Thursday, December 18, 2014

Plan J?

Floral headwrap from Mint and Arrows

So we finally have a normal milestone to celebrate - it looks like Evanna is finally getting her first tooth!! With Evanna being confined to a bed, she's not able to grow and develop like a normal baby, so these small and little milestones are a big deal for me. She is still growing and gaining weight little by little (a huge accomplishment in itself considering the circumstances), but I just can't wait to bring her home and watch her roll over, learn to crawl and even start standing up!

Anyways, we've gone through so many "plans", that I'm starting to loose track and forget what the original plan was (oh yeah, have open heart surgery and be home within 2 weeks...). So late Monday night, the ENT specialist finally came over to talk to me and tell me his opinion on Evanna. He felt that an aortapexy would not help her and wouldn't relieve any additional pressure off of her trachea. This basically means that Cardiology and ENT are both now in agreement that we should extubate Evanna before we do any more procedures. This time they've agreed to go much slower in decreasing her ventilator support and also wait until the full course of antibiotics is run through (14 days) for the pneumonia.
I'm so paranoid about Evanna failing extubation, that I've piped in when I think they're going to fast on the ventilator decrease. She's been intubated for soo long that her trachea and lungs are so week from the support she's been given, and I just want them to give her time to build up strength again. 

Nick came back to Edmonton on Tuesday, so basically we've been hanging out and enjoying our "boring" days here at the Stollery. Monday and Tuesday were definitely Evanna's best days of being awake and happy (smiles!!), but she's definitely been a little bit more sleepy and grouchy the past 48 hrs. I don't know if it's because they keep bugging her or if her sedation needs to be decreased. I will definitely be keeping my eye on everything and may even bring it up at rounds tomorrow morning.

Dr. Rebeyka also came by yesterday and said if Evanna fails extubation again, he has one more trick up his sleeve before we proceed with the trach. Instead of going in and pulling everything forward (aortapexy), that maybe going in and pulling everything from behind (posteriorly) might benefit Evanna. He still wants to go and take a look at her last bronchoscopy video, but he thinks that might help in getting her successfully extubated. Basically we just have to take it one step at a time, and slow and steady may win this race.

For those asking about the blanket (I definitely found it a little funny that everyone was so concerned about this lol), I picked it up from the dry cleaners yesterday and for the most part it looks good as new. There is still ONE blood stain that is wanting to be stubborn, but it's not extremely noticeable, and maybe once this is all behind us, I will order a second blanket to keep for special occasions and let Evanna go to town and get this one as dirty as she wants. It's definitely one of my favourite blankets of Evanna's because I ordered it while I was still pregnant with her, and it was a little on the pricy side. It's a custom blanket that says "Evanna" all over it, and it's from Jennifer Ann Style (I've had many people asking where it's from, so here is the link).

Also, I need to bring up how blown away I am with the amount of support our little family has received over the past few months. My Instagram following has more than doubled over the past few months, and the amount of comments and messages we get is outstanding. Please know that I read EACH and every one of them, and I truly cherish the kind and gracious words that are written. I try my best to respond when I can, but I've had to leave my responses to when people ask specific questions, as there are only so many hours in a day. 

Yesterday I won a "Cash Giveaway" Instagram contest from Convey The Moment, and due to her large following, I know she had thousands of people enter. We were eating supper at the Ronald McDonald House when my phone started to lite up with tons of notifications, and when I went to see what all the fuss was about, I saw that I had won. I literally started shaking with excitement and couldn't believe my eyes. Not only that, but tons of comments began to fill mine and Eleni's (the author of Convey the Moment) feed with happiness and joy that I had won. Everyone was so kind and gracious about me winning with prayers and thoughts for Evanna and wishes for a Merry Christmas for our little family.

In all, it's been a very good week, and I really hope this is the start to some much needed luck and positivity we so greatly need!

xo The Irvine Family

PS. I was giddy with excitment when we recieved a special package earlier this week from one of our favourite etsy shops Mint and Arrows containing 3 beautiful headwraps. Can't wait to show you the Christmas one next week!


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  2. Your daughters beautiful photo came up in my Instagram feed and I started following your story. I wish I was as brave as you. I still can't look at my daughter open heart surgery pictures with out being sick to my stomach and reliving that time. Your daughter is so beautiful and the photos you take are amazing. I love your positive attitude. You still dress her up in such cute headbands and you still photograph her and its makes me feel like you're celebrating her life no matter what trails are thrown her way. I hope everyday she gets better and better and your home soon.

  3. I agree with PB and JS you take the most beautiful pictures!