So according to my husband and a few friends, it’s recently been expressed that it’s been awhile since I’ve done a decent blog/life update, and people who read my blog (THANK YOU btw!!) have made comments to them about it (Nick doesn’t actually read my blog “because he lives it” lol). I seriously have a note of multiple pending blogposts listed in my phone (Bennett’s newborn photos, his blessing day, a FAQ post, etc) that I need to get done, and I’m trying my best to stay motivated, get caught up over the next few months and stay on track by the time we head to California for Evanna’s next open heart surgery later this summer. In fact, I’m currently working on an entire blog rebrand with the help of Vanessa Cabrara – who has just deigned a new and incredibly gorgeous website/blog, and I can’t wait to launch it sometime within the next few months!
Also – because I neglected to do my annual “year in review” post at the end of December (I was just a tad busy… *cough cough Bennett cough*), I’ve decided to kill two birds with one stone and provide both a summary of what we’ve been up to since October, and officially post a little review of our 2017.
|heirloom toque made by my great grandmother made for my brother and currently on loan to me|
So since my last real “what we’ve been up too” type post back in September, we’ve definitely remained quite busy – for instance (and in case you already didn’t know lol….), we HAD ANOTHER BABY, and it’s definitely been quite an adjustment. I’ve joked to friends and family that it feels like we have Irish twins because of level of care Evanna still requires. Though she’s almost 4 years old, her mobility skills are still pretty limited at the moment, and she still heavily depends on us for most of her basic needs. For instance, most 3-4 year olds (as displayed by my niece and nephew) can easily move around the house to obtain objects (ie. toys) on their own, can casually walk into the kitchen and grab a snack out of the pantry or fridge, and are potty trained and no longer require diaper changes. While Evanna can crawl around the living room and get to toys that are laid out, she still relies on us or her homecare nurses (if we have one scheduled for the day) to ensure she’s feed (through her GTube), getting the proper attention/working on therapy exercises, and of course diaper changes throughout the day… and so it sometimes feels like I have two babies to care for, and it can get exhausting sometimes (props to you mothers of multiples!). Though we were ready for Bennett, I’ve made it clear to everyone that we’re definitely not going to try for another baby until at least 2019 – AND I need both Evanna and Bennett to be completely mobile and vastly more independent to do relatively simple activities on their own. However, while it may seem like I’m focusing on what Evanna can’t do, I promise that we actually focus on all the amazing progress she’s made – both medical and developmentally.
So Evanna has just been growing developmentally by leaps and bounds since starting “preschool” with GRIT in the Fall, and we even had to redo/update her Physical Therapy (PT) IEP (“Individualized Education Program” – these plans and assessments have to be done up in order to secure provincial funding to pay for these specialized services for children with major developmental delays) because she already accomplished her PT goals we set for her back in September! They often try to create ONE IEP for the whole school year, but Evanna surpassed our original expectations in regards to her PT, so they had to submit an updated one in January lol. Some of the goals that she absolutely crushed was improve her crawling skills (she was “bum-scooting”, however, crawling leads to better overall coordination and hand strength for OT skills, so we wanted to correct this habit), pull herself from sit to stand, and be comfortable doing activities on her knees. Well, because she accomplished these, we’ve decided to really focus on continuing to teach her to “fall safely”/”sit gently” (this aids with gaining confidence to walk independently), as well as learn to stand up from the middle of the room (without the aid of the couch), and of course learn to walk independently. Though we obtained a walker at the beginning of 2017, we learned that if she doesn’t need it for support, it’s actually better to learn to walk without a walker. The reason being, is if you learn to walk with an aid of a walker, you are using strength of your upper body to accomplish this task, followed by having to learn to walk using your lower body. However, because Evanna doesn’t like the walker, and doesn’t have muscle weakness (which is why walkers are crucial for those with diagnosis like CP, etc), it’s just better to learn to walk using lower body strength right off the bat if it’s feasible (like I stated, depending on certain diagnosis, this isn’t always an option, and walkers are a vital resource for many). As far as Occupational and Speech Language Therapy, we’re slowly trying to expand Evanna’s world and expose her to new things. This ranges from crafts, to different types of play to encourage curiosity and learn simple sign language words to increase her communication skills. Overall, when I look back at what she was doing at the beginning of September to where we are now, it’s just absolutely amazing to see what she’s been accomplishing, and many people (friends, family, therapists, nurses, doctors and specialists) have noticed and made comments of praise. I’ve seriously become that annoying “proud mama”, and love showing off Evanna’s “latest tricks” whenever we have appointments at the hospital lol.
Medically, we’ve also been able to bring Evanna’s ventilator settings down significantly (PEEP of 6!), and she’s officially “sprinting” off her ventilator during the day and only on the vent while sleeping. The next step is a sleep study to see if we can bring down her vent settings even further, or see if she can go without it altogether! Paperwork requesting a sleep study date has already been submitted by our respiratory team, and hopefully they’ll have a date for us when we’re in airway clinic at the end of March.
In October, we finally got to celebrate our first Thanksgiving home (as Evanna likes to land herself/be in hospital around October), and I tried my best to enjoy my 29th birthday despite being 37 weeks pregnant with a quick trip to Canmore with Nick inNovember. We welcomed our sweet boy at the beginning of December, but I ended up having a heck of a time recovering from delivering him due to a 3rd degree tear -- thankfully Nick was his normal “super dad” self, and we also were given a little extra nursing support for Evanna too.
We adjusted and figured out a new routine for our family as we headed into the New Year, and nervously awaited to hear about our funding application for Evanna’s surgery in California at the end of January (which were meeting to discuss Evanna’s case on the 24th). Thankfully communicating with the Out of Country Committee is extremely easy, and they are great relaying information in a timely manner, and so we received a letter informing us that we were APPROVED on January 26th (I don’t think I’ve ever tore a letter open so fast).
A few weeks ago, we held Bennett’s Baby Blessing at church on February 11th, and I’m slowly starting to make plans for Evanna’s upcoming 4th birthday.
I’m trying to rack my brain to make sure I’m not leaving anything out, but essentially life is continuing to move forward, and we’re just enjoying this current season of parenthood.
YEAR IN REVIEW
For the last couple of years that I’ve written a little “year in review” (with the exception of 2015…), I always try to come up with a word or phrase to try and describe the past 12 months – and so to continue this little personal tradition, the one I've come up with this year is:
healing + renewed hope
Earlier this year I was interviewed by Orange Socks (podcast can be found here), and near the end I talked about “surviving the bad years and enjoying the good ones” – well, I’m happy to say that 2017 will be documented as one of those good years. Sure, people might question what I consider “good” – as it’s not like we were globetrotting around the world or had crazy awesome experiences…. but I guess I’ve gained a (more grounded IMO) perspective on certain things, and while some may consider those expectations quite low, one would argue that makes me a happier person at the end of the day.
January and February sure gave us a reminder at just how busy life can get with a medically complex child. We were essentially picking up the pieces after Evanna's unplanned bout of Endocarditis and 4th open heart surgery on December 12th to replace her infected bovine valve. Despite requiring not one, but TWO IV antibiotics that didn't have stop dates til December 27th – Nick and I had it in our heads that we were going to spend yet another Christmas in hospital and immediately came to terms with that idea (Evanna has been known to cause trouble and land us in hospital on holidays). Well, with the combination of trying to clear out the hospital during the holidays with kids that are stable enough and avoid the very real possibility of contracting RSV (which happened to be one of the worst years for it here in Alberta in over 10 years), they moved mountains and were able to send us home on December 23rd and arranged for the HPTP homecare team to come to our house EVERYDAY to do a double IV line change to enable this discharge.
However, none of this was taken lightly, and we had to follow-up with many of our doctors and specialists the weeks following to ensure Evanna continued to move forward in her recovery so freshly postop. It was both exhilarating to see Evanna recover so quickly (our medical team was just ecstatic to say the least), while stressful at the same time, as we weren't exactly use to things going so smoothly.
At the beginning of February, we began to run into problems at home with Evanna's ventilator alarms going off a lot more than they use to be, and we expressed our concerns to the Respirology team at our monthly checkups. Despite plans in the works for a bronchoscopy later that Spring, they decided to quickly admit us to the PICU for a night (or two...) to see if they could clinically figure out the problem and make an adjustment or two in the meantime. Embarrassingly, I ended up getting quite emotional during that admission (sometimes the #trachlife can get to you), as the ICU team was being super cautious of any ventilator weans, and wanted to make as little changes as possible until Evanna had a proper bronchoscopy. I think it was just a case of me being impatient and the ICU team holding onto Evanna's past reputation for being unpredictable and throw a curveball or two at times.
We ended up figuring out that Evanna was exhaling through her nose and mouth instead of the trach -- thereby the ventilator was unable to register those breaths and thought she was having apneic episodes... even though it was physically obvious that she was indeed breathing. They decided to decrease one of her pressure settings and slightly upsize her trach. These two little changes seemed to fix the problem temporarily and we were promptly discharged home until our actual bronchoscopy.
At the end of February, Nick and I decided that we were finally comfortable with leaving together (as I've technically gone away on my own several times over the past year or so) and enjoy one night away as a couple to Banff and Lake Louise. We left Evanna in the care of our amazing homecare nurses, and ended up having a lovely getaway.
We celebrated our 5th wedding anniversary a bit early this year, as we were being readmitted to the PICU at the beginning of April for Evanna's much anticipated bronchoscopy. Though we were optimistic about the potential results we’d receive -- due to previously being let down after her last bronchoscopy in 2016, I remained extremely cautious and braced myself for what kind of results we'd get from our bronchoscopy this year. The Respirologists were also more optimistic this year based on some physical milestones Evanna was hitting and so everyone was really interested to visually see what her trachea/airway looked like. Well, I'm pleased to say that the bronchoscopy showed that Evanna's "tracheomalacia" (the floppy/softness of the trachea cartilage, which is why she required pressure from a ventilator to help "stent" it open in the first place) has completely cleared up, and we could finally look at proceeding with weaning her off the ventilator. She was brought back from the OR on lower ventilator settings, and after a night of observation, we were discharged from what I like to refer as "our happiest ICU admission to date" (we had also recently learned I was pregnant with Bennett just prior to that admission, so that also added to the overall happiness, but only a handful of people were privy to that information at the time).
Spring brought Easter dinners with the family and Evanna’s 3rd birthday, and between our niece and nephew’s birthdays falling around this time of the year too, our social calendars tend to fill up with a lot of family time to celebrate between the end of February to mid-May.
After MONTHS of waiting, we finally had a cardiac cath scheduled in June at Dr. Hanley’s request from that previous November (definitely not impressed by this huge delay…..). This required a trip back up to Edmonton, but it was great to see so many familiar faces. Though we hadn’t publicly announced my pregnancy (just wasn’t at the top of our “to do list” at time), I was definitely “showing”, so it was so sweet to reveal to our “Stollery family” that we were expecting another baby and Evanna was going to be a big sister! The PCICU had seen our family during some of our worst of the worst moments, so it was just so nice to show them that things were going well and that we were moving forward with our lives. It was definitely a tad awkward being at the Stollery for a cath that was meant for a consult/referral to a different hospital, but at the same time, they also understood why, and at the end of the day, they ALL want what’s best for Evanna – even if it means that means seeking treatment elsewhere.
Evanna handled the procedure relatively well (though, her high tolerance of sedative meds made things difficult for the anesthesiologist and a ticket to the PCICU for the afternoon), however, we also have access issues that make this procedure extra difficult and the results that followed ended up being quite worrisome. The interventional cardiologist was quite frank and honest with his opinion in regards to the status of Evanna’s “collaterals”, and stated that based on what he saw “no cardiovascular surgeon in the world would touch her”. Though he had heard of Dr. Hanley and his reputation, he expressed that he would be somewhat surprised if there was anything he could do to help Evanna, but to keep him updated, as he would be interested to hear his thoughts and whether he could offer anything to our family in regards of a surgical plan.
Overall, the trip back to the Stollery was extremely bittersweet. It was so great to see everyone, but the results left us extremely worried, and we began to prepare for a “no” from Dr. Hanley.
In July Nick and I finally announced that we were pregnant, but also remained cautiously optimistic as we waited for results of our detailed ultrasound about baby’s heart and overall health. I haven’t blogged in great detail about it, but I definitely experienced a lot of anxiety during that time leading up to that ultrasound, followed by some major guilt and sadness on Evanna’s behalf after we were given “the all clear” after the exam. For the most part, I feel like I’ve handled everything we’ve been through with Evanna relatively well, but this pregnancy definitely brought up a lot of supressed emotions that I had to work through.
After the detailed ultrasound we held a little party with our close friends and family in attendance, and revealed we were having a little BOY!
Nick and I got to go away for TWO whole nights in August for a little babymoon, and headed to Golden, BC and stayed in an adorable little yurt. On our way back home we stopped by Emerald Lake, and had such a fantastic time (I seriously can’t wait to go back)! The view was absolutely breathtaking, and no picture could do it justice!!
Of course, August also marked the 2nd most important thing happened to us in 2017 (just behind Bennett’s birth in December), and that was receiving a phone call from Evanna’s cardiologist with news that Dr. Hanley has offered a surgical plan for Evanna and has accepted her surgical case. I seriously burst into tears when she read parts of his letter over the phone to me and experienced quite the adrenal rush that ended up lasting for several days. Even now, everything still seems so surreal (considering how long this referral process took and the current severity of Evanna’s diagnosis) and I have moments where I cry tears of joy that this is all happening (usually while I’m driving lol). However, now that everything is official, I’m also starting to think about the potential risks and have moments where I question if this was the right decision. I can’t emphasize enough just how risky this surgery will be, and the incredibly long list of potential complications we’re exposing Evanna too (including death). However, with the guidance of our cardiologist, we’ve determined that the potential benefits outweigh the risks, and this surgery could greatly improve her current prognosis and quality of life (like get her off oxygen!).
Evanna started “preschool” in the Fall with GRIT, and has been doing absolutely amazing. The following month we were able finally celebrate our FIRST Thanksgiving home, and finally put a little checkmark beside that milestone! For my birthday in November, Nick and I went to Canmore to celebrate my birthday, but due to the fact that I was officially “full term”, it wasn’t the most relaxing trip and I did what I could to push through those last few weeks of work before starting my maternity leave in December (well, technically I used up the last of my vacation before initiating my leave).
On December 1st, we welcomed Bennett William Irvine into the world (you can read his birth story here), and it was just the perfect way to end off the year. With a newborn, we kept Christmas fairly simple, but were lovingly surrounded by family as they fawned over Bennett and his newborn goodness and of course Evanna.
Oh 2018. I have a feeling this year will be one for the books (but I feel like I’ve said that about other years too). While it’s starting off “calm” (despite having a newborn), I’m growing incredibly anxious as the weeks pass by and we inch closer towards August and head to Palo Alto for Evanna’s next open heart surgery.
In the meantime, we are doing what we can to help Evanna continue to make progress developmentally, and I’m even looking into what programs are available in July (as her “preschool” finishes at the end of June) to make sure we make the most of the time we have before surgery. We’re well aware of the impact this surgery will have on Evanna’s development, and even our medical team has talked to us about the steps backwards she’ll temporarily make postop (like the fact that she may need to initially go back on the home ventilator when she’s awake for a short amount of time), and the big pause in her development we’ll have to take as we allow Evanna to heal.
Paperwork has been put in to request a sleep study for Evanna later this Spring, and I’m extremely curious as to what those results will show. We have a “combined clinic” scheduled sometime in June with both our ENT and Respirology team, and I have a feeling “decannulation” (taking the trach out) will be the main topic discussed (especially once we have the sleep study results). I know EVERYONE is curious as to when we can take Evanna’s trach out, but it’s just one of those things that we can’t rush and truly will have to be on “Evanna’s time”. The fact that Evanna is completely off the ventilator when she’s awake and handled that wean relatively well is a positive sign -- but there are still a few more things we have to do, and Evanna has to accomplish before we know it’s safe enough to take this step. Weirdly enough, I want Evanna to KEEP the trach while we proceed with theses open heart surgeries (as we are actually facing 2 surgeries with Dr. Hanley) down in California, as there are indeed some perks to having a secured airway, and I find it helps speed up recovery postop (provides a little extra support, and almost gets us home faster, as minor airway issues can be dealt with under our supervision).
Honestly, based on all the information I have right now, my best guess is that we’re going to live with Evanna’s trach for at least another year, and my gut instinct is telling me that well be “trach-free” by next summer.
We’ve expressed that we want to enroll with GRIT (Evanna’s preschool) for another year in the Fall, but have told them that due to the timing of the open heart surgery, will most likely have a delayed start and will want to slowly ease Evanna into it for her comfort and safety.
As for the next Winter, I’ve expressed to Nick that I would really like to take a trip and joked that the beach is calling my name -- but unfortunately can’t make any concrete plans at the moment. We need to see how much vacation time Nick has to use up for our time down at Stanford and also want to make sure Evanna’s recovery is going extremely well before we make any decisions to leave. Basically while I’m dying to get away, the stars would have to align and only under the perfect circumstances would we go away. Evanna and Bennett are our main priority, and that’s okay too.
Thanks for reading,
xo The Irvine Family
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