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.
PS. If you ask your question here in the blog comments, be sure to check back for the answer!