Thursday, May 28, 2015

3D CT Results

The past week has been a compilation of waiting, waiting and more waiting. First it was "wait until Tuesday" where they would discuss Evanna at the weekly Cardiac Conference, however, that then turned into "wait until Friday" so our surgeon could have more time to look at all of Evanna's images (not a bad thing, as this isn't a decision to rush.... but all the waiting was definitely hard for me). 
During all of this waiting, we experienced some ups and downs in regards to Evanna's ventilation. We tried switching her diuretics (it's medication that helps you pee more) from IV to oral over the weekend, however Evanna's body didn't respond to it as well, so she became fluid overloaded and swollen, which made it more difficult for her to breath. We ended going back to IV diuretics for a few days, but this morning Dr. Aditia switched Evanna back to oral, but at a much higher dose. I'm going to keep an eye on Evanna's fluid balance over the next few days, and if she starts to get positive again I'll make sure they fix it quick, as I don't think Evanna handles being too "positive" very well.

Last Friday, Evanna's special trach that I've been requesting since her tracheostomy surgery finally came in! It's soo nice and I feel it will help her get strong and mobalize much easier. Though Evanna technically got a trach change the day before during her cardiac cath, I was too excited to wait and did a trach change that very day. All the staff have agreed with me, and think the trach will be much better for Evanna and that it looks amazing!

Finally, Evanna has been successfully converted to NG feeding (food goes through a tube and into her stomach instead of her intestine), which means that as soon as Evanna passes a swallowing test, we will be free to restart bottle feeding again. This has been a huge thing to me, because considering Evanna's incredibly long list of complications (heart, airway, etc), this was the one thing that Evanna had going for her and was really good at. Occupational Therapy doesn't think she has any oral aversion and we're pretty optimistic based in her history, that she will do well. This is obviously not a guarantee, as unfortunately the trach makes swallowing feel a bit differently, but hopefully Evanna will not let that get in the way and persevere!

Today has been a very busy day and I was already exhausted by lunch. I came extra early to make sure I didn't miss my opportunity to see Evanna's heart in 3D with Dr. Rebeyka. When I arrived, they were already rounding on Evanna, and though she had a great night, Evanna spiked quite a temperature this morning. Dr. Aditia ordered cultures on everything, and for all her lines except her PICC line to be taken out (her head IV conveniently fell out last night). This meant they had to convert any additional IV medications she was on to oral ones, but because she was on a very low dose of hydromorphine, switching that and the lasix (a diuretic) was relatively easy. 
Just after 9am, Dr. Rebeyka came and got me and lead me down to the radiology lab. What an experience! It was so surreal to not only see Evanna's heart in 3D (if you want to get a better idea as to what I saw, watch the video I posted below), but be in a room full of so many smart minds and hear them discussing Evanna and her heart. There was Dr. Rebeyka, Dr. Noga (she's the radiologist who came up with this idea of a 3D CT and make it happen), all her colleges, and Dr. Rebeyka's surgical residents. 
Basically through conversations, it was decided that while a surgery may benefit Evanna, they're not sure if now would be appropriate. They feel Evanna's oxygen saturations are still very good considering her large VSD, and that we need to work on her ventilation needs and continue to tweak those. Though I originally thought Evanna should have surgery a few days ago, after seeing everything and having it all explained to me, I feel much better about holding off for now. Once the intentivists feel like she's ready, Dr. Rebeyka agrees that we should transfer Evanna back to Calgary, and continue to work towards discharge from there. 

So that's where we're at. I don't have a day, other then "next week", and despite a busy morning, we've had a pretty relaxing afternoon. Once our nurse removed all of Evanna's lines, she asked if I wanted to hold her again, and so that's exactly what I'm doing right now (she's sleeping on me, so I'm typing and posting this from my phone). Compared to a few days ago when Evanna did not enjoy being held, she is quite relaxed and sprawled across my lap!

xo The Irvine Family

+ On [[JUNE 12]] @compassionauction has graciously asked if they could hold an auction for us on Instagram, and will donate all of the proceeds to our family. Please do me a favor and follow these steps:
1. Follow @compassionauction on Instagram to get in on the action. If you have something you would like to donate, email them at In the email include a photo of the item or your logo for store credit, a short description of your item, the retail value, where you are willing to ship the item too, and if your including shipping or how much shipping will be.
2. Tag any friends and encourage them to participate as well! 
3. Tag any of your favorite IG/Etsy shops that you think would be interested in donating (we are still in need/search of items for the auction). 
4. Most importantly »» be sure to bid and participate on June 12!! 

+ If you take a look on the right hand side of this blog, you can see that I have set up a You Caring page to receive funds from the auction. However, it will also accept monetary donations that anyone may wish to contribute. While most things have been covered during this journey, the length of our situation has dug into our savings just a little bit. This is why when @compassionauction contacted me asking to do an auction on our behalf, I couldn’t turn it down (I liked the idea of people receiving something in exchange for a donation). Overall, the amount raised isn’t really as important as the support, love and prayers we have received. So while donations are appreciated, more than anything we ask for your continued prayers and support. The account will only remain open and active until June 30, 2015.

Thursday, May 21, 2015

Cardiac Cath Results

Photography by Guenard Photography

Where do I begin? So just like Dr. Rutledge predicted, Evanna's cardiac cath took just over 4 hours. I am honestly still trying to digest everything she told me, as sometimes keeping up with everything Dr. Rutledge says isn’t that easy (she an incredibly smart and talented woman). While I know more than the average mom (I think I deserve some sort of Respiratory or Nursing degree after all of this), I still have moments where some things just go completely over my head and wish Nick were here to catch what I miss (unfortunately Nick had to work today, and while I'm sure his boss would have given him the day off if he asked for it, Nick tries to be really careful of what days he really needs to request off. Unfortunately, the world continues to move forward no matter how long your child is in the hospital and the bills don't just pay themselves).

Anyways, from a "procedural" point of view, they only ended up ballooning one collateral on the right side and didn't insert a single stent. Dr. Rutledge stated that Evanna’s collaterals on the right side looked good, but they are incredibly concerned with her collaterals on the left. Her left collaterals are very narrow where they come into her conduit. In fact, they are only about 1mm in size and they were unable to thread a wire into them. However, as you get closer to her left lung, the collaterals begin to widen a little bit, and so tomorrow Dr. Rutledge and Dr. Rebeyka will be going over the cath done today, her cath back in December and her last CT Angio to discuss options. What they're hoping is that her collaterals will be big enough just before they go into lung tissue (once arteries reach lung tissue, surgeons are unable to touch/do anything about them... am I losing any of you yet?) and see if they can either place a shunt or somehow use grafts to help increase blood flow to Evanna's left lung. So to sum everything up, we are mostly likely facing another MAJOR surgery in the very near future (like in the next week). They'll probably do another left thoracotomy, but until Dr. Rutledge and Dr. Rebeyka can meet and talk about everything, I have no details to share. All I know is that Evanna needs another surgery, and sooner rather than later. 

Evanna tolerated the procedure very well, they gave her all fresh lines (arterial, IJ and a new head IV….can’t wait for that one to stop working) except her trusty ol’ PICC line, and they changed out her trach as they reintubated her for the procedure. I just told Dr. Rutledge that she did my job for me, as Evanna needed a new trach change today anyways.

It’s been another long day, and I’m still processing the news. The fact that we are facing yet ANOTHER major surgery is heart wrenching, and I just don’t know what else to say at the moment. We are no longer looking to transfer back to Calgary in a couple of days like I was hoping, and it looks like we’ll be sticking around in Edmonton for a little while yet.

Thanks for the continued love, support and prayers.

xo The Irvine Family

+ On [[JUNE 12]] @compassionauction has graciously asked if they could hold an auction for us on Instagram, and will donate all of the proceeds to our family. Please do me a favor and follow these steps:
1. Follow @compassionauction on Instagram to get in on the action. If you have something you would like to donate, email them at In the email include a photo of the item or your logo for store credit, a short description of your item, the retail value, where you are willing to ship the item too, and if your including shipping or how much shipping will be. 
2. Tag any friends and encourage them to participate as well! 
3. Tag any of your favorite IG/Etsy shops that you think would be interested in donating (we are still in need/search of items for the auction). 
4. Most importantly »» be sure to bid and participate on June 12!! 

+ If you take a look on the right hand side of this blog, you can see that I have set up a You Caring page to receive funds from the auction. However, it will also accept monetary donations that anyone may wish to contribute. While most things have been covered during this journey, the length of our situation has dug into our savings just a little bit. This is why when @compassionauction contacted me asking to do an auction on our behalf, I couldn’t turn it down (I liked the idea of people receiving something in exchange for a donation). Overall, the amount raised isn’t really as important as the support, love and prayers we have received. So while donations are appreciated, more than anything we ask for your continued prayers and support. The account will only remain open and active until June 30, 2015.

+ We now have an official Facebook page! I only do blog updates every 2 - 6 days, but I try my best to do daily Instagram (@kierrai) and now Facebook updates for those following closely to our little heart journey. If you want your daily fix of Miss Evanna, click HERE or search "The Irvine Home // Evanna's Special Heart" to find our Facebook page.

+ Did you know that STARS Ambulance tweets about their calls? I looked back and found the one of them that was for Evanna, however even through an advanced search and trying to scroll to Evanna's February 26 STARS transfer, I was unable to locate that tweet (it won't let me scroll back past March 3 for some reason...grr). They don't reveal any patient information, but based on the date and call type, I was able to figure out which one was ours:

Tuesday, May 19, 2015

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

Saturday, May 16, 2015

Cardiac Cath Plans

I feel like it's been a week of "when it rains, it pours", and I've only just begun to process everything that's happened. Thankfully Evanna has recovered and is slowly on the mend. At the moment, we've almost got all her IV sedation medication back to oral, and they have been able to make some medication decreases. We were so close to coming off of the hydromorphine and ativan, but when her health deteriorated quickly last week, they cranked everything up full force.

So back to the "when it rains, it pours" comment.... not only did we have to deal with the quick transfer back up to the Stollery Children's Hospital, on Tuesday night I accidentally left my wallet in the healing garden here at the hospital. Instead of turning it in, the person who "found" it, decided to try and make as many purchases as possible before it was too late. Thankfully our bank caught onto it very quickly and we were able to shut down all of my accounts in a timely manner. It definitely has been a pain in the butt to deal with considering our situation, but we've had so many people help us out, that it hasn't caused too many headaches. I was able to borrow some cash from another PCICU parent for a couple of days and some family members were able to arrange to bring up some ID for me so I could obtain another debit card and have access to our bank accounts. Our bank was incredibly accommodating, and after explaining the situation, they sent me a new credit card to our hotel within 2 days! I still have to replace a few more cards like my drivers licence, but the police officer said to just concentrate on my daughter and do it later next week. With the police report that I filed, he said I should be just fine and won't run into any problems if I get pulled over.
Finally I had an anonymous birthday card for Evanna dropped off to the unit from a fellow heart family. It was filled with some gift cards, including one to Winner's so I could go buy myself a new wallet to replace my stollen one and some scratch tickets to "help turn my luck around". It was the sweetest thing, and I'm just blown away with how many people stepped up to help our family when we ran into a bit of trouble. Between another heart family, the Heart Beats Association in Calgary and the Ronald McDonald House here in Edmonton, we've had many envelopes full of gift cards and some cash to help cover what was lost. Not to mention the many offers of meals and money from all over to make sure that this incident wouldn't get in the way of the most important thing - Evanna's recovery.

The last thing that was kind of hard for me to deal with is that Evanna has been scheduled for a procedural Cardiac Cath next Thursday (May 21). It's not as invasive as an open heart surgery, but Evanna's previous two caths have only been diagnostic ones - this one they actually want to do some things to her heart. I've tried my best to explain Evanna's anatomy in the past (click on the "Heart Journey" tab on the far right hand side of this blog where I try my best to break down Evanna's diagnosis), but basically what's makes Evanna's heart so complicated and severe is the fact that she wasn't born with a pulmonary artery. Instead her heart grew tiny little collaterals that take blood from her heart to the lungs where it gets oxygenated. Unfortunately collaterals have a tenancy to narrow, and Evanna has narrowing in multiple spots in all of her collaterals. They want to do a cath to try and balloon some of those narrow spots. It's an extremely delicate procedure, and I'm both annoyed that we have to wait until next Thursday to do the procedure, but also just as nervous as if it were an open heart surgery.

So the goal is to keep Evanna well and stable until Thursday, do the Cath and then I'm really hoping we can transfer Evanna back to Calgary as soon as possible and get back to where we were in our journey to discharge. I've gotten a few comments and questions as to why we just don't keep Evanna in Edmonton (I'm guessing from the outside looking in, it definitely seems like we can never leave Edmonton/Stollery) but in order for us to actually take Evanna HOME, we need to be in Calgary at the Alberta Children's Hospital so we can actually set up homecare. Homecare setup involves so many different disciplines and there is just so much that has to come together to ensure our home is a safe environment for Evanna. For example, when we're actually close to discharge, we will have to do a number of day and weekend passes at home to get comfortable with Evanna being at home with a trach and kind of prove that everything is good to go. Dr. Ryerson once stated that Nick and I are an ideal "trach family" due to both our medical knowledge in the home (Nick being a paramedic and all), and how involved we are with her care. Though we're an ideal "trach family", Nick and I have to be trained to care for Evanna (which we've already been doing), homecare nurses have to be hired and trained, supplies have to be ordered, Evanna's room has to be rearranged and setup into a suitable situation for her and outpatient clinics have to arranged and appointments have to be scheduled. So while we kind of wish we could just stay at the Stollery until Evanna gets discharged, unless we plan to relocate to Edmonton (which has definitely come up in conversation and joked about often), we NEED to transfer back to ACH in Calgary in order to get everything set up and be able to take Evanna home.

Thank you so much for the amazing support and continued prayers for Evanna. Please specifically pray for Evanna to stay well this week for her Cath, and for the Cath to go well without any complications.
People constantly ask us what they can do for our family, and so when we actually needed some help, it was truly touching to see people step up to the plate and be there for us.

xo The Irvine Family

» I haven't had time to mention it with everything that's gone on in the past week or so, but I just have to talk about a really awesome email our family received about 2 weeks ago. I don't want to state any names, but through friends of friends and some awesome connections, we received a video "birthday card" message from our city mayor! Calgary is a pretty big city, and so we feel incredibly honoured that our mayor would take the time to record a sweet little message to Evanna and send it to us. However, to keep the integrity of the video and respect certain wishes, we've been asked NOT to publicly post the video. So if you wanna see it, you'll have to come find me personally (sorry to our nonlocal followers) and ask to see it for yourself!
Anyways, those who were involved know who they are, and so to you, I say Thank You!

Some Reminders:

+ We now have an official Facebook page! I only do blog updates every 2 - 6 days, but I try my best to do daily Instagram (@kierrai) and now Facebook updates for those following closely to our little heart journey. If you want your daily fix of Miss Evanna, click HERE or search "The Irvine Home // Evanna's Special Heart" to find our Facebook page.

+ Earlier today I announced a very special event happening on Instagram. @compassionauction has graciously asked if they could hold an auction for us, and will donate all of the proceeds to our family. It's happening on [[JUNE 12]], so if you would like to get in on the action, please do the following steps:

1. Follow @compassionauction on Instagram to get in on the action
2. Tag any friends and encourage them to participate as well!
3. Tag any of your favorite IG/Etsy shops that you think would be interested in donating.
4. Most importantly »» be sure to bid and participate on June 12!!

Monday, May 11, 2015

PCICU Day 218

It's been a hurry up and wait kind of day, and we still don't know much more than we did yesterday. Unfortunately Evanna is still being kept very sedated, and even paralyzed at times. When Evanna is "sleeping", her numbers look great and is relatively stable. However, the moment Evanna wakes up, she starts to fight the ventilator and becomes extremely difficult to even bag for the RT's. That then causes her heart rate, CO2 and blood pressure levels to rise, and the only way to temporarily "fix" the situation is to give her some more sedation medication and even paralyze her.

This morning they did a CT Angiogram and Lung Profusion test. It did show some slight narrowing of her pulmonary collaterals (this is what makes Evanna's heart complex and severe), but it still doesn't really explain why Evanna can't handle being awake. It may be a contributing factor, but not enough to explain for the way she's currently acting. We're also discussing possibly another cardiac cath (major diagnostic procedure) to maybe balloon some of those collaterals, but they won't do one until Evanna's blood cultures show no signs of infections for at least 72 hours.
There are a few things that I'm hoping to get accomplished over the next 24 hours. I'm already on the PCICU case about leads and have talked to the wound care nurse a few times today - so I think that's finally taken care of. I'm practically kicking myself for not grabbing a pile of nicer leads from ACH before Evanna got transferred, but the transfer honestly happened so quickly and I didn't have much time to think about everything. In the meantime they're just going to move the leads around Evanna's body and apply some hydrocortisone cream to those areas.
Next is we NEED to get Evanna's PICC line sorted out. There is a lot of confusion over whether it needs to come out or if it can stay in. Hopefully we can have some clarification later tonight during rounds.
Finally, Nick and I were discussing at what could possibly be causing Evanna to be so irritable and angry when she wakes up. In the past, the intentivists have put her on some antipsychotic medication to help deal with delirium, but has since been taken off of it while we were back in Calgary. All of Evanna's sedation medication have been practically doubled from last weeks doses, and so I'm sure it's a legitimate theory.

With miss our little girl. It's just so hard to believe and fathom that just last week Evanna was doing so great, smiling and doing home ventilator trials. Now she is puffy and asleep, so it's a little heartbreaking just sitting here at her bedside, unable to do much.

Thanks so much for the massive Facebook support. It hasn't been even 24 hours, and we've already surpassed a 1000 likes. If you haven't done so yet, and would like to continue to get updates, please click HERE or search "The Irvine Home // Evanna's Special Heart" to find our Facebook page.

xo The Irvine Family

Sunday, May 10, 2015

PCICU Day 217

Evanna got to Edmonton safe and sound, and we arrived a few hours later. Just like Calgary, the medical team here is a little puzzled as to what's going on, as again, her xray and ECHO show nothing of significance. They've decided to hold tight tonight, keep her as sedated as possible and do a CT Angiogram tomorrow morning to see if that'll show anything.
They've continued to keep her sedated because the moment she wakes up, she starts to freak out, fight the ventilator and all her numbers are terrible (ie. her heart rate goes up, she desats, blood pressure increases, and her CO2 climbs).

Since Evanna has arrived, Dr. Aditia placed a new arterial line (yeah!), given a second blood transfusion in less than 24 hours (she got one at 11pm last night), and converted a bunch of her oral sedation back to IV.

Finally, I have caved and created a Facebook Page for this blog/Evanna. Over the last several months, I have received numerous "friend requests", and because not everyone has Instagram (@kierrai) and it's not easy to always remember to check for updates on the blog, I decided it was time to create a Facebook page.
I was somewhat reluctant to create a page for a long time, as overtime, Facebook makes it so less and less people see updates unless you pay them to "promote" your page, but this is the only solution I could think of for the time being. I haven't decided whether this will be a permanent thing or something I will eventually delete, but for now, it is what it is. So either click HERE and "Like" our family page or just seach "The Irvine Home // Evanna's Special Heart" on Facebook.

Thanks for the flood of sweet messages, prayers and well wishes. I'll be sure to update everyone when we have more answers tomorrow.

xo The Irvine Family

Another STARS Transfer

Nick and I didn't leave the hospital until 12:30am last night, but when I called at 6am this morning, Evanna was doing alright. We were told the epinephrine had been turned off, her heart rate was somewhat stable, and she wasn't fighting the ventilator anymore. We decided that it was safe enough for Nick and I to quickly head to Okotoks for the morning and attend our nephew Dax's baby blessing, but agreed to leave immediately for the hospital right after.

On our way back to the hospital, Dr. Mahoney called us saying that they decided to call Edmonton as an infection couldn't explain for how fast Evanna deteriorated yesterday. They talked to Dr. Aditia at the Stollery and they decided that Evanna should have a lung profusion scan - so another transfer was immediately planned. Again, due to Evanna's critical condition, it was decided that she had to go by STARS Air Ambulance back up toEdmonton.
When we arrived at the hospital a few minutes later, the team was quickly getting Evanna packed up and ready to go. STARS had just landed, and Nick and I rushed around packing up our personal belongings and taking down all the birthday cards.

We've since ran back home, repacked our suitcases (my poor bags... I'm going to have to buy some new luggage in the near future lol), and are driving back up to Edmonton as we speak.
This transfer has definitely been a huge blow and completely unexpected. We've come so far and there was a light at the end of the tunnel, so I've definitely been crying a lot this morning.

Please keep Evanna in your prayers, and we'll update when we know more.

Happy Mother's Day to me....

xo The Irvine Family

Saturday, May 9, 2015

A Terrible Day

We've had a few miserable and terrible days around here. We don't really know what's going on, but something has definitely been off and we're emotionally and mentally exhausted. Earlier this week the medical team, Nick and I thought it was withdrawals, and while that may be a small contributing factor, we think something else is going on. The biggest issue has been Evanna's very high heart rate. On Tuesday, her heart rate had been above 200, and we're still not exactly sure as to the cause of it...

It all started Tuesday, and because we had been weaning her sedation medication by quite a bit since we arrived back to Calgary, we immediately thought that Evanna's agitation, gagging and heart rate were all due to withdrawals. It was an awful day all around, and I didn't leave her room once until supper time to finally get some food inside me. They were still able to do a home ventilator trial that day, and she actually did incredibly well - even better than expected, so at least there was some positive things happening.

Evanna improved a little bit on Wednesday, and so we were able to continue with the home ventilator trials. She again did very well, and so we became very optimistic of her progress towards being completely transitioned over to the home ventilator and working towards transferring out of the PICU and onto a regular hospital ward. Evanna wasn't quite back to her old self, and I think smiled for Nick once the entire day.

Thursday seemed to bring just more agitation and a continued high heart rate. Evanna was extremely unsettled and irritable and the medical team was at a slight loss as to why she was behaving the way she was. We were giving her extra doses of sedation medication when she needed it, all her lab work had come with negative results for infection, her ECHO (ultrasound of the heart) hadn't shown anything of significance, and we hadn't weaned any drugs for days. To help the heart rate they gave Evanna some extra boluses of fluid and started antibiotics as a precaution. The cardiologist on call thought that maybe Evanna was a little spetic and dry, and after the extra fluid and antibiotics set in, she seemed to settle out a little bit and her heart rate came down slightly later that evening.
Things finally seemed to have turned around yesterday (Friday), and I was extremely hopeful for an awesome Mother's Day weekend. Though the day started out with Evanna's heart rate a little high again, they decided to switch her over to methadone from hydromorphine in hopes it would help her wean better, and by 7pm Evanna's numbers (heart rate, O2 saturation, etc) were looking beautiful.

Today Nick and I decided to take our time in getting to the hospital this morning. Nick had just gotten off from a night shift and all was well at the hospital. I called the PICU around 11am to check in on Evanna, but was told the nurse was busy cleaning up a massive poop explosion. I was told they'd call me back with an update and that was the end of our conversation. I finally got a phone call around noon, but it was someone telling us that we should make our way to the hospital as soon as possible, and to drive carefully. All we were told was that Evanna was "air hungry", she was very tachy (high heart rate) again, and the intentivists were in her room. We grabbed the rest of our things (we were suppose to attend a wedding later on tonight), and just decided to finish getting ready at the hospital when things calmed down. While I knew things weren't good, I honestly thought it was Evanna just being irritable and unsettled and so I wasn't too concerned while we were driving to the hospital. When we got there, the hallway was filled with different supply carts and her room was filled with gowned-up staff. I immediately knew how wrong I was, and just how critical the situation actully was.

We learned that Evanna's lactate had somewhat climbed, her liver was enlarged, and by looking at the monitor, her heart rate was well above 200. They said they initially had a really hard time bagging her, and it was difficult to move her chest up and down. Her blood pressure was also making swings from a little high to a little low, so they have been turning epinephrine on and off throughout the day. An xray and ECHO really didn't show anything of significance, but they were concerned about her little heart collaterals (this is what makes Evanna's heart so special and complicated) narrowing. Labs results came back and showed that her PICC line was infected, so that will definitely have to come out now. This PICC line has been in since the end of October, and so I guess it's a little disappointing that it's now causing problems. It has been such a great line and was still working great, so they'll probably end up placing a new one later this week.
They decided to put a new central line in, and asked Nick and I to leave so they had a sterile environment to work in. It took almost 3 hours for them to find a suitable spot and place the central line, as poor Evanna's body has so many holes in it, and there isn't much "real estate" to work with for lines. Once we were allowed back into the unit, we were able to speak to the intentivist on the plan moving forward. Dr. Doughty is hoping Evanna will stable out, and "let the dust settle". He and the cardiologist on call reviewed everything and contacted Edmonton for their input. At this very moment, our best guess for Evanna's quick decline in health is an infection. Other tests haven't shown anything, but they are still slightly worried about her little pulmonary arteries as they're hard to assess by ECHO. We of course talked about and discussed a transfer back to Edmonton, but as of right now, it's not a really good option. While we may want to do a cardiac cath in the very near future, Edmonton wouldn't do one right now because of Evanna's current infection. So because of Evanna's poor stability, and there is nothing Edmonton would do at this very moment that Calgary can't do, there is really no point in transferring Evanna back up to the Stollery at this time. This option is not off the table, and we definitely have to keep it in the back of our minds, but there is currently no benefit to transferring Evanna right now and it would only put Evanna at greater risk.
Dr. Doughty has also decided to put another arterial line in Evanna to better monitor her, but after 4 hours they have been unsuccessful thus far. She hasn't been ventilating very well this evening, and so they've also had to continue to sedate and paralyze her to keep her stable.

It looks like we're going to be in for a very long night. Things are still pretty critical, so please keep Evanna in your thoughts, hearts and prayers.

xo The Irvine Family

Monday, May 4, 2015

Spreading Sunshine {Birthday Week}

»»»»» PCICU Day 205 - 211 «««««

We're back in Calgary, and slowly settling in quite nicely. There are a lot of adjustments and we're trying to get into a new routine that comes with being at a new hospital, and being at home verses the Ronald McDonald House (by the way – McHappy Day is this Wednesday! So be sure to visit your local McDonalds and indulge in some “guilt free” fast food, as the money goes towards such an amazing cause that is very near and dear to my heart).

The transfer back to Calgary went very smoothly, and Evanna enjoyed yet another private plane ride with her entourage of medical staff. We meet with Dr. Mahoney who was the main intentivist on for the week when we arrived at the Alberta Children’s Hospital (ACH), and she was actually very pleased at Evanna’s medical state and progress. She stated that while she knew what medications Evanna was on prior to transfer, she did not know the amounts, and was actually quite surprised at how low the doses were that Evanna was on. The Evanna they know from back in November and February was on very high doses of sedation medication, and she was always incredibly hard to wean. This past week we have been making small, but steady weans every day, and Evanna has been handling it very well. It really goes to show how much better Evanna is feeling, and how far we’ve come the past few months.

The first night back, the PICU decided to not touch a single thing and just leave Evanna alone. Hospital transfers can be really hard on children, and so they decided that the transfer was enough excitement for Evanna to handle for one day.

Tuesday was a very busy day, as we began to meet with different medical disciplines from all over the hospital. Cardiology came down and assessed Evanna, but because she is very stable from a cardiac standpoint they will be just following us throughout our admission and remain somewhat “hands off” at this point. We also met with the Respiratory Therapy (RT) manager of the PICU who will be heavily involved in transitioning Evanna over to a home ventilator and getting Evanna home. One thing that kind of surprised me was when Dr. Mahoney told us that the ONLY thing keeping Evanna in the ICU is the fact that she is still on a hospital ventilator. Once we get her on a home ventilator, there is technically nothing else holding us in the ICU, and we can actually look at transferring Evanna up to the ward and work towards being discharged home! I’ve become so accustomed to ICU life, that transferring to a regular ward is going to be both really hard and weird to me. I know it has to happen, but this is what happens when your child is in the ICU for almost 7 months.
At other points in the day, the Pulmonary clinic stopped by to see us, as well as Dr. Drummond (ENT). They too were pleased with Evanna’s progress, and were shocked when I told them that Evanna’s tracheomalacia is gone. We know that Evanna has a still long way to go before she can be decannulated (the process of taking the trach out), as Dr. Doughty pointed out the other night that the prolonged intubation has left Evanna’s lungs incredibly weak and stiff.

Wednesday was another very busy day. Why? Because it was Evanna’s FIRST BIRTHDAY!! The morning begun with staff bringing us balloons, and singing “Happy Birthday” to Evanna. They had one of the hospital musical therapists come in with a guitar and any nurse or RT that wasn’t busy came in and sang to Evanna. Later my mom, sister, niece and nephew came to see Evanna and brought cupcakes. Unfortunately around the same time, they tried to trial Evanna on the home ventilator, but she didn’t do very well. We think because of the over stimulation and how busy everything was, and so it was just too much for her.

Later that day my dad dropped by, followed by Nick’s side of the family. It was so great to see everyone, including Nick’s dad and brothers, all of whom I haven’t seen since before Evanna’s first surgery. Overall it was a beautiful day. All I wanted for Evanna's birthday was to be back in Calgary, and for her to be awake and interactive. I knew she'd still be in the ICU, and for a long time I was told that my wishes were very realistic by our Edmonton medical team. Then when her valve clotted for the 3rd time on April 11 and another open heart surgery just one week before her birthday became our new reality, I knew my "wishes" were no longer achievable. I just wanted the simple things for Evanna's birthday, and so I cried when I thought of what her birthday would know look like just 1 week postop. I was speechless when they brought up transferring Evanna down to Calgary for her birthday, and in disbelief that it ACTUALLY HAPPENED! Evanna was awake all day for her birthday and the smiles were endless. My humble prayers were answered, and I was blessed with this beautiful tender mercy.

On Thursday Nick stayed home to get some errands done around the house and make some meals to take to the hospital. Occupation Therapy and Physical Therapy (OT/PT) came by to assess Evanna, and I was extremely nervous with what they were going to tell me in regards to Evanna’s development and how behind she was, however they were ecstatic with what Evanna WAS doing. PT loved that Evanna was bringing her arms up “midline” and playing with her hands. She also noted how much Evanna was kicking her feet, even though one of them had a big arterial line in it at the time. In regards to possible oral aversion, OT doesn’t think Evanna has any. With the way she loves her soother and reacts to being touched around her mouth leads her to believe that she’ll go back to eating by mouth easily. I was so happy to hear all of this, and relieved to hear that despite everything Evanna has gone through, this incredibly long hospital admission won’t affect her too much. Unfortunately we have to wait until Evanna is off a few precautions, and back to NG feeding before we can proceed with these therapies. Evanna still has about another 4 weeks of sternal precautions because of her last open heart surgery, and until Evanna is transitioned over to the home ventilator, they don’t want to rock the boat and switch her from NJ feeding to NG feeding either. So we’re stuck at just doing minor and simple things with Evanna for a few more weeks before we can progress and start pushing Evanna to her full potential.

Jennie (of Guenard Photography) came on Friday to take some family photos for us, and help document this moment in our lives. She’s had been wanting to come take some photos of our family for a while now, but I was uncomfortable doing professional photos while Evanna was still intubated, and I wanted to wait until she was more awake and interactive. Nick asked the nurse if many people have family photos done in the ICU, but the nurse responded back by saying that not many families have such long stays in the hospital either.

The rest of the weekend was spent with Evanna and having more visitors come see her. One thing that all our visitor have been saying is that they’re all surprised with how awake and interactive she is.

This actually brings me to my next topic:

Visitors! We (well I) absolutely love visitors, so if you are at all interested in coming to see Evanna and I (Nick isn't here as often), please feel free to do so. Before you do, here are a few tips: 

1. There are no set visiting hours. The PICU is a 24hr unit, so as long as I'm here (which I usually am from 9am-9pm, give or take), you are able to visit.

2. Message me first! Either by text or Facebook, let me know when you would like to come by. I try to space people out, so not everyone is coming at the same time, and make sure I have nothing planned (like errands) while you're here.

3. Feeling sick? Have a cold or runny nose? Then please stay away! Being in the hospital already exposes Evanna to her fair share of bugs, and the last thing she needs is another one. Also, I'd appreciate you be up-to-date on your vaccinations. I'm not talking about flu shots - just your good ol' fashion childhood vaccinations (in case you're wondering where we stand on the whole vaccination debate - now you know).

4.  Please know that visitors are the highlight of my day, so try your best to come when you say you’re going to come UNLESS you're not feeling well (see #3). This has been a very emotional and exhausting journey. I've opened up and been very public about our situation, and invite you to come visit, hang out and see for yourself what we go through every day. Though I don't take it personally when people cancel, it doesn't necessarily help either and can unfortunately add to my stress level. Again, I LOVE visitors and having someone here to talk to during the day. It makes my day and lightens the mood, but cancelling plans to come visit is just another thing I'd rather not deal with. So when making plans to come see Evanna, please double check your schedule to make sure you are in fact free, and try your best to make it up to the hospital.


I would finally like to end this post about an amazing organization that ANYONE can take part in. Over the past few months I have been graciously asked to participate in some beautiful and wonderful campaigns, all aimed and geared towards sick children, and I can’t wait to tell you all about them (stay tuned for Spread The Lovey in the next few weeks). Our family has been on the receiving end of so much love and support, and so I want to make sure that others in need feel and receive that same love and support too.

Today I would like to introduce you to Spreading Sunshine. They are a non-profit organization that sends boxes full of “sunshine” to those who need a smile. So how does that involve you? They depend on people like YOU to sign up to be sponsors. Once you submit an application, they will match you to a child in need, and give you information on what that child likes and needs in order for you to fill and box and send it to them. 

“You simply fill a box with items that your sunshine buddy would enjoy. When you are matched as a sponsor with your child, a list of ideas is provided, but items often included are coloring books, crayons, sidewalk chalk, small toys, stickers, jewelry, puzzles, clothes, games, and favorite snacks. These are just a few examples of all the small things that can bring rays of sunshine to your special buddy.” 

This is such an incredibly easy way to give back and do a good deed. Our family was matched with a wonderful group of nurses out of BC Children's Hospital. Within weeks of being matched they sent us a lovely box that I opted to wait until Evanna’s birthday to open. It definitely brought us a little sunshine, and put a smile on our faces when I opened it, and we have already used many of them items sent to us.

Please click HERE to read their sponsor guidelines and HERE to sign up. Do it with your family for Family Home Evening to teach about service and showing kindness towards others in  need, or like our box in particular, do it as a bonding experience with co-workers. Let me know if you have ANY questions, and I’ll do my best to answer them or direct you to someone who does.

Thank you so much for continuing to follow along, pray for our little girl and showering us with love and support.

xo The Irvine Family