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

Thursday, February 2, 2017

january happenings -- postop mayhem and last minute hospital admission

If January is going to be any indicator of how the rest of the year will go… then I might just retreat to my bedroom and hide under the covers til’ Christmas. It’s been one appointment after the next, working, continued construction of our basement, and just life in general. The last few months have definitely made me see why lots of moms of medically complex children give up their careers to stay home (or move to something that’s more home based), as I swear each day I’m adding another appointment that we have little say in. Clinics call and basically name the date and time, and unless it conflicts with another medical appointment – I just have to take it with a smile…cause these are specialists we’re talking about… and you take what you can get! It’s made me appreciate the careers Nick and I choose, and the ability we have to work around each other’s schedules so one of us is generally available to take Evanna to these appointments (along with the additional resources + funding we are given to ensure we have a 2nd person with us to help facilitate the transfer). It’s downright exhausting some days. I know it has more to do with the fact that most of this is currently “postop” related… so while February, March and April are expected to be just busy, I really hope just like last year, that things will somewhat calm down for the summer (pretty please?).


We started the year/month off by hosting a causal brunch at our house on New Year’s Day with some of our closest friends (which already feels like a life time ago). It was something I had wanted to do for a while, but was unsure if it would happen given the whole Endocarditis situation and hospital admission. Thankfully Evanna flew through recovery, and we got home just before Christmas, meaning I was able to salvage our New Year’s brunch plans after all.

The following week we had our Complex Airway Clinic appointment -- our first one for 2017 (at the moment we still see them on a monthly basis). While the Respirology team stayed up-to-date through emails over the past few months and were kept informed on her respiratory status while we were admitted, they were happy to see her back in clinic -- and looking so great I might add. The physician we saw happened to be the one who did Evanna’s bronchoscopy last May, and while he tends to be a “man of few words”, was thrilled to see Evanna. He noted how pleased he was to find out that despite dealing with something like Endocarditis, that she remained very stable – and even got to go home for a little bit in-between while we waited for her surgery (until we lost her PICC line that is….). Then to be discharged after just 11 days from surgery was just remarkable and just another indicator of how strong she truly is getting. While in clinic, they monitored her CO2 levels, and it stayed within a range of 28-33 (she use to sit in the 50s). Nick later told me that they average person sits between 35-45 and so this is one of the very first signs of being “over-ventilated”, and it’s time to proceed with another bronchoscopy to finally see if Evanna is ready to handle vent decreases (which the Respirologist agreed with). So once they consult with our ENT to see when he’s in the OR (they don’t necessarily need him for the procedure, but would like him in the “area” to pop in and quickly see Evanna’s trachea while they’re scoping her), and will book a date as soon as possible. From my understanding, we are currently aiming for March 1st, with a backup plan/date of April 5th – cause as you all know, it somewhat takes a “bump or two” before we actually see a procedure happen around here. Oi vey.

On January 19th, we saw a special developmental pediatrician that we were referred to by the genetics clinic back in September at the Child Developmental Centre. I was initially told to expect a 3-4 hour appointment…but thankfully we were only there for about an hour. We didn’t learn too much that we already didn’t know, and essentially confirmed that we are already accessing the appropriate supports we currently need for Evanna. The pediatrician explained that she see’s many families with developmental issues, but most of them don’t have quite the extensive medical background that Evanna does – so sometimes the appointment can be quite lengthy as it goes into how to access certain programs – however, because of “all the medical stuff”, we don’t really have to fight as hard for certain resources and it all kind of “just falls into our laps” (as parents we still have to inquire and request for referrals to be sent…but for the most part we are immediately approved given our medical situation…another trach silver lining perhaps?). There were a few things that I did take away from this appointment that were very important to recognize as we move forward with Evanna’s care and development. The first thing the pediatrician said is we’ll probably never know if Evanna’s delays are actually “22q” (her chromosomal syndrome) related -- something the pediatrician said she specializes in; and for the most part, we will consider all of her delays medical related (very prolonged intubation period, very chronically sick until about Spring 2016 and the extensive sedation medication Evanna was on over a 12 month period). Next (which is somewhat common sense…), is that children cannot develop when they’re sick. So though we’ve been home since November 2015, Evanna was still technically pretty sick those first few months (there are times I wonder how we ever survived that initial period we were home lol) and it’s why we really didn’t see much development until about April/May. However, if Evanna continues to remain “healthy” (or as I always say “Evanna healthy”), we should continue to see lots of momentum in her development. Thirdly is that the pediatrician noted that Nick and I seem to be very realistic when it comes to our expectations. I guess she often see’s parents who come to her very frustrated and with somewhat unrealistic goals – and so she was happy to hear that we understand our complicated situation, know things will take time and though we will continue to push Evanna, it will have to be at an acceptable pace. To quickly note – based off her assessment, minus communication, the pediatrician placed Evanna at about 12 months of age developmentally…which closely matches to our time home (minus those first few months) and what I was hoping to hear. On Facebook I see a lot of parents absolutely devastated with these types of assessments from developmental appointments, but I feel like Nick and I are pretty realistic and so we weren’t thrown for a loop or caught off guard with anything that was said to us.
Lastly (and most importantly), was speech + language. While we think Evanna is making great gains in regards to physical therapy (she got fitted for a walker a few weeks ago!…but more on that later), the pediatrician feels the one place we might experience a lot of trouble will be her communication…and that’s due to three reasons: first is “22q kids” tend to take a little longer to develop this skill and it’s very well-known they tend to not talk until they’re a little older. She then went onto explain that there’s a certain “window” that these skills begin to occur, and due to circumstances outside of our control, we basically missed that window (…and here’s where I begin to wonder if maybe Nick and I should have proceeded with the trach a lot sooner than we did….oh well – hindsight is always 20/20). Finally (and the most obvious), is the mechanical obstruction that the trach presents. Due to all of this, she definitely would like to see other tools incorporated that will allow Evanna to communicate with us -- and the hope is that once a few of these obstacles are removed, it’ll allow for an easier transition. Sorry, I got more detailed then I had originally intended too, but it’s nice to take the time to properly explain things. Yes, we definitely have our work cut out for us and #Evannasroadtorecovery will be years in the making, but it will all be worth it.

Last week was busy seeing our speech-language therapist where she showed us a few of the tools that the developmental pediatrician talked about and then getting Evanna fitted for a walker! Just like the standing frame and exersaucer, she absolutely hated it (girl hates change), but we know she’ll learn to love it in no time too. We’ve recently come to a place where the standing frame and exersaucer are no longer challenging for Evanna (she almost gets too excited when we pull them out to put her in), and so this has become the next natural step. We are now waiting on AADL funding to go through (though there is still a large portion that Nick and I still have to cough up…) – which takes about 4 weeks, to which it will then be delivered to our house to begin implementing into Evanna’s daily routine. We will still continue to use her standing frame and exersaucer as they provide great weight-bearing opportunities, but my hope is that over the next yr we will slowly transition from the standing frame to the walker exclusively. Baby steps!

On Thursday [January 26] we saw our cardiologist for our official postop checkup and talk about Cath plans. The ECHO went very well and the tech was able to get a ton of amazing images! This particular ECHO tech is one we are extremely familiar with as he’s done probably about 80% of Evanna’s Calgary ECHO’s -- and we just love it because we’ve been able to build a nice relationship with him over the years. In fact, back in April when we were dealing with that major sternotomy infection – there was a lot of confusion surrounding a “sedated ECHO” to take place while Evanna was getting a CT done, but it was causing a lot of logistical issues and headaches at the time. Thankfully this ECHO tech knows Evanna very well and called up to the unit to explain that Evanna does NOT need to be sedated for an ECHO because she lies very still and normally is pretty easy to perform ECHOs on. He then came up to the unit with his equipment and immediately did the ECHO to prove his point – it was awesome! ANYWAYS, this ECHO went extremely well, and the tech got a LOT of amazing images of Evanna’s heart, and Megan (Nick’s sister who was helping me for the day) and I were laughing at the tech’s enthusiasm when he was hitting the “perfect spots” and getting some wonderful images of her new valve, her collaterals (which is rare to see from Ultrasound), and left ventricle. It was a fun exam to say the least.
After the ECHO, we met with our Cardiologist to discuss how Evanna has been doing, and overall was happy to hear that things have been going better than ever. We decreased her Lasix (it’s a diuretic med) to just once a day and will probably take her completely off of it the next time we’re seen in clinic. We discussed what’s been going on from an infectious disease standpoint, as well as respiratory – and she was ecstatic to hear about the potential progress we’ll be making over the next several months. We then discussed plans for the Cath that we still need to do that was requested by Dr. Hanley (the Californian surgeon). We don’t need to “present” Evanna to cardiac conference in Edmonton again -- as that was already done back in the fall, but now that Evanna has been off antibiotics for several weeks, we just need to do ONE more blood draw to check that things remain “all clear” and our cardiologist will send the referral for the Cath…. which means we’re now aiming for a March date. I was slightly disappointed with this timeline, and overall hate just how much impact Oct/Nov/Dec’s Endocarditis episode has had over this California timeline (not to mention all the surgery bumps due to the terrible RSV season Alberta experience this past winter that created a huge bed shortage that we definitely felt the effects of). Regardless, we’re back on track and I really feel like patience is truly becoming a virtue of mine (and if you ask my parents – that’s quite an accomplishment lol).

So, what’s been going on this week? WELL, I received a phone call last Friday from one of our Respirologists about a concern we’re having in regards to some ventilator alarms. For about a month and since our last Complex Airway Clinic appointment that we had several weeks ago -- we’ve been dealing with an increase of alarms coming from Evanna’s ventilators. The one of most concern is the “apnea” alarm (she’s trying to breath below a set rate while sleeping…. so I assure you it’s not a “true” apnea situation and she’s absolutely just fine), and so between that AND our CO2 results from our last appointment, we believe Evanna is being “over-ventilated” and growing out of her current settings – which is a very GOOD thing! They originally tried to get us into the PICU on Monday for some vent tweaking…but of course that didn’t happen…we tried again today….and now we’re trying for an admission TOMORROW (trust me, the Respirology team is not happy with ICU communication right now). I am so over this whole “gotta be bumped at least 2 times” before SH#% happens – especially when you consider the bronch and Cath coming up in the next few months that I just KNOW is going to have similar scenarios…. and so I’m currently having a “FML” moment right now lol.

Lastly, Nick has been kept very busy with working on the basement suite (with help from his brother Ryan), and is literally is down there whenever he has a moment to spare. Evanna obviously complicates that, and unfortunately he can only get to it if I’m home to watch her or we have a nurse at the house. It’s still coming along quite nicely (painting is finally done, and kitchen cupboards are all in -- including the countertop and backsplash), but we’ll be so glad when this project get completed and we can finally focus on our own home (and boy do I have lots of ideas that I want to see happen lol….lucky Nick). I’m stuck trying to figure out a simple birthday theme for Evanna’s 3rd birthday (I’m open to ideas – so if you have any, feel free to pass them along!), and overall doing my best to keep my head above water.

Yesterday kicked off HEART MONTH, and while recent events have prevented me from planning anything major to aid in raising awareness, I was still able to get a few projects and collaborations put together –so stay tuned! Currently I have a little contest running with @MIGHTYWARRIORDESIGNS over on my Instagram account, and $2 from all sales of their Heart Collection is being donated to the Stollery Hospital Foundation. Cheers!

xo The Irvine Family

PS. If you powered through and read through this entire post (and somewhat stayed focus without your head spinning from information overload), then B R A V O! Seriously! I know I throw a LOT out there, but I honestly do try my best to break things down for those who aren’t familiar with the medical world (and to be honest – it also helps me to write all our current happenings, as it helps me take all my jumbled up thoughts and arrange it neatly on this blog). If something is still confusing, please feel free to ask questions, as I don’t mind explaining things further!

PS2. I want to thank Jody Frank and her Grade 3 class from Montreal for all the lovely Christmas cards that were sent to Evanna back in December (I think they came JUST in time for Christmas too!). I love it when our story is shared to both help inspire and provide a little perspective in a world that can sometimes be so full of noise. We have been recipients of so much generosity over the years, and no matter how big or how small – each little act of kindness has always been greatly appreciated. Thanks again xoxo

Monday, January 23, 2017

|| not just your ordinary monday ||

[January 23rd] – today is just another Monday to most, but to me, it’s one that surprisingly brought more significance then I thought it actually would. It’s our original due date with baby #2.

Why am I surprised at its significance? Well, like I have previously explained, though Nick and I were initially upset last Spring when we found out my pregnancy was unviable, we kind of got over the whole ordeal pretty quickly, and got back to focusing on our daughter Evanna… which is easy to do, when you consider the many distractions she brings lol. I know that it’s a kind of callous thing to say, but when a somewhat small situation (to us) follows a very monumental life altering event (ie. our 13 month hospital admission), at the time you’re just kind of drained of all emotions to properly mourn that type of thing. Our perspective differs greatly from most (at least that’s my opinion), and getting disappointed and emotional over a pregnancy we only knew about for a handful of weeks just wasn’t going to happen. We’ve been through so much worse, and so for us this was just a little lemon we added to our lemon tree, and that was that.

For the most part, I had honestly forgotten about my miscarriage, but we’ve been trying for another baby since October, and our lack of success thus far has made me ponder on it in recent months. Unlike before – we’ve recently been getting negative pregnancy test after pregnancy test over the last few months (including a few weeks ago), and each one brings a little bit of anxiety. I know that’s not a very long time in the grand scheme of fertility journeys, but it’s something we haven’t experienced in the past, and so it’s kind of freaking me out. We hope it just has something to do with my very late miscarriage (I was almost 12 weeks before my body decided to finally miscarry naturally) and emergency D+C, and so my body is just taking it’s time to get things back in order. I think it is -- as my cycles are finally starting to normalize again, and I’m praying this is just a small hiccup on our road to having more kids.

Overall, I still don’t think it’s the loss that I’m upset about, but it’s kind of mind blowing that we could have been welcoming another baby into our family this week, and it’s a little heartbreaking that we are nowhere close to doing that. Like if I was currently pregnant, today would have just been another day, and the “life planner” side of me wouldn’t be so worried. Yes, I’ve learned that things happen for a reason and everything ends up working out in the end  – but I’m ready to lead a less dramatic life, and for things to “just be normal” (though, I gotta admit – it makes for some great blogging content!). Bring on the boring life filled with lots of “carefree moments” and be that “all Canadian family” (can’t say “all American family”… cause well, we’re not American lol). Cause yeah…. I have absolutely no desire to add “fertility issues” to our AboutUs page (which is in desperate need of updating btw), and wouldn’t mind if I could stop feeling like we’re being punished for something, and life would just start being a little kinder to us….

xo The Irvine Family

Sunday, January 8, 2017

|| 2016 + and why I'm so nervous for 2017 ||

“just a couple of curveballs” – that’s how I would personally describe 2016 (“high highs and low lows” would have definitely been 2015’s description if I had actually gotten around to doing a “review blogpost” last year…. but we were somewhat in “survival” mode that December, and blogging kind of fell to the wayside for a few months). We saw Evanna thrive beautifully over the year since coming home, remain stable, and most importantly – OUT of hospital save a handful of admissions (April, October + December). However, despite some major gains and getting a few relaxing breaks, there were some areas where we were unsuccessful in accomplishing certain goals (ie. wean oxygen and ventilator support) and received less than favorable news in regards to Evanna’s health, and it has made me a little nervous as we move into the New Year…. Shall we begin?

Well, not only did we end the year with a surgery, but we also started the year with one too. After about 16 months with an NJ/NG feeding tube and finding out that we are potentially facing years of tube feeding, we (well I) decided to proceed with a GTube surgery. Nick was a tad apprehensive about putting Evanna through another surgery and essentially creating another “hole” in her body (who could blame him?), but thankfully the surgery was our smoothest to date, and we both agree it the best decision we’ve ever made (unlike past surgeries, this one was on the more “elective” side, unlike the multiple open heart surgeries she's had). Under the same anesthetic, they also performed a CT to try and get an idea of what her “collaterals” were doing. While we weren’t exactly surprised by the CT results, it unfortunately wasn’t what we wanted to hear, and only confirmed Evanna’s grim long term prognosis.

Spring was both rough and a little harsh for our family, while also granting a few tender mercies and milestones for Evanna. We were able to successfully wean Evanna off all her diuretic medications and supplements associated with them, and she finally began to gain the strength and learn to sit up with limited support. It however brought our second admission of the year that required a trip back up to Edmonton when she developed a sternotomy infection that required a pretty big debridement surgery. The recovery wasn’t smooth sailing -- but overall it wasn’t a horrible admission (by our standards), and we were able to see some of our favourite friendly faces during our time at the Stollery.
In May we found out I was pregnant, only to find out that the pregnancy was unviable during an ultrasound a few weeks later. Unfortunately, my body didn’t get the memo, and I was almost 12 weeks along before naturally miscarrying, and ended up in the emergency room in some pretty intense pain (which landed me in operating room at 3am for an emergency D&C on July 4th). We also proceeded with a bronchoscopy for Evanna to see how her airway was looking near the end of May, but we were left with some undesirable results and were disappointed that we couldn’t make any decreases on her home ventilator during our time in the PICU.

Ahh – S U M M E R! If there is anything that will make me smile looking back on 2016, it will be the wonderful and relaxing summer we got to enjoy. We seriously didn’t have any medical appointments between the end of June and September, and got to enjoy some “care free moments” that we so desperately needed. I went away a few times up to a friend’s cabin outside of Edmonton and let loose at a country music festival over a beautiful August weekend. We moved into our new home at the end of July and ended the season with some wedding fun of some very dear friends of ours.

Then September rolled around….. and if you recall, I wrote this blogpost in which I spoke about “rocking the boat” and bracing ourselves for a busy Fall/Winter. In hindsight, I wonder if I somewhat jinxed myself and made things worse, but at least we were somewhat mentally prepared for what was about to come our way lol. We had some major appointments take place that month, but most notable was cardiology where we officially asked our cardiologist to send Evanna’s medical records for a referral and seek out a second opinion from Dr. Hanley down in California about Evanna’s heart, and inquire if there was anything more he could do for her. Unfortunately, a few weeks later, Evanna started to deteriorate at home, and was diagnosed with Endocarditis with the infection turning out to be one of the worst you can get in your blood stream – pseudomonas (it’s a very “sticky” bug that’s very hard to clear). At one point during our admission, Evanna caught a cold that bought us a ticket down to the PICU for a week, but once she was stable and we figured out a proper antibiotic treatment course, we were discharged home until we could proceed with an open heart surgery to replace the infected prosthetic material that resides inside her heart. We somewhat hibernated all of November to keep Evanna as healthy as possible, but the PICC line clotted and we ended up being readmitted on December 1st and remained in hospital until we were finally transferred up to Edmonton on the 11th for her 4th open heart surgery on the 12th. Considering the intensity that every open heart surgery brings, Evanna blew everyone away with only staying 1 night in the PCICU, and did relatively well in the step-down unit the following week. After the chest tube was removed (1 week later…), Evanna was flown back to Calgary on December 21st, and we were surprisingly discharged home just before the holiday weekend on December 23rd and got to have our little Christmas miracle after all.

On to some other accomplishments…. though this post seems to be centered around Evanna, there have been a few personal goals that Nick and I have been working on since we got married (heck even before then) that don’t have anything to do with Evanna and her health, and we’re proud of finally obtaining a few big milestones and reaching some of those goals in recent months. As previously mentioned we moved out of our townhouse this past summer and into a new house that we began building last Fall (around the time Evanna had her “big discharge”). We actually saved up a 2nd down payment for this new place, and kept our townhouse as income/rental property (which has now been rented out since last August). When we set out to building our current home, we actually built it intending to turn it into a double income property in the near future, and kept that in mind throughout the entire buying/building process (adding a separate entrance into the building plans, building on a larger corner lot, ensure we had a laundry room upstairs and space for a 2nd laundry room in the basement suite, etc). This past October while Evanna was in hospital and we were dealing with some rough news, we received a letter in the mail from the City of Calgary giving us permission to proceed with building a LEGAL basement suite! So while we’ve been extremely busy with Evanna and her health the past few months (ie. her 4th open heart surgery), we have been even busier behind the scenes (well, more Nick…. but that meant I was on full “Evanna duty” up in Edmonton) dealing with trades and developing our basement. Currently we just completed the drywall and mudding phase and Nick hopes get some paint up on the walls sometime next week. We hope to have the entire project done by the end of February and rented out by March/April (which will dramatically lower our current cost of living), and I can’t wait to show you the final results! It has taken a lot of work, self-control, and commitment to get to this point, and there are still several things we have to work on in the foreseeable future. Yes, Evanna’s hospitalizations have sometimes complicated achieving this, but we “pressed forward” whenever things were stable and did our best to “live below our means” (our answer when people ask us how we save the money to do all of this). Our goal is to move again in about 5 years to a more permanent home where we can put down some roots and raise our kids (I hate to use the term “forever home” …cause well, life is life and you just never know what could happen), which will allow us to rent out the top half of this property. After that, I have no idea what we intend to do, but I think our current “5 year plan” is keeping us busy enough and we’ll discuss it when the time is right. Will we continue to try and obtain more income properties after moving again, or find a different way to invest for our future? Only time will tell, but I just wanted to share this triumph that has been years in the making (we’re talking 6-7 years of planning and saving here) and something we’re proud of obtaining in the timeline we originally set for ourselves.


So what’s on the docket for 2017?? Well, we’re starting off the year hitting the ground running with oodles and oodles of medical and therapy appointments. With Evanna’s case of Endocarditis behind us, we have a lot of catching up to do, and have some pretty big things that require our immediate attention. First up will actually be a trip BACK up to Edmonton (yes, you read that right!) to proceed with a cardiac cath to send down to Dr. Hanley in California as previously requested. I can’t express how much is riding on this test and I just want to get this over and done with so we will know where we stand. I’m balancing both hope and complete dread as to what the cath will show and what Dr. Hanley will say. The cath could show that there is some collaterals within lung tissue that he can rehabilitate, or it could show that there is nothing that can be done, and will just have to enjoy the time we have with Evanna knowing not much will change or improve. Yeah – that is a pretty intense way to start off the New Year.

On a respiratory side of things, the team is eager to do a bronchoscopy to see if we can finally start decreasing Evanna’s vent settings. During our admissions between October + December, many of the Respirologists were able to physically see Evanna’s strength (not to mention how well she recovered from this latest open heart surgery), and we are all crossing our fingers that it’s starting to reflect in her airway and allow us to decrease some settings – namely her PEEP. We have an airway appointment next week, and the main thing I plan to discuss is pushing booking an OR for a bronchoscopy (and if there is one thing I’m good at – it’s being pushy!).

Finally Evanna’s development – our genetics team has put in a request for us to see a pediatrician who specializes in child development, and our appointment is in a couple of weeks. Though Evanna has developed by leaps and bounds over the last year, there are still lots we have to accomplish, and so I’m very interested to hear this physician’s assessment and recommendations. Evanna doesn’t really know it, but I’ve got some “New Year’s Resolutions and Goals” for her, which include walking by summer, introduce and work on communication skills (both in the forum of sign language and hopefully a speaking valve once we can decrease her PEEP settings on the ventilator), and hopefully pass our next planned swallow study (just waiting on a call back with a confirmed date) so we can begin some intense feeding therapy (don’t worry, I’ve given myself a few goals too!).

In A P R I L, Evanna will turn [three] years old, and so believe it or not, thoughts are very slowly starting to swirl around my head with some plans and ideas for the big day. Other social plans are already starting to populate my agenda, but I’m hesitant to make any promises past April until after the cath and we hear back from Dr. Hanley with his final opinion. Last year, due to Evanna’s somewhat “unstable” health and safety, Nick and I did a lot of separate events so that one of us was always home (or just minutes away), but this year we have agreed that with her being older and much more healthy + stable, to somewhat do more things together as a couple – such as a simple getaway weekend and fit in some more “us time”. There is lots I would love to do this summer, but again, I’m holding off on making permanent plans until after Evanna’s cath and we hear back from California. Other than that, my fingers are crossed that Evanna will finally enjoy a first Thanksgiving at HOME, and we have an even healthier year with even less time spent in hospital.

Thanks for continuing to be a part of our lives and hope everyone enjoyed the holiday season!

xo The Irvine Family

Saturday, December 31, 2016

|| a little Christmas miracle ||

Photo courtesy of Laramie Tracz Photography

Did December even happen? If it didn’t contain the biggest holiday of the year, it probably would have passed me by without even noticing. A few days after my last post, Evanna’s PICC line (what allowed us to be home while on IV antibiotics) clotted on us and so we had to bring her into clinic. They ended up inserting a PIV (peripheral IV – aka a basic IV) and decided to just admit us for the weekend until our transfer up to Edmonton on Tuesday (December 6) for surgery on December 8th…. which ended up getting bumped to a December 11th transfer (the same day my sister had another baby no less!) and surgery on the 12th. In between all of this, Nick and I quickly drove to Edmonton to attend the Stollery Foundation Gala that we’d been specially invited to attend – where we had a lot of fun and hope to attend in a few years when Evanna is older (as I know the foundation really wanted to see Evanna go).

Let’s just say that this particular admission resulted in several setbacks (not including that our surgery was originally slated for November 23rd), and was somewhat exhausting, as we tried to keep a busy little toddler entertained. Given our history, the admission was somewhat a “drop in the bucket”, but man oh man – it sure had its difficulties. Evanna’s improved overall health and stability actually caused several headaches, as not only our surgery but also the hospital transfers kept getting delayed due to more critical cases, and being smack in the middle of RSV season that magnified the situation. On the bright side (cause I’m a “silver-lining kind of gal”), the surgery itself went relatively well – and get this: we were only in ICU for 1 NIGHT!! Yuppers, considering the intensity that every OPEN HEART SURGERY is, this is just incredible and just shows you how far we’ve come. Evanna did lose a fair amount of blood postoperatively and they almost had to take her back to the theatre but it resolved on its own (it’s one of the risks I’ve talked about in regards to repetitive open heart surgeries). The recovery wasn’t the smoothest and it contained some heartache (ie. unable to remove her chest tube until postop day 7 and getting quite fluid overloaded), but once we were transferred back to Calgary, arrangements were quickly made to go home and we were discharged just in time for CHRISTMAS (which was completely unexpected)!

------------ Okay for documentation purposes (and save me a little time), I’m just going to copy and paste my social media updates from our December admission before moving on:

[December 2, 2016]

It's been an interesting 36 hrs to say the least.... so we had a dressing change on Wednesday that made our already "tough" PICC line nearly impossible to flush anymore. The HPTP/Infectious Disease clinic had us come into the hospital the following morning to assess and try a little TPA (aka a "clot buster"), but despite getting blood back, we still couldn't push stuff through after the first try. So they admitted Evanna last night to insert a PIV to continue with our antibiotic treatment and see if a longer run with TPA would help. Well today it was decided to just pull it (the line site doesn't look that great either), continue using the foot IV and NOT proceed with another PICC line placement. Because Evanna is being transferred to Edmonton on Tuesday for her open heart surgery on Thursday, they decided it was unnecessary to put Evanna under anesthetic twice within such a sort amount of time. Especially when they will be obtaining better access (ie. central line) WHILE she undergoes her surgery next week. So basically we are hanging out in the hospital for the weekend til Tuesday mornings admission.
This ACTUALLY somewhat works in our favour in a roundabout way. Months ago, Nick and I were invited to attend the Stollery Foundation Gala up in Edmonton on Monday night (a blacktie event for one of our favorite hospitals) and ran into logistical issues surrounding our hospital transfer when our initial surgery got bumped. Nick and I will now go up to Edmonton Monday afternoon, attend the gala Monday night, and meet Evanna with the transport team at the Stollery Tuesday morning (and we've arranged our personal nurses to be with Evanna all day Monday and aid in getting her ready here in Calgary Tuesday morning). Our cardiologist may or may not have laughed at the turn of events and how everything ended up working out, as this had been the topic of discussion for the past wk or so....

[December 7, 2016]

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

[December 11, 2016]

|| #edmontonbound || ..... finally. We are going by ground this time, but the team is so desperate to get Evanna up to Edmonton today, that at this point we don't care anymore (there were even talks of "discharging" Evanna, and Nick and I would quickly drive Evanna directly to the Stollery ourselves....but that's another story). Ohh, and my sister happens to be having a csection today, and LAST time she was in labour almost 2 years ago, Evanna ended up being emergently airlifted to the Stollery at the same time. Apparently Evanna likes to travel to Edmonton on the same day that she gets a new cousin. Our family may be slightly chuckling at this unique and weird coincidence of transfers and deliveries.
Prayers for a safe transfer to the Stollery

[December 12, 2016]

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

|| an update || I initially was going to do a full blog post, but I'll just do a quick update this evening and save the details for tomorrow. Evanna's open heart surgery went well and the switch out of valves went as planned. There was a lot of postoperative bleeding back in the PCICU, and they almost took her back to the OR to try and get a better handle on things. Thankfully things calmed down and the rest of the afternoon has been spent trying to keep Evanna nicely sedated (and if we're going to be honest here, definitely a typical Evanna problem lol). If history is any indicator, then I know we'll be in for a rough night -- so continued prayers would be greatly appreciated.

Ohh! And they also rolled Evanna out of the operating room on a "big girl" bed (not the hospital crib we're use too), and I don't know whether to be ecstatic at how far we've come or cry that our baby is no longer baby anymore #staylittleforever

[December 13, 2016]

|| postop day 2 || Evanna had a great night and only required a few additional PRN's (extra doses of sedation medication) to help with the pain. This morning they switched her from the hospital vent over to her trach and home ventilator (essentially what we consider extubation in our family lol). She's down to just one sedation infusion -- hydromorphine, which has also been significantly decreased, and hope to completely flip her over to Advil/Tylenol in the near future. Her central and arterial lines have both been removed and are aiming to have the pacing wires and chest tube out tomorrow (yesterday's blood loss is prompting the team to keep those in for one more day). This afternoon they started her on a little bit of formula/feeds and are hoping to transfer Evanna out of the PCICU and upstairs to the stepdown unit called "ICE" (Intermediate Care Environment) later tonight. Nick and I are somewhat unsure of what we think about this and can't believe how fast this is all happening, but the intensivists are ensuring us that Evanna is doing fantastic and this is "what's suppose to happen". >> that's right, our little girl who endured an almost 11 month ICU stay last year after her first open heart surgery, may make a break for it and transfer out of ICU in less than 48 hours! ------------------------------ This morning we received a very special + precious gift and I even cried while opening it. We got our hands on the new @themaddendelucafoundation monkey that represents one very special little boy who was also born with a special heart. An incredible foundation was created in his honor by his amazing parents, and it has provided so much support to other heart families and now funding some much needed research for congenital heart defects. Be sure to look them up!

[December 14, 2016]

|| postop day 3 || considering all the things we accomplished yesterday, we experienced quite the opposite today with an overall boring day. Evanna was transferred up to the floor last night and we're now in the "ICE room" until we're transferred back to Calgary. Evanna's drainage tube in her chest was still outputting too much blood, so the team decided to hold off another day before taking out her pacing wires and chest tube. This meant we could only decrease her hydromorphine infusion by a smidge, which meant she continued to sleep almost the entire day (which I know is a good thing for recovery purposes...just miss her happy bouncing personality). We've continued to increase her food intake via her GTube, and should be at full feeds by early tomorrow morning – then will see if she'll tolerant bolus feeding after that.
Current concerns is the lack of pee + poop, but we've introduced the regular tricks to hopefully move things along (diuretics and laxatives), and we're just hoping we'll see something in the next 12-48hrs. Infectious Disease is also heavily involved to talk about a long term plan moving forward. We will continue on IV ceftazidime and have replaced her oral Cipro (due to neurological side effects  that we were starting to experience prior to surgery) with tobramycin...which is also IV, both of which might be ordered for the next 4 wks – which means we could definitely see ourselves spending another Christmas in hospital – but we'll wait til we get back to Calgary before trying to sort that all out. This also means we need to insert another PICC line and they're trying to decide whether we should do that here in Edmonton, or wait til we're back in Calgary. At the moment Evanna's platelet count is low, so it's something they won't do anyways until they see some improvement.

[December 15, 2016]

|| postop day 4 || today Nick left and went back to Calgary – as he returns to work tomorrow morning. While we both welcome the little breaks and know it aids in keeping a healthy relationship (while also paying the bills lol), I still hate loosing my best sidekick during hospital admissions. To be honest – while I'm generally the one in charge of and good at advocating, dealing with the doctors and keeping all the medical stuff in order, Nick is better when it comes to being very attentive towards Evanna and caring for all her little needs. I can definitely take care of Evanna just fine on my own, but he's so much better with her, and their bond is so incredibly special.
Evanna's chest tube was still outputting too much blood and so we were again unable to take it out today, but we will continue to cross our fingers for tomorrow. We did however reach full feeds this morning and began to bolus feed throughout the day (vs continuous). We've also gotten a little poop + pee earlier this morning, which is a great sign that all her systems are returning to normal and hope we see more as the day unfolds (girl is so puffy). Her platelets have also improved, so they've put in a request for a PICC line insertion for tomorrow – but know there's a possibility that it might not happen til Monday. We're down to just one little IV (which was put in this morning) and so due to incapability with her antibiotics, had to switch her from IV hydromorphine to oral dilaudid – which so far seems to be tolerated just fine.
I want to thank Laramie (@laramietraczphotography) for stopping by yesterday to capture this very emotional moment. As you all know, documenting this journey through photos and words has become incredibly important to me over the past 3 years and has become my biggest outlet to process and cope with our situation.

[December 16, 2016]

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

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

[December 17, 2016]

|| postop day 6 || look who sat up for a few moments today -- chest tube and all (no smiles...but who could blame her)! Just like the meaning of her name, this girl is one heck of a "young fighter" – the meaning of Evanna's name, and continues to be so incredibly strong and brave. They did a few dressing changes this afternoon (sternal + PICC line), and the nurses couldn't believe how well behaved she was for a toddler – as she lied so patiently and perfectly still during the procedure. This little girl makes me so happy and I'm so proud to be her mom.

The chest tube is finally starting to slow down and output less surosang fluid, and so my fingers are crossed that we'll finally be able to take it out tomorrow. After that we can begin talking about a transfer back to Calgary and slowly work on a discharge plan (though, I'm not holding my breath for Christmas...)

[December 18, 2016]

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

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

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

[December 21, 2016]

|| taking a private jet at sunset -- talk about traveling in style || see you later Edmonton, it's been a slice! It's been a hectic few days, and it all started with our transfer back to Calgary. After finally securing a bed at the Alberta Children's Hospital, there was some confusion on how to actually transport Evanna there. It's protocol to always fly patients that are vented, but because she's very stable and the transport team was super busy with more critical patients (tis' the season), it was decided they wouldn't send us with a full crew. Well paramedics are not trained to operate in order for the transport to proceed – I had to accompany her, as I know my way around her Trilogy home vent. Nick was back in Calgary (and sick I might add), but thankfully my parents agreed to drive up to Edmonton that night and retrieve my vehicle for me. We're all settled on Unit 2 and planning our discharge.

Edit: I also wanted to add a cute little story. While getting unloaded from the ambulance at the Edmonton airport, one of the flight medics looked at me and asked "are you Nick Irvine's wife!?!" Turns out the flight paramedic used to work in Coronation where Nick was an EMT and is close friends with a very dear friend of ours!

[December 24, 2016]

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

------------------------------- DONE ------------------------------

**one tiny little and unique coincidence that I didn’t even notice until earlier this week (despite being written in my agenda that I hardly checked while we were admitted) was the day Evanna had her surgery (December 12), also happened to be the marker of “400 days” since our 400 day admission on November 9, 2015. A bittersweet moment for sure!

Though we were out of hospital and at HOME for the Christmas holidays, there was only a day or two of relaxation, as things were still quite busy with both personal and social plans (some of which I’ll reveal/talk about in my next post when I do a little 2016 review blog post… so stay tuned!). Just before discharge we were dealing with slightly lower oxygen saturations, but with a fabulous looking ECHO and blood gas (and no other symptoms), we went home and were told to just keep a closer eye on her (which we do anyways lol). Evanna is also on “sternal precautions” until January 23rd, which has been an interesting situation when you have a toddler who is heavier then she looks (a common statement we hear from nurses at the hospital lol) and still not mobile. Essentially we can’t lift her from under her armpits, but from underneath her bum like a newborn instead – so getting her in an out of her cherished exersaucer has been a work of art to say the least! We managed to salvage original Christmas plans with my family on the 24th, and replan things with Nick’s family on Thursday (Nick worked most of Christmas… so dinner had to be slightly delayed).

Evanna also had a mini cardiology checkup on Thursday (as we’re just over 2 wks postop, and like I already said, we’re all keeping a closer eye on her). She still has lower oxygen saturations, but Evanna’s iron level is lower than normal, so we believe that’s the reason – which is somewhat to be expected after a major surgery and considering the blood loss she also experienced. Evanna completed her IV antibiotic treatment coarse earlier this week and after seeing Evanna’s cardiologist, Nick took Evanna down to the Infectious Disease/HPTP clinic where they removed her PICC line! Our cardiologist is going to submit the cardiac cath paperwork in January, and we’re aiming to proceed with that procedure sometime at the beginning of February – but as we all know, it will happen when it happens lol.

Currently my agenda is starting to populate with all sorts of medical and therapy appointments over the next 6 weeks, but again, I’ll save those details for next weeks’ blog post. Nick and I have made some simple New Year’s plans this weekend followed by hosting a New Year’s Day brunch at our house the next morning (but I still hope to do an official “open house” party when feasible), and are happy to be slowly returning to “our normal”.

From our family to yours – we hope you all had a great Christmas holiday and all the best in the New Year!

xo The Irvine Family