Wednesday, March 25, 2015

Liver Problems

So Evanna has generally recovered from her Sunday "episode". They still have no idea as to what caused it, as nothing has come back on her labs, so the intentivists are at a loss as to why she almost crashed.

Monday morning we got a phone call at 2:30am saying that Dr. Aditia was worried of a possible brain bleed because she wasn't acting appropriate and her INR level was extremely high (her blood was too "thin") and so they were taking her for an emergency CT. Later they called us back at 4:30am to say her CT came back fine and they were just going to hold some sedation medications as she was too sleepy. Around lunch they did another ECHO and saw that her mechanical valve was working great, and that her heart function had somewhat improved. Further xrays of her abdomen showed that whatever they were seeing on Sunday in her stomach is gone and has completely cleared up. Blood work done later began to show that her liver took a bit of a hit on Sunday, but they're hoping over time it will begin to heal.

Due to her liver not being in the best condition, they've had some trouble finding a nice balance with her sedation medication. For almost 24 hours they had to completely put a hold on almost all of sedation medication, because her liver wasn't metabolising it like it normally would and so it was kind of "sticking around" in her system and causing her to be really sleepy.
Another problem that we've been running into has been her INR levels (this basically measures how "thin" the blood is and how fast it takes to clot). Initially it was too low, and the sole reason why our transfer back to Calgary was put on hold. Now her INR levels are too high, and the risk for bleeding is super high. Her arterial line was bumped on Saturday and they still haven't been successful in getting it to stop bleeding - the bleeding is controlled, but she keeps soaking through her dressings. This has been the main reason as to why we are unable to hold Evanna, and I just feel like we've made soo many steps backwards in regards to Evanna's progress.

This morning Evanna was fighting the ventilator and she was somewhat holding her breath, so they had to paralyze her a few times in order for her to get her to breathe. The labs on her liver came back and they they were actually worse than yesterday, so they've consulted gastroenterology and have run a few more tests to try and get to the bottom of everything. Yesterday we were talking of a transfer back to Calgary early next week, but now I don't have a clue as to when that will happen, as Evanna continues to throw us curve balls.

Thank you for the continued support, love and prayers for our little family. Though Evanna crashed very quickly on Sunday, I know it was because of the power of prayers that she turned around so quickly. We still have a ways to go, and I honestly couldn't tell you when we will be able to bring Evanna home. Heck - out of the Intensive Care Unit would be nice lol! Cards for Evanna's 1st birthday have begun to arrive, and I'm so excited to open them, show Evanna and read her the sweet messages that everyone has written for her. For more details on the "Cards for Evanna's 1st Birthday" public Facebook event, please click HERE. The address to mail the cards to is listed in the event description, but please feel free to comment if you have a question or query.

Finally, I would like to bring your attention to my friend Danielle, and her special little boy Gunnar. He was born a few months after Evanna with the EXACT same heart (including the MAPCAs, which is what makes Evanna's and Gunnar's anatomy so complicated), as well as 22q11. They're from New Jersey, but he will be having his surgery done in California very soon. They're having problems getting insurance in place, and the situation might actually DELAY his surgery until July! I've had many people ask me why we don't have a crowd funding account for Evanna, but the reason is because we really don't need the money (we've received small monetary gifts here and there, and they've definitely come in handy and helped lighten our load), but there are so many other people in greater need then us - so I don't want to take away from those who need it more than us. Anyways, if you are able to, please click HERE to donate to Gunnar and his family. I'm sure even small donations will mean the world to them!

xo The Irvine Family

Leggings given to us by my friend Tara. Her little girl has 22q and spent her fair share of time in the ICU when she was born and wore these exact leggings. It has so much meaning to me that they were on the legs of another fighter!

Sunday, March 22, 2015

ECMO Alert Update

Before I dive into this post - as it will be an update going over the last few days, let me quickly just say that as of right now Evanna's blood gases are improving, and Dr. Ryerson has stated that Evanna is slowly moving away from ECMO alert. I'm incredibly grateful for several things right now, and though it's been a bad day, I'm counting our blessings:
1) While it initially kind of sucked that our transfer back to Calgary was put on hold, I now realize (bigger picture) that Heavenly Father was watching out for us and ensured that we stay in Edmonton where it's so much safer for Evanna. Not sure if I've talked about it before, but due to Evanna's unique heart anatomy, she is NOT an ECMO candidate in Calgary because they don't have a pediatric cardiac surgeon on hand to hook Evanna up to the cannulas through her chest.
2) That Nick is with me again here in Edmonton
3) Prayers. Though Evanna initially got worse for a little bit after I posted what was going on, Evanna quickly came around and has stabled out. I truly believe it was because everyone stopped what they were doing and prayed for her. I can't express how thankful I am that so many people love our little girl and I'm incredibly grateful for the support we have received.


So just like that, Evanna's transfer back to Calgary has been put on hold for at least the weekend. We tested her INR levels this morning (it's a blood test done to check how thin her blood is as she's on blood thinners), and her levels were too low. Her mechanical valve is incredibly important and we just can't risk it clotting again, so hematology has asked that we stay in Edmonton for the weekend, as they feel it's safer for her to be in the PCICU at the Stollery.
I'm a little tired as I just spent the morning cleaning and packing my room at the Ronald McDonald House (it's not like a hotel, and house guests are still expected to clean up after themselves before checking out), and now I have to rebring all my luggage back into the house at some point later today. At the moment they're just holding us for the weekend and if Evanna's INR levels improve, then they will look at trying to transfer us again early next week. Just goes to show how quickly things can change when you're in the ICU!

No hospital transfer meant we had time to do some physical therapy today! Due to the fact that Evanna was intubated and confined to a bed for more than 5 months, she has lost so much muscle and is incredibly weak. She is basically a newborn all over again in that regard, and we literally have to start at square 1. 
This little girl has so much control over my life right now »»» but with a face like that, I don't mind one bit!

This is how I found Evanna sleeping when I came back from lunch with a fellow Stollery mom »»» I can't get over how stinkin cute she is!! I can't even describe how happy she makes me, and my heart could explode with how much I love her!

#PRAYERSFOREVANNA || Evanna is very sick right now. High heart rate, breathing really hard (requiring bagging at times), moments of unresponsiveness, low oxygen saturations, extremely high temperature, etc
They JUST did an emergency ECHO, and THANKFULLY her mechanical valve is fine and moving well ««« such a huge relief. They drew cultures and are starting her on some antibiotics again, and so I hope she'll improve throughout the day.
Please, please keep Evanna in your thoughts and prayers today. It's been a scary morning, and it's heartbreaking that just yesterday I was so happy because I was seeing glimpses of the old Evanna. At least we're still in Edmonton...

ECMO ALERT || Though Evanna's heart rate and temperature have come down, her pH is at 7, meaning she has become very acidotic. Her lactate and glucose are through the roof and Dr. Ryerson has officially put her on ECMO Alert. Anyone in the heart community will know what this means and how critical the situation has become. Nick is on his way (he was coming up to Edmonton today anyways), and is almost here. They're going to chemically paralyse Evanna and start her on some Milrinone (and drug that helps the heart pump) in hopes that it will improve her blood gases. I'll continue to update when I can ///// Picture is Evanna having a abdominal xray done

I finally have a moment to catch my breath, but I don't even know where to begin. Essentially Evanna's body was "shutting down", and things got critical real fast. Her extremities went really cold as her body was only sending blood to her heart and her head, meaning it was preserving only what it had to.
They're not quite sure what we're dealing with, so they're treating everything they can think of, but Dr. Ryerson's best guess is sepsis. They drew cultures, but we probably won't see any results until at least tomorrow. They also did a really long ECHO (I swear it was 2 hours long), and though her heart looks "okay", they definitely noticed a decrease in function and it doesn't have the same "squeeze" it normally does. Milrinone was started again (it's a drug that helps the heart pump), as well as some antibiotics to help fight off whatever this is. Evanna is being kept sedated and paralyzed for a little while to help her body recover, and let the medications and ventilator do the work it needs too. They also discovered that her abdomen looked a little weird when they did an xray, so they've consulted general surgery and will do sequence xrays tonight and tomorrow to see if it clears up. In case they need to proceed with surgery, they have switched Evanna over to IV heparin instead of her regular Warfarin (a blood thinner) so she won't bleed out if she goes to the OR.
They gave her some calcucium, sodium bicarb (as her bicarb went down the toilet), hydrocortisone (apparently studies have shown it helps antibiotics work better if Evanna does indeed have a sepsis infection), as well as some fluid boluses to help her heart function.
They wanted to give her another blood transfusion just to overall help Evanna, but as of right now they haven't had success in getting another line into Evanna (she's such a hard poke), so they might try again later tonight.

Though Evanna got extremely critical today ("pre-arrest" as our nurse has put it), she has drastically improved within a very short span of time. Dr. Aditia didn't believe her last gas as it was "too good", and had them run the again, but the results came back the same! Thank you to everyone that has kept Evanna in their thoughts and prayers today and we're just praying that she'll have a good night and be back to her regular self soon.

xo The Irvine Family

Wednesday, March 18, 2015

All things Trach & Transfer

So it's been an incredibly busy 24 hours for me, and I don't even know how I had time to write up this post.
Yesterday Evanna had her first trach change done by Dr. Eksteen. It was kind of anticlimactic which makes all the fuss around it a little confusing. I KNOW the first trach change can sometimes not go as smooth as Evanna's did (the stoma could have closed up, etc), and there is a reason that the ENT has to do it, so in all reality, I'm glad it was as boring as it was.
After Dr. Eksteen left, we got things all cleaned up and I essentially just grabbed my nursing pillow and grabbed Evanna and pulled her into my arms. The nurses technically helped to make sure no lines and wires were being pulled (especially the scalp IV), but I pretty much did it by myself which I haven't been able to do since the beginning of October. I'm not a fan of the big trach that Evanna is currently sporting, but Dr. Eksteen has approved a different and nicer trach for her to be ordered for the next trach change so Evanna will have an easier time just being a baby.
I am in serious "I want to go home" mode and so I'm totally being that annoying mom on the unit making sure we are constantly doing things to ensure that we are crossing things off the list that we need to complete so we can be discharged. Last night I asked Respiratory Therapy to hold off on trach care until I got to the hospital this morning, as I wanted to do it myself. They happily agreed as they’re eager for me to learn how to do everything myself so we can go home. It was actually quite a busy morning with lots of different disciplines showing up all wanting to teach and tell me different things. Kid Clot (hematology) came by early to have me test Evanna's blood, as we need to monitor it from home (it's VERY similar to how diabetes monitor their blood sugars), though I wasn't exactly successful. Evanna has such tiny fingers and she wasn't being that cooperative, and so I definitely have some practising to do! Warfarin is such a hard drug to control in small kids, as any little changes like diet, drugs and activity level can affect the way it's metabolised and used in her body.
Finally Respiratory Therapy was able to come do trach care with me. I cleaned the site for secretions, changed her trach tie, and even suctioned her myself! I'm a little scared for when I have to learn how to "bag" her, but I'm sure I'll get the hang of it real quick. Nick will most likely ace that part, as it's kind of in his job description. We even did some "arts and craft time" together, as they taught me how to make my own trach ties if I want to continue to use the Stollery protocol (I've been kindly pointed out that Calgary uses completely different ties, and they aren't necessarily that great).

All day we waited for OT/PT to show up, but they never did (we’ll call them again tomorrow), so around 1:30pm when Evanna woke up, I grabbed the nursing pillow again and pulled Evanna into my lap (with her nurses playing catch up to make sure her lines and wires weren’t getting caught on things). We actually had one of the best cuddles we’ve ever had since her first open heart surgery and I’ve never seen Evanna so content as she was this afternoon. She primarily just slept in my arms and knew exactly who I was and where we were. She probably stayed in my arms for a good 3 hours, but eventually she got really sweaty and wanted to move around. While I was holding Evanna, she got another blood transfusion, and those always tend to make her a little hot as well. Though Evanna’s oxygen saturations were fine, her hemoglobin levels were on the low side today and so Dr. Duff wants to make sure he’s sending Evanna back to Calgary into tip top shape. Finally we have continued to decrease her sedation medication, and we have been presently surprised at well Evanna has been handling it. Normally when we lower the dose by even a smidge, Evanna’s body notices and it sends her into a tailspin requiring a bunch of PRNs (“as needed” drugs the nurses are allowed to administer to Evanna without a direct order if she needs something). Everyday we have been dropping her IV medication by 1, and Evanna has barely noticed the change. Now, we’re not going to go faster, but it’s just been a nice change for Evanna to handle the wean for once.

This afternoon Dr. Duff called Calgary (well, the Alberta Children’s hospital) and talked to the intentivists about transferring Evanna back. This evening he confirmed with Dr. Ross (she’s an intentivist at ACH) that they will come pick up Evanna on Friday, as they need to bring a patient up to Edmonton anyways, so they’ll grab Evanna on their way back. So it’s basically confirmed - Evanna is being transferred back to Calgary this Friday, and I’m hoping this will be another step towards getting Evanna discharged. I called the Calgary hospital homecare team this morning again, and they said they will come and meet with us early next week to begin the process of setting up homecare. There is seriously so much that needs to be done before Evanna will be allowed to come home, and my head is spinning with a never-ending check list. Thankfully I have some awesome trach moms that live in Calgary who have already gone through this process that is helping me every step of the way. My aunt and uncle have also graciously stated that they would love in any way possible. My uncle owns a large respiratory homecare company, and has said that he’ll make sure everything is taken care of.  An incredible tender mercy in journey I never wanted to take.

Finally because I was able to blog this post from my computer (most of my blog posts are done and uploaded from my phone at Evanna’s bedside), I want to share an incredible video that was sent to us about a month ago. My sweet friend Jane is currently attending university in the USA (Southern Virginia University), and is a part of an acapella group called “The Fading Point”. Jane has shared our story with her friends, and they put together an incredible and touching video in which they share some beautiful messages, and sing a sweet song to Evanna. I hope you enjoy it as much as I do!

xo The Irvine Family

Friendly Reminder: Only 41 more days until Evanna's FIRST birthday! Make sure to RSVP to the public Facebook event and mail her a birthday card! Click HERE for more information and be apart of this special day!

Sunday, March 15, 2015

PCICU Day 158, 159, 160 & 161

The recovery from Evanna's tracheostomy surgery has gone relatively smoothly. The first few days were purely spent with keeping her sedated (which is no easy task), but after the first 48 hours, they began to let her wakeup. Talks of a transfer back to Calgary started up again on Thursday, but we've all agreed (the intentivists and I) that a few things must be accomplished before that happens. First, Evanna has to go through her "first trach change", which will be done by Dr. Eksteen (our ENT who did the surgery). Secondly, we want Evanna's heparin levels to continue to stablize out. Evanna will have the trach change on Tuesday, and her heparin levels are improving and relatively maintaining, so as long as everything continues to go well, Evanna will most likely be transferred back to the Alberta Children's Hospital sometime between next Wednesday - Friday.

As far as the heparin in concerned, it was decided a while ago that the enoxaparin shots weren't working for Evanna (the heparin needles I talked about awhile ago), and that warfarin would be a better fit. Good news is it can be taken orally, bad news is it's a little bit harder to manage - especially in kids. Nick and I will be trained how to monitor it and make sure Evanna's levels stay within normal limits. Many things can affect warfarin (diet, drugs, etc), so it's a very tricky drug and we will definitely have our work cut out for us.

Yesterday Evanna was being a little bit of a "pain in the ass" according to Dr. Duff, as she kept him and our nurse a little busy. For the first time ever, Evanna pulled out her NJ & NG tube (her feeding tube), so they had to put those back in. Next her arterial line decided to quite working on us, so they had to take that out and put a new one in. Finally her central line was blocking up, and that combined with a fever, suggested that Evanna had a line infection (which has been confirmed by bloodwork), so they took that out and started Evanna on some antibiotics. The surgeon fellow also came and finally took out her sutures from her last open heart surgery (February 9), and so with all that, it made for a very busy day for Miss Evanna.

The plan it to have a quiet weekend while Evanna continues to recover from her surgery. They are working on slowly decreasing her sedation medication, and convert it from IV to oral (so we can continue to take out more lines), and even come down on the ventilator settings. Dr. Duff told me yesterday that we really thinks Evanna will be decannulated (taking the trach out) by the end of the summer, so while I don't want to get my hopes up, that was so awesome to hear from yet another doctor. Trachs tend to be something that kids need for years, but we're seriously only looking at months. I'm just going to focus on one thing at a time and concentrate on the milestone at hand. First - trach change, then transfer back to Calgary and work on strength and setting homecare up so we can go home. That's where my head is at, and would rather prepare myself for Evanna needing the trach for a year and be presently surprised if she needs it for less.

Thanks for following along and including Evanna in your prayers,

xo The Irvine Family

PS. Only 44 more days until Evanna's FIRST birthday! Make sure to RSVP to the public Facebook event and mail her a birthday card! Click HERE for more information and be apart of this special day!

Tuesday, March 10, 2015

Surgery #6 (Tracheostomy)


«« Trach Time »» Well it's finally that time - Evanna is in the OR and having a tracheostomy procedure done. We're incredibly nervous, because though it's a straight forward procedure, the mechanical valve in her heart and heparin medication she's on slightly complicates things. I'm hopeful it will go well, and she'll be just fine...this is her 6th surgery after all.

A little bit of honesty » I didn't sleep very well last night, and so I'm a little more emotional at the moment. Though this procedure is the best thing for Evanna at this time, I was still overcome with a lot of anger. This journey has been incredibly long and even unbearable at times. I screamed "how much more will you put us through?" and silently cried myself to sleep last night. Evanna has been through so much since her first open heart surgery back in October, and even once we bring Evanna home, this journey will be far from over. We have no idea of a life expectancy with Evanna, and though things are stable with her heart right now, we are very aware that things can change in an instant. I put on a very "strong" and "brave" face everyday, but there are times (like today) that it's harder for me to hold it together and be that person. I often get the comment "you're so strong", but really I'm just trying my best to be a good mom.


Evanna is out of surgery and doing well. As to be expected (due to the heparin), it was a little hard to control the bleeding, but it wasn't anything they couldn't handle. The next week is going to be really rough has they try their best to keep her sedated and as still as possible. Evanna has such a HIGH drug tolerance, and she shocked the OR team with how much it took to sedate her. They joked she could probably "out drink them all", and were amazed with her fighting spirit.
Thank you so much for all the kind and beautiful words of encouragement this afternoon. I've been warned that this is going to be a rough week, but once they do the first major trach change in a weeks time, everything will go so much smoother. Prayers for a good week ahead are much appreciated. We really need this recovery to go well and for them to get her heparin levels back on track again. Though they normally don't put children under 12 months old on warfarin, they're making an exception with Evanna in hopes that it will increase her level and help stabilise everything. It tends to work better with mechanical valves anyways, and so that's what they're doing.

Evanna has a good nurse scheduled for tonight who will hopefully clean her up real nice, and I can take a close up tomorrow.

xo The Irvine Family

Reminder: Evanna's 1st birthday is coming up real soon. If you would like to send her a birthday card, please click HERE for further details - including our mailing address. Please take mailing time into consideration (especially if you're mailing from outside of Canada), and feel free to JOIN this event, then SHARE and INVITE your friends and family to participate too!

Monday, March 9, 2015

Tracheostomy Decision

If you've read anything that I have posted over the last few days, you will notice that I've eluded to the fact that Evanna will be having another surgery this week (her 6th surgery to be exact), as Nick and I have finally decided to proceed with a tracheostomy. This was not an easy decision for us, and it came after months of tears (on my part), heartache and exhaustion. The word "tracheostomy" was originally brought up to us back in November when Evanna failed an extubation for the third time, however it was not something Nick and I were interested in at all. Since then, the medical team here at the Stollery hospital has done everything they could to help Evanna extubate successfully off of the ventilator without resorting to a tracheostomy. Unfortunately, we have still been unsuccessful.

Though Evanna's airway is looking so much better than it did month ago and she is close to extubating, Evanna has been on a ventilator for over 5 months, which has deteriorated her muscles and made her incredibly weak.  Dr. Eksteen (Evanna's ENT) believes she'll be decannulated (the process of taking the trach out) early, so that's a positive in my books. Evanna's tracheomalacia has cleared up - which is a miracle in itself, as it can generally take years for kids to grow out of it, and her trachea is wide open (thanks to the pexy Dr. Rebeyka did during her last open heart surgery). We believe her muscles and lungs are just very weak and need some time to build up strength and work on their own again. A trach will allow Evanna to start moving, developing and growing, and it will allow us to get on with our lives and take Evanna home. So why were we so resistant in the beginning? A trach is a BIG deal. There is a LOT involved with a trach, and it will impact our life in a major way. Evanna will have to be monitored 24/7, which means homecare will be involved and a nurse will be in our home every night while Evanna has a trach. Nick and I will have to be trained on how to do a trach changes, as well as learn how to care for it, clean it and suction Evanna ourselves. I know it won't take us too long to get a hang of, and I'm certain we'll be pros in no time!
There are some downsides to a trach, and many reasons as to why Nick and I were so resistant to it in the beginning. Evanna will be at greater risk for infection - so please excuse our need for you to wash and sanitize your hands if you come into contact with her and into our home. Also, setting up homecare can take awhile, so just because Evanna gets a trach, won't necessarily mean we'll be home anytime soon. However, because we DO live in a large city, it shouldn't take too long to arrange and get setup. I was initially thinking of doing our homecare privately (we would be allocated the money and then hire our own staff), but because we're sure Evanna won't need a trach for too long, we may just have Alberta Health Services take care of it.

Anyways, we are incredibly nervous about this next step, but at the same time, we have been given so much guidance while we made this decision, and we're confident that we're making the right choice for Evanna. I have meet many trach moms along this journey that have made this decision a lot less scary. My hope is that Evanna will come off the vent fairly quickly and wean to just the trach in a timely manner. Then I hope that by early next year, Evanna will be able to have the trach taken out and be officially trach free. No exact timeline can be given, and it's purely up to Evanna's body and how fast she can build up strength again, but I'm still hopeful nonetheless.

Evanna goes in for surgery at 3pm TOMORROW, and we have already prepared ourselves for a somewhat rough recovery. Evanna needs to remain relatively still the first few days after the initial procedure, which means she'll be heavily sedated and maybe even paralyzed at times. Evanna has an already incredibly high drug tolerance level, so it'll be interesting to see how well the doctors are able to maintain her sedation. A few days after surgery, they'll do the first major trach change, and hopefully Evanna will just fly from there. It'll be so nice to see her full face again (well, she'll still have an NJ for feeding), and hopefully we can take steps to busting out of here! I'm definitely looking forward to just coming in and picking Evanna up without the help of nurses and RTs, and I can't wait to work on her strength and endurance and get back to where we were when we first brought Evanna into the hospital. We have lost SO much time in regards to her development, and hopefully with the help of therapy, we will get back on track in a timely manner and be somewhat of a "normal" family again in the comfort of our own home.

I would also like to take this opportunity to talk about a special event that I have created for Evanna and her 1st birthday. Due to the situation and our circumstances, we will most likely be spending Evanna's 1st birthday in hospital, and I want to make it as special as I possibly can. I have already received requests from people wanting to send gifts to Evanna, but what I would really appreciate, is if we could shower Evanna with birthday cards from all over. She will be turning ONE on April 29, and I want to take this opportunity to show Evanna how truly loved she really is and show her how many people care for her. We've had thousands of people follow our little journey (as showcased in my daily readership and Instagram followers), and I think this would be a great opportunity for people to get involved and be apart of this special and amazing little girl's unique birthday. Please click HERE to join the public Facebook event that I have created and send Evanna a birthday card! I would also appreciate if you could SHARE this event and INVITE your friends and family to send Evanna a birthday card too! All the information on where to send the birthday card is located within the Facebook Event description, and I would be more than happy to answer any questions.

Thank you so much for continuing to follow along and keeping Evanna in your prayers. Tomorrow is such a big and scary day for us, but we hope it will be another step forward to getting to take Evanna HOME!

xo The Irvine Family

Saturday, March 7, 2015

Instagram Q&A

Earlier today I posted this picture and wrote: "|| Day 153 || On the days Nick is in Edmonton, I tend to take a little bit of a backseat in paying attention to Evanna and give them some space and time to bond. It allows me to take a mental break to catch up on blogging, do some errands, take a little "me time" and regroup for the next time he leaves.
I have some time to kill, and so I thought I would give an opportunity to answer any questions you may have. I'm pretty much an open book, so ask away, and I'll do my best answer within a timely manner”.

Thought I would share some of the questions I got, and my responses.

Q: I just found your blog and I am praying for your family. I am wondering how you picked her name? It’s very pretty and unique.
A: 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)

Q: Do you think you guys will have another child? Or is it even on your radar right now?
A: Haha, I was asked this same question a few weeks ago. Nick and I DEFINITELY want more children. Before Evanna, I only wanted like 3 kids, and now I want like 5!! We have really loved being parents, and even on the really bad days we have with Evanna, Nick and I still talk about having more. Yes, our introduction into parenthood has been less than ideal, but we still love her and hope to give her siblings (and lots of them). Evanna has slightly mucked up our timeline, but once we're home, we will definitely be talking about when we want to expand our family continue on with our lives. Nick and I have been tested for 22q, and we're both negative. Yes it can happen again, but we have the same chances as anyone else to have another heart and 22q baby (our chances of having another heart baby is about 2% higher, but that’s it). Of course I'm worried it will happen again, and due to my very emotional pregnancy, I'm worried and slightly hesitant for when we try again. I just hope our next pregnancy will be much less dramatic and a bit more "normal".

Q: When did Evanna become sick? How old was she? From my understanding it was cardiovascular problems--is that correct? Also, I know it might not necessarily be consolation by any means but I wanted to let you know that I pray for her nearly every night; I can't wait until she's able to go home (I have faith that it's not a matter or if but when) with you and your husband.
A: We knew about Evanna's congenital heart defect before she was even born. During our routine detailed ultrasound they saw that she was missing a pulmonary artery, and so surgery plans were made when we found out. When she was born they confirmed that her heart was even MORE complicated than initially thought, and they actually couldn't even do surgery right away. Thankfully Evanna was relatively stable, so they sent us home, and once she was big enough, they scheduled surgery in October. However, what was suppose to be about 3 weeks in hospital, has now turned into over 5 months. She developed Tracheomalacia ("weak trachea") after the surgery, and so her respiratory issues have definitely complicated things, and the reason why she had troubles extubating and is still intubated. We just found out that her Tracheomalacia has cleared up, however because a machine has been breathing for her for the past 5 months, her lungs and muscles are incredibly weak. Due to this, we are proceeding with a tracheostomy for a short period of time, so Evanna can begin to start breathing on her own, get stronger and GO HOME!

Q: Do you guys ever have new people coming to visit and meet Evanna?  I keep you guys in my prayers and thoughts.
A: While in Edmonton, it's been a little bit harder because all of our close friends and family live in Calgary. I have a few friends who live here in Edmonton who have come and visited. I've also had friends who have made the trip up to Edmonton to come see us, as well as our family when they have time. The PCICU here at the Stollery doesn't necessarily have a lot of room, so we have definitely limited friends and family coming up too often, because then it takes away our time with Evanna. When we're in Calgary, we have a private room, so due to both location and room, it's definitely easier and more feasible for friends and family to come visit when Evanna is at the children's hospital in Calgary. In saying all this, I don't feel too lonely up here in Edmonton. I have developed relationships with people and staff at the Ronald McDonald House and amazing friendships with some of the nurses here at the Stollery PCICU. They have literally become family and I almost feel at home when Evanna is in the Stollery PCICU

Q: I've been a mom going through open heart surgery with my little girl we will be going for a second surgery sooner than later on a valve do you have any tips to get through the PCICU for the second time and how have you been able to cope with your stay in there? Also the time being you guys were home did you have and of the 22q show through at all? Praying for your little family!
A: Take advantage of the one-to-one nursing care! Go home, and catch up on the sleep while you can. You couldn't ask for better babysitters when it comes to the nurses and doctors on that unit and know she'll be in the best hands possible. Heck, once you know surgery is a success and she's settled in on the PCICU - go out for a nice dinner with your hubby to celebrate and take a moment to breath and relax. Don't feel guilty about it either. There is so much stress involved with open heart surgeries, and it can take its toll on your marriage too. Your child deserves loving parents who are refreshed, alert and in synch with each other. Every time Nick comes back to Edmonton, we usually take our time getting to the hospital the first morning he's back, as we sleep in, hang out, go for breakfast, etc. Our marriage comes first! The best thing Evanna needs is two parents who love each other and are at their best to help make decisions and care for her.
I constantly get confused for a staff member both at the hospital and at the Ronald McDonald House. That's because I take those few extra moments in the morning to do my hair, wear nice clothes, and make myself feel good. I still go and get my lashes done every two weeks and dabble on a little makeup in the morning (social workers are constantly telling and reminding me of “self care!”.
As for the 22q thing, Evanna was only 5 months old when she had her surgery. Other than her heart, her geneticist thought everything else was just fine before surgery. Obviously, with Evanna being in the ICU and intubated is going to severely delay her, so only time with tell.... It’s going to take a lot of PT, OT, etc after Evanna is out of the hospital to help catch her up, and we know it isn’t going to happen overnight, and it’s going to take a lot of time, patience and practise. In regards to skills, Evanna is basically a newborn all over again, as has lost 10 months of learning and developing. It’s definitely going to be really hard to wrap our heads around that, and hopefully I can refrain from comparing Evanna to other babies her age and just let things happen as they may.

Q: I'm curious as to what her personally is like!?
A: Thanks for asking! Evanna definitely has a personality, and despite being slightly sedated and intubated, it still shines through.
First of all, Evanna has made it known that she must always have her soother, music (thanks Shawna for the musical pooh bear that plays nonstop), and never cover her feet. Evanna doesn't really like blankets and actually likes to be kept on the cooler side. If we do put a blanket on her, it must NEVER cover her feet. How do we know? Well girlfriend kicks her legs up in disgust if we ever cover her feet and she keeps kicking them until the blanket falls off.
Evanna really loves attention. She is so much more content and happy if someone is stroking her head or talking to her, and doesn't like to be bored (books and phone apps help with this).
I'm really looking forward to when Evanna is extubated and not sedated anymore so we can see even more of Evanna's personality. She's a red head, so o feel like we're in big trouble!

Q: Is there a way we could send Evanna and you things to get in the mail? (Like a cute headband, etc)
A: Yup, just send me a DM and I'll share our home address. My husband is back and forth between Calgary and Edmonton all the time, so he brings me my mail whenever he comes up

Q: How do you guys keep it together? Do you ever pity Evanna with what she’s been through?
A: It's a okay question to ask and I'm actually glad to answer, because I have a very good answer! How do I keep it together? Well, just read my earlier response about going for dinner and taking time for myself. To that I'll add blogging. It has been a real good outlet and a way to document everything. Also, talking with other heart or 22q moms who've gone through similar circumstances and situations has help tremendously. I seriously can't thank @mathewsbambina @nataliasue @coachash and @kailabiagini enough for their beautiful words, kindness and support through all of this. These women (plus many others I haven't mentioned) have been so helpful and great reminders that we'll get through this and Evanna will eventually come home. Do I pity Evanna? Of course I feel bad for her, but a few people have told me some amazing advice and gave me so much comfort in regards to Evanna's situation. First @nataliasue has reminded me that angels are always with, surrounding and comforting Evanna. I believe babies are still somewhat connected to the "other side" and never feel alone. Secondly, one of my favourite nurses Jaymie told me that as a baby she spent the first year of her life in the PICU, and does she remember it? NOPE!! She said that this is honestly harder on the parents then the child, so don't worry about Evanna, and as long as she has loving parents, she'll be just fine.

Q: My daughters open heart surgery is in 11 days do you have any tips of what I should pack for me I have my basics but is there anything you've found to be nice to have ? And a way to make those darn hospital pull out chairs more comfortable to sleep on?
A: While Evanna is in the PCICU, I don't sleep at the hospital. The Stollery PCICU is currently a squishy open unit (a new closed unit is in the works), so there's not even an option for me to sleep there. Even when Evanna is down in the Calgary PICU, and there is technically a bed for me to sleep in, I still go back home to get a good night sleep. While Evanna is a baby, it's much easier for me to leave her at night in the care of the PCICU. We'll see what happens when she has another surgery as a toddler....
For things that I have been definitely glad to pack is: my own pillow and duvet. No offence to the RMH, but not a fan of their blankets and pillows lol. Finally, like I mentioned in earlier answers, comfy but nice clothes. I feel my best when I'm dressed nicely walking into the PCICU. I feel like I'm taken more seriously as a parent, and I feel great when I'm dressed cute and put-together.
Also bring things to do. Your child sleeps a lot while recovering (sleep in the best medicine!), so make sure you have things to entertain yourself. Books, phone, tablet, extra phone charger, etc.

Q: Do you know the reasons behind why she would be allowed home on a trach ventilator but not a normal ventilator that she is on at the moment?
A: Being intubated (via ET tube) is not a secure airway, and RT's are always on hand to "retape" her tube and check it's positioning. If the ET tube ever comes out accidentally, Evanna has to be quickly sedated, paralyzed and reintubated by a physician. A tracheostomy is a secure airway, in which Nick and I will be trained to keep it clean and suctioned properly.

Q: I was going to ask if you ever read books? I would love some suggestions and I can offer some as well! Also, I have been wanting to ask if the doctors feel there is something wrong with Evanna's valve or if it was just a matter of regulating her heparin levels?
A: I actually don't get too much time to read books (Nick does though! But I don't think you would like his suggestions lol). Between keeping Evanna entertained and comforted and then blogging, updating and answering emails and comments - I'm actually kept very busy. FYI - about 95% of my blogging is done through an app on my phone. I do have my laptop here in Edmonton with me, but it's kept at the Ronald McDonald House, and I basically blog from Evanna's bedside.
As for the valve - purely heparin related. For some reason it's taking A LOT of heparin to keep her levels within therapeutic range and it's a tad puzzlingly.

Q: I wore sweat pants and hoodies to ICU. I had found out my son has hlhs a day before he was air lifted to Edmonton and I'd just gave birth. It's all I fit and hadn't slept in five days :(
A: lol - Hey, I didn't say I never wore sweatpants/leggings! First few weeks after Evanna was born, it was all I could wear! However, with this prolonged journey, what has kept me somewhat sane and together has been wearing "normal" clothes and running a straightener through my hair. As I'm sure you know, the social workers are big into "self care!", so that's what I've been doing. Please believe me when I say I've had my moments of unwashed hair, no makeup and clothes off of the bedroom floor ;)

Q: Love the Q&A. Praying always for you guys and sweet baby Evanna. Everyone asked the general questions, mines a bit superficial… where do you shop? I positively love your style, you look beautifully put together!
A: My favourite stores are Aritzia (I think it's a Canadian retailer only...), H&M, Forever 21, Anthropologie, Joe Fresh, American Eagle for jeans, Steve Madden for shoes & @poppyanddot

Have a question? All you have to do is just ask.
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