Saturday, January 31, 2015

A Very Special Doll

Back in December, I had posted about a very bad day that I had had at the hospital on Facebook and Instagram. Evanna was going through withdrawals, she wasn't very happy, and a nurse had gotten blood on one of my favourite blankets that I had bought when I was still pregnant. Later that afternoon, I received a sweet message from Jenny Bracken, and she wanted to send Evanna a very special present.

Now Evanna has gotten quite a few amazing and beautiful gifts (and we appreciate each and every one of them - our hearts are exploding with gratitude during this tough time), but this one is just too good not to share. It's a handmade doll sewn by Jenny herself. She used fabric and string to match Evanna's hair colour and eyes perfectly, but it's the other personal touches that make this doll extra special. Right off the bat, you notice that the doll has a big bow headband placed on top! Evanna has kind of become known for her headbands, so it was only fitting that the doll would have one too. Then Jenny added a "scar" on the doll's chest to sybolise Evanna's open heart surgery scar. On the back of the doll, Jenny stitched in Evanna's OHS surgery date, as well as her diagnosis (acronyms only! lol - there would be no room to spell out her entire diagnosis). To finish it off, she stitched in Evanna's name on the doll's left leg and dressed her in a beautiful floral dress.

I can't relay enough at how beautiful and special this doll is (the nurses and intentivists think it's just the coolest thing ever). Jenny truly does some amazing work, and the workmanship and detail that goes into each doll is truly outstanding. She makes all kinds of dolls (not just heart ones - and she makes boy ones too!), so please, if you have a moment, check out her other work here or here. She is extremely skilled at making custom dolls, and has a talent for making each one unique and special, matching it's recipient perfectly!

Wednesday, January 28, 2015

Another Extubation?

So this will be a much shorter update, as not too much has happened between my last update and now. 
This past weekend was kind of slow, and so on that same token - it was also hard on me. I absolutely hate the days that nothing happens, and feel like we're wasting unnecessary days in the hospital. There was a reason as to why they waited until Monday for a new bronchoscopy - so though there was a legitimate reason for the quiet weekend, it still sucked.

They put Evanna back on Milrinone (a heart drug) on Friday and increased the dose over the weekend, because they wanted to see if they would have different bronchoscopy results with lower blood pressure running through her conduit and make a difference on the compression they saw. On Monday around 4:30pm, Dr. Eksteen came up ready to do the bronchoscopy, but unfortunately it was a little busy in the PCICU, so it was a little chaotic with intentivists and Dr. Rebeyka jumping back and forth between another patient and Evanna during the bronchoscopy. During the procedure, Dr. Eksteen noted that the "dynamic compression" was significantly less than it was on Thursday, and so a theory that lower blood pressure would help Evanna extubate was discussed. While everyone started to talk 6th extubation, I was starting to freak out on the inside because the last extubation took such a huge toll on me, and the last thing I want to do is waste anymore time on a silly theory. It was late in the evening, so real discussions of a plan were kind of done "half-assed" (I wish there was a more appropriate word to use, but it's the best way to describe it), and Nick and I weren't necessarily asked what we thought we should do.

Yesterday, we came in and began discussions of what we should do moving forward. We have a few days to figure it out, as Evanna has come down with a lung infection, so that will take a week or two for her to get over before we can proceed with anything. I am extremely hesitant to try another extubation, especially when the only difference is a simple change in blood pressure, and I am sceptical that it will really make a difference. My biggest fear is going through another extubation and wasting even more time in the hospital. So Dr. Anand asked that Nick and I discuss what WE wanted to do, and what we're comfortable with, and to let them know. I was really against trying another extubation, but Nick pointed out that why not give this "noninvasive" approach a chance before resorting to surgery. Evanna has been playing by her own rules, and surprising us when we don't think something is going to work, and proving us wrong when we do think something will work. I agreed to a 6th extubation, however, only as long as we set limitations. If we aren't able to wean Evanna within 3-4 days off of BiPAP onto high flow, then we will consider it a failed extubation, and we won't push Evanna like we did the last time - she's either going to extubate or not, and I don't want to do another 8 days on BiPAP, only to end back up at square one again. Both Nick and the intentivists were in agreement to my concerns and felt that the limitations were extremely fair.

So that's the plan - get Evanna over this lung infection, work on lowering her blood pressure and extubate her again. I am a tad sceptical that it will work, but of course I would love nothing more than for Evanna to prove me wrong. If Evanna fails this extubation, we will ask Dr. Rebeyka about the RV/PA conduit pexy (or valve placement) he was thinking of doing, and unless he REALLY thinks it will make a difference, we will move forward with a transfer back to Calgary and proceed with a tracheostomy.

It has definitely been a few hard days and weeks for myself, and I know lots of people have felt my stress and frustration. It's a rollercoaster and like Dr. Cave (our primary intentivist) pointed out, the constant change in plans isn't really fair on Nick and I, and they completely sympathise with us, and only want what's best for our family. 
I've also come to realize that our prolonged hospital stay isn't what's bothering me, but it's that Evanna is STILL intubated and in the ICU. I in no way want to play down what other people have gone through - but though there are many people who also go through prolonged hospital stays, it's so much different when your child is in the PCICU and INTUBATED. I'm not able to sit Evanna up, hold and play with her. She has to remain flat on her back, and I'm growing distraught at how much time has passed and how not only is Evanna not developing, but has also lost all the skills she had going into surgery (rolling over, etc.). I know that she will bounce back, and we will be given resources to aid in helping Evanna catch up, but it's still something that weighs on me. At the bachelorette I attended this past weekend, a girl who was familiar with our story asked how Evanna was doing, and I responded that things were going okay (really - how am I suppose to answer that question??), and then asked how old Evanna was. I stated that she was almost 9 months old, and she responded by saying "Oh, my niece is 10 months old, and I just LOVE watching her grow and develop - isn't it amazing?" It took all my strength to not retaliate and punch her in the face. I was honestly shocked that she would say that to me. There are times I want to write a book on "things not to say to a mother with a child in the ICU". It honestly blows me away at some of the comments I get from time to time. I know most people just don't think about what they're saying and I'm sure I'm guilty of saying inappropriate things in the past, but still! lol

Anyways - Evanna has been having a good morning, and I feel like the antibiotics have finally kicked in. Her lungs are finally starting to clear up and sound clear, and we've been able to come back down on her PEEP (they had to go higher on the PEEP, as she required a bit more support). Later I'm going to ask when they're aiming to extubate again, and I'm going to better prepare myself mentally for this extubation. I realize that I was sort of in a funk over the past few days, especially when we didn't really have a plan (anyone who knows me, knows that I like to plan), but I feel much better, especially after coming to a decision yesterday that everyone has agreed with.

Thanks for your continued support.

xo The Irvine Family

This lovely and stunning gold leather and floral crown that Evanna is wearing today was made especially for her by Azlyn from Genuinely Made Shop on Etsy. She custom made it to fit Evanna, and I just love how unique and beautiful it is. Make sure to check out her shop to see and admire the rest of he work (her leather bows are equally beautiful)!

Saturday, January 24, 2015

PCICU Day 106 - 111

So Evanna was reintubated on Wednesday. It was definitely a hard pill to swallow (and lots of tears were involved), but it needed to be done. She fought SO HARD for SO LONG, but it just wasn't enough. We originally thought the next step would be a transfer back to Calgary to proceed with a tracheostomy - as this is the 5th failed extubation, however, a bronchoscopy done on Thursday showed a "dynamic compression" on her trachea, so plans of a tracheostomy have been put on hold until further investigation can be done on Monday to see if ANOTHER surgery should be done.
Here's how the last few days have played out:

Nick left Monday morning, and I headed to the hospital. It was a terrible day, and Evanna was completely miserable. They put her back on the full-face BiPAP mask in hopes that it would help, but it didn't make that much of a difference. I was slowly starting to realize that this extubation wasn't being the success that we needed, and Evanna was telling us that. We continued to try our best to make her comfortable and happy and push on, but I knew deep down that Evanna was growing tired and weak. 
On Tuesday, things continued to get worse, and I was in tears with the state that Evanna was in. She was looking at me with the saddest eyes that I have ever seen, and finally we started to talk reintubation. Dr. Anand said that during Wednesday's intentivist meeting, they would discuss as a team the best step moving forward, and make sure that everyone was on the same page in regards to a decision. Well I stated that if the decision was going to intubate, why wait one more day and put Evanna through one more night of this. Dr. Ryerson was there for the night, and they had already called Dr. Cave (our primary intentivist) to get his opinion. I already knew what Dr. Duff's opinion would be from previous conversations, so I said that if Dr. Aditia was on board, then I would prefer that we did the intubation done that night vs making Evanna wait one more day. Well Dr. Aditia happen to be "working" that day, as he was "Nurse for the Day" - something the unit does every year to raise money for their social fund, and this year Dr. Aditia "won", which meant that he had to be a nurse for the day and do EVERYTHING that a nurse had to do. So they took him aside and asked his opinion on if they should reintubate Evanna. They went and studied her xrays, and Dr. Aditia wondered if maybe Evanna was being over ventilated and said that before they actually intubate her, just try her on high flow for a few minutes, as there was no harm in doing so. So they got everything ready to intubate her, as well as the high flow supplies. They switched out the mask for the nasal cannulas, and watched to see what Evanna would do. Surprisingly Evanna did amazing, and by the time I left for the night, Evanna was still on high flow! However at 2:30am, I got a phone call telling me that her CO2 was climbing and they needed to put Evanna back on the mask and try again tomorrow.

On Wednesday morning I came in, and we decided to try Evanna on high flow again, because of the "success" of Tuesday night. Evanna was hating the mask, and I was hoping that she would relax on high flow. Unfortunately, Evanna lasted only about an hour on high flow before her CO2 levels started to rise again and we needed to put her on BiPAP again. Her CO2 initially came down with the switch to BiPAP, but again her CO2 levels started to rise again, and when they reached 95, we had no choice but to finally come to the conclusion that she needed to be reintubated for her own safety. It was so heartbreaking to know that Evanna failed yet another extubation, and we now know that a tracheostomy is the next step. As much as Nick and I were originally resistant to the idea down in Calgary, we felt that we tried our best, and Edmonton did everything they could to avoid a trach, but we finally came to the realization that this was the only route in order for us to take her home. They kept Evanna pretty sedated for the rest of the day, as she needed to get some rest and sleep.

On Thursday we started to discuss plans for a transfer back down to Calgary to proceed with a tracheostomy. They called the Alberta Children's Hospital PICU, and they stated that they already had a bed available, and could take her that day. However, the Stollery wanted to make sure we were sending Evanna down in tip top shape to hopefully avoid another transfer back up to Edmonton if things were to go down hill (basically dot their i's, cross their t's, and tie up loose ends before we transferred Evanna). We asked that if it were okay, to arrange for a Friday morning transfer. An ECHO and bedside flex bronchoscopy were ordered and I left to attend the Corus Radiothon for the Stollery Foundation. When I came back the ECHO had already been done, and Dr. Eksteen had just arrived to begin the bronchoscopy. During the bronchoscopy, Dr. Eksteen saw a "dynamic compression", and plans for a transfer down to Calgary were immediately put on hold. Dr. Rebeyka was made aware of the bronchoscopy findings, and what this could possibly mean.

Yesterday (Friday), Dr. Rebeyka came by and talked to me about the plan for the next few days, and possibly the next step. He wants Evanna to have a second bronchoscopy on Monday to confirm what they saw, and if there is a compression, they will probably do another open heart surgery to either lift the conduit that they inserted during the first open heart surgery off of the trachea or insert a valve inside the conduit to make it more stiff and firm and not pulsate against the trachea causing it to collapse.

Basically Evanna WILL be having a 5th surgery, but what that entails (either the tracheostomy or another open heart surgery), won't be discussed until Monday when Evanna has another bronchoscopy. It has been a long few days, and this morning I'm finding myself a little drained of energy, and just overall exhausted both physically and emotionally. Tonight my parents are coming into town to be with Evanna while I attend part 2 of a Bachelorette party for my friend Bev who is getting married in February, for which I'm a bridesmaid. Like I stated in a Facebook and Instagram post, this is something that the doctors, nurses and social workers are extremely supportive of, and highly encourage me to go have fun and enjoy myself. They constantly talk about self care and being at my best here in the PCICU, in order to not run myself down and be in the best possible state for Evanna. I guess I just feel like I have to explain myself in fear of being judged for not being at the hospital. Truth of the matter is, I'm here at Evanna's bedside day in and day out. Though my life has been kind of put on pause for the past 3.5 months, the world has continued to still go on, and a break is warranted once in awhile.

Nick will be back in Edmonton tomorrow, and most importantly will be here on Monday when we have discussions on what our next step should be. We're a little reluctant on another possible open heart surgery because it means we're going back in through Evanna's sternum, AND it may not produce the results we need in order to bring Evanna home, and she'll still need a tracheostomy anyways. However, if we proceed with a tracheostomy, she may need it for a lot longer if we don't deal with this dynamic compression to begin with. It's definitely not going to be an easy decision, and it's a little frustrating to feel like we're back at square one again.

Thanks for reading, and hopefully I won't go too long between the next update. Again - thank you so much for each and every Facebook and Instagram comment. I may not respond all the time, but PLEASE know each one is read and appreciated all the same. And of course, please continue to pray for Miss Evanna, and that she'll continue to be strong and brave.

xo The Irvine Family

PS. Thank you to @caracall on Instagram for sending a handful of sweet bows. The kindness of complete strangers continues to amaze me.

Sunday, January 18, 2015

PCICU Day 98 - 105

To say this has been a very stressful week, would be a huge understatement. So much is riding on this extubation, and it has definitely taken a toll on me. Ever since we've been back to Edmonton, I have never called in a night to check on Evanna, because I know she's just fine (plus I know they would call me if there were any concerns). However, ever since Evanna has been extubated, I've called at least twice every evening. My nerves are at an all time high, and I just want this part to be over with.
The big problem we were experiencing, is if something were to happen and Evanna gets extremely upset, they can't really sedate her too much, because that would mean she would stop breathing. So there's a fine line between keeping her comfortable and happy, and over sedating her to the point that she stops breathing, they have to reintubate her, and we're back to square one and proceeding with a tracheotomy. 
Anyways, I'm going to go over what has happened over the past week, so bear with me. I know I've already posted about her extubation on Facebook and Instagram, but this blog is a true journal of this journey, and I want to document everything fully, as I plan to print this sometime in the future.

So since my last post, we were able to decrease her PEEP to 6 on the ventilator by Monday, which meant that a Tuesday extubation was a GO! Dr. Aditia was extremely disappointed that he wasn't going to be the one to do it because he was off to China first thing in the morning, meaning that Dr. Ryerson got the honour of being the one to extubate Evanna (the intentivists are incredibly competitive with each other - it's actually quite funny). Her extubation happened to fall on Day 100 of us being in the ICU, and so I'm hoping that means something. Like I expected, the extubation went smoothly, and I even got to take a picture of her before they put the BiPAP mask on her. It was a great day filled with so much hope and joy as we made this big step. Once things were settled down, I even got to hold her, and according to my calculations, it was the first time that I had held her in 44 days.

I came in on Wednesday, and Evanna had had a good night. The nurse asked if I wanted to put an outfit on her, but I told her that when we were transferred back up to Edmonton I hadn't bothered to bring any of Evanna's clothes this time because I didn't think there was a point. So I raced over to West Edmonton Mall and bought a few cute onesie’s from Carter's, and even found matching bows at H&M while quickly shopping for myself. I came back and got her dressed up, and decided to hold her again. That evening we tried her on nasal BiPAP, but she didn't do as well as they thought she would, so they switched her back to the full face mask. She also became really irritable that night, and so this is when my stress levels started to climb, as she wasn’t doing as well as I had hoped.

I came in on Thursday, and she was doing okay. Her evening was kind of rough, but she had settled out and was doing much better. They switched her ventilator settings to CPAP, but within a few hours her CO2 started to rise again, so they went back to BiPAP settings and left her there. Dr. Ryerson started to indicate that she was a little disappointed in the progress that Evanna was making, and unsure of how this extubation was going to go. She stated that she's not ready to give up on Evanna, but that I needed to know that a tracheotomy may still be on the table as an option for her. That evening, things just got worse. According to their calculations, they didn't decrease her medications when they extubated her, but I felt that Evanna was definitely experiencing withdrawals. Her heart rate went up to the 200s and stayed like that for hours, she was flailing around and nothing I was did would calm her down, her temperature was increased and she was tongue thrusting - all signs of withdrawal. It takes a lot for me to freak out (I've seen Evanna code, so I feel like I've practically seen it all), but I was truly going into panic mode. I called Nick multiple times to keep him in the loop, and I was so close to asking him to leave work and drive up to Edmonton as I felt she was about to fail this extubation. Dr. Duff was our intentivist for the night, and he too was worried that we were going to have to reintubate her again. He decided to "throw the kitchen sink at her" (his words lol), and do everything possible, just short of reintubating her, as he too didn't want Evanna to fail this extubation. We upped her Milrinone (it's a drug that helps the heart pump), drew cultures, started antibiotics, gave her fluid (a dry body can be really hard on the heart), and upped her sedation doses. Finally around 11pm, things started to settle down, so I finally left to get some sleep.
I called at 5am to check on her, and Dr. Duff answered the phone and said that he hasn't had to touch her and for me to go back to bed and get some sleep.

Things settled a little bit on Friday, but my nerves were at an all time high. Considering how things were going, I was terrified that Evanna was failing this extubation. She had an incredibly good day with her O2 in the 80s and her heart rate going as low as 140. They came back down on her Milrinone, as well as some of her sedation. However, come evening, Evanna started to act up a little bit (we're noticing a pattern here...), and was completely miserable. It wasn't as bad as the previous night, but she was still a little restless, and her heart rate went up again. They gave her some extra doses of hydromorphine, which seemed to help, and I was told they had to do that a few times throughout the night.

Evanna had a pretty good day yesterday, and I was so relieved to know that Nick was on his way up to Edmonton. I was still really stressed and emotional during rounds, so I was definitely in tears when Dr. Anand came by. I stated that while I know Evanna isn't the number one priority on the unit, and there are sicker kids than her here, that I need Evanna to be a priority for the next week, as I really want this extubation to be successful. Dr. Anand assured me that Evanna is a priority, and that he will definitely work with us to make sure she is given the best chance possible to succeed. I definitely felt a lot better after that, and I have since felt that my wishes are being met. We switched her to a nasal mask again, and though Evanna's CO2 levels initially rose, we waited it out and they came back down. I also noticed that her hemoglobin was low (I'm the first person to grab the blood gas results from the RT’s and read them myself to see how Evanna is doing), and so I asked Dr. Anand if we could think about doing a transfusion, as they always help boost her energy and keep her sats higher (this is why blood donation is so incredibly important!!). Dr. Anand agreed with me, and when I left to go pick Nick up, they started a blood transfusion (what a little vampire!).
After I picked Nick up, we grabbed a quick bite to eat, and came back to the hospital to see Evanna for a little bit. We didn't stay too long, as Nick had just gotten off work himself that morning, but we waited until her 8 o'clock blood gas to be done before we left (my life is currently revolving around blood gas time - a sign we've been in the PCICU for too long lol).

Today has been a relatively good day. They finally turned off her Milrinone, but that was it in regards to changes made for the day. She hasn't necessarily been on it because of heart failure lately, but it was a drug they started when we were back in Calgary (when she was experiencing heart failure), and because she ended up being on it for a long time, it's something they've also had to slowly wean. They left her ventilator settings alone, and if she has a good night, they will hopefully do a small decrease tomorrow. On a positive note, Nick got to hold Evanna today, and again, according to my calculations, it's been 64 days since he last held her. He was one happy dad!

That's basically the story of our lives - slow and steady. We're still not out of the woods in regards to the extubation, and I won't consider this a successful extubation until we're on high flow. However, she is still extubated (it's been longer than 4 days too), and still doing relatively well, so I’ll take it. I'm scared that she's going to fail and she'll end up getting a tracheotomy (not the worst thing in the world, but would still love to avoid one), and I really just want to fast forward this part. Evanna hates the mask, and this process has definitely been hard on me. I too hate the mask, and I really hate all the unknowns of whether Evanna is going to succeed or not and if we're doing this all for nothing.
Please continue to pray for our little girl, and that she will be comforted during this not so pleasant part, and that she will continue to get stronger every day and come off of the BiPAP and CPAP - and quickly too!

xo The Irvine Family

Saturday, January 10, 2015

PCICU Day 94, 95, 96 & 97

So Evanna has so kindly reminded us of who is in charge of the show, and that she will do things when she is good and ready. Evanna is still intubated, but the intentivists are confident that we'll get back to our PEEP of 6 and extubate early next week.

Before I proceed, I want to explain the definition of PEEP again. I'm pretty sure I briefly described what PEEP was a few posts back, but it doesn't hurt to go over it again, so everyone truly understands why we've been in this hospital for SO LONG! PEEP stands for "Positive end-expiratory pressure". Basically in laymen terms, it's the amount of pressure being blown into Evanna's airways to help keep her trachea (airway) and lungs open. Because Evanna has tracheomalacia ("weak trachea"), she needed a higher level of pressure to help keep everything open. They generally don't extubate until a PEEP level of 5 or 6, but they WILL try at PEEP of 8 to non-invasive support (so a big CPAP or BiPAP mask) that will still provide the pressure without having a big tube stuck down their throat (which is what we've done in the past). This has been our biggest battle with Evanna - weaning down her PEEP. Evanna has never handled the decrease, and her oxygen levels would drop, her lactate and CO2 levels would climb very high (which makes you very tired), and her "work of breathing" would increase and she would have to work incredibly hard just to breath. We think resectioning her subclavina off of the back of her trachea helped a lot, because according to Dr. Rebeyka, he was quite surprised how much pressure it was putting on her little airway.
This is why Evanna was facing the possibility of having a trach (and it's still on the table, as we're not out of the woods), and why we're so excited that Evanna has FINALLY been able to wean down to a PEEP of 6! In the past, every time we got down to a PEEP of 8, we would end up going back up to a PEEP of 10, 12, and even 14, and it was a never ending circle of constantly playing with her ventilator settings. Anyways, we finally got down to a PEEP of 6, even with a "crappy" diaphragm, and that's why they think she'll finally successfully extubate after this plication surgery that she had on Tuesday (which entailed them going in and "pinning" down her diaphragm).

So though Evanna was initially doing well after her plication surgery, things didn't go so well later that evening. They had to increase her ventilator settings (her PEEP was increased to a 10), and she basically confused the intentivists for a couple of days when she would wake up and fight the ventilator. They would raise her rate to 28 (meaning the ventilator would give her 28 breaths/minute), but Evanna would only take 8 breaths, meaning she would resist 20 breaths every minute. The RT's would joke that Evanna had abs of steal and were in disbelief at how hard she was fighting the ventilator. Because Evanna was fighting so hard, her CO2 levels would climb like crazy, and her O2 levels would drop. The only thing that would snap her out of it for a little bit would be to paralyse her so she would stop fighting the ventilator and let her body get the oxygen that it needed. While this was a quick solution, it wasn't something that the intentivists wanted to keep doing over and over again, because it really wasn't solving anything. Finally after a few shifts of Evanna doing her "episodes", Dr. Ryerson decided to recalculate her pain medications, and she figured out that Evanna really wasn't getting any additional pain medications since her surgery, and that she was basically on the same levels that she was going into surgery. Evanna is on such high levels of pain and sedation medications, but because she's been on them for so long, her tolerance is also really high. So Evanna was in pain, and she was holding her breath in response to that.  Thoracotomy surgeries are very painful, and this being a "redo" surgery, we were also dealing with scar tissue, so poor Evanna was in a lot of pain, and overall it has been a crappy few days of recovery (I won't name who, but please know that the intentivist that was in charge this week felt truly terrible once we realized the problem. Evanna is on such high doses of pain and sedation medications already, and so it was a honest mistake). Anyways, since we fixed the problem, Evanna has been doing wonderfully. She's been wide awake and content as can be. She's currently back down to a PEEP of 8, and we're hoping to get back down to a PEEP of 6 by Monday (we're going at Evanna's speed) and extubate a day or two after that.

Thanks for continuing to follow along and the continued prayers and support!

xo The Irvine Family

PS. This adorable bear was delivered to us here at the Stollery from our best friends Matt and Amanda a few weeks ago. Evanna is seriously one spoiled baby, but I'm beyond grateful how many people love our little girl.
The headband comes from Analise Cranney - an Instagram follower, and was made by Summer Sariah Bows. A few weeks ago, Analise sent me a message asking me if we needed anything (financially), and when I assured her that we were just fine, she still inquired if there was anything she could do. Well I jokingly said "send more headbands!" and that's absolutely what she did. She contacted 3 friends who make headbands and had some sent to us. Thanks Analise and Sariah for the cute bows!

Friday, January 9, 2015

Fun CHD Nail Fundraiser!!


So Evanna is still doing well and in case anyone was wondering, we're still working towards an extubation. We had a slower recovery then expected, and the last few days have been spent figuring out it was all due to pain. Basically the intentivists underestimated how high Evanna's drug tolerance has become, and it took them awhile to figure out that she just needed more drugs - poor baby. Anyways, I'll do a full update later this weekend, in the meantime I wanted to post about something else.

Congenital Heart Defect (CHD) Awareness Week is quickly coming up, and so I've become involved in a few projects to help spread the awareness, as this is the one time of year that has been dedicated to it (though I'm all about creating awareness 52 weeks a year!).
A week ago my sweet friend Alissa messaged me about an idea, and I was immediately on board! She is a woman of so many talents including photography, cake decorating (she seriously has some skillz!), design, and of course being an amazing mother. She also is a Jamberry consultant, and in honour of CHD Awareness has designed some beautiful nail wraps, and has decided to donate her entire commission (which is 30% of all sales) from this party to the Stollery Foundation in our name.

What is Jamberry? They are high quality, vinyl, heat and pressure sealed nail wraps that last for weeks, at the fraction of the cost of a salon visit! No harsh chemicals, chipped polish, or damage to your natural nail. There are over 350 adorable style options! One sheet includes enough wraps to do 2 full manicures, and 2 full pedicures, and still leave you 4 accent nails.

So Alissa and I invite you to join her private Facebook Jamberry Fundraiser (click here for the link) or click here for the direct link to shop without having to join the Facebook group, and indulge in some "guilt free" shopping! The party ends February 6, which should hopefully leave enough room for everyone to receive their CHD wraps in time.

xo The Irvine Family

Shopping Note: To buy the custom CHD wraps, you will need to buy a gift certificate and send Alissa the code. She will then purchase and have them sent to you. In order to facilitate this, please join the Facebook Jamberry Fundraiser page, so that Alissa can help you every step of the way. If you are not interested in the custom CHD wraps, then please feel free to shop from just the direct party link. Thanks you!!

Monday, January 5, 2015

Surgery Tomorrow

Headband from my heart mama friend Heather. It's from Love What's Missing
So yes Evanna will be having another surgery tomorrow. However, it's just a simple re-plication of her diaphragm, and compared to her other surgeries - this one is practically nothing in my books!

We've been really reluctant to publicly talk about what's been going on around here over the past 4-5 days in fear of jinxing ourselves, but the fact of the matter is that things have dramatically improved and Evanna has been doing very well. The prayers and fasting are working, and I'm amazed at the leaps and bounds that Evanna has made since last Wednesday. They finally found that her femoral line and ET tube were infected, so they started her on the appropriate antibiotics. Since then her heart rate and temperature have been much easier to maintain, which means we've been able to make lots of headway in regards to her ventilator support being decreased. Evanna is now on a PEEP of 6 (!!!) and has been at that level for a few days now. To try and put that in perspective of how big of a deal that is - since Evanna's original open heart surgery, we have never been able to get past a PEEP level of 8, and every time we do, we eventually end up going back to level of 10, and sometimes even 12 or 14. In all 4 of Evanna's past extubations, they extubated to noninvasive support on a PEEP of 8, and then she eventually fails.
So why the big change and progress? Well first, I am not underestimating the power of fasting and prayers. I know we've been doing these things from the start, but Heavenly Father does things in his own time, even when it doesn't make sense at the time. Secondly, I guess Evanna just needed more time to heal since her last surgery when Dr. Rebeyka resectioned her subclavian off of the back of her trachea (interesting fact: so I guess I really didn't pay attention to what resectioning her subclavian meant - but basically blood pressure can never be taken from Evanna's left arm now, because there is no major artery supplying blood to her left arm). Thirdly, it didn't help that Evanna was getting infection after infection, making things worse and her body having work harder - including her lungs and airway.

Anyways, though we're down to a PEEP of 6, they have noticed that her right diaphragm is still acting up. They did a fluoroscopy this morning and it showed that her right diaphragm was indeed paradoxical and needs to be replicated (basically her right diaphragm moves in the opposite direction and works against Evanna). I know it sucks that they're "redoing" a surgery, but I guess plications don't always last, and if you remember from her last plication, it's a fairly straight forward and easy procedure (they transferred Evanna within 24hrs after her last plication).
After they re-plicate her diaphragm, they'll give her a day or two to rest, and they hopefully extubate later this week. In saying that - it's a BIG week for Evanna! I've never been more hopeful that we may finally be heading in the right direction of taking Evanna home and putting this behind us.

xo The Irvine Family

PS. 6 !!!!!

Late Edit: I realized that I forgot to talk in detail about her bronchoscopy and CT/Angio from last week. So first she had a bedside bronchoscopy, and Dr. El-Hakim just did a simple bedside exam. After he examined Evanna he stated that while there is still some malacia in her trachea, he was actually quite pleased with how much better it looked. She isn't out of the woods, and still has a ways to go, but it was music to my ears. After that, they took her down for a CT/Angio to check for compression around the trachea. The scans came back, and everything actually looked good. They didn't see anything compressing directly on her trachea, and they were happy with everything they saw. This meant that an aortapexy was off the table, as there was no reason to go back in through her chest. This was a relief to hear from one standpoint, because this is a risky surgery, but that also meant that if she failed one more extubation, Evanna would need a tracheotomy. The CT also clearly showed her high diaphragm on the right, and that's why we have since investigated into the problem.
It was after the bronchoscopy and CT/Angio that Dr. Aditia turned her PEEP back down to 7, and since antibiotics had been started, her body handled the decrease beautifully!

Saturday, January 3, 2015

PCICU Day 87, 88, 89 & 90

So it's been an interesting week here in Edmonton at the Stollery Children's Hospital. Evanna's bronchoscopy and CT/Angiogram came back with decent results, but our surgeon has been away, so any decisions that need to be made have been kind of put on hold. I'm going to keep this update relatively short, but overall Evanna is actually quite stable. We discovered that her femoral line was infected, so she has been on antibiotics since Thursday. This has been a big help in keeping her heart rate and temperature down, making Evanna more comfortable and happy. We also got moved back over to the cardiac side of the PICU, as the medical side was filling up, and for once the cardiac side is quiet and almost empty - so because Evanna is a cardiac patient, she got moved back over.

I want to thank everyone on both Instagram and Facebook for the kind comments after my "vent" post. I know I shouldn't have let that comment get to me, but after our rough week last week, being accused of being a terrible parent threw me over the edge. Writing out my thoughts helped me and was a validation to myself that I'm not a bad mom and doing the best that I can for Evanna. Not that it was needed, but everyone's comments only confirmed what I already know.

I also need to tell you about a very special gift that Evanna recently received earlier this week. The special blanket that Evanna is using in the above photo was made by a girl named Angel, who lives in BC and has made it her life's mission to "Wrap Sick Kids in a Warm Hug". She's only 18 years old and owns a successful Non-For-Profit business called Hugginz by Angel that involves sewing blankets, giving them a big hug, and mails them around the world to sick kids in need of a "Warm Hug". I initially didn't request a blanket, because Evanna has lots and there are so many other kids in greater need, but Angel's mom insisted that Angel wanted to make Evanna one, so I put in a request. The great thing about that is she also made Sawyer (Evanna's 2nd cousin) one too, because Sawyer also had a big surgery on October 6th (the same day Evanna had her open heart surgery), and Angel so graciously tied the two blankets together by using the same fabric in parts of their blanket. Not only that, but she found some fabric from when she made Sami's blanket last year (Sawyer's first cousin and Evanna's second cousin), and incorporated it into their blankets as well! How neat is that?? If you have a minute - please visit Angel's Facebook page (click here) or website (click here), and show her some support!

xo The Irvine Family

Headband in this picture is from J and G Handmade. Jen has been a huge supporter of our little family and constantly writing comments of love and support! Thanks Jen!!

Thursday, January 1, 2015

2014 in Review

Well it's that time of year that I write my annual recap of the past 365 days for the Irvine Family. It was initially difficult for me to write this years post, but in hindsight, I am so glad that I did. In despite of everything we're currently going through, it has still been a good year. Our marriage is stronger then ever, we accomplished some major financial goals (other then a mortgage, we are completely debt free - including car and student loans, and increased our savings!), Nick got his Paramedic licence and got a permanent full time job with Calgary EMS, and we welcomed our beautiful little girl into the world. We've experienced so many things, lost a few relationships, gained so many new friends, and understand just how precious this life is. Though I'm ready to move past this current chapter, I'm trying my best to embrace this experience and learn from it. So here we go:

In January, Nick and I took the opportunity to go on a babymoon to Cancun, Mexico. With everything we had learned about our baby girl, we needed to get away to be alone as a couple, relax and digest what the rest of 2014 would be like for us. Besides the throwing up all the way there and all the way back (Nick isn't sure if we wants to fly with me anymore), it was a great trip.
A week after returning from Mexico, we headed to the mountains of Montana for a group ski trip (I promise, that at 6 months pregnant, I stayed far away from the ski hills). We stayed in the most beautiful cabin in the middle of nowhere and truly enjoyed the scenery and quietness that Montana had to offer.

February was a low key month as we geared up for a busy spring. At the beginning of March, Nick was offered a temporary full time position with Calgary EMS as a Paramedic, which was a HUGE blessing that came at the perfect time considering everything that was about to happen. Nick and I headed to Edmonton around mid March to meet with the cardiac medical team and celebrate our 2nd Anniversary a little early. It was a very busy couple of days with lots of information being thrown our way - it would make your head spin! We also celebrated my niece's 1st birthday and my best friend and sister threw me an amazing baby shower.

I finished my last few days of work at the beginning of April and relocated to Edmonton and moved into the Ronald McDonald House for the very first time. It was an extremely emotional time for me, as I was away from my close friends and family, as well as my husband who stayed back in Calgary to work as much as he could before the baby arrived. Finally, on April 28, I was induced, and Evanna was born on April 29 pink and crying (though an emergency c-section may have been involved....). It was a crazy couple of days proceeding, with finding out that Evanna's heart was even worse than we initially thought, having her flown back to the Calgary NICU as surgery was a no-go for the time being, and making sure she was healthy enough to be discharge home. After 10 days total in hospital, we were given the okay to take our sweet baby girl home.

May was a month of big adjustments as we got use to having a baby at home, and learning to be parents ourselves. Nick was offered a PERMANENT full time Paramedic position with Calgary EMS, and it was just nice to have a period of normalcy.
In June, we celebrated Nick's first Father's Day, and Evanna had her baby blessing on the same day. It was truly a special day, and probably one of my most favourite moments of 2014.

We finally made a trip back up to Edmonton for Evanna's very first Cardiac Cath in July and start making plans for her first open heart surgery. She handled it like a champ and we were home within 36 hrs. 
August and September was spent soaking up the rest of Summer, and begin to keep our outings short and limited, as we wanted to keep Evanna in the best possible health for her upcoming surgery. We spent lots of quality time with our closest friends and family and soaked in every moment.

The day we had been waiting for, for almost a year, had finally arrived. On October 6, we handed our baby girl into the arms of a nurse who walked her into the OR where multiple doctors and surgeons awaited. It was a long morning and afternoon, but Dr. Rebeyka came out saying that the surgery went well. It was a hard few weeks of recovery, as we watched Evanna deal with sedation and withdrawal issues, failed extubations and another devastating diagnosis of Tracheomalacia. We experienced every parents worst nightmare in the early hours of October 28, when Evanna's heart stopped and she coded. It took 20 minutes of CPR to bring her back, and it's a night that we'll never forget. What we had hoped to be a relatively straightforward surgery and recovery, was any but that, and we would soon learn that we were in this for the long haul. 
We finally had the opportunity to have Evanna transferred down to the Alberta Children's Hospital PICU in Calgary so we could be closer to home, but not much progress was made down there. Evanna failed another extubation and her heart went into failure. On December 2, we were transferred back up to the Stollery Hospital in Edmonton where she underwent her fourth rigid bronchoscopy and her second cardiac cath. On December 8th, Evanna had her third surgery performed by Dr. Rebeyka that took over 6.5 hours to complete, but because they know Evanna's history, she recovered a lot quicker. 
We spent Christmas with Evanna still in the PCICU, but made the most of the situation. Nick worked New Years Eve, and I made sure to give Evanna a midnight kiss with a phone call from daddy to follow.

Overall it's been a year of some of our highest highs, and lowest lows. We're hopeful for a brighter and healthier New Year full of joy, happiness, and love.

xo The Irvine Family

Music: It Is Well by Kristene DiMarco