Spotlight Q&A

////// Earlier this year, I was asked  if I could answer some questions for another bloggers Q& A. I spent a fair amount of time answering them, and feel it's only appropriate to repost it on my own personal blog for our readers to see. xo //////

To start things off, tell me what the past two years have looked like for you.

A roller-coaster. Our beautiful daughter Evanna was born with a rare and extremely complex congenital heart defect. After enjoying a blissful 5 months at home, we handed her over into the arms of our surgical team for her first open heart surgery on October 6, 2014. She went into the surgery relatively “healthy”, and overall we were expecting a 6-8 week hospital stay. While the surgery itself went well, we unfortunately experienced setback after setback and complication after complication that would keep us in the ICU for 10.5 months for a total of 400 days in hospital. I ended up having to take an extended maternity leave so I could be at our daughter’s bedside at all times, while my husband commuted between the city of Edmonton and Calgary to both fulfill his responsibilities as an employee and husband/father. To date, our daughter has now had 9 surgeries – 2 additional open heart surgeries, a major left thoracotomy (ie. it was a heart surgery done from the side), 2 diaphragm plications, a tracheostomy, Gtube placement and a sternal debridement, among countless other procedures and tests. She coded 3 weeks after her first open heart surgery, experienced a very scary mechanical valve failure (it clotted in an almost closed position), an acute liver failure episode, and complete Septic Shock episode last July that almost (and should have) took her life. We were finally discharged on November 9, 2015, and have been enjoying having our whole family sleeping under the same roof once again.

How is Evanna doing now?

Evanna is doing quite well despite circumstances. Our admission was extensive, and so the “recovery” will essentially take years; however, she is blowing our medical team out of the water and already surpassing their expectations. We were told that a child of her complexities tend to bounce in and out of hospital, but other than a little “bump” this past April, we have remained admission free (“planned admissions” don’t count, because they generally mean progress in my book).

We are also moving on with our life – I’ve returned to work part time (in the capacity we had always planned regardless of Evanna’s medical situation), built a new house, and plans to expand our little family are in the works (while this was all caused by a chromosomal defect, it was not hereditary, so we have been cleared by our genetic team to have more children). As for her future, we unfortunately will never be given a guarantee (but I try to think that no one in life has a guarantee). We believe decannulation (weaning of the home vent and taking the trach out) will happen sometime in the next few years – but it’s Evanna’s “special heart” that will unfortunately be her life time battle (this disease will eventually kill her to say the least). At the moment, a heart transplant is not an option for due to unique anatomy issues (though I must clearly state that a transplant is in no way a cure), and there is only so much our medical team can do – so it’s mostly up to Evanna and her body to keep fighting. My husband and I have decided that we will do whatever we can to advocate for Evanna, and as long as she willing to fight – then so will we. However, if there comes a time that she is done and nothing more that our medical team can do, then we will ensure it’s done in the gentlest way possible, knowing in our hearts that we have done everything we could.

What would you say has been the hardest part of everything your family has been through in the past two years?

“The Talks”. Probably every parent’s worst nightmare is being told that your child is terminal or be prepared to “let them go”. From the moment Evanna was born and received her rare diagnosis, we have had “the talk” on numerous occasions with different doctors and specialties. Some have been extremely serious – like last summer when she went into Septic Shock and we were told that “this may be it”, to a more casual (for lack of a better word) conversation with our primary cardiologist about Evanna’s potential prognoses. We’ve even had one ICU physician somewhat question why we would pursue medical care in the form of additional surgeries and procedures down the road, if she’s going to be terminal anyways (we weigh each surgery’s risks and benefits, and absolutely take her quality of life into account each and every time).

Whenever we have a new admission, we always have to reconfirm her “care goals” (think DNR/comfort care questions), but thankfully our primary medical team has recognized our current goals. While we don’t talk about the issue too often anymore, our primary medical team do know that my husband and I have a good understanding of the situation, and despite our “cheery disposition”, for our own sanity, we only now discuss it when absolutely necessary.

Did you find that your personal health and well-being were affected by all of this?

I think the biggest issue has been my diet. While up in Edmonton, my husband and I were given a certain daily allowance to spend on food. It was actually quite the generous amount, and so we lived off a lot of fast food, items from the hospital cafeteria, and the comfort food cooked for us at the Ronald McDonald House by volunteers. Unfortunately, making our own meals fell to the bottom of our “to-do list”, and it wasn’t a priority while our daughter was in the PICU, and so the scale has somewhat reflected this over the past year or so. We have finally somewhat reached a level of stability and new normalcy, so I’m currently trying to figure out the best way to take charge of my personal health and make it a priority.

How did you balance self-care?

Creating balance and self-care kind of evolved over time, and changed depending on where we were (we bounced multiple times between our local children’s hospital PICU in Calgary and the Stollery PCICU in Edmonton). In the beginning, we spent incredibly long days in the PCICU; however, with no choice in sleeping there (it’s an old and open ICU, which means there are no private rooms – unless you’re on isolation), you have to leave in order to get any sleep. I know many parents find this particular issue really hard (guilt being the biggest culprit), but we felt our child was in the best hands, and so this was sort of a nonissue for us. We knew we could call any time of day, the unit was open to us at all hours (ie. visiting hours do not apply to us), and they of course would call if something came up (which unfortunately happened a handful of times, often requiring our immediate presence). While the option to sleep at the hospital became available to us whenever we were transferred back to our “home” children’s hospital, or when Evanna finally came out of ICU and onto the regular floor – we still continued to go home and sleep in our own bed. It was the routine that we were all use too (and Evanna never seemed to mind), and so for our own sanity, we continued this practice. Yes there may come a day, when Evanna gets older and may require one of us to stay the night with her during future hospital stays…but we’ll cross that bridge when we get there.

While one of us was always at the hospital physically, we made sure to always take breaks whenever possible. The days my husband was not working and up in Edmonton with us, we would both go to the hospital – however he somewhat took over in paying attention to Evanna, so I could just sit back, and read either a book or be my phone (giving me a mental break). Towards the end of our main admission (I'm talking month 10/11 here), and back in Calgary, we decided to each take turns on a weekly basis to take a whole day off. Usually my husband would take the first day after his work rotation off to sleep in (as generally he was getting off his last night shift), run errands and have some leisure time. In return, I usually took the following day off from going to the hospital to also run any personal errands and essentially do whatever I pleased. As parents, we are both equally involved with our daughter’s care, so our medical team loved that we did this, as it ensured we wouldn’t experience “caregiver burnout”. When Evanna was finally transferred out of the ICU, the hospital also assigned a special volunteer to us that strictly came in two mornings a week to be with Evanna, so we didn’t feel rushed to come in those days. The volunteer would work on physical therapy and entertain Evanna with books and toys when she woke up, and overall ensuring that her care remained consistent even though we weren’t present. Overall, every family needs to figure out what works best for them while attending and balancing individuals needs too. "Hospital Mode" (as I like to call it) is unique and different for each family depending on social, family and financial dynamics, but as long as the end goal is the same – then there's no really right or wrong way to go about it. 

Taking breaks and prioritizing self-care has continued to remain in practice since we’ve been discharged from the hospital – with just a few tweaks here and there. My husband loves playing board games (it’s a huge hobby for him), and so almost once a week, he will get together with his friends, and they will play for hours and hours. In return, I plan lots of social get-togethers and quite frequently am able to get out of the house to see friends. While I know this isn’t feasible for many “medical families” (heck, I’m sure as more kids enter the picture, the frequency of this may decrease slightly for us), I can’t emphasize taking time out for yourself. My advice is to work together as a team and build a support system, as “caregiver burnout” can occur when the responsibilities fall on just one person.

Who or what has been the biggest source of support for you and your family?

For me personally – my husband. He has been my rock and partner through all of this, and continues to be to this day. He continued to work almost full time through the entire admission (only taking days off when it was absolutely necessary), and took over for me at the hospital when present, to allow me a mental break. We have gotten through this as a team, and will continue to moving forward.

As for our family – well it’s been the whole community. From hospital volunteers and strangers (whom I now consider friends) at the Ronald McDonald House, to people from our church and local neighbourhood. I also have to mention the entire medical team (at both hospitals); as when they aren’t busy treating our daughter, they also have been so caring and compassionate towards us, ensuring we are well taken care of!

Then of course our awesome friends and immediate family members, who have been there to help where they can, and support us every step of the way.

For other mothers with hospitalized children who may be reading this, what message would you like to share with them?

Take it one day at a time – this is a MARATHON, not a sprint, and so be careful not to burn out (I feel like this has been a theme for this particular questionnaire – oops!). When your child is in the hospital for a prolonged amount of time, your role as a parent changes. You have a medical team essentially “kissing the booboos” and making them feel better (ie. pain meds), and your job is to now to advocate for your child’s medical care, be their voice, ensure that things remain constant and that everyone is on the same page (sometimes things can become muddled when you have lots of “cooks in the kitchen”). Being well nourished and rested means that you will remain strong and of “sound mind” – which is what your child needs the most right now.

Is there anything I didn’t ask that you would like to share?

I guess I would like to touch on what readers can do to help. From simply educating yourself on congenital heart defects and their prevalence (each year more children die from congenital heart defects than from all childhood cancers combined), and the fact that there is no cure (heart surgery is considered a “palliative measure”, and is in no way a complete and total “fix”). Learn about and become an organ donor. While I don’t wish trauma on any family, knowing what you would do ahead of time may help make the decision much less difficult should the situation ever arise. If you are healthy individual, looking into becoming a regular blood donor (to date, our daughter has had over 30 blood product transfusions), as it’s a relatively simple and easy thing to do. None of the above involves money, but obviously if you are in a position to donate towards CHD, do your research, and ensure you are giving to an organization that actually puts money towards congenital heart research, and helping families that are affected by CHD’s.

Shooting for the || MOON + STARS ||

Photo by Guenard Photography

For the most part, I’m generally an open book (you sort of have to be if when you decide to dive into the blogging world), but I’ve recently realized that I’ve actually become a little closed off in what I actually share publicly (which you may not necessarily believe, but it’s true). I think it started when we surpassed the 4-5 month mark in the ICU and a tracheostomy became our new reality. I am the ultimate social butterfly (to which the ICU staff graciously put up with), and suddenly I no longer wanted to interact with other heart families within the ICU and even became somewhat resentful towards the ones that came and left so quickly. I then became aware of the mean-spirited and judgmental trolls that live online who just love tearing people down – no matter their situation, and while I’ve only been a victim to it once or twice over the past 2.5 years, I began to put some major filters on what I shared online to avoid such unnecessary situations. I’m also still in a place of anger and even a little jaded when it comes to the “cards we’ve been dealt”, and so I’ve sort of withdrawn myself from the online medical community – except the select few that are more specific to Evanna’s diagnoses. And finally, I just hate talking about something that isn’t a guarantee – only for nothing to come of it…. probably because it was a little heartbreaking anytime I wrote/blogged about something (Evanna related), only for something else to come up and the plan to completely change – so I began to not post something until it was a for sure thing.

However, there are some MAJOR things happening, and while my instincts are telling me to not talk about it until things are official, truth is we need the support, prayers and same love that we had last year to get through this continued roller-coaster. We might experience a miracle, but we also might experience some major heartache, and regardless of what happens, I owe it to those who continue to love Evanna and our family the same openness that they’ve come to know. So here it goes:

Last week I posted that I was going to put my “advocating mama” pants back on, and somewhat “rock the boat”. Obviously this was my way of letting everyone know that stuff was happening, but remain vague in case nothing came of it. WELL, basically we are perusing not just one, but TWO more surgeries for Evanna – and BOTH would take us to the USA. That’s right, there is a chance that we could be headed stateside and seek medical care South of the border, and the reason I’ve been reluctant to share any of this publicly, is that there is a huge possibility that nothing will come of any of it either. Then there’s a possibility that we will only be able to proceed with one of the surgeries…. and then there’s also a small possibility that both could be on our horizon and it all could actually happen.

First (the “stars”) would be another open heart surgery down at the Lucile Packard Children's Hospital in California. There is a pediatric cardiovascular surgeon named Dr. Frank Hanley there who happens to specialize in Evanna’s specific congenital heart defect and very well known within the CHD world. We’ve somewhat come to this plateau with Evanna (specifically the large amount of oxygen she’s on), and so we’ve asked if we can obtain a second opinion + consult with him. What’s extremely scary and so incredibly nerve-wracking is that if he comes back and says there is nothing he can do, then we somewhat know we are that we are officially out of options with Evanna and her special little heart. I can’t tell you how hard it is to say those words – heck, write them out. He will either answer all of our prayers, or give us an answer that we’ve been so trying so hard to avoid.

Our cardiologist Dr. Fruitman completely agrees with this step and has also agreed (at my request) to involve another interventional cardiologist who knows Evanna very well (who coincidently use to work at the Stollery just last year) and is behind on previous CHD cases that were sent to Dr. Hanley. Our cardiologist will first email our primary surgeon Dr. Rebeyka (as we do need them to also support this decision if Dr. Hanley agrees to performing surgery on Evanna for funding purposes), and will then proceed sending Evanna’s records down to Dr. Hanley’s office for him to review. It will then be a little bit of a waiting game to receive an opinion and whether he thinks he can help Evanna. After that, it will be serious of steps to arrange the funding, surgery date, and transport down to LPCH – however I don’t even want to think about that until we hear back from Dr. Hanley first (and because Evanna is currently very stable, we probably won’t see a surgery date until after the New Year due to his very large case load).

My brain hurts, I’m already mentally exhausted – and I’m only halfway through.

The second surgery (the “moon”) is an airway surgery that’s currently in clinical trial down in Michigan. This one is slightly less likely to happen, but we are still shooting for it nonetheless. From what we know – Evanna does seem like a great candidate for this procedure and our primary respirologist is interested in willing to try and go for it. From a cardiology perspective, we have their support, because they believe anything that will improve her respiratory status will only help and improve her cardiac status too.

There is a lot more hoops to jump through for this particular surgery – the biggest being the fact that it’s still in a clinical trial phase. Then take into account that we live in Canada, and all the red tape that brings – overall, I’m trying my best to remain level headed about the whole thing and know it’s going to take a lot of work and advocating to see this thing through.

The surgery entails inserting a biodegradable 4D custom stent around Evanna’s trachea/upper bronchi to help make it stronger and keep it stented open. The fascinating thing about it, is it grows with the patient and then slowly dissolves into the body over a 3 year period (so there’s no having to go in and switch it out as she grows – which was a HUGE problem they encountered in the past). The custom stent is printed from a 3D printer (how cool is that!?), and actually costs very little produce. It’s the other parts to this that make it easier said than done (getting accepted as a candidate, persuading the out-of-country department to get funding approved, getting Evanna down there, etc), and so I’m trying my best to take it just one step at a time.

First step will be to officially get our whole respiratory team on board – including our ENT. As mentioned in previous posts, we have a “combined clinic” at the end of the month with both a respirologist (unfortunately it will not be our primary one, but she’s making sure it won’t cause any issues) and our ENT. Earlier this summer I emailed them a video (click HERE to watch for yourself – but be warned that it’s very long [skip the first 10 minutes] and filled with lots of medical jargon…to which I mostly understand) that is a recording of a recent of a conference where the physicians who created this device and procedure talk in detail about the whole thing – the surgeries they have done, and the absolutely amazing results they have already seen to date.

I coincidentally ran into our primary respirologist a few weeks ago while working at ACH, and after letting her know how Evanna was doing, asked if she got my email. She informed me that not only did she get my email, but the week before our appointment, the whole team has scheduled a meeting and they will watch it together as a group. That actually shocked me a little, and was somewhat taken back at how serious they are taking this whole thing/my request.

Essentially they are calling this surgery the “cure” for tracheomalacia. It will take children with mild to moderate tracheomalacia and potentially avoid a trach and vent all together, and then take severe cases like Evanna and dramatically decrease the amount of time they will require a trach/ventilation for. That’s just mind blowing to say the least! They’ve already done a fair amount of these surgeries, and the results are just astounding, and so they have more or less moved into a period of clinical trials so they can make this a routine/standard procedure in the near future. I’m trying to emphasize this to our team here, as I think it would be a great opportunity for them to send Evanna for this procedure and somewhat be at the forefront as this technology/technique becomes more and more widely used. The amount of money spent keeping trached + vented children alive and healthy is insane (think time spent in hospital, medical supplies, homecare, etc); and so if a single surgery can either help avoid or decrease that time significantly, then I think our medical team/health region/Canada needs to pay very close attention – not to mention the remarkable increase of quality of life it will provide to these families too.

So that’s where we are -- shooting for the moon + stars, and essentially seeing where we will land (and I’m finally laying it all out there….as talks for these surgeries have been happening since May). It’s so incredibly nerve-wracking because nothing could come from any of this, or we could get just one of the surgeries, OR we could be in for a whirlwind and see ourselves through two more major surgeries – both of which are very far away from home.

That being said, I would like to state which one is more important to us and why. Both of these surgeries could provide huge benefits for Evanna and her overall continued health, however, one is slightly more important than the other. We (and our medical team) feel that the heart surgery by Dr. Hanley in California is far more important and crucial for Evanna than the airway one. At the end of the day, everything comes back to Evanna’s special heart, and it’s what will determine her long term prognosis. If he can help her MAPCA’s/collateral's and even do a “full repair” (and close her VSD), that would be HUGE. The airway one is definitely important and will improve her quality of life exponentially and could even benefit her cardiac status, but it’s slightly a little less crucial at this very moment in time, as a “no” will just mean a longer trach/vent journey. Nick is also slightly more apprehensive when it comes to pursuing the airway surgery.....but he’s generally more reluctant than I am when it comes to agreeing to more surgeries anyways (he somewhat fought the PEG tube and then fought it again when we switched to the button, though in the end he is very happy we did it lol).

Alright, I’m done. As you can see, we’ve had a nice little break and time at home with Evanna to basically regroup, but clearly we still have many more mountains to climb, and so it’s been a little overwhelming situation lately. We’re trying to just take it one step at a time and not get ahead of ourselves… but that isn’t always easy. I’ve lately been asking myself what the heck we’re getting ourselves into, but I’m trying to stay focused on the task at hand and know it’s for the best. Wish us luck, and your sincere prayers, love + good thoughts would be greatly appreciated once again.

If you read this far, and was able to somewhat keep up – then kudos to you! To say that I’m experiencing a little anxiety would be a huge understatement right now. I even told my SIL Megan who was helping me take Evanna to our appointment, that I felt a little shaky as we left the clinic, and I’ve even been experiencing a few moments of nausea from being so nervous that I could almost puke (not pregnant fyi) since then. I just absolutely the hate these “limbo/crossroads” moments, and the overall feeling of “not knowing”. Certain things are completely out of my control, and if there’s one thing I hate – it’s not being in control….especially when it comes to my child’s life.

All of this isn’t going to be easy, and I’m trying to prepare myself in the situation we are told “no”; however, I’m going to do whatever I can and continue advocating my heart out for Evanna’s heart regardless of what happens over the next few months.

xo The Irvine Home

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Other tidbits:

- Though I already posted on our Facebook page at the beginning of September, we finally heard back from the immunology clinic and just like we figured – Evanna does indeed have a great + normal immune system, and was given the go ahead to proceed with getting Evanna caught up on the rest of her vaccinations. Like I wrote a longtime ago, immunodeficiency is actually very common among the 22q11/DiGeorge community (the chromosomal defect that caused Evanna’s heart defect and airway issues), which is why we had to wait to do some blood work and get immunology’s approval before proceeding with any live vaccine. It’s just been a small relief that we can keep this one major thing off our problem list right now.

- As of last week, Evanna is officially caught up on all her immunizations! Other than needing a little Advil/Tylenol the first 24 hrs after the MMR shot – she handled it all very well.

- We actually received some good news during last week’s cardiology appointment. Last year, Evanna’s right ventricle (the bottom right chamber of the heart), took a bit of a hit and were told there was some “decreased function”. Generally speaking, this is one of the first areas that will take a “hit” when things aren’t going well cardiac wise (if the heart is struggling, the right ventricle will essentially try to help and alleviate things), which unfortunately can begin to lead to many other problems (such as high pressures and heart failure). Last week’s ECHO showed lots of improvement to which our cardiologist is very happy about (and so are we!).

- We are followed by the cardiac dietician, and so we also quickly met with her during our cardiology appointment too. She plotted Evanna’s height and weight on both the global and 22q11 growth chart, and is also very happy with how things are going. While she’s roughly hits the 3% - 12% on the regular chart (don’t quote me on those exacts numbers), on the 22q11 growth chart, Evanna is 25% for height and 75% for weight and “leaning out quite nicely” lol

HEROES Cover Shoot

Alright, it’s about time I stop withholding these photos (not intentional -- I promise). I was originally going to share these photos in the HEROES Magazine Cover blog post, but then when I got my hands on them and saw how many there were (and good ones at that), I decided they needed a post of their own.

Just want to again thank the Stollery Foundation for this absolutely amazing honour and Brian Bushsdruecker of Bookstrucker Photography for being so flexible and capturing some beautiful photos of our little girl. 

--------------------------------PS------------------------------

– just one week left to enter to win a $75 voucher for a stunning JORD watch [Click HERE to enter]

– I will be posting a very important post on Tuesday (it’s all written up and just waiting for me to hit the “upload” button). There are some very important and serious things happening right now, and I’ve decided to “lay it all on the table”, and fill everyone in on what’s going on regardless of what happens.

goodbye summer || HELLO FALL

I don’t know what it is, but Fall always seems to be when changes happen the most (more so than January) for me. Growing up, it was of course when the school year began, but over the last few years, major changes in regards to our little family always seem to happen around this time of year too. In 2013, it was around September that we found out I was indeed pregnant with Evanna (but still very unaware of her special little heart); in 2014 we were making final preparations for Evanna’s big open heart surgery that would happen on October 6, and last year we were finally settling into Unit 2 life after spending over 10 months in ICU (and making huge strides towards discharge).

We’ve truly enjoyed this past summer and the calmness it brought. I think we only had 2 minor medical appointments/check-ups between the last half of June til’ now, and we’ve just seen so many positive changes in Evanna transpire. She has truly grown and developed so much since our little Spring admission, and we just love watching her personality continue to shine.

However, while our summer has been both calm + fun, I’ve been extremely anxious as the days continued to count down and watch September grow closer and closer. We have two significant medical appointments this month, and I can’t shake this feeling that we are currently experiencing some sort of “calm before the storm” scenario. I don’t think we’re necessarily in for a bad storm per say, but I do feel like something is headed our way – and so lately I’ve been trying to mentally prepare myself for what may come our way.

We often get the comment both in person and online (ie. Facebook and Instagram) about how amazing Evanna looks and how wonderful she is doing. While this is true in regards to coming off almost all her medications, continued growth, development and overall strength and stamina – this unfortunately hasn’t transpired into other areas that I was somewhat expecting within our first year home (ps. can you believe that we’ve almost been home for one WHOLE year?!?). The truth of the matter is, and what people tend to overlook (which is partially my fault, as I generally don’t focus on it, and only update with positive news) is the incredible amount of LIFE SUPPORT that Evanna is currently on, and the major plateau we’ve hit. Evanna still requires very high ventilator settings (for a home anyways), as well as a very large amount of oxygen – and we haven’t been able to make a single decrease since our discharge last November. To me, this is starting to show how sick Evanna still is, and it’s actually quite worrisome that we haven’t been able to make any progress in these two areas. I know as a team (I definitely include Nick and myself as a part of Evanna’s overall medical team), we were waiting for the “dust to settle” since our discharge to see what progress we could make once we hit a point of stability at home, however more than enough time has passed, and we are still in the SAME place in regards to vent/oxygen requirements since we came out of ICU last August. When I last spoke to our cardiologist in June, we were discussing when it’s decided that a child needs to proceed with a procedure such as a Cardiac Cath or surgery – and she stated that it’s usually when we see them “deteriorating”. However, she also agreed that a child like Evanna doesn't necessarily need to get worse, but showing no improvements despite stabilizing in other areas is still a form of deteriorating as well.

When we got discharged from the hospital back in November, the implied GOALS were to just

1) get HOME

2) stay OUT of hospital

3) stabilise, get strong + rebuild a reserve.

Now that we’ve done what we initially set out to do, I want to turn our team’s attention to Evanna’s QUALITY OF LIFE and figure out what our next steps will be medically. While I’m not 100% sure what this will entail (though I won’t be surprised if it means another surgery or two….), I do know it might mean a little “rocking of the boat”, which it what I am extremely anxious about. We also may not get the news we would like to hear and continue to face some very hard facts about Evanna’s health and life expectancy... but for now, I will just hold onto the “hope part” instead.

“Rocking the boat” is incredibly scary for me and it’s actually been starting to give me some moments of extreme anxiety. Within the medical support groups that I am apart of online, I’ve been starting to notice the families that are going back into hospital just to fix a few things, and then not bring their child home again. It’s the gamble you play whenever you sign that surgical consent form, but for some reason, those risks are becoming more and more bolder the older Evanna gets. Yes, she is certainly in a much better place than she was when she underwent her 2nd and 3rd open heart surgery – but she was also in a fantastic place before her 1st open heart surgery, and we all saw what happened after that (and if you're new here, click on the heart journey tab to see what I am talking about). It’s because of this, that I’ve had many moments where we’re all home enjoying time as a family and I wonder if we should just keep things the way they are and not shorten any time that we do have with Evanna (sorry to get a little morbid here). On the flip side, I know I can’t let the fear of the unknown cloud our judgement in pursuing the best quality of life for our little girl.

So, I know it’s been a little while since I’ve asked this, but some prayers and positive thoughts would be greatly appreciated as we continue to fight and advocate for Evanna and her special little heart. We see our cardiologist for the first time in 3 months tomorrow (September 15), and have a combined clinic with our ENT and respirologist on the 27th (which if I remember, will try to snapchat [username: kierra.irvine] a few moments when I can).

xo The Irvine Family

|| two peas in a pod ||

The bond between these two just absolutely melts my heart. I often tell people that Nick is the better parent when it comes to the day-to-day stuff – but with my differing strengths, I really believe Evanna gets the best of everything. Nick often focuses on the “now” – which includes showering her with love & attention and working on physical/occupational therapy, while I focus on what we need to do in regards to Evanna’s health and that things continue to run smoothly (ie. homecare and medical appointment schedules). He is one for “going with the flow” with what our medical team suggests, while I often question and research alternative options to ensure Evanna is getting the best care possible and make sure all her needs outside of our love are being met. There are so many ways that our parenting style differ, but the one thing that our medical team does agree on, is that Evanna’s amazing progress has been a testament to all of our hard work (mini shout out to our lovely homecare nurses who are also a big part of Evanna’s life and aid to not only in doing therapy activities when they’re here, but clearly love her dearly).

Nick’s attentiveness is clearly evident by their relationship. Back when we were still in hospital, there were many days where it was nearly impossible for me to get Evanna to smile, but Nick would walk in and the smiles would flow. She was certainly a “daddy’s girl” through and through, and he definitely liked to somewhat rub it in my face. However, I do have to chuckle because over the past few months, Evanna has begun to show a few moments of favoritism towards me, and it’s been fun to watch Nick get a little jealous when she has wanted me instead. One thing is for sure – Evanna is one well loved child by everyone involved in her life.

Last week I decided to take a few photos of Nick and Evanna together, as I wanted to capture their bond for my memory. 

Luxury men's wood watch courtesy of JORD wood watches, and this particular style can be found HERE. 

I have partnered with JORD for a fantastic little giveaway. Winner will receive a $75 voucher, and all those who enter will be given a $20 gift card to JORD wood watches! 

-------------------------------Please click HERE to enter-------------------------------

Contest is now LIVE and will end Sunday September 25, 2016 |||| $75 voucher will expire November 30, 2016 |||| and all $20 gift cards expire January 31, 2017

Luxury Wood Watch