Sunday, October 29, 2017

|| say HELLO to our homecare nurses ||

[a few disclaimers] this post is only possible due to several factors -- first is that our homecare nurses are privately hired by Nick and myself (though we are financially funded and quarterly audited by Alberta Health Services via their Self Managed Care program) and not through a nursing agency (which potentially could have made it impossible to publicly write a post like this). Secondly, posting these pictures are only done with the complete approval of our homecare nurses. Privacy is something that is extremely important in healthcare as well as on a personal level. While I've made the individual decision to be "a blogger", and choose to post about our family life in such a public way (though there are indeed several aspects of our life that we do keep offline and completely private), that doesn't mean our staff have to be subject to it. While it was indeed through this platform that they applied for the job to come work for us (probably the biggest blessing that has come from my blogging and Instagram posting when I think about it), they are still entitled to their individual privacy within their work environment. Thankfully, they agreed take photos with Evanna (and in return, have been been given permission to post and personally use these photos too!), and are allowing me to publicly post and talk about the side of healthcare (and essentially what is a HUGE part of our life) that often has to legally remain private.

Finally, I also want to also recognize my cousin Jess and good friend Amanda who also lend their nursing skills to be additional backup/respite to our main team, and work a few times per month when needed. It's never a bad thing whatsoever to have a large "pool" of people to pull from that we can completely rely on. When you have a child like Evanna, it immediately closes off all the normal channels of childcare... most of the time including your own family members. While I hope one day Evanna will get the normal experience of staying with Nono + Nona (my parents) or Grandma  + Grandpa (Nick's parents) for a sleepover, it's just not something that exactly feasible due to both safety and comfort levels. So it's been such a blessing to have these two other girls that have also been trained to watch Evanna and we can call upon should we need help filling some holes in our regular nursing schedule. 


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[Cecilia, Carmen, Evanna + Rebecca]

So to be perfectly honest, I've been trying to write this post for well over a month now, and somewhat hit a bit of a "writers block" when trying to convey exactly how I feel and what I wanted to say about our absolutely amazing homecare nurses. But how do you put into words and express your love + gratitude towards people who have literally been the greatest support (regardless of the fact that they technically get paid) in your life? Having and dealing with a very ill family member can be an incredibly heartbreaking situation, and unfortunately homecare can sometimes actually add to the stress of it all. However, we have been incredibly blessed with 3(+2) absolute angels that have not only come into our home and helped care for Evanna, but also become a huge part of our family. Heck, I often joke that because our nurses our physically within our home every night (and plenty of days too!), they know more about Nick and I than our closest friends and family (thankfully we don't have any embarrassing deep dark secrets lol).

While I'm always flattered with the comments of praise for Nick and myself as parents over the years in regards to Evanna, I feel it necessary to talk about what kind of goes on "behind closed doors", and the people we share a large part of our life with. I've made it no secret that due to Evanna's tracheostomy, we have homecare nurses who help watch her through the night, but being that we're coming up on our "2nd Homeversary", want to give credit where credit is due. So, basically what I want to state for the record -- is that a large part of Evanna's amazing growth, development, stability over the past few years (ie. remaining largely out of hospital), and why Nick and I haven't even come close to "burning out", is thanks to our lovely and wonderful homecare nurses!

Back when Evanna began to fail extubation after extubation, our medical team started to throw the word "trach" around, and absolute fear and dread came over Nick and I at the thought of it becoming our actual reality. Despite the fact that it would be one of the most simple and routine surgeries Evanna would undergo, we knew the huge impact it would have on our life -- including the fact that we'd now have to open up our home to homecare nurses and essentially loose some privacy that most take for granted. It was seriously one of the hardest consent forms I've ever had to sign (though, to be clear, I no longer feel this way), and became quite angry at our predicament.
Homecare isn't always "rainbows and butterflies", and I've read some pretty disturbing things within some special needs groups I'm apart of -- and we too even had a somewhat "rocky start" to our homecare journey, but overall, after finding the "right fit", it has become one of the greatest blessings in our lives and we're beyond grateful for this awesome resource that's been made available to our family.


So what kind of things do our homecare nurses do? .....let's start with the "basics". When they first arrive to our home at 10pm, we generally give a quick little run down of how Evanna's day was, and let them know if anything has changed medically (which happens less and less often the more stable she has become). Sometimes this conversation can be a total of 60 secs, and at other times can last almost an hour if I'm in a super chatty mood and we decide to talk about more personal stuff (what's going on in their lives, if I want to rant about something that's currently bugging me, etc). They will then run their personal belongings upstairs to Evanna's room, and come back downstairs and begin preparing her 10pm GTube feeds and get those started. After saying goodnight, I will head to bed around 11pm and go to bed feeling at ease that Evanna is safe and sound. The rest of the night is spent giving Evanna her other 2 GTube feeds (2am & 6am), medications (2am), taking her vitals (respiratory rate, oxygen saturations and heart rate) about every 3 hours, changing her diaper and suctioning as required, and recording all this in the nursing binder.
In between all this, they have a small (at least I think it's small....) list of tasks they need to complete to essentially help prepare things for the next day. Things like cleaning out both of the suction machine canisters (though, I have to laugh, as this is Amanda's [who by trade is a L&D nurse] least favorite task. Apparently secretions are much more gross than poop and amniotic fluid lol), clean the living room humidifier pot and refill it with distilled water. They then stock the living room and bedroom carts with alcohol swabs and other miscellaneous items while essentially trying to "straighten things up" from the previous day. They ensure there's a new suction catheter (and most recently a new HME for "ventilator sprints") ready to go on the living room cart, and even restock the "diaper basket" with diapers, wipes, some face clothes and a few swaddles.
The last few things they may do through the night consist of folding any clean laundry of Evanna's and help put that away if we've run a load through the washer earlier that day, straighten up her toys and prepare a new batch of feed if required.
Other than that, they can quietly "do as they please" the rest of the night..... within the confinements of Evanna's room of course. So anything from watching movies/Netflix, reading a book, scroll on their phones, and even knit or crochet! I know Carmen will spend some of the time doing school work as she's currently doing the RN bridging program (so proud of her!), and overall the girls are essentially are encouraged to do whatever they can to help STAY AWAKE!

Through the homecare program -- we also have a number of "daytime respite hours" that we are allotted each week. We use these hours to schedule the girls to help us take Evanna to medical appointments, or keep her home so Nick and I can run errands (as taking Evanna with us is "easier said then done".....as I visually demonstrated in this previous post I wrote last summer), or even just allow us breaks for personal social fun (ie. like when Nick's work rotation falls on a weekend, but I'd like to go for dinner with friends). Like I mentioned at the very beginning of this post (in the disclaimer portion), Nick and I don't have the luxury of normal childcare options available to us (whether that be in the form of family members or a daycare), and so we're given these hours to ensure we have have a way to get out of the house and enjoy some normalcy from time to time.
What kind of things do the nurses do during day shifts? Well, there's still some of the same stuff, such as GTube feeds, changing her diapers and suctioning as required. Evanna doesn't really have any daytime medications anymore (though this sometimes changes after an admission and may have a med or two we're weaning her off of), and would say the biggest focus is basically entertaining and playing with Evanna, and work on things such as physical therapy (ie. crawling, standing and walking) and oral/feeding therapy. I often describe our nurses as "medical nanny's", as the role has shifted more and more into that of a nanny, but still have that medical background and knowledge for Evanna's safety. 

On top of our regular nursing hours, we can also request 4 "respite weekends" per year, and essentially get an infusion of extra nursing hours if Nick and I want to getaway and have some time to ourselves. While we didn't really start using these hours until just this past year, we did use it once last summer when I wanted to attend a music festival, but it ended up landing on a weekend that Nick was working. So though we both were technically in the city, it ensured that Evanna was appropriately cared for while I went and had a weekend of fun with friends (as in "normal circumstances", we would have Evanna stay with my parents for the weekend instead).
This year Nick and I did our very first night away together since Evanna was born back in February to Lake Louise, followed by a quick getaway to a cabin with friends in June and a "babymoon" to Golden and Emerald Lake at the beginning of August. We've decided to "save" our last respite weekend of the year for when I go into labour, and ensure we have extra hours to pay our nurses to be at the house with Evanna so Nick can be with me at the hospital while I deliver (which the respirology clinic is super happy about this plan btw), and we don't have to worry about Evanna whatsoever.
[added clarification] homecare and what it entails does differ from province to province, and state to state -- and also takes into consideration the needs of each individual patient. From my understanding (so just take this with a grain of sand), Alberta has one of the more comprehensive homecare programs with full nightcare hours and a fair amount of day hours, and know other provinces within Canada (based on casual conversations with other Canadian trach moms) do not offer this same level of coverage. To my knowledge, homecare in the USA also differs from state to state and is paid by/through insurance and generally coordinated by private nursing care agencies. Apparently some states offer 24/7 pediatric nursing care to babies/kids with trachs, while others offer very little help/hours. Also, at the moment (and since we've been home), our family is fully "LPN funded" due to the fact that Evanna has a trach and requires home ventilation (plus I know her critical heart defect/lower oxygen saturations/high oxygen needs makes the trach team more nervous and believe they may not want to "rock the boat" and change our homecare contract until after our 2 big open heart surgeries that are set to take place in 2018), but once we wean Evanna completely OFF the ventilator, our night hours will eventually be reduced to "HCA funding", and we will lose some of our daytime respite hours too. Essentially, I can only speak to what homecare currently looks like for our family -- which is based on Evanna's diagnoses/healthcare needs and what our provincial healthcare system offers funding wise. 

Finally, our homecare nurses have not only been a huge physical support to Nick and I over the years, but mental and emotional too! We often reminiscence on those first 3-6 months home when Evanna was still somewhat very "sick" and her medical needs were extremely high. There are times I can't believe we survived that time period without any readmissions (our first unplanned readmission wasn't until April 2016 due to a sternotomy infection), and were able to find a nice little grove in a somewhat timely manner. 
We've definitely grown more and more comfortable with them in our home, and let's just say that my pregnancy has personally made me even made more comfortable and not be so overly modest lol (at 8.5 months pregnant, I'm currently in survival mode, okay??). They share some of the same fears we have for Evanna, and have definitely become Evanna's personal cheerleaders and continue to celebrate each and every little milestone. Our nurses were quite literally some of the first people we informed that we were pregnant with baby #2, as well as our very exciting "California news"
While it will indeed be a great day when we can finally "decannulate" Evanna (take out her trach), it will also be a very sad day, in that we will have to say a partial goodbye to this support system that has just been so incredible and wonderful to our family.

xo The Irvine Family


If you're interested, earlier this year I also stumbled across this article on pediatric homecare -- which is basically another perspective written by another special needs mother on what it's all about. She did a fantastic job explaining the roles of homecare nurses, and show just how valuable they are to families like ours. While there are indeed some differences between expectations and tasks (ie. Nick and I keep track and order supplies as needed, and our nurses definitely do not call any of Evanna's doctors), every family's needs differ from home to home, and it's very important that nurses are flexible to cater to that (having a homecare nurse "stuck in their ways" and unable to recognize the needs of each individual family can definitely make things difficult and create a lot of tension and stress on the family). Anyways, just thought it was an awesome post and makes for another a great read with even more information on pediatric homecare and what it involves!

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


Thursday, October 5, 2017

|| 2nd Trimester Summary ||



How far along? 31 weeks exactly. Part of me can't believe there's only about 2 months left before I'm full term, but then there are times that still feels pretty far away.

Maternity clothes? Yup....though I'm already starting to loose interest in maternity clothes a lot faster this time around. I remember when I was around 34 weeks pregnant with Evanna that I began to yearn for my regular closet -- this time it was 28wks lol. I purchased a few more pieces to get me through the last little bit, but I definitely can't wait to pack it all up again and stuff them back into storage (til next time that is....)!

Stretch marks? Eh -- finally seeing a few new ones popping up here and there.....sigh.

Sleep: Still pretty good. I definitely have a hard time flipping side to side during the night (and I end up somewhat bouncing the bed in the process which annoys Nick just a little lol), but I haven't reached that "up a million times each night" point and whatnot.

Best moment: Evanna starting preschool + really getting the hang of crawling! She's not sprinting off the home ventilator during all waking hours yet (we're working on it!)... so it makes for some interesting moments (ie. constantly having to run after her and rehook her up to the vent every time she disconnects herself due to running out of tubing...) -- but it's a "good problem" that I've been wishing for since the day we brought her home.

Miss Anything? My pre-pregnancy body and energy levels. I've been spending the last few days being a bit concerned about my energy levels and alarmed at how worn out I get with just the simplest of tasks. While tiredness is to be expected when you're pregnant, I don't remember being this run down when I was pregnant with Evanna and I still have 8-10wks left to go! Between homecare nurses that watch Evanna during the night that allow for a full nights sleep, and a wonderful hubby that does all the cooking and a fair amount of the housework, it's not like I being "run down" (I'm also only working part time, whereas I was working full time before I delivered Evanna), yet I start to feel faint and light headed when I have to stand for longer than 5 minutes. I've been considered borderline anemic in the past, and both Nick and my mom have made comments about me looking like I have "black eyes" in recent weeks (Nick actually thought I got punched lol). So I've decided that I'm going to ask to have blood work done when I see my OB next week, and hopefully see if we can get to the bottom of things before I'm further along in this pregnancy.

Movement: ALL.THE.TIME. I know this may be insensitive to say, but baby boy moves so much... and it's almost getting a little annoying and irritating. While I'm grateful to be reminded that "all is well" once in awhile -- it's beginning to get super uncomfortable and even painful at times (boy packs quite the punch I must say!).

Food cravings: None whatsoever

Gender: BOY!! (and I'm pleased to say that we've finally settled on a name too!)

Symptoms: Oh the HEART BURN! I finally gave in, and am downing the tums like nobody's business... but apparently I'm almost through the "worst of it" according to my OB, as my body is suppose to expand more outwards (as if I'm not big enough as it is...) and give my stomach more room to relax in coming weeks.

Belly Button in or out? Is flat an appropriate answer?? I never got that "bulging belly button" with Evanna... and so I'm just anticipating the same thing.

Happy or Moody most of the time: Happy! Life is pretty good all things considering, and I have soo much to be grateful for right now (with Thanksgiving just around the corner, the subject may be currently on my mind lately). Evanna continues to being doing absolutely amazing, my pregnancy continues to be somewhat "boring" (I'm saying this in a positive tone), and I honestly have little to complain about. Between counting down the days til I deliver and slowly preparing for our surgery in California, I'm trying really hard to just enjoy the here and now. Our primary cardiologist called me yesterday to let me know the status of the out-of-country funding application (it's officially being submitted this week fyi), and we talked about the how everything feels like it did the summer before Evanna's first open heart surgery. I remember being soo impatient waiting for that first surgery to take place (as I am now with our impending trip to California) and how it felt like that day would never come -- when in reality, those first 5 months we got to spend at home the summer after Evanna was born were a blessing in disguise... and wish I would have cherished that time a little bit more. So I'm trying to remind myself to enjoy this period of health and stability, and relax, as both baby brother and the surgery will be here before we know it.

Looking forward to: Thanksgiving, Halloween + my birthday! First up is Thanksgiving, and Nick and I are hosting two of them (one with his family on Saturday, and another with mine on Sunday), as I'd rather host this holiday vs Christmas when we'll be trying to adjust transitioning to a family of FOUR! As I stated in my last post, Thanksgiving is the only holiday we have not been able to celebrate at home with Evanna, as we've been admitted in hospital for this holiday for the past 3 years in a row -- but my fingers are crossed tightly and all signs are pointing to the fact that Evanna will indeed remain out of hospital this weekend!
Despite the fact that Evanna will have no idea what's going on when Halloween rolls around (so celebrating the holiday will be more for our benefit lol), we already have a costume picked out and Nick will be home to help take her trick-or-treating this year...  though I hope she enjoys herself a lot more this year than she did last year....lol.
November always means the start of some birthday celebrations for myself. I will be considered "full term" the day after I turn 29 years old, and plans currently consist of dinner, a staycation at a really nice hotel with Nick, followed by a morning of brunch and complete pampering. I've also already made additional plans for pedicures with my girlfriends (which I'm also counting as my "baby shower"), and dinner with my family throughout the month.
All in all, I'm very much looking forward to October and November to say the least :)


xo The Irvine Family

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. 

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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


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!


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