////// 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.