Another Q&A

Photography by Guenard Photography

A few months ago I received an email from a young lady in Eastern Canada that was doing a project on congenital heart defects for a project in health class. She asked if I would answer some questions about our life and what how CHD has effected our lives. Anyways, I thought I would share the questions she asked and my answers:

1) Before you knew about Evanna and her heart, what did you know about the heart community? 

I didn't even know it existed. I knew support groups were out there for things like breast cancer and maybe for moms of Down Syndrome children, but that's about it. I honestly never thought about it, but within days of finding out about Evanna's heart I knew I needed to find others who have gone through what I was about to, and so I went searching. It first began with other heart mom blogs, then using hashtags on Instagram to find others (#CHD #HeartMom #HeartBaby #HeartBaby #CHDAwarenese, etc), and then finally I stumbled across multiple CHD support groups on Facebook. The support groups have been great way to meet others who've gone through or are going through similar situations and it definitely makes this journey a little less lonely.

2) What is the one thing you would want everyone and anyone to know about CHD's? 

How incredibly COMMON it is and that it can happen to ANYONE. According to statistics, 1 in 100 babies are born with a congenital heart defect ranging from a small hole that will eventually close up, to something as complex as Evanna's heart that will need constant monitoring her entire life. It doesn't matter your race, age, social standing, or financial situation. It doesn't matter if you lead a very healthy lifestyle or smoke your entire pregnancy (though smoking and drinking may raise your chances). Evanna did not get her CHD from neither Nick or I, we did nothing to cause this and we were extremely shocked when we originally got the diagnosis. We were two relatively healthy people with no major medical history's trying to start a family and never in our wildest dreams did we imagine this would happen.

3) What does a CHD mean to you?

It's a lifelong journey of miracles and hardship. Of coarse I wish that Evanna didn't have one, because who would want to see their child suffer? However, it has defined us and will shape the person that Evanna becomes. I pray that she will only rise above this and show people that no matter what life throws her way, she will make best of the situation and accomplish goals she sets for herself.

4) What was your first thoughts/feelings when you first heard about Evanna had a CHD?

I'm sure our cardiologist thought I was crazy. I almost don't want to admit this, but I actually didn't cry. We had a scare earlier on in my pregnancy that took a toll on me, so when Evanna's CHD was discovered, I was kind of all cried out. If anything I went into "research mode" instantly and when the radiologist broke the news, I barely skipped a beat. I was like "okay, so what does this mean and where do we go from here?" Of course the days following I was able to digest the news, but it wasn't even until a few months later that I began to get really emotional about the situation and fully realize what was going on and the impact it would have on our lives.

5) How does it feel knowing that there are people from all over world that are following your story and are praying for you and little Miss Evanna?

It's been unbelievable. I'm amazed at how many people have fallen in love with our little girl and are literally praying and rooting for her to come home. This journey is incredibly lonely and isolating some days (especially the days my husband isn't here), and so to know so many people out there care for Evanna is so humbling. I definitely have moments that I question how public I've made this journey and wonder if I'm sharing to much. Nick is a very private person, and so it's definitely a little tricky finding a balance. There are things we've had to compromise on, for example - despite some of the pictures I've shared, we have kept the ones with Evanna fresh out of surgery with chest tubes private and if Evanna chooses to share those one day, then she can. However, Nick knows and understands that my blog is a way for me to process and deal with everything that has happened and it's an outlet to get everything out (as well as a way to keep everyone updated), so that's why he doesn't have an issue with it. 

Knowing that there are people from New Zealand, Singapore and Australia to Spain, France and the USA praying for Evanna and checking in for updates is so humbling, and I can't describe how blessed I feel to know that so many people love Evanna and want to see her go home and just be a regular toddler.

6) What is it like to be a heart mother?

It's definitely not for the faint of heart (pun intended? lol)! My life has been completely turned upside down and unfortunately I've missed out on so many things this past year. However the experiences and beautiful moments that I have experienced have made it all worth while. What Evanna goes through on a day-to-day basis would be shocking to many people. I have to watch my child go through so much, all while telling her that she'll be alright and that everything is okay - when in fact it's not. It's not okay that she gets poked and prodded the amount she is. It's not okay that she has had so many drugs pumped through her little body that she is now addicted and it's going to take weeks and weeks to wean her. It's not okay that she has been exposed to so much radiation from the daily xrays that are done in the PCICU and other tests she's endured. It's not okay that so much of her time has been spent confined to a bed in the hospital (and struggling to breath), instead of just being a regular baby in the protection of our home.

While social media has been a beautiful resource for me to find and connect with others going through similar situations, it also forces me to watch and see posts of others with their babies being "normal" and doing regular family things. It can be a punch to the stomach knowing that we're missing out on so much. I know once Evanna is healthy again, I'll be able to experience some of those same moments, but nothing can replace what has been taken away from our family. I guess the one thing that makes me happy is when people comment that after a "bad day", they read a post that I have written and they tell me that all of a sudden their bad day didn't seem so bad anymore, and that they've become grateful instead.

Being a heart mother is so incredibly hard - but when she smiles, everything is so worth it to me. The day we bring her home, it'll be worth it. The day she breaths on her own, it'll be worth it. The day she walk and talks, it'll be worth it. The day that she tells me that she love me, it'll be worth it.

7) What would you say has been the best thing about being a heart mom and what would you say had been the most heartbreaking thing about being a heart mom so far?

Probably the best thing about being a heart mom is I truly now have something to fight and stand for - for the rest of my life. I will spend all my spare time educating others, raising money and being a voice for a large community that still has a small voice. Thanks to the internet and social media, awareness is being made, but until everyone knows what a CHD is, I will not stop talking about it and doing whatever I can to help research along. The amount of money being spent on research and medical advancements for CHD is actually quite low considering how prevalent they are, and that is something that needs to change. 

I owe so much to the Stollery Children's Hospital, and the foundation is aware of our family and they know I'm always willing to help lend a hand whenever I can. I felt so honoured to take part of the Radiothon, raise money for the PCICU and be an advocate of this amazing facility. They do much much with the resources they have, and the hard work of the staff is what has made this hospital world renowned in regards to pediatric cardiovascular interventions.

There are definitely a few things that are so heartbreaking about being a heart mom. First, while we see so many miracles and success stories in this community, we also see too many children lose the fight and "gain their wings". Life expectancies and percentages of surgical success has improved and gone up over the last decade, but it's still not enough. Due to Evanna's particular type of heart defect, no one can tell us what her life expectancy will be. There is only so much they can do surgically, and the rest is up to her body. We don't know if we have another year with her or 20. My husband and I just know that everyday with her is a blessing and to cherish each moment that we have.

Secondly, like I mentioned in an earlier question, it's really heartbreaking thinking of all the time Evanna has spent in the hospital in the ICU instead of at home growing and developing. Though she just turned one, she is pretty much developmentally a 2 month old again. I know with time, patience, therapy and hard work, she'll bounce back and we'll get her back on track, but it's still so hard to think about that and devastating at the same time. I won't be surprised if my nephew who was born a few months ago will surpass Evanna developmentally, or at least be very similar to each other.

8) How does having a heart baby effect relationship with family and friends?

For the most part it hasn't had too much of a negative impact. I unfortunately had two very close friends that decided to disappear from my life despite earlier attempts to contact them, but you can't make people be friends with you, and so it definitely hurt. I honestly couldn't tell you why either. Did they think I would become a burden? Was the situation too much for them to handle? I have no clue, and I'm not sure I'll ever find out.

However, in saying all that I have built some pretty incredible friendships and relationships both in person and from a far. I look forward to the day that Evanna is doing well and I can make a road trip down to the States to hang out with so many of the incredible women I have "met" and bonded with through social media. Nick and I have grown closer to people in our church as they've become so invested in our lives and are always eager to help out in a moments notice. We have definitely learnt who are real friends are (and family for that matter), and we feel incredibly blessed with the support we have received. 

Our families have been so awesome and incredibly supportive. I hear about families not wanting to hear about the nitty gritty of the situation and almost want to pretend it didn't happen, but fortunately my husband and I have not had to experience that. Our parents and siblings are very involved and want to learn everything they can. They always want to come visit and they've all stated that they would love to be involved in Evanna's care when she comes home.

My heart is so full when I think of how many people love Evanna and want to shower her with love and attention. I may have lost a friend or two, but I have gained so many more, so that it has definitely helped fill any void that I may have had, and if anything, my life has so much more meaning knowing that the friends we have are true ones - which brings me so much joy.

9) Does it make u feel any better knowing that Evanna won't remember the past 7+ months in the hospital why or why not?

I am so grateful to know that she won't remember all of this. I've documented it in great detail so she will know one day about everything, but she's been through so much that I'm glad it won't scar her. With so many procedures, surgeries and tests in Evanna's furture, she will have her fair share of hospital stays that she WILL remember and so if this one admission that she won't have to remember, I will count that as a blessing.

10) If you could summarise Evanna's first year of life for me, what would you say?

The first word that comes to mind is: exhausting. Of coarse any new parent is going to say that, because that comes with the territory of having a baby. However, I'm exhausted in a completely different way. I go home each night from the hospital and get a good night sleep while nurses care for Evanna, but I'm emotionally and mentally exhausted. Other then the fact that things kind of slow down at the hospital - weekends and holidays don't mean anything to me at the moment. It doesn't matter what day of the week it is, I still have to get up, get ready and drive to the hospital if I want to see my daughter and participate in medical decisions.

This year has been such a rollercoaster. From getting a more severe diagnosis when she was born to being told to she was quite possibly terminal and that there was nothing they could do. Then getting to spend 5 beautiful and amazing months at home where she grew and developed beautifully and constantly coming away from medical appointments with good news after good news. 

We went into her first open heart surgery back in October with so much hope and optimism, only to experience setback after setback with progress happening at a very slow pace and with so much heartache long the way. It's been a long year - one we'll never forget. We have learnt a lot about ourselves and how we handle stressful situations. Many lessons have been learnt and taught, and I'm definitely not the same person I use to be. I'm more patient, understanding, and stronger than before. I have learned to use my voice and express my concerns to advocate on Evanna's behalf as well as learn to stand aside when needed, as their hands and knowledge are better suited to care for Evanna while she's in the hospital.

11) Where did you get Evanna's name from? 

I'm just going to copy and paste my answer from an earlier Q& A I did a few weeks ago:

Well we were having a very hard time coming up with a girl name. We had a boy one picked out, but we couldn't agree on a girl name. I would come home with lists and lists of names, but Nick was SO picky. At one point I was really liking the name Evelynn and Nick really liked the name Anna. Finally I told Nick the HE had to go on the internet and come up with a list of names himself. Within an hour he came upstairs with a list of names, and the name "Evanna" was on it. It means "little warrior" and it mixed the two names that we had liked very nicely together. It's an uncommon Scottish/Welsh name, which is a part of our heritage, and we just really liked the name. After Evanna was born, it was pointed out to us that her FULL name (Evanna Verena Irvine) consisted of the same 3 consonants and 3 vowels without realizing it (Verena is my middle name, which was passed down from my grandma who was born in Switzerland).

12) What have you learned in the past year from becoming a heart mommy?

That I can do hard things. I've had many people tell me that I'm so strong and they're not sure they could do it, but my answer is usually - what choice do I have? Yes, there are some people who wouldn't have been able to handle it, and yes there have been situations in which people have given their child up for adoption when they are faced with this situation, but I think most people I know would be able to get through it in some way or form (unfortunately depression is very common in our world). I have definitely learned how I react to tough situations and that I'm a very strong person - I try my best to handle things as positive as I can, because I feel like nothing is gained from being negative (though I've had some breaking points along the way...).

13) How has CHD affected your life?

It has affected my life in almost every way possible. I'm currently living in a different city away from my home, husband, family and friends. My days are spent at the hospital, and almost all of my human interactions are with nurses and doctors. Even when Evanna comes home, our life will consist of endless doctor appointments, medications, pokes, blood work, suctioning, trach care, assessments, homecare, oxygen, physio the list goes on and on. It's all I think about during the day, and I'm constantly looking things up and discussing things with our medical team and or other heart, DiGeorge and trach moms. This has become our new normal and our life resolves around it. I'm hoping it will decrease one day and we can gain some normalcy and worry about regular stuff, but until then, that isn't an option.

Photography by Guenard Photography