Feisty Evie and the Drugs

Hi from the Cardiac ICU! Evie is doing ok--we are waiting on some of her puffiness to go down (i.e. Letting her pee it out).

Her blood pressure is a bit elevated too.

The funny thing is, Evie won't let the sedative meds hold her down. She has been moving around quite a bit. The nurses are calling her "feisty" and "rowdy." It's good to be feisty, but not when you might pull out the tubes that are helping you! She opens her eyes sometimes to look at me. She's not in pain though. I keep telling her I'm sorry she has a breathing tube. The nurses assure me she is ok. But they don't want her to be so awake that she's moving around.

They propped her up with Pink Dog and Ultimate Warrior Bear, so she is now nice and snuggly. (Shoutout to Doug for coming to tell me that I am allowed to take pictures!)

Now the team is discussing how to keep her sedated safely. This baby burns through the drugs like they're nothing! That's my strong girl! She looks really good. If she didn't have all those wires, she looks like she could just get up and look around. I also swear she got bigger overnight.

At lunch today, I met another mom and dad with a 9 month old girl here in the cardiac ICU. Little Ellie has Down Syndrome, just had heart surgery and has a g tube too! It was nice to meet a family who are walking a similar journey. There is a certain automatic kinship when you meet someone who understands any of those things, not to mention all 3 of those things!

It's looking like tomorrow she will be woken up and they will remove the breathing tube. Tonight we get to have one more night of good sleep at home and then we will be on active duty watching over her as she gets transferred to the step down unit. We would really like to see her blood pressure go down on its own.

Sleep well, little Evie!

Repost with a giveaway! From Straitjacket to Starfish: A Shark Tank win

Update: Hi all, I am doing my first giveaway! If you read my blog post the other day on the miraculous Zipadee Zip, then you know how this thing has changed our lives as parents. The makers of Zipadee Zip liked my review so much, that they offered to help me do a giveaway. All you have to do is 1) "Like" their Zipadee Zip Facebook page and 2) leave a comment about why you could use a free Zipadee Zip on this post! The contest begins Wednesday, May 27 at 12:00 AM and ends on Sunday, May 31 at 12:00 AM. Good luck! a Rafflecopter giveaway ------------------------------------------------------------ Original post: There was a point in time when I was just proud I could swaddle teeny tiny Evie with a hospital blanket. Then she came home and started busting out of the blankets, and woke herself up all the time. Her arms flailed and her legs kicked while she was sleeping, which of course woke her up. But then she got bigger and craftier, and I needed to fin

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Starting this blog was a big deal for me. It's hard to throw out there in conversation that my baby girl has Down Syndrome, because that extra chromosome makes people view her differently. But because it is Down Syndrome Awareness Day on 3/21, I'm going public. Do you know why it's on the 21st? Because of the 21st chromosome having an extra copy! So far, Evie has just been our beautiful baby girl who is learning to smile and reach for things. But as she grows older, I want our extended circle of friends to know, so that they can treat her as a typical little girl who may be a little delayed in her development, but will want to be included just like other kids. I want the other kids to play with her and to learn that little girls with disabilities like to have fun too. Our story about our diagnosis is here . Now that we've met Evie and know what we're dealing with, it's not SO scary as it was before. Still overwhelming sometimes , but I wouldn'

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This Youtube video was at first made to showcase Evie's first real jump on a trampoline. Then it became a video with a message about making new friends, because I was just so impressed with how Qole gave Evie the space she needed to feel comfortable enough to say yes to getting on the trampoline. And then as we were making a paper craft about friendship, and we were pulling out different pieces of color, I was struck with how it became a teaching moment for my daughter that people of all colors can hold hands and can look out for each other. May it be so. The world needs it now more than ever.

Evie the Extraordinary and Her Mommy: The Journey As We Go

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