Sunday, September 24, 2017

|| babymoon + second half of summer ||


Well, I’m pleased to say that just like last year, we had another enjoyable and happy summer... and it too is being followed by season of major change as we head into the Fall/Winter months (arrival of baby #2 and California!!). Last Fall I "rocked the boat" by asking our cardiologist to forward Evanna's records to Dr. Hanley for a 2nd opinion, which was followed by a rough hospital admission and 4th open heart surgery just before Christmas (it was a stressful few months to say the least). Basically I'm hoping we don't have another unexpected hospital admission anytime soon, and praying we can finally celebrate a Thanksgiving at HOME -- as this is the only holiday to date we have yet to spend out of hospital with Miss Evanna. Each Thanksgiving since Evanna was born has been spent in hospital, so I'm crossing all my fingers and toes and thinking positive thoughts that this will be our year! lol.


The middle of July brought about our somewhat emotionally charged 20wk detailed ultrasound. To most -- this is just the "gender ultrasound" (where you find out if you're having a boy or girl).... but due to personal experiences, know the gender is more of just the "cherry on top" of everything else they are actually assessing during that exam. It was our detailed ultrasound back in December 2013 where they first detected Evanna's major heart defect and our life was forever flipped upside down. While I have a completely separate blogpost in the works on the huge waves of emotions I experienced in the weeks that followed that detailed ultrasound, it was confirmed that baby BOY is indeed "heart healthy" and everything looked great. We the held a very casual "gender reveal" party later in the evening with some of our closest friends and family in attendance, and laughed at Nick's slight disbelief (it was actually super funny) that we weren't having another girl.


Nick ended up having some scheduled vacation time booked for the beginning of August (with the rest of his vacation days being officially being saved for our trip to California for Evanna's 5th open heart surgery in the New Year), so we decided to go away for the weekend for a mini "babymoon"/respite weekend. While it was nowhere as extravagant as our trip to Cancun when I was pregnant with Evanna, it was still quite a lovely getaway and the perfect recharge we both needed. While I initially wanted to go to Vancouver Island and perhaps visit with Nick's brother for a day.... Nick was reluctant to be too far away from Evanna -- so we opted to just drive out to Golden, BC instead, which is less than a 4hr drive from our house.
We booked the most adorable Yurt off Airbnb that happened to belong to a "friend of a friend", and enjoyed the subtle isolation and seclusion it provided. It was definitely something very different from what we've stayed in before, but absolutely loved it and plan to do something quite similar in the future. Despite it not really being "my thing" (I just prefer to play with larger groups of people), we played lots of 2 player board games from the selection that Nick brought from his very large collection, read books, listened to music, and enjoyed each others company and much needed quality time together.
I've had many people ask me for the link to the Airbnb we stayed at, so here's the link again for those interested ---> CLICK HERE

We checked out/left super early on our last morning, and headed to Emerald Lake on our way back home.

wow oh wow

Despite the fact that it's only a few hour drive from our house, I'm almost disappointed in myself for never seeing Emerald Lake before now. It's indescribably breathtaking and pictures don't capture it's actual physical beauty whatsoever. I'm so glad we went super early, and were even the first canoe out on the lake! At first I had to somewhat drag Nick out there ("you just wanna take pictures for Instagram".... which was sort of true lol), as he just wanted to get home to Evanna.... but he later admitted that he was glad we made the mini detour and we hope to return there next summer with Evanna and baby boy in tow. 


Evanna started preschool at the beginning of September, and so far, it's going really well! Our province has provided 3 years of special funding that is suppose to help integrate her into the school system, and we opted for a home based program the first year. Basically a developmental specialist comes to our house every afternoon (Monday - Friday) to work with Evanna on tasks assigned by several different therapists that come see and assess her throughout the year. We've already noticed some major improvements in her physical abilities and are extremely excited to see what the rest of the year will bring. 

[#EvannaCALIUPDATE]
In an effort to remain as transparent as possible and journal as many details as possible (for my own record), I want to document every step we take on our journey to California in taking Evanna to LPCH in Palo Alto to have surgery by Dr. Hanley early next year.
We officially met with our primary cardiologist on September 14th, and got to go over Dr. Hanley's letter in depth and gain a better understanding of all the risks and benefits of his surgical plan. Essentially Dr. Fruitman reiterated that we need to take this one step at a time -- but in saying that, believes the very first surgery ("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") sounds very promising and beneficial for Evanna's overall long term prognosis. However, she definitely believes we should  wait and see how that goes before making additional decisions to proceed with the 2nd surgery Dr. Hanley has also proposed. Not that the 2nd surgery is bad in anyway, but we need to see the results of the first surgery to indicate that the 2nd surgery will be possible.

We were informed that a cardiologist at LPCH has already been assigned to our case (Dr. Grady), and our cardiologist has been very happy with the level of communication she's experienced thus far. Conversations with other MAPCA mamas have eluded that I'll like him very much based on the type of personalities I interact well with, and I'm definitely excited to actually meet him in person.
As of right now, our cardiologist is waiting for a letter from our Respirology team that will outline their recommendation on how we get Evanna down there -- we're currently thinking a air medical transfer will be best based on Evanna's trach/vent and oxygen requirements, and the considerable distance Palo Alto is from Calgary.... but we still need that in writing to submit to the out-of-country committee as a part of the cost estimate. Dr. Fruitman is not worried whatsoever about our request getting approved and has everything else she needs -- so hopefully the application will be completed and officially submitted by the end of this week. 

My goal for October is securing passports for Nick and Evanna. I'm pretty sure mine is still valid, but believe Nick's is expired and definitely need to get one made up for Evanna. There are soo many other things I would love to get arranged (Ronald McDonald House, additional travel insurance, etc), but unfortunately need an actual surgery date before I can go about getting all that in place. 

-----------------------------

A frequently asked question I'm asked after telling people that we're taking Evanna across the border for this very huge (and potentially life changing) open heart surgery is "do you have to pay for that?". Totally get it -- because lets be honest.... healthcare is freaking expensive! As I tried my best to explain in this previous blogpost, due to several factors (exhausting our resources here in Canada, this medical procedure is not considered experimental whatsoever nor a clinical trial, and our medical team believes this is in Evanna's best interest), we will qualify for out-of-country funding, and Alberta Health Services will cover all the costs in transporting Evanna down there, along with the surgery and entire hospital admission. We then have access to separate provincial funding that should cover our accommodation (especially if we get into the Ronald McDonald House in Palo Alto) and a somewhat decent "food allowance". The biggest cost on our end will be one round trip ticket to San Francisco (which is roughly $400CAD) -- as they only pay the way for one parent to go (fair enough), and the random transportation that we'll require here and there while in Palo Alto. I've already looked into the different "car sharing" options available in the Palo Alto area, but being that the RMH is directly across the street from LPCH, it's not something we'll need to use every day. Yes, I'm sure there will be other little costs associated with this whole endeavor, but I guess I want to reassure everyone that we're just fine and don't need to set up a GoFundMe and start raising thousands of dollars. I will be off on maternity leave and receiving Employment Insurance during that time, and we've purposely ensured that Nick has about a months worth of vacation, overtime + personal days saved up. So at this moment in time, as long as things go according to plan and we're not in California too long (3-4 weeks??), then our mortgage and bills will be taken care of. Then, if we proceed with a 2nd trip down to California later  in 2018 for a 6th open heart surgery (the 2nd open heart surgery Dr. Hanley has proposed to help Evanna's right side and maybe close her VSD), I should still be on maternity leave (thank you Canada), and Nick's vacation time will reset in April and will be able to get paid time off again. Basically, while we've been "dealt some pretty crappy cards" over the past several years, we also have been blessed in other ways and the financial stress of all this will be relatively small. 

Nick and I have always appreciated the small acts of kindness we've received over the years and thoughtful gifts that have been sent our way, but what we truly need is just continued love, support and prayers. Our story being shared and having so many people rally behind Evanna and our family has made the all the difference in the world, and seeing so many people fall in love with our baby girl has been the greatest gift of all!

Other happenings and milestones:

- We saw the Complex Airway team (respirology) at the end of August and got to make some exciting vent weans! We actually saw them the day after we got our exciting California news (August 29th was the day Dr. Fruitman called me with the news), and so it fun celebrating the incredible news with our trach nurse, RT and Respirologist. We then proceeded to wean Evanna's pressures down and left that clinic on a PEEP of 6!! *happy dance + air fist pumps*
I don't recall what we decreased her PIP too (I'm all about that PEEP), but I believe her current ventilator settings are now 17/6 vs the 27/12 she use to be at earlier this year (I'll confirm with the RT when they come for their home visit on October 6th), and are basically pretty close to CPAP settings now. However, that being said, the Respirologist stated that due to our latest cardiology news, he doesn't want to make anymore changes for quite some time (essentially putting respirology slightly on the "back burner" while we turn our attention to cardiology again), but we can continue to work towards all day sprinting at our discretion, as that will be the best thing in getting Evanna strong and ready for her upcoming big surgery. 


- while thankfully there isn't much we need supply wise for baby boy, as my sister is giving me all her boy clothes and baby swing - we did purchase a new infant car seat and minivan a few weeks ago! We initially bought a newish SUV before we had Evanna, thinking it would be sufficient for two kids before needing to upgrade to a minivan.... but we obliviously didn't anticipate all the extra "accessories" Evanna would come with, so we bit the bullet a tad early and are one more step closer to being ready for baby brother. 


- Evanna is finally starting to get really mobile. She has quite the content (and stubborn) personality, and just generally communicates what she wants us to bring to her. However, since starting GRIT/preschool, the developmental specialist has been able to make a small break through, and Evanna is now retrieving toys and books that are short distance away her self via crawling. 
While we don't really use the walker (as she really doesn't like it) at the moment, she's also getting really good at walking  around the house with just a little bit of help of an adult, and getting better and better at it everyday!

All in all, it's been a fantastic summer full of progress and lots of positive news!

xo The Irvine Family

PS. If you haven't already entered, head over to my Instagram and enter to win a FREE 3 month subscription of adorable bows from Little Poppy Co. [contest ends on September 30th]


Wednesday, September 13, 2017

[2017] Summer Family Photos + Giveaway!

Despite my best intentions, my heart just wasn't into blogging this summer.... and now I feel like I'm doing major catch up! I made sure to post the important updates (and even then, there's a few little things I haven't posted about....yet) -- but between my pregnancy, our somewhat busy summer (I've been working a lot in hopes of being eligible for a full maternity leave again) and the major stress of our California referral, I kind of took a step back from social media and only focused on the things I had too. However, since receiving our California news, I've kind of had this fire lit underneath me, and actually have several planned (and partly already composed) posts I want to get uploaded over the next few months.

Much to Nick's slight annoyance (though, he admittedly enjoys the end result), we've done family photos between May and July since Evanna was born (ie. summer) and just love to see the growth and progression as the years go by (especially the huge contrast that our 2015 PICU pictures show). This year's photography was done by a different photographer, as I've been wanting to do a session with my friend  good Alissa of Lissables Photography for a few years now, and were able to finally coordinate a date that worked for both of us (easier said than done considering she lives in a completely different country).

The photos were actually taken at the same place we did our wedding photos, as the owner (a friend of my aunts) so graciously allowed us to again use her gorgeous property on the condition that she gets to see the photos afterwards lol. There are practically endless places to take pictures within this very well maintained property, and I'm sure we'll ask to use the property again in another 5 years!

Thanks so much to Alissa for capturing some beautiful moments, may of which I'll cherish forever xx

2016 Family photos posted here and here

// Maternity dress PinkBlush //


[GIVEAWAY]
with Little Poppy Co

video

So if you know me at all, and or been a reader since our PICU days, you'll know I have a soft spot for headbands and bows. For better part of 10 MONTHS while Evanna was in the PICU back in 2015 and due to what seemed like endless tubs (feeding, drainage and breathing), IV's and central lines, I wasn't able to dress my baby girl for a considerably long period of time. As a mother -- especially to a little girl (hello ruffles and lace!), this was just another heartbreaking layer on our already difficult situation, and even broke down in tears the day I packed away almost a years worth of clothes that Evanna never got wear. 
Due to receiving Evanna's diagnosis in utero, my lovely sister actually created a "headband making table" at my baby shower, and I may have spent just a small fortune on headbands before Evanna was born in preparation of her hospital stay. However, what we initially thought would be a 4-8 week hospital stay turned into something so much more, and I used my stash of headbands as a way to cope with our situation. The mini collection I had accumulated before Evanna was born was put to good use (plus it was a great way to ensure the medical team knew the patient they were rounding on was a GIRL....as Evanna was pretty much bald til the age of 2!), and soon began to build a reputation as the "girl with all the headbands". It honestly became a small source of joy during some of our darkest days. For whatever reason, when people came across our story either through my blog, Facebook or my Instagram, they saw and could recognize what I was doing, and soon headbands began to arrive from all over the world! To this day, I still cherish each one of those headbands we received (and believe I still have most of them stored away in case we have another girl!) and am beyond grateful for these little sweet packages of bows that so many people sent to us over the years. 

When asked a few weeks ago if I'd like to giveaway a 3 month bow subscription box from Little Poppy Co to one of my readers, I immediately said "heck yes".... cause as you can see, I have a huge soft spot for all things  headbands and bows! So tomorrow - [Thursday September 14] (won't promise a time....as we have our formal meeting with our cardiologist to officially discuss Evanna's surgery in California at 4pm!!), I will be posting a giveaway and all the details over on my Instagram. So be sure to check back there and enter to win some (in my opinion) incredibly adorable bows!

-----> In the meantime, feel free to use the code KIERRA50 for 50% off your first subscription!

xo The Irvine Family

Monday, September 4, 2017

|| when a dream becomes reality ||


When you constantly think about something for years, it almost hard to let reality sink in and grasp it’s no longer just a dream. I actually can recall a conversation I had with one of our favourite intensivists (Dr. Aditia) at the Stollery back when Evanna was still intubated and probably about 6-7 months old (January 2015) about Dr. Hanley, his reputation and extensive experience with Evanna’s type of heart defect. Dr. Aditia (and his wonderful wife who’s a well-known cardiologist) is actually from the San Francisco area (well, lived there for a time), and use to work alongside Dr. Hanley and expressed back then that it was well within our rights to seek out and consult with Dr. Hanley if Nick and I really wanted too. At the time, we were still dealing with just trying to extubate Evanna off the hospital ventilator and get her home (and completely unaware what laid ahead and how long that would truly take), and so while it wasn’t a priority at that time, I kept this in the back of my mind to look into and research further later on down the road. Finally, after discharging home following 400 days in hospital, we decided to just take a break, let Evanna recover and see what she would do on her own -- and go from there. Much to our medical teams surprise, Evanna did indeed get more stable and stronger over the course of that first year home (2016), but at the same time, I couldn’t ignore this plateau we had also hit in other areas. Sure things have remained very stable and we’ve largely remained out of hospital... but it was becoming a bit disheartening that we weren't able to wean her off oxygen whatsoever, and what her quality of life would look like moving forward was really weighing heavy on me as a mother.
So after a year of being patient and waiting to see if Evanna would improve on her own, I decided enough was enough, and as I stated before – “put my advocating mama pants” back on and seek an official opinion from Dr. Hanley in regards to Evanna. Dr. Hanley is extremely well known in the MAPCA (heck, CHD) world, and felt that if there was going to be one person that could potentially help her and provide us with a decent option – it was going to be him. Thankfully when I brought the topic up and discussed the issue up with our primary cardiologist at a cardiology checkup we had back in September 2016, she immediately agreed that this was a very appropriate "next step" and was completely on board with aiding in this referral.
However, while I knew there’d be a few hoops to jump through -- as we’re dealing with a completely different healthcare system, country and have so many logistics to factor in, there have definitely been some major and unexpected roadblocks that prolonged this process, and it’s been quite exhausting to say the least.

The past year has been a mix of hope and dread. In the first few weeks following my request to send Evanna’s medical records down to Dr. Hanley, I kind of kept seeing “signs”, like a billboard advertising flights and vacations to California on my way home, or constant popup ads on my computer promoting the same thing (ie. California) the night I wrote this blogpost where I first publicly revealed our plans for this referral. I really tried hard to not read too much into "these signs" (as I'm not generally into that sort of thing lol), but I still noticed them. I then had so many people comment and send me personal messages of their experiences of also running out of options (and being turned away from multiple cardiac centers), and yet have their case accepted by Dr. Hanley and everything going so well.
However, as time went on, and the obstacles began popping up, it kind of chipped away at that hope and I began wondering if I was doing all this work and advocating for nothing. The cardiac cath that we did in June didn’t help the situation, and I truly began preparing myself that Dr. Hanley was indeed going to come back and tell us “no”. Heck, I even began thinking up Plan B – which was to proceed with another cardiac cath that would actually be "interventional" sometime next Spring/Summer, as Dr. S (Stollery cath doctor) had indicated that her right side was in major need of some ballooning (and maybe even stents), but didn't want to do anything during that particular cath in case Dr. Hanley accepted our case and could better fix things via open heart surgery.

But here we are, and I’m just trying to come back down to Earth and decrease all this adrenaline/anxiety that I can still feel running through my body and not put myself into early labour lol. I know the hot temperatures haven’t necessarily been helping, but I’ve definitely been having a hard time turning my brain off a getting a decent night’s sleep this past week (and I generally sleep like a rock!), and I'm constantly having to stop and literally tell myself to relax and take deep breaths several times a day.
I'm trying my best to organize all my thoughts, and slowly put down on paper what we need to accomplish over the next several months (like a passport for baby brother!!) to ensure everything will go as smoothly as possible. Everything from how we're getting Evanna down there (though, this decision will have to be made in part with our medical team), submitting a referral to the Ronald McDonald House in Palo Alto, to securing a car rental (as I'm 99.9% sure we'll be flying down there), and what we need to bring with us! Unlike before, if we happened to forget something back in Calgary while we were in Edmonton, I could easily wait for the next time Nick came up to bring it to me, but definitely won't have that luxury this time around!

Due to timing, there are actually a few things already working in our favour and definitely can't ignore these incredible tender mercies and blessings. One of the biggest is I will currently be on maternity leave during this time (at this moment, my last day of work scheduled for November 23rd and with the vacation time I've built up over the past year, aim to have my LOA start on December 8th), and so I won't have to worry about getting time off work and will be receiving EI for that 12 month period. While I'm interested to see how everything lines up, Nick already has vacation time scheduled for sometime in February (but I know they may push for a March surgery date) and specifically set aside and reserved additional vacation time for this exact scenario when he submitted his vacation request last March (I also wouldn't be surprised if they let Nick switch around that February vacation time if need be too). Regardless of when we actually GO, I know Nick getting time off work won't be an issue, as he's been very open and communicated this referral to Stanford Children's Hospital to his supervisors from the very beginning, and we've been blessed with the most incredible support from both management and his EMS colleges since Evanna was born.

Thank you so much for the outpouring of incredible support over the past few days. I've actually received a number of messages from individuals who live in the Palo Alto area with offers of help should we need any, and continue to be blown away with the impact she continues to make and the hearts she has touched. 

xo The Irvine Family

PS. I promise to keep the blog updated every step of the way as we make the proper arrangements and get everything in order. The logistics it takes to go to the Stollery/Edmonton is always a little overwhelming at times -- so this is all just a  little daunting to say the least!


Follow Along

Wednesday, August 30, 2017

#CALIFORNIABOUND


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.


[THE SURGICAL PLAN]

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.


[HOW WE FOUND OUT]

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.


POSITIVE

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 family....so 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!

FIRST TRIMESTER QUESTIONNAIRE

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