Wednesday, August 30, 2017


To say the last 24hrs have been a whirlwind would be a complete understatement, and I’m trying my best to process all the information we’ve received and grasp that our life is going to be flipped upside down in the coming months. While I’ll get to ALL the details down below – essentially we just got word that after reviewing Evanna’s latest cardiac cath results, Dr. Hanley does indeed believe Evanna is a “good candidate for further pulmonary artery rehabilitation….. of both the left pulmonary artery system and the right artery system and eventually, for intracardiac repair” (quoting directly from the referral letter that our cardiologist received last week).

………..excuse me while I try to pick my jaw up off the floor.

In laymen terms, Dr. Hanley believes he can help Evanna, and will accept her as a patient!! I seriously keep bursting into tears, and have been overcome with waves of emotion, joy and major relief. Our whole medical team is just in shock right now, as the cardiac cath Evanna underwent back in June was quite worrisome and the interventional cardiologist (Dr. S) and Dr. Fruitman (our primary cardiologist) were quite frank and honest with us in their opinion that Evanna may even be too complicated for Dr. Hanley and that we really prepare ourselves for a “no”.

Due to some unforeseen roadblocks (ie. her bout with Endocarditis last Fall and the communication hiccups that delayed her cath referral), it has been an incredibly long process to get to this point. If you’re new to this blog, or maybe have forgotten – I’ve been advocating for this referral/consult since SEPTEMBER 2016, when during a cardiac checkup, I asked our cardiologist if she would send Evanna’s medical records down to Stanford/LPCH to be reviewed by Dr. Hanley (to which we received an initial response less than two months later). That’s right, we are literally just a few weeks away from hitting the 1 year mark since I first put things into motion – and other than our 400 day hospital admission back in 2014/2015, advocating and pushing for this referral has been one of the most emotional and mentally exhausting things I’ve ever had to do.
And now, with an answer in hand, we’ve just added about 100 things to “our plate” while we make arrangements and get all our ducks in a row for this huge endeavor.

........first things first – timeline/when? “within in the next 6 months”.

We have several factors to consider, such as Evanna’s currently stability (which is an absolutely huge blessing in it’s own right), the fact that at this moment in time, this is currently considered an elective surgery (more on that later), and I’m currently pregnant and due at the beginning of December (and yes, I did recently write about how boring this pregnancy was…. way to jinx myself lol – but of course in a good way). With that said, we’re looking at “late winter, early spring”.

So here’s the first few things that Nick and I need to accomplish and oversee in September:

1) Dr. Fruitman has to compose a letter and submit an application to the “Out-of-Country Health Services Committee” for their review (here’s a link to their webpage with further details if your curious). I’m not worried about this part, as Evanna isn’t the first child from Alberta that has been referred down to Dr. Hanley for Open Heart Surgery – but this part does take time in nonemergent cases, as apparently, they only meet certain times of the year. We already have the backing/”blessing” of our cardiac team (ie. our primary cardiologist and pediatric cardiovascular surgeon at the Stollery up in Edmonton) who will confirm that we’ve exhausted all our resources here in Canada, and this surgery (that’s not considered experimental – which is very important when you’re trying to gain government/provincial funding……) is in Evanna’s best interest.
Dr. Fruitman has to also consult with Respirology, as major considerations need to be made in regards to Evanna’s trach, ventilator and oxygen needs, and how we go about getting Evanna DOWN THERE for surgery. A “quick and short” trip up to Edmonton/Stollery (3hr drive within the same province) is considerably different then crossing/flying across the boarder to a different country…

2) Formally meet with Dr. Fruitman to actually discuss the risks and benefits of everything. Thus far (ie. the past 24hrs), I’ve only been able to have a 10 minute conversation with Dr. Fruitman on the phone and obtain a physical copy of Dr. Hanley’s letter from her cardiac nurse this morning. While I immediately said “YES” when Dr. Fruitman asked if “we” wanted to proceed with this, my incredible husband that’s always been my “ying to my yang” has pulled me back to Earth and ensure we truly understand what we’re actually saying “YES” too. He always knows how to keep me grounded and love how much we’ve compliment each other as husband/wife and parents to Evanna. We actually deal and process things very differently, and what one lacks, the other makes up for ten-fold. In my opinion, the dynamic of our relationship has been a huge blessing and a benefit to Evanna through this insane medical journey --- and her currently doing so well is a small testament to that (but yes, we also can’t discount that she’s quite the “fighter” herself lol).  
The past year has been spent “waiting” for an answer from Dr. Hanley, but because it was so uncertain as to what he’d actually say – we never really thought about what that could mean and the potential risks that come with signing those consent forms. What Dr. Hanley has proposed is quite risky and invasive, and we have to truly weigh if these possible benefits he’s proposing is worth the huge risk we’d be agreeing to (while also discussing the risks of not proceeding with this option that has been presented to us). Due to the fact that Evanna is currently very stable (despite her high oxygen requirements….), and not “deteriorating” right now... but in fact thriving, this option is currently considered “elective”, and it can be such an internal struggle as to whether or not we want to “rock the boat” and potently make things worse and lose Evanna. However, the alternative (ie. not do anything) also brings about it own sets of risks and devastating consequences.


So we’re actually looking at 2 (potentially 3) surgeries and trips down to Palo Alto over the next year (or so), as Dr. Hanley has proposed and presented quite the plan to rehabilitate her MAPCA’s/collaterals. Then, IF everything goes well and her collaterals “behave”, cooperate, and grow – we could actually look at having her VSD closed (something that was never been a possibility before), and have what’s called a “full repair”.
In his letter, he would first like to tackle her LEFT side, as that’s been our most worrisome and difficult area with Evanna’s heart. Dr. Hanley wants to “salvage the ‘ghost’ upper and lower lobe branches, and unifocalize these to a central shunt in an attempt to promote growth of the left system”. In a second procedure, he would like to “address the right pulmonary artery with rehabilitation of all major right hilar branches that are currently stenotic. Depending on the growth of the left system, it would potentially be possible to bring the left and right systems together at that second operation”.
He concluded the letter with “Additionally, if we do bring the left and right systems together at that second operation, I would perform an interoperative flow study to determine whether it was adviable to close the VSD at that time”.

So there you have it folks! After explaining the contents of Dr. Hanley’s letter, Dr. Fruitman was quick state that while she knows Nick and I have always been level headed about our situation with Evanna, at the moment, we need to try and not get ahead of ourselves and just take this one-step-at-a-time. I laughed and said “hasn’t that always been the case with Evanna?”, to which she laughed and agreed with that observation.

Finally, while Nick and I somewhat consider ourselves “pros” at this surgery and hospital stuff, this newly presented option brings so many unknowns and situations we’ve never had to deal with before, and it’s a bit overwhelming to say the least. We will potentially be dealing with a new hospital that we are completely unfamiliar with (though, only I’ve only heard the best things about Stanford/LPCH) – and not just in a different city or province, but an entirely different COUNTRY! Another level of logistics that we’ve never had to take into consideration before, is we’ll have another child/baby by then… when all we’ve ever had to worry about is JUST Evanna! However, I do feel like it won’t be too difficult due to the fact that baby boy will essentially still be a newborn, and will hopefully sleep through most of it lol (not to mention that Nick is super dad, and I’m sure we’ll get by just fine).

I guess this is an appropriate time to ask for love, prayers and support as we seek guidance in pursing this absolutely amazing option that has been presented before us and strength in continuing to advocate for Evanna in our quest to improve her current (grim) prognosis and overall quality of life -- which ultimately is our main focus and goal.

xo The Irvine Family

Monday, August 28, 2017

|| 1st trimester summary ||

Well, I'm less than a few  weeks away from hitting the 3rd trimester and only just getting this post up...oops! So far things have been going really well, and incredibly smooth to say the least. Being that this my second (technically third) pregnancy, I feel like I know what I'm doing and navigating the system with much more efficiency than last time. Between the fact that Nick and I both work for the health region and we have a high special needs daughter with multiple specialists -- you learn a thing or two on how to work the system and so overall I feel so much more in control this time around.
We have what's called a "universal healthcare" system here in Canada, and if you don't access/use it very often, it's full potential is sort of unknown (which is why I roll my eyes at people who think our healthcare system sucks -- yet rarely use it themselves, and have very little first hand experience). Generally, you end up just "going with the flow", and perhaps not realize the reasonable requests you can make and how to take charge of your health. With Evanna, I initially just went where I was told, and was randomly assigned to both a Calgary and then Edmonton high risk OB (wasn't a fan of my OB in Calgary, but thankfully ended up with a fantastic high risk OB up in Edmonton a month before I delivered Evanna). I've actually discussed this topic recently with many medical professionals, and they all agree there needs to be some better understanding on how to navigate our healthcare system to avoid feeling lost in the shuffle. For example, when I went to my family physician to confirm this pregnancy, he gave me a referral for a dating ultrasound. At first he gave me a "req" (referral form) to a diagnostic place not far from his office. However, due to my past experience and the many ultrasounds I had with Evanna, I immediately requested for my req to be changed to one with EFW (they have multiple locations all around the city), as they are considered the best for quality diagnostic imaging that is done outside of hospitals here in Alberta, and would eventually end up there anyways for a screening ECHO. My doctor quickly ripped up the first form and printed off a new one for EFW (which I recommend to any local pregnant ladies), as it was considered a very reasonable request and was happy to oblige. Ensuring my ultrasounds were all done with EFW has already been a fantastic decision, as they are extremely professional, super organized/on top of everything, and overall feel like I'm being taken care of. I actually ended up bonding with the tech who did my nuchal scan back in May, and once I went over the results with the radiologist, they immediately  booked a screening ECHO exam (which happened earlier this month) -- even without an official referral (though I'm sure they just quickly confirmed what I told them with a quick glance from my file from when I was pregnant with Evanna)!

Next was an OB...... again, through Evanna, I've learned if there is a specific specialist you want to see (and the request is warranted), your name doesn't have to be thrown in the huge pool and randomly assigned. Due to my history (previous csection, high amniotic fluid levels, and Evanna's heart), I already knew I'd be assigned to a high risk OB. Minus the obvious, I am hoping for a much more "boring" pregnancy that doesn't involve relocating to a different city and at the location of my choosing. One of my best friends is a labor & delivery nurse at the newest hospital here in Calgary and turned to her for advice. Due to the fact that she works alongside many of the OB's out of the hospital I had hoped to deliver at, I asked for some recommendations and had my GP submit a referral to the OB of my choosing (another reasonable request). So instead of waiting til hitting the 20wk mark before transferring my care to an OB (ie. randomly assigned), and seeing if I won the "hospital lottery" (the new hospital here in Calgary has a small "cap" of people they can take due to bed capacity), I was informed at just 9wks that my preferred OB had accepted my case and I would be delivering at my #1 choice! In fact, my care was transferred a bit earlier and got met with her when I was only 16wks.... all because I simply asked! There is obviously a lot of anxiety accompanying this pregnancy, but having everything thus far going so smoothly and being able to take control of certain aspects has helped me be at ease.


As coincidence would have it -- the last time we found out I was pregnant in Spring 2016, it was just days before Evanna's big bronchoscopy (for a quick refresher, you can click here to read all about the not-so-great results we received).... and so it felt like a double blow when we found out my pregnancy was "unviable" just a few weeks after that very emotional ICU admission. It's was one of those "when it rains, it pours" situations, and began to truly wonder if we would ever catch a break.

Well, in a really weird twist of fate -- just days before her bronchoscopy this year, we again found out I finally pregnant.... and so I was actually a little terrified that we were going to have a déjà vu moment (another bad bronch followed by a miscarriage). Thankfully, that wasn't the case this time around and we had the "happiest ICU admission" to date, and so far -- all is well with this pregnancy.

Nick and I had began trying for another baby since October, however, Evanna's hospital readmissions (October and December) and 4th open heart surgery up in Edmonton definitely made things both logistically and emotionally harder. We were then slightly caught off guard when pregnancy test after pregnancy test was reading negative (something we hadn't experienced before), but continued to try with encouragement from my doctor that I would indeed get pregnant this year and try not to stress about it (yeah....okay buddy).
With the help of my handy period tracking app, I noticed I was entering the "late" territory (again....) in March, and so I bought yet another pregnancy test on my way home from work. When I got home, Nick was literally heading out the door to his night shift and I spent about 30 minutes catching up with one of my best friends who was there to watching Evanna for the day (she's an RN who works once a month for us). I waited til she left (as it wouldn't necessarily be fair to Nick if my friend knew I was pregnant before he did lol) before running back out to my car to retrieve the pregnancy test. I then raced up to our bathroom, and without trying to get my hopes up, took the test.


I did a few air fist pumps and danced around excitedly in the bathroom for about 60 seconds before having to snap back to reality and head back down stairs to make sure Evanna was okay. I decided to leave the pregnancy test on Nick's night stand for him to find when he got him in the morning and do a quick google search to figure out a tentative due date -- December.

It was definitely hard to contain my excitement when our night nurse got there (our homecare nurses are practically they were definitely some of the first people we told the weeks following), and went to bed very excited for Nick to get home. Well, sure enough, Nick got home around 6:30am and immediately noticed the pregnancy test on his night stand and took out his phone to use the light to read it. I woke up just as he was picking up the test to check it and he came around to my side of the bed to jokingly state "well, it's about time" and gave me a quick kiss before getting ready for bed.

We remained cautiously optimistic in the weeks that followed until we could confirm everything with a dating ultrasound, but were thankfully somewhat distracted with "Evanna stuff" -- such as her April bronch and June Cath that kept our minds quite occupied. We were definitely elated and a bit relieved to confirm there was actually a baby growing inside me this time.... but I was soon meet with a lovely dose of morning sickness from a very early stage. I had pretty awful morning sickness with Evanna, but I feel like it started much earlier with this baby, and it was more of a "all day sickness" vs just the morning time with Evanna -- in fact, it would actually get worse as the day wore on and I could barely function come the evening. This affected my presence on social media... and due to the fact that I had actively talked about Nick and I wanting another baby, there were actually a handful of people who figured out I was pregnant months before we officially announced lol.

Maternity dress (plus lots of cute pregnancy clothing options) available at PinkBlush // I seriously get soo many compliments on this dress every time I put it on!


Total weight gain: No idea. Though I did experience an increase of appetite for the first few months - things have resumed to normal, and I kind of don't care to track my weight gain this time around. It is what it is. I'm indulging here and there (though I'm sure Nick would disagree with this statement lol), but not going overboard by any means. I plan to weigh myself when I go into labor to get a sense of my "starting point", and worry about loosing the baby weight after the Christmas holidays. My weight is being tracked by my OB, and she has thus far indicated that my weight gain has been well within normal limits -- so that's good enough for me.

Maternity clothes? Absolutely! I actually began showing at 9 wks, and had to quickly transition into maternity pants at a very early stage. I know you show sooner with subsequent pregnancies, but due to the fact that I showed at just 12 wks with Evanna, I was showing pretty much right from the beginning with this baby. It's just the way my body was built.....

Stretch marks? Just what was left over from my pregnancy with Evanna.

Sleep: Pretty great. Nothing to write home about.

Best moment(s): Sharing the news with our medical team here in Calgary and the ICU team up in Edmonton while we were up there for Evanna's cath back in June. Yes I'm public about our medical journey with Evanna and try to share as much as possible -- but these people lived it with us. They were physically (and emotionally) there during some of our lowest lows, and truly saw what Nick and I had to go through and endure between 2014-2016. So it was only natural for them to celebrate the news and be excited that Evanna is going to be a big sister. Our cardiologist Dr. Fruitman was probably one of the first people we told, and it was just so sweet to see how thrilled her and Patty (our cardiac nurse) were for us. We then saw our whole respiratory team, and they too were just so happy for us and can't wait to meet the new baby.

Back in June, I seriously couldn't wait to get to Edmonton and share the news with the whole ICU team. Though I was only about 16 wks at the time, it was actually quite obvious that I was pregnant as I was already "showing" quite a bit. While the male intensivists (like Dr. Duff and Dr. Cave) waited for me to say something before congratulating us (to avoid that certain taboo lol), Dr. Holinski (actually had to look up her last name, as we just know her as Paula lol) and Dr. Ryerson were definitely quick to notice my belly and both expressed absolute joy for Nick and I. They made us promise to send an update and pictures/belated Christmas card once I had the baby, and we might even try to get up there to visit during the Stollery Radiothon in January (just a bit too far into the future to make that type of commitment at this moment in time). 

Miss Anything? Cheese (a good charcuterie board to be specific) and sushi! I'm seriously already daydreaming of sending Nick out for a sushi feast once I deliver. 

Movement: Yup! Definitely recognized the "flutters" much earlier, and they're now turning into full-blown kicks!

Food cravings: Nothing in particular. During the worst of my "sickness", my peanut butter/chocolate protein/banana shakes were the only thing that would satisfy me and give my body some decent nutrition. Definitely had a thing for pineapple at one point, and had to stop at Tim Hortons on my way to work to grab a breakfast sandwich (after already having breakfast at home) to help me through the morning for quite some time. Just like my first pregnancy, can never go wrong with a order of McDonald's fries, and dairy items like greek yogurt or ice cream are always welcomed and come well received!

Anything making you queasy or sick: Yeast. We (well Nick) doesn't like buying bread from the store (he states that it's too expensive lol), so he makes about 1-2 loaves/week. Unfortunately, the smell of it baking was making me extremely queasy, and had to request that he not make bread when I was home for a few months. Weird -- I know!

Labor Signs: Nope. 

Symptoms: Just my growing belly! Oh, and the fact that my gag reflex has been shot to hell again. Just like my pregnancy with Evanna -- brushing my teeth is quite the task and a huge undertaking when I'm getting ready in the morning.

Wedding rings on or off? To avoid what happened last time (got to a point where I couldn't take my rings off whatsoever, but thankfully it never became an issue when I gave birth), I took them off quite early into this pregnancy, and have been going ringless for quite some time. It definitely feels a little weird (my finger feels so naked!), but it's just a temporary situation.

Happy or Moody most of the time: I find myself quite a bit more emotional this pregnancy than I was with Evanna. There are lots of things that are coming to the surface that I guess I somewhat "buried" and never had time to deal with before, and there's actually been some waves of guilt, upset and devastation (there will indeed be a blogpost coming soon on this!). It was somewhat bringing to light everything that was stolen and ripped away from my pregnancy with Evanna due to receiving her diagnosis in utero, and the vast differences between these two pregnancies kind of left me struggling for a bit. However, while I say all this, please know these have been just moments, and I'm having less and less of them as time goes on, and able to enjoy the overall "boringness" of a healthy pregnancy. I've been able to discuss these emotions with not only my OB (she actually commended me on being so articulate with my thoughts and feelings so well and may or may not have stated that she finds me very intelligent lol), but also our medical team. While all the doctor's and specialists we see for Evanna are technically "Evanna's doctors", they truly factor our whole family into their care, and have felt incredibly supported as a whole.

Looking forward to: While this would have been an appropriate section to talk about our "babymoon" in BC, that particular trip happened several weeks ago and am no longer "looking forward to it" lol (that's what I get for being such a huge procrastinator lately...ugh). We have some pretty big changes happening in September, such as Evanna starting GRIT on the 6th (it's essentially early intervention "preschool") that will bring a lot more structure to our week, as well as a very special dinner for our core homecare nurses that Nick and I have planned for the end of the month. 

Fingers crossed that my 2nd trimester summary will be done in a much more timely fashion..... 

xo The Irvine Family

PS. Just reminding everyone one last time -- if you haven't already listened to it, I did a 15 minute podcast interview with the Orange Socks Society that was released the day we publicly announced we were pregnant with baby #2! I briefly talk about when we received the news of Evanna's diagnosis, the impact it's had on our lives, how she's been doing, and what the future currently holds for our family. It basically sums up our journey thus far and shows that despite the last few years being incredibly hard and full of trials, things are looking up and we actually have a lot to be thankful for!

Link to the interview HERE (it's about 15 minutes long).

Photography by Lissables Photography || Located in Las Vegas, Nevada