey
Easter has recently become an important time of year for me. It usually involves our anniversary and signals that Evanna's birthday is just around the corner. My sister and her husband recently moved to High River, and so because she wanted us to come see their new place, had asked if she could host Easter this year. So we drove out to High River on Saturday and had dinner with my family -- including my grandparents who drove up from Fort Macloed to join us. Before dinner, we quickly took some photos of the kids in their "Easter attire", and though it required a lot of patience and creativity to keep them all content and happy (especially Mr. Dax....), it was definitely a bit easier than the Christmas photos just a few months ago... so I'm going to call it a win lol.


/////// other little updates --
I've recently been able to encourage Evanna to walk along the couch ("furniture walking") if she wants to gain my attention. She's recently become a huge "mommy's girl" (Nick may be a little heartbroken over this new development lol), and so it's become a motivator for her to walk along the couch to get to me. Last Monday, nurse Carmen accidentally discovered that if you now hold Evanna under her armpits, she will take steps towards certain toys or her tablet. It's something Nick and I have tried to get her to do in the past, but I guess it wasn't something she was interested in doing until now.

These last two weeks of April have proven very busy which entailed a night out with friends this past Friday, another "trach mom night out" yesterday for me (we have a little local group of "trach moms" that try to get together about once a month for brunch or dinner), and Xoey's (our niece) baby blessing today! Evanna's 3rd birthday is next weekend, and my dad's 55th birthday the first weekend of May!

......AND before I forget, I was featured on another podcast (first podcast from 2016 is available here) back in February, and I've been meaning to link to it here on the blog for those who haven't had a chance to listen to it yet. CLICK HERE to hear our episode on Extraordinary Moms that I did in honor of CHD Awareness week where I talk about Evanna's journey and try my best to explain a "day in the life" of what it's like to be a "Trach and Vent" family!

xo The Irvine Family

Tuesday, April 4, 2017

|| Evanna's new ride + an early anniversary ||


"Trachieosaurus" shirt from StomaStoma // Hair bows c/o  AB Bows Handmade

On the surface things have been relatively calm and even “serene”, but it has remained quite busy and somewhat “go-go-go” behind the scenes. Most of it involves getting some things in place for Evanna as we leave the first quarter of this year behind and make some plans for the rest of summer leading into fall.

In respect to Nick and I, we are currently just putting the “finishing touches” on our legal basement suite and will hopefully have an ad posted and the suite rented out before the end of April. This project has eaten up most of our free time over the past few months (especially for Nick, I can’t emphasize enough how hard he’s been working to complete this project), so it’ll be nice to finally have to time to focus on more personal projects such as building the rest of our fence and do some landscaping in May, and even tackle some interior design ideas that I’ve been dreaming up since the day we moved in.


In regards to Evanna, we’ve been able to make a few small positive changes such as discontinue a few more medications in March and work on transitioning her from her standing frame to the walker. With medications, she’s on just iron, aspirin + Vitamin D – essentially all supplements and just quite an amazing feat in my opinion. The transition to the walker has been going okay, but I don’t think she quite understands the freedom it gives her and hasn’t realized the walker’s full potential…. but I’m confident in time that will come.
We also had an intake assessment with an organization here in Calgary called GRIT to send in Evanna’s application for PUF funding from the province that will provide early intervention services to help integrate Evanna into the school system over the next 3 years.

“Alberta Education provides Program Unit Funding (PUF) to support the educational needs of children with a severe developmental disability or delay. Children who are at least 2 ½ years of age and less than 6 years of age on September 1 are eligible. The funding is used to support children’s participation and learning in early childhood programs.”

Evanna qualifies for the full 3 years (the first year or two will definitely be home-based), and due to her age, will start this fall! I was a little apprehensive about the whole process and feel like Evanna is too young/not ready – but we’ve been reassured that Evanna is definitely ready and will benefit so much from this program. We chose to go with GRIT (as there are a few several organizations to choose from) based on all the favorable recommendations from fellow medical families that I am acquainted with and our primary trach nurse from the Complex Airway Clinic who noted that GRIT  was the most experience with medically complex kids – especially those with trachs. So based on that, I didn’t really bother (nor waste precious time) looking into other organizations and immediately set up an intake assessment with GRIT at the end of February. The two ladies that came to perform the intake assessment fell head-over-heels for Evanna and just thought she was the most precious thing ever. They were ecstatic about our potential acceptance into their program and made several comments about how well she’s going to do over the next 3 years and all the progress they’re anticipating she’ll to make. Once the PUFF funding is in place, GRIT will hire someone to work with Evanna around June, and the program will officially begin in September -- as it follows the regular CBE (Calgary Board of Education) school schedule (essentially it’s “early intervention preschool”). At the moment it’s been eluded that we will start out with 4 days per week, and because Evanna’s a “morning person”, has been signed up for a morning program.

---------------------------- in other news ----------------------------

For the 4th year in a row, Evanna’s medical needs is somewhat trumping our anniversary once again – 

[April 2014] 37+ weeks pregnant and moved into the Ronald McDonald House up in Edmonton
[April 2015] Evanna hitting 184 days in the ICU and yet, not at the halfway point when all said and done
[April 2016] Evanna’s emergency debridement sternotomy surgery
[April 2017] bronchoscopy procedure

…. so we decided to celebrate our 5th anniversary a little early this year and keep it simple (per Nick’s request) since we just went away to Lake Louise back in February and have another small trip planned for this June. It’s our 5th wedding anniversary this year, and we had always talked about going to Las Vegas to mark this particular milestone (it’s where we had gotten engaged), but such is life and unfortunately that trip will have to wait until a more appropriate time. While this is something I would have been upset about several years ago, I’ve learned there are more important things in life and “it is what it is”.
So last Thursday we booked one of our nurses for a day shift to watch Evanna, and Nick and I went and got brunch from a place that I had been wanting to try out for quite some time (I consider myself a “wannabe foodie”  lol) at a place called The Bro'kin Yolk on the North side of Calgary. We took the time to talk about everything we’ve accomplished over the past 5 years and how far we’ve come as a couple. We’ve crushed almost all the goals we set for ourselves and were able to take a moment to marvel at all our hard work. We tried to talk about what the next 5 years will look like, and while there were a few things we see happening, there are currently a lot of balls in the air (…. and yes, most of that has to do with Evanna lol), so while we continue to move forward – it’ll be in some state of limbo (which is becoming normal for us).
After brunch, we headed to Kensington (downtown Calgary) see the Peace Bridge off Memorial Drive before walking over to try an extravagant milk shake from Burger 320. We then went to see a movie before heading home and spending the rest of the afternoon + evening with Evanna. Overall, it was a nice little moment to enjoy some quality time between all the hustle and bustle of life.


[TOMORROW]
Granting a PICU bed remains available (as it’s generally the main reason our surgeries and procedures get bumped), Evanna’s bronchoscopy will take place on tomorrow morning. At the moment we’ve made the decision that I will still go to work that day (this shift was scheduled weeks prior to getting the procedure date), and Nick will take Evanna to the hospital that morning for the routine procedure (because they have to be at the hospital extremely early, I will help Nick get Evanna admitted and then head off to work). I’ve made Nick promise to call me the moment he finishes speaking to the Respirologist and share the results with me (so all the details will be fresh), and will then join him back at the hospital the moment I get off work. I’m super nervous for what they will find and just *crossing my fingers* that Evanna’s trachea will show that it’s finally starting to strengthen, and we can lower some of her vent settings and work towards sprinting off the vent.
We went into last year’s bronchoscopy with very high hopes, and were discharged a few days later completely devastated that not a single change was made to her very high ventilator settings. Despite improvements in certain areas of Evanna’s health -- we’ve been at this plateau for what I consider the “big stuff” for quite some time (I’m taking years here…), and would honestly like to see some momentum happen. I just wanna see the light (even if it’s small) at the end of this tunnel in regards to our trach/vent journey and know we’re headed in the right direction. We’ve seen the power of prayer work in the past, so if you can, keep Evanna in your thoughts and prayers tomorrow morning that the bronchoscopy will go well and that we’ll receive some positive results.


[CARDIOLOGY UPDATE]
Last Thursday I called our Cardiology clinic to see if they could inquire to our Cath date, as we STILL hadn’t heard from the Stollery about a timeline for this procedure. One of the cardiac nurses retuned my call and stated that she called Edmonton and at the moment we’re currently slated for June date (….. and yes, by jaw hit the floor when she said that). The nurse stated that it was obvious that I wasn’t happy about this timeline and completely understands that while Nick and I are reasonable people (we’re not newbies to our healthcare system, so we know how to “wait our turn”), but there is a lot riding on this procedure and we’ve been waiting long enough. The nurse said at the moment, there was nothing she could do, but would email our primary cardiac nurse and cardiologist, as our cardiologist is the only one who can advocate for quicker date. Unfortunately our cardiologist is away for another week, but thankfully this bronchoscopy is providing enough distraction in the meantime. The referral paperwork that was submitted asked for the Cath to be done “within the next 3 months”, and it should have gone in at the beginning of February, but due to some communication limbo, it didn’t go in until mid-March … so my hope is that our cardiologist can try and work some magic and have it moved up to sometime between the end of April or beginning of May.

Thanks again for your all your love, prayers and support,

xo The Irvine Family

Thursday, March 30, 2017

#PrinceofPeace

Evanna's Dress - Feltman Brothers  // Evanna's Shoes - Sweet N Swag


When I was a little girl, Easter usually correlated with getting a new dress for church, a big family dinner on Easter Sunday, and of course – tons and tons of chocolate. This time of year never use to have so much impact on me, however, in recent years, it’s been a period that has both brought me to my knees in tearful prayer while also continuing to spark hope.

Our marriage actually began over a lovely Easter weekend almost 5 years ago surrounded by some of our closest friends and family. Like most things in my life at the time, it was articulately planned and the whole event was executed in an organized fashion (12 page itinerary and all!). There is almost nothing I would change about that day (well, except maybe the whole “every bridesmaid can choose their own dress” trend that became popular the following year – because that would have been awesome). Fast forward two years, and I would face one of many extremely hard Easter weekends that would test my faith, testimony and hope.
Three years ago – and almost 9 months pregnant, I packed my belongings and relocated to different city to prepare for the birth of our very ill daughter. For the first time in my life, I was alone, extremely scared, and somewhat isolated over Easter weekend during what should have been the happiest moment of our life with the arrival of a new baby. But it was throughout that time, that my thoughts turned to the significance of what Easter symbolized, and felt comfort in the thought that HE understood the turmoil and heartache I was experiencing. It was during that moment that the Saviour became my #PrinceofPeace, and to this day continues to calm my soul and lighten my load when life throws another curveball and our path gets a little shaky.

I’ve questioned a lot of things since the day we received news of our daughter’s terminal diagnosis and have moments that I wonder why our family has to endure this journey and great heartache, but when I take a moment to pray to my Saviour for peace and search for answers, I’m left seeing the bigger picture that only renews my faith and hope in HIS great plan.

Starting tomorrow (March 31st), I invite you to visit mormon.org to learn more about the principles of peace and how they can bring you closer to the Savior this Easter season. I’m also interested to hear your stories on how you’ve incorporated those same principles (faith, compassion, forgiveness, repentance, gratitude, scripture, prayer and hope) into your life to draw you closer to the Lord.


This post is sponsored by mormon.org, but the content, thoughts and words expressed are completely my own 

Thursday, March 23, 2017

Evanna's Special Heart

In the past I've tried my best to explain Evanna's "special heart", and why it's so incredibly rare, severe, and complex. This video created by Stanford (the hospital we're currently trying to take Evanna too) does an absolutely fantastic job at showing Evanna's heart defect (in its entirety!), and so I just had to share this video.

After watching, I want to explain that it's Evanna's "collateral arteries" (which they refer too in the video) continue to be our biggest issue to date. There is no DNA for them to grow and are very unpredictable (which is why no two MAPCA children are alike, and cardiologists are unable to provide any type of life expectancy for these kids). They are very prone to stenosis and occlude (ie. close off) -- which would prove fatal. Our hope and goal with going to California, is that Dr. Hanley can work his magic and try to see if he can rehabilitate any of her collaterals to potentially improve her prognosis and overall quality of life.  

Saturday, March 11, 2017

|| happy 2nd tracheoversary ||

Well, we did it! We survived another year at this thing called the “trach life”, and yes – it’s kind of getting easier and easier as time goes on. As previously mentioned (and what also sparked this very emotional post), while I still have my moments and I can’t wait to get off the vent (is that too much to ask for??) – I feel like we’ve really embraced this situation for the most part, and found a nice little rhythm and state of true happiness.

In full disclosure, I honestly thought we would have already been decannulated (or very close too) based on the original timeline our Edmonton ENT estimated (the one who actually did the procedure), and would have never dreamed that we would be in almost the exact same place that we were in last year. However, it was just an estimate based on the information he had at the time. Every baby is just so different, and there are so many variables to take into consideration. Yes, there are many that decannulate in a very timely manner and quicker than anticipated, but Nick and I have come to terms that isn’t in the cards for our family and have adjusted accordingly.  

Instead we generally focus on other accomplishments and milestones Evanna has achieved – and none of them would have been possible without her trach + vent… so we so incredibly grateful for this option and how it’s truly blessed her life. Lately, we’ve been getting a lot of compliments at how “healthy” Evanna’s been looking, and our medical team is extremely pleased with how well she’s been doing over the past year. Evanna’s very quick recovery from her 4th openheart surgery (not to mention how stable she remained while awaiting surgery) was a huge indicator to her health care providers on how far she’s come over the last 12 months, and they are so much more optimistic going into April’s bronch.

To celebrate this “tracheoversary”, I decided to film our bedtime routine to give everyone an idea of what that entails (thanks to our nurse Carmen for filming a few parts), and the difference having a trach brings to it. Nick and I often do it together when we’re both home (though Nick tends to take the lead as he’s a tad more efficient than I am), but given Nick’s work schedule and the times I’m away, there are many times we do it on our own. The biggest thing to note is we only do “trach tie changes” when we’re both present, but because that part doesn’t need to be done everyday, it’s not a huge deal, and just ensure we are doing a quick stoma clean before bed.


To end, I just want to say that we’re incredibly thankful for everyone who’s involved in our life because of the trach, and it’s been quite the experience to say the least. From all the staff we’ve been lucky to meet within the PICU’s in both Edmonton and Calgary (intensivists, surgeons, specialists, RT’s, nurses, lovely fellows, residents, social workers, child life specialists, dieticians and pharmacists), ALL of Unit 2, the whole respiratory team (Respirologists, clinic RT’s & nurses), a very accommodating cardiology team (and the very patient ECHO techs…as the trach/vent makes those exams slightly harder to work around), our own private homecare nurses (who seriously deserve there own entire post) who watch, love, and care for Evanna on a daily basis. In more recent months, we've added some wonderful therapists to our care team, and know that by the years end, that circle will only get bigger. Finally, all of our wonderful followers, friends and family who have stuck by us and continued to show so much support for us.

xo The Irvine Family

Monday, March 6, 2017

|| lake louise + a swallow study ||


All has been well and somewhat “normal” (our normal anyways) in the Irvine household, and other than some minor colds being passed around (can it be Spring already??), it’s been a-okay kind of month. We find ourselves in a “hurray up and wait”/”holding pattern” phase yet again as we wait for our upcoming Bronch (April 5th) and Cath (date still TBD), but trying to enjoy every bit of calmness we're experiencing.

We did find ourselves finally admitted to the ICU for monitoring and vent tweak as per our respiratory team the first weekend of February, but in hindsight, I feel like it was sort of a pointless situation. We did learn a few useful things that we’ll be able to use in decision-making after Evanna’s April bronch, but the exhaustion of those 3 days in ICU wasn’t really worth it in my opinion….oh well.

[INSTAGRAM ENTRIES]
February 5, 2017


so.....we are being discharged already. We only made one small change (we decreased her delta from 15 to 12 for those who want to know and understand), but we learned + gained a lot of information that we will be able to use when we actually proceed with a bronchoscopy in March/April. Essentially we learned that Evanna is using her "upper airway" quite frequently to breathe when she's asleep (she has a large "leak" and her trach is considered "very positional") instead of the pressure she's given through her trach. It's not necessarily a bad thing when all her "numbers" (ie. oxygen saturations, CO2, breathing rate + heart rate) stay within normal limits, and again points to the fact that Evanna is getting stronger and potentially ready for some ventilator decreases. HOWEVER, while the numbers are showing us all of this – the more appropriate (and safer) way to make weans is to visualize what her trachea is actually doing when they make those decreases in a controlled environment -- via a bronchoscopy. So armed with all that new information, we are being discharged today with one little decrease and a lot of new information that we will incorporate into decision making when we come back for our bronchoscopy next month.
Yes, this process seems extremely slow, but we're dealing with an A I R W A Y, and the wrong decision could result in fatal consequences (something I have to remind myself when I get impatient). Yes, Evanna's history and her "reputation" doesn't help sometimes (lol), but they just want to make sure Evanna is more than ready before any decisions and changes are made. The medical team has implied that they do think she's ready and can't believe how much bigger and stronger she is, and we just have to wait a "few more weeks" to make these changes.
I will say, it was definitely weird to be in ICU when Evanna is the best she's ever been (and no IV!! ....that was a first) and were more than happy to go home....cause man, we were getting real board!

February 19, 2017

it's funny how a "good admission" can still be emotionally charged || stay with me here, but despite being admitted for a good reason earlier this month, it was still wrought with anxiety and some very emotional moments (which resulted in some major tear works all the way home after the 2nd day). First and foremost, I want to first explain while I don't care how long Evanna has the TRACH for, I am very desperate to get her sprinting OFF of the ventilator -- at least during the day. I can't emphasize enough how much it'll improve our families quality of life if we only have to deal with a trach and a little bit (okay, okay a lot) of oxygen. Not only will we gain freedom to move freely within our own HOME, but taking Evanna out will improve immensely. When we initially agreed to the trach, the ENT surgeon estimated that Evanna would only need it for a year – maybe two (.... and this is why they hate giving estimates lol). We are just weeks away from Evanna's 2ND "tracheoversary" and no where close to decannulation (the process of removing the trach). Last Spring we thought that we could begin weaning Evanna off the vent, but were met with huge disappointment when we were discharged without a single decrease made. However, lots has happened over the past year and we hope that by giving her some more time, we will have different results this time.
My relationship with the trach + vent is very much a love/hate one. I am beyond grateful for this option and the opportunity it's giving Evanna to grow, develop and get stronger... and most importantly – allow her to be HOME with us. There are also many "trach perks" and I'm so incredibly thankful to live in a place that provides so much support.... however, the "tach life" still imposes many limitations, and despite our best efforts, there are still many things beyond our reach that people take for granted on a daily basis.
Our bronch has been officially set for April 5th, and hopefully there will be an ICU bed for us, so it can proceed as planned. I'm incredibly nervous, as this bronch could allow us to work towards the "freedom" I so desperately want, or continue to make us be patient and wait a little longer.

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[ON TO OTHER NEWS] With only one days notice (because they had a cancellation), we FINALLY had a barium swallow study done on Valentine’s Day, and Evanna PASSED! We are currently cleared for pureed foods, and are so happy (especially our occupational therapist lol) that we have some freedom to start being a bit more aggressive with oral feeding. We know we have a huge mountain to climb in this regard, as Evanna has absolutely no interest in eating, but this is a great first step forward. Wish us luck!!

Last weekend Nick and I went away for just over 24 hours to Lake Louise, but it was actually a pretty big deal. In the past we’ve stayed at a hotel for a night here and a night there after Evanna was born -- but they’ve all been while Evanna was in hospital. I know that sounds completely insane (especially if  you’re new here), and some may gasp “what!?! You went off gallivanting while your child was in hospital!?!”, but hospital life is kind of just another regular day to us, and it was generally for something big (bridal party/wedding event, celebrating an anniversary, etc)…. and you couldn’t ask for a safer place to watch your child when you’ve got cardiac intensivists at your fingertips. Evanna was always super stable on the 3 times we went “away” (but weren’t really… lol), but it was highly encouraged by the intensivists themselves, and they were always ecstatic that we were taking some time out for ourselves. What I’m trying to say is we had some of the best gosh darn babysitters that money could ever buy….so once in awhile we took advantage of it when all was well, and we needed a break.
Fast forward to now. We’ve tried going away in the past (think April 2016 for our anniversary……but ended up admitted for a sternotomy infection forcing me to cancel plans to Canmore), but up til now, any nights away have been separate so one of us was always home (or at least extremely close by). I told Nick now that Evanna is a little bit older and way more stable, it’s time we do a few more things TOGETHER as a couple this year, especially when we have the resources to do so (in the form of homecare nurses). Now, Nick is what I like to call a “helicopter parent”, and while that’s not a bad thing whatsoever (especially when you consider our situation and the attention she requires), but it’s super easy to make excuses to not leave Evanna in the care of others (she’s got a lot of quirks to say the least…) and likes to keep her in this protective bubble. So, I’m trying to ease him into it, and thought this very small and quick 24 hour trip would be a great first step (cause I’m hoping to do a full weekend once or twice this summer). Anyways, I’m happy to say the trip went great and all is well. We first headed to Lake Louise to try a little ice-skating…but we didn’t stay out on the ice for very long because man, that s#!~ is hard ya’ll! While it did get easier the longer we were out there on the ice… Nick and I definitely need a bit more practice. After returning our skates (we just rented them for a few hours from the Fairmont), we ended up just walking around and headed out further out on the ice to take some pictures. We then headed back towards Banff to meet up with some friends for dinner and even ended up meeting up with Nick’s sister and her boyfriend who also happened to be in Banff that same weekend. Overall, it was a really nice mini vacay and Evanna got to hang out with her favourite nurses. 



[CALIFORNIA PROGRESS]

Probably the #1 question I get asked all the time is what’s the latest on our referral to California (if you're new here, you can read HERE, HERE, and HERE to get a better background on this and why we're currently pursuing another open heart surgery "stateside"). I get it -- this is a huge deal and there is definitely a lot riding on it. Trust me, I am just as frustrated at how slow this whole process is, BUT thankfully Evanna is very stable and we’ve got time on our side (a huge blessing that we're incredibly grateful for).
I decided to call the cardiology clinic last Tuesday, as I still hadn’t heard from Edmonton about a Cath date, and our cardiac nurse informed me that we were in a bit of a “communication limbo”. Our surgeon in Edmonton wanted to clarify where the Cath should take place, as Dr. Hanley is know for being very particular (like to the extreme), and generally prefers his team at Stanford to perform the Cath. However, being that we’re coming from Canada complicates that, and it’s a little easier said then done. I asked a fellow MAPCA mom who lives fairly “local” to us (Edmonton) who went down to California for their heart surgery a few years ago, and she told me they had their Cath done up in Edmonton and Dr. Hanley  just gave specific instructions on what was needed. The following day our cardiac nurse called us back to inform me that Evanna’s name has now been added to the Stollery (Edmonton) Cath list, so hopefully we’ll get a phone call with a date in the next couple of weeks.

Once the Cath is completed, it will be sent to Dr. Hanley for his final review on whether he thinks there is anything he can do to help Evanna and go from there. That’s basically all I got for an update….

xo The Irvine Family


Monday, February 13, 2017

"what it's like being a 'zipper-club' Auntie"

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 idea by me, as she wanted to raise a little awareness herself and told me to call her as soon as possible. When I finally got a chance to call her back, she asked if she could write a post about 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, as I thought that would be something awesome to post and share here.

The next day she called and read out what she had written, and I completely teared up over what she read to me. This “heart journey” is both beautiful, but also completely heartbreaking – and not just for us as parents, but for our whole family too. While not many people can comprehend what we go through as parents and the many hard things we have endured, our family has definitely felt the affects of this diagnosis and the lasting impacts it has made. -- Kierra

I have thought many times on where to begin, but for me it started over 3 years ago when I got the call that has changed and shaped the course of our lives over the last few years.
It was a regular (but very cold) November morning, and had gone to the city to get some shopping done before my sister's gender reveal party – and anyone who knows my sister, knows that she loves to plan a good party & event. Kierra loves the aspect of the fun and getting togetherness, but she also loves to plan and organize because she was – and still is, a very put together and organized person. 
Kierra had a Facebook event up for that evening’s gender reveal party, and I gotten a notification that the party was canceled. I instantly knew something was wrong and tried calling her, but she didn't answer right away, so I just waited for her to call me back instead. A little while later my phone rang. I quickly answered and immediately asked her why the party was canceled (I'm now tearing up as I write this). She proceeded to tell me that she had gone for her 18 week ultrasound and at first things seemed normal not realizing that having a doctor talk to you privately afterwards was not. She then told me about the heart defect. I felt the air leave my lungs. We sat on that phone together – not much more was said, and we just cried. How could this happen? Why? Was it even real? It's not fair. My heart just ached for my sister, and wanted to take everything off her shoulders and place them on mine. We ended the phone call, but I continued to cry all the way home. The next few months were emotional…. there were some high highs and some really low lows. I planned her baby shower and invited friends around us to celebrate. It was a bit different as we asked people not to gift Kierra with smaller sized baby clothes – as we were unsure if Evanna was going to have surgery right away – but it was a happy occasion nonetheless. Then Kierra had to leave and temporarily relocate to Edmonton to deliver Evanna, which so hard being far away, not knowing what the future was going to hold. 

Well the day of Evanna’s birth had arrived, and it wasn't anything like we had expected. She born via emergency cesarean, and I was kept waiting by the phone waiting for updates, but due to so much chaos... was somewhat left in the dark for most of the day. I kept praying that everything was ok. I remember finally getting that phone call – but was left in tears upon hearing the news. I was filled in and told that Evanna was unfortunately the “worst scenario” of the two diagnoses they were contemplating while Kierra was pregnant. So many thoughts raced through my mind as I thought of all the things my sister was never going to have with her daughter. I thought of how she was going to lose Evanna before she even had a chance to really know her. My heart ached, as I wished to trade places for just a few moments. It wasn't fair! I wanted to scream why? How? I then began to fall into a dangerous thinking pattern. I started to feel guilty that I had a healthy and happy child. I then had my second child and experienced some major post-partum anxiety. I wasn't sleeping nor functioning well. I eventually sought out counselling to deal with the guilt I felt. I kept telling myself and had many people tell me I shouldn't feel this way. But I did I couldn't help it! That was my sister! That was my niece! I wanted to fix something that I had no control of. It took a whole year to come to peace with our current family’s circumstances. Hospital visits (our version of “playdates”) became our new normal whenever Evanna was transferred closer to home, and alongside my sister, counted as each day, week and month passed us by…for a jaw-dropping 400 days in hospital.
August 2015
I got to experience some beautiful and very heartwarming moments throughout this journey too – my daughter Alexa always looked forward and loved our visits to the hospital with her cousin, and it was the cutest thing when she would give Evanna her a soother or read a book to her in the ICU crib. She wasn't afraid to climb right in and cuddle in close with Evanna. She didn't see cords and IV's – she just saw her little cousin who she looked forward to seeing every week. I will forever treasure those memories. 
I still don't know what the future will hold or how long we will have Evanna with us but over the last few years I've learned a few things: 

1. You don't realize the strength you have until you have to deal with something difficult.
2. Nothing positive comes from being Negative (this one I learned from my sister -- her main mantra for the hardest days)
3. It’s ok to cry.
4. Family is so important.
5. My medical knowledge of things has definitely expanded – though I can't even begin to even touch the amount my sister and my brother-in-law knows.
6. I didn't realize that our family dynamic wasn't normal. A lot of people don't have the support my sister does from us and I will never let anything be so hard that I will turn my back..
7. I have learned to be thankful for the small things.
8. I learned how common Congenital Heart Defects are, and have now gotten involved in a lot more charity work and awareness campaigns. 

- Danika Asuchak

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