Skip to main content

The breathing tube is out!

The breathing tube has successfully been taken out. At first Evangeline was crying silently because her throat was so hoarse.  But she gained some steam and was letting us know that she was not happy.  I wish I could pick her up, but she still has too many lines in.  If I sing The Itsy Bitsy Spider, she stops crying and looks at me. As soon as I stop singing, her lower lip comes out and she starts crying again. I'm starting to think I should record my voice and just play it instead. 
This was Evie before the tube was taken out. 
This was Erick trying to keep Evie entertained, because she kept remembering she was unhappy and would cry. Thank God for Tylenol!
This is Evie finally drifting off to sleep and getting some food into her tummy via g-tube. Doesn't she look more comfortable? She won't be able to try a bottle for a few more days because she is still too weak. There is also still a risk of aspiration, which means that liquids can go into her lungs when she drinks due to a floppy airway. We don't need pneumonia to complicate her recovery. 
It's looking like Evie will spend the weekend in the ICU for monitoring, but we are making good progress.  

Our friend who is a cardiologist keeps making sure that everyone in the ICU knows that we are his friends and to treat us well.  We've had some meals dropped off too. We are so thankful for such a supportive community! 

Please pray that Evie will rest well and not be too uncomfortable to sleep. She doesn't understand why Mommy and Daddy don't pick her up.  I found another use for the Zipadee Zip though!  She usually likes to suck on her arm when she's wearing the Zipadee Zip, so I put my finger in the arm and stuck it in her mouth. Worked like a charm. (Pacifiers make her gag.) Thank you yet again, Zipadee Zip! 
We can't wait to take Evie home! Not sure when that will will probably be another week here. 


Popular posts from this blog

It's Official! The Polka-Dotted Penguin book has launched!

It's official! My new children's book, "The Polka-Dotted Penguin" has launched today!  How fitting that my labor of love launches on Labor Day. The writing of the book and putting all the parts together took about a year. It was definitely a pandemic-worthy project.  I wrote this book because I wanted more books available for sharing with Evie's class for World Down Syndrome Day on 3-21 and for Down Syndrome Awareness Month in October. I'm happy to release my new book just in time for October! My hope is that this book will be used as a tool to start conversations with children about how to treat others who may look or act differently than they do. It's all about inclusion and celebrating differences.  This book is perfect for ages 4-9, or any ages who love penguins, or really anyone who loves Evie! Here's how to order: Barnes and Noble (Hardcover): Amazon (Hardcover, Paperback, Kindle) :

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

Going public: Down Syndrome Awareness Day and what it means to us.

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'