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I wrote this blog post (sans pictures) the day before Aubree coded and was reintubated, what we now know was caused by her left main bronchus becoming compressed due to her chest wall restriction. While I wasn't going to post this because of how drastically things changed, I decided to go ahead and post this update. This is how things were for the 5-6 weeks or so that she was extubated and thriving before she outgrew the size of her chest. This is what we are fighting so hard to get her back to!
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| Love this bright, smiling face! |
Where do I begin to do an update on Aubree? So many things to catch up on! Many family and friends have been wanting to know what she is up to in more details so here goes!
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| Enjoying reading books with Daddy |
While Aubree was intubated for so long, she couldn't talk because air was being inhaled and exhaled from her lungs through a breathing tube. Without air passing by the vocal cords, she couldn't make any sounds. This was especially scary for us at times because she could be silently crying, and we not know about it because there was no sound. After she was extubated, Aubree was still silent for many days. One night, after she had been extubated for a few days, she went to "talk" and sound came out. The look of surprise and joy on her sweet face was priceless! She literally talked for two hours nonstop, saying all the words she knew, mimicking what I was saying, and babbling away. We praise God for her voice coming back, as long term intubation can cause damage to vocal cords. Praise God for restoring what was lost! It is such a joy to hear her talk, and we literally celebrate every time she talks with cheers for Aubree. The words she says consistently are: hi, bye, Da for dad, uh-uh (meaning no, like if someone puts the stethoscope on her and she wants it off), her own version of Amber, and Papa sometimes. She also babbles many sounds and has started making kissing sounds back to those kissing at her, usually on video calls on the phone. When her Daddy is gone, I will ask her if she wants to call daddy. Aubree starts saying "Hi, Da," when I ask her and keeps saying it until I get him on the phone. This girl loves her Daddy!
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| Sorting shapes with Daddy |
As far as working with her hands, Aubree is bringing things to her mouth, clapping objects together, shaking instruments, bringing empty cups to her mouth like drinking, holding a telephone to her ear, holding other things to her ear pretending they are a telephone, pretend eating and smacking play food, playing piano and drum, pushing items through a shape sorter (with help from mom and dad getting the right shape lined up), turning book pages, pushing sound buttons on sound books, taking objects out of a container and putting them back in the container, and rolling a truck back and forth. A lot of these skills are ones she has had to regain complete mastery of again and others are new (like the pretend eating, rolling the truck, and pushing items through the shape sorter. While the occupational therapists here say Aubree is doing great from a fine motor perspective, one thing they told us to introduce and work on is scribbling and marking on paper with markers. We just cant seem to get her interested in wanting the use the marker, but we will just keep trying. I'm honestly not too worried about it :)
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| Talking on the phone |
Aubree is also enjoying getting to eat baby food again! We try to squeeze in 1-2 sessions with baby food a day. So far, she has had applesauce, peas, pears, and peaches and loved everyone of them. She continues to eat as long as it is fun, then moves on to playing something else since she isn't truly hungry from having continuous feeds running all day through the feeding tube down her nose. We are hoping to get her transitioned to feeds back to her gtube and by mouth so that we can get rid of the tube down her nose. The one down her nose goes past the stomach into the intestine because when food is put in the intestine instead of in the stomach, it should not be able to be vomited. Aubree was struggling having wretching and sometimes vomiting episodes, usually related to the her getting medicine. We have started giving her medicines extremely slowly and this has resolved that issue. Praise the Lord for resolution! Once we get this under control, it will be safe for her to have larger volumes of feed in her belly besides just baby food.
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| Eating yummy baby food and helping feed herself |
While Aubree has a jumper at home, she definitely needed one here at the hospital to help her bear weight on her legs and get her in more of a standing position. We got reminded of her needed a jumper here at the hospital from seeing Aubree's buddy Madden in one at the hospital in Florida and ordered one that night. She has LOVED having the independence of the jumper again! It is also great for her to work on reaching above her head since some of the toys attached to the jumper are taller.
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| Pure JOY! |
While she still struggles with withdrawal at times, we are making progress on weaning some of her medications, both sedation and lasiks. We are almost finished transitioning her from an infant formula to a more age appropriate formula. Like everything else, we are doing this slow and steady, but Aubree is tolerating it well.
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| Loving having Aunt Amber here for a few weeks! |
Above all, we are so thankful for all that God has restored to Aubree. Our sweet girl has come so far, and we give God all the glory. Only He could do the miraculous works that have been done in Aubree's life. Thank you Lord!
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| Happy on the 4th of July |
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| The cutest pigtails I have ever seen! |
