tag:blogger.com,1999:blog-63007461107629100082024-03-05T09:42:25.362-08:00Our Joy: Aubree EliseThis blog is intended to share with others the JOY of raising our sweet daughter, Aubree. Along with sharing her sweet smiles, milestones, and cute things she is doing, we will also be sharing about our continuing journey of her having a genetic condition called Jeunes syndrome. Thanks for reading! Audrahttp://www.blogger.com/profile/08364511458490360345noreply@blogger.comBlogger34125tag:blogger.com,1999:blog-6300746110762910008.post-83804840334869660642013-07-19T10:25:00.000-07:002014-02-19T13:15:20.103-08:00An Aubree Update - 14 Months Old & 3+ Months in the Hospital*<i> 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! </i><br />
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<tr><td class="tr-caption" style="text-align: center;">Love this bright, smiling face!</td></tr>
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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!<br />
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<tr><td class="tr-caption" style="text-align: center;">Enjoying reading books with Daddy</td></tr>
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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! <br />
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<tr><td class="tr-caption" style="text-align: center;">Sorting shapes with Daddy</td></tr>
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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 :)<br />
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<tr><td class="tr-caption" style="text-align: center;">Talking on the phone</td></tr>
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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. <br />
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<tr><td class="tr-caption" style="text-align: center;">Eating yummy baby food and helping feed herself</td></tr>
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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. <br />
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<tr><td class="tr-caption" style="text-align: center;">Pure JOY!</td></tr>
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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. <br />
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<tr><td class="tr-caption" style="text-align: center;">Loving having Aunt Amber here for a few weeks! </td></tr>
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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! <br />
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<tr><td class="tr-caption" style="text-align: center;">Happy on the 4th of July</td></tr>
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<tr><td class="tr-caption" style="text-align: center;">The cutest pigtails I have ever seen!</td></tr>
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Audrahttp://www.blogger.com/profile/08364511458490360345noreply@blogger.com0tag:blogger.com,1999:blog-6300746110762910008.post-49910324562458694602013-06-18T14:39:00.000-07:002013-06-19T14:42:33.665-07:003 MonthsToday marks three months that Aubree has been inpatient. She was admitted to Arkansas Children's Hospital on March 17th via Angel One helicopter and has remained inpatient at either ACH or CHOP since then. In the hospital, she has spent has first St. Patrick's Day, Easter, and birthday. She has cut seven of her eight teeth and we have celebrated our seventh wedding anniversary, Daddy's 30th birthday, Mother's Day, and Father's Day all from a hospital room. <br />
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We truly did not think we would still be in the hospital after so long, but God had other plans. On the other hand, there have been times throughout this hospitalization that we weren't sure whether or not we would even be as far as we are right now either. Aubree has been so very critical to at times during this hospitalization. While this has been absolutely excruciating for us as parents to see her in such a way, it has provided many opportunities to cry out to God in our weakest states. So many opportunities for God to intervene and provide comfort and healing as He sees fit.<br />
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The thing that becomes more and more apparent the longer we are on this medical journey with Aubree is that doctors are just ordinary people doing the best they can with the knowledge and experiences they have, just like we all do. Don't get me wrong, we know we are getting the best of the best in medical care for our girl and have amazing doctors on her team, but doctors can't just fix things. One of my sister's sweet students brought her a handful of pennies recently and told her to send it to the doctors so they would make Aubree all better. Such a precious gesture, and how I wish at times it was as simple as the doctors jut making her better. Sometimes, I find myself wondering how there can be so many unknowns with a hospital full of doctors. Those times are just great reminders and further affirmation that God is truly the Great Physician and the only One who is truly all knowing. While the doctors and medical staff have been wonderful instruments in Aubree's healing, we know it has been through the direction of God.<br />
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While there were so many firsts and celebrations that we wish were at home, we praise God for the things we have been able to celebrate at the hospital: her first major cold NOT being lethal as we were told it could be, surgery allowing both of her lungs the opportunity to grow and support her, successful extubation, a currently stable respiratory status, and almost completely weaning off of IV meds that she has been on for almost 3 months, and so many more reasons to celebrate. <br />
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Throughout all of this, we have been carried by God and our sweet family and friends. Thank you to all of you who remain by our side through this longer than expected journey. Please continue to pray for us, especially Aubree. <br />
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Audrahttp://www.blogger.com/profile/08364511458490360345noreply@blogger.com0tag:blogger.com,1999:blog-6300746110762910008.post-32950797293616333822013-05-31T19:46:00.000-07:002013-06-02T19:47:22.681-07:00A Year Ago Today<div style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;">
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A year ago today we got to bring home our precious baby girl. What had started out on May 3rd 2012 as a brief stint of breathing tubes, supplemental oxygen, configuring the perfect calorie concentration, and a possible (and later confirmed) diagnosis of Jeune's syndrome had turned just 4 weeks later into two first time parents bringing their baby girl home with nothing more than a car seat. </div>
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We were so excited to bring home our previous baby girl to the nursery we had prepared for her. Throughout the entire pregnancy and her NICU stay, Derrick and I had been preparing our lives and our hearts to become Mama and Daddy to Aubree, and she was finally coming home with us. No more driving home night after late night from the NICU with an empty carseat. <br />
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It was honestly hard to leave the NICU behind in a way because the group of doctors, nurses, and therapists there had become like family in four short weeks. They had taken care of our daughter at such a critical time in the most caring and skilled way possible, had patiently explained every step in the NICU to us, and had supported us throughout the roller coaster of progress and emotions that is the NICU. Having literally travelled to some of the best hospitals all over the country, we have yet to experience anything like the level of care and dedication that we did at the Willow Creek NICU. We thank God continually for Willow Creek NICU! <br />
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That afternoon on May 31st, we signed discharge paperwork, buckled her into her carseat, and Daddy carried her as we went down the elevator where the car awaited us. daddy drove home while Aubree and I sat in the back. It was very surreal to leave the hospital with our girl having no monitor or support whatsoever. <br />
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We arrived home to balloons and welcome signs. Once we arrived home, we took Aubree on a tour of the house with extra time spent in her nursery. God had blessed us with being able to take our little jewel home, and we were so thankful! <br />
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With it being such a big day, all three of us were pretty exhausted so we took a family nap with Aubree in the bassinet beside us in the bed. Only the peace of God could explain us being able to fall so hard and fast asleep with no monitor attached to Aubree or eyes actively watching her for the first time in four weeks. We had trusted God with Aubree's life from the beginning (which He worked miracles in from the start), and we had to keep trusting Him for her well being.<br />
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Since Aubree came home, our walls have never been filled with more love, joy, excitement, laughter, and sweet baby chatter and giggles. Daddy has commented on the deafening silence and emptiness in our home without Aubree in it. I can only imagine and know it must be so very hard on him when he must be there all alone without "his girls," as he calls me and Aubree.<br />
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A year later, we find ourselves back in a hospital room so very far from home. While the length of stay Aubree's current hospitalization has far exceeded four weeks in the NICU (previously her longest hospital stay), we remember the sweet joy of taking our daughter home from the hospital and look forward to that day. While we know it will not be soon, God already knows when we will be taking Aubree home from CHOP. We look forward to her homecoming in God's timing, just like we did a year ago.<br />
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Audrahttp://www.blogger.com/profile/08364511458490360345noreply@blogger.com1tag:blogger.com,1999:blog-6300746110762910008.post-40775062043875150802013-05-20T21:39:00.001-07:002013-05-21T19:10:07.394-07:00Mommy & Daddy's Anniversary at CHOPSeven years ago today, I married the absolute love of my life. Derrick is genuinely the sweetest, funniest, warmest, most infectiously happy person I have ever met. We seriously have so much fun together no matter what we are doing. I still find myself rolling laughing at him at the silliest things, but I genuinely think he is still hilarious. Without a doubt, I hit the husband jackpot, and I remind him of that frequently! He's the best!<br />
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God really knew what He was doing when He paired us together. While we have completely the same viewpoint on the big stuff (God, money, politics, raising Aubree, etc.), we are so different in so many ways, and it makes the best balance. We are definitely never bored with each other! He is so organized in his thought processes, and my mind can run 90 miles an hour on a million different things at once. He laughs and says he can see when my wheels are turning in my mind. He cleans one room of the house at time until they are all done while I do tiny bits throughout the house and get them closer to clean. He is an early bird, and I am a night owl. He is a planner, and I am very spontaneous. We definitely balance each other! <br />
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After almost 6 years of marriage, we just thought we were happy. Then, we got the icing on the cake when Aubree came into our lives. She was the missing piece that we didn't know was missing! Our sweet girl is a balance of us, too! Aubree looks just like her Daddy, and acts just like her Mama! Oh my! He is the "fun" one with Aubree that can always make her laugh and giggle and smile like crazy, and I am the comforter who can always get her to sleep or calmed down. With all of Aubree's medical things, he deals with all of the insurance, medical bills, and such, and I worry about appointments, therapies, and supplies. He is seriously the very best Daddy to Aubree, and I love him even more than I thought I could by seeing him love our daughter with all of his heart. <br />
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In the midst of all of the joy we have experienced with Aubree, some of the most difficult times of our life together have been watching our sweet baby fight and struggle from a respiratory standpoint. During these times, we have clung close to one another. Throughout all of these difficult times, from the NICU, to the hospital stays for surgeries and illness, Derrick has been my rock. The roller coaster of these experiences with so many highs and lows are so very excruciating, it is difficult for me to express in words. When in the midst of a low point when Aubree seems to be doing worse, it sometimes feels like it is breaking me irreparably. But Derrick always comforts me, consoles me, and points me right back to God who knows what the future holds for Aubree regardless of whether we do or not. When I occasionally have slipped into darkest of places trying to deal with all of the unknowns that are before us, he always points me back to the light and hope in Jesus Christ. I am so thankful for him loving me in spite of the bawling, broken mess that sometimes comes out and doing everything he can to help put the pieces of me back together. Thank you Lord for a spiritual leader who You use to bring me always back to You, where all hope is found!<br />
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One day, a very special young man will have EXTREMELY big shoes to fill to capture the heart of our sweet Aubree because her Daddy already has her heart and takes such sweet care of it. I can only pray that she finds a man one day who is as good to her as her Daddy is to me. A man who leads his family to the cross of Christ, loves his family unconditionally, and is the most fun, handsome man on the planet!<br />
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Happy 7th Anniversary, Babe! I love you and love being by your side as we live life together. Everyone, please pray for me as Derrick must return to work for few days each week starting tomorrow, and I have never had to do any of this without him. Please pray for Derrick also because this will be his first time to ever be away from Aubree since she was still in the womb when I was a few months pregnant. He in no way wants to leave his girls, but it must be done. God give us strength through the times of separation. Most of all, Lord, continue to work in Aubree's health and life and help us to make the best decisions for her. <br />
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Audrahttp://www.blogger.com/profile/08364511458490360345noreply@blogger.com1tag:blogger.com,1999:blog-6300746110762910008.post-45825715076342725492013-05-03T16:25:00.001-07:002013-05-03T16:25:57.611-07:00Happy 1st Birthday, Aubree!A year ago today, Derrick and I anxiously awaited meeting the sweet baby girl whom we had grown to love over the last nine months. Though she was already in existence and very much alive, we couldn't wait to meet her face-to-face. With the majority of both of our families living hours away, it was a blessing for a C-section for breech to be scheduled. This meant all of our family members and friends could be there for Aubree's birth without travel time interfering. 26 people were in the waiting room anticipating the birth of Aubree while Derrick and I were back in the OR. <br />
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<tr><td class="tr-caption" style="text-align: center;">Our sweet girl just a few minutes old (and the first time I got to see her!)</td></tr>
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That afternoon, our sweet girl came out silent, but kicking. While she was beautiful in our eyes, she looked a terrible gray color and was immediately receiving help from NICU staff that was present. Another blessing from the C-section was that NICU staff were already present per hospital policy. God knew what he was doing making this baby breech! Instead of Derrick carrying Aubree out in his arms as was the plan, she was wheeled out in an isolet with our family and friends only getting a glimpse of Aubree on her way to the NICU. <br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgv-cEdNi18yLnqbyMbHw89SQxOosqqSTMmsL4GYJ8B_nIRoBnnp5htV_4BaBRiWXGmj6zdFNWe6EswrCwOncu0QhtuJu_OQwOkz_3ag7NI5K8NZxpNwymBHyjj5YNk5Cdi3MAMau2Wah0/s640/blogger-image-1289047936.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgv-cEdNi18yLnqbyMbHw89SQxOosqqSTMmsL4GYJ8B_nIRoBnnp5htV_4BaBRiWXGmj6zdFNWe6EswrCwOncu0QhtuJu_OQwOkz_3ag7NI5K8NZxpNwymBHyjj5YNk5Cdi3MAMau2Wah0/s640/blogger-image-1289047936.jpg" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Our sweet Aubree, less than a day old with a breathing tube in. She didn't have to keep it very long. <br />
So beautiful and such a fighter even then!</td></tr>
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We will be forever grateful for the excellent, loving care Aubree received in the Willow Creek NICU. While it was extremely unexpected for Aubree to need such assistance after birth, God took care of Aubree and held us up in such a trying time. Also, having literally taken her to other places in the state and across the country, we know Aubree could not have gotten better care anywhere else. Thank you Willow Creek NICU for all you did and have done for us and our girl!<br />
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<tr><td class="tr-caption" style="text-align: center;">Sweet sign Derrick's mom (goes by Lady to the grandkids) made to help celebrate Aubree's birthday.</td></tr>
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While there have been surgeries, trying medical times, and so many other hard times throughout the last year, none of those things pale in comparison to the love, joy, and happiness we have experienced since Aubree was born. Aubree is the bright light in our lives we didn't know we were missing. Made in His image, Aubree has shown us even more glimpses of the joy of the Lord. Also, we have an even greater understanding (though still not a full understanding) of how much our Heavenly Father loves us and Aubree. We love our precious daughter more than we ever thought it possible to love another person, and God loves her even more than we do! Hard to even fathom because we love her so very much! <br />
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<tr><td class="tr-caption" style="text-align: center;">Sleeping beauty in her birthday bow and bib</td></tr>
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Also, having Aubree has really brought to light the great sacrifice God made on our behalf of sacrificing His Son Jesus Christ so that the debt of our sins could be paid so that we might spend eternity in Heaven with Him. What great love God must have for us to sacrifice His Son so that we might become sons and daughters? I cannot fully comprehend this because I cannot imagine having to turn my back on Aubree and for her to die the most painful of deaths so that others might have eternal life. Thank you Lord for giving us the hope of eternal life by trusting and believing in Jesus Christ! <br />
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<tr><td class="tr-caption" style="text-align: center;">Still smiling!</td></tr>
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Aubree has also brought so many people to the feet of Jesus, crying out to Him to heal and comfort this sweet baby. So many prayer warriors and some praying for the first time in a while have come alongside us and prayed on behalf of our sweet girl. And, what glory God gets when she has improvement, shows signs of healing, or even remains stable. Our great God is definitely in control, yet hears and answers the prayers of His people. <br />
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While it has been the hardest, this has truly been the very best year of our life! It has been so much greater than we could have ever anticipated! We are so thankful for everyday that God has given us with Aubree and look forward to each additional day the Lord gives us with her. I know that this is not the typical 1st birthday post with milestones and statistics (which are great to record and celebrate), those are not the things that came to mind when thinking of the blessing our sweet Aubree has been to us over the past year. We are most thankful for who she is, the way God created her before we even knew she would be coming, and the sweet spirit He instilled in our girl. While milestones and places on growth charts are great, we don't love Aubree for what she can do or how she appears physically. We love our precious jewel for who she is, our precious daughter made perfectly in the image of a King! <br />
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<tr><td class="tr-caption" style="text-align: center;">Banner made by Derrick's mom (goes by Lady to the grandkids). <br />
So sweet that she worked so hard to help make Aubree's birthday special in the hospital. </td></tr>
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Audrahttp://www.blogger.com/profile/08364511458490360345noreply@blogger.com1tag:blogger.com,1999:blog-6300746110762910008.post-81460936893798398322013-04-26T20:04:00.002-07:002013-04-26T20:04:42.712-07:00Unexpected Events Part 3: ACH<div class="separator" style="clear: both; text-align: center;">
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Here are links to Unexpected Events <a href="http://raisingaubree.blogspot.com/2013/04/unexpected-events-part-1-at-home-er.html" target="_blank">Part 1</a> and <a href="http://raisingaubree.blogspot.com/2013/04/unexpected-events-part-2-helicopter.html" target="_blank">Part 2</a> in case you want to get caught up. <br />
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*Three things I forgot to mention in the last post that I really want to remember:<br />
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1.) Aubree's room in the PICU was the exact same room Derrick's cousin Alex was taken to after he was transported via Angel One after a severe car accident. Out of all 26 beds in the PICU, we were put into one with strong ties to family and strong emotional memories. God provided such hope in that situation, and Alex is not only survived but is thriving by God's grace. <br />
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2.) On Aubree's first full day in the PICU (Tuesday, March 19th), it was a very trying day with every noninvasive approach to help Aubree stay adequately ventilated eventually failing time after time. That Tuesday morning, the nurse that was assigned to Aubree looked so familiar to me. I asked her if she had possibly taken care of our dear friends' daughter Hannah Crumby, and she had. Nurse Kelli had actually been a "favorite" who had taken care of Hannah frequently during her time at ACH, which is why I recognized her. I cried once the connection was made because it reminded me of the spunky four year old that didn't get to go home from ACH. This was just the beginning of a day filled with tears; however, God knew we needed a familiar face that trying day. There is no doubt God provided Kelli for us that day, to help us take care of our girl. Kelli is also a first-time mama to a baby just a little younger than Aubree, and she was so sweet and understanding about the pain of seeing our girl hurt. Kelli was so sweet and provided such great care to Aubree. Thank you Lord for giving us just what we needed right when we needed it, even something we didn't know to ask for.<br />
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3.) Prior to intubation, an echo was also done of Aubree's heart to make sure it was still functioning properly and had not enlarged or anything from all of the extra work her body was doing that was keeping her heart rate high. Thankfully, the echo was clean! <br />
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<strong>Back to Part 3!</strong> Sorry for the interruption! After Aubree was intubated that night, I was finally able to rest somewhat because there was truly nothing else I could do for her, even from a comfort standpoint since she was sedated for being intubated. I knew that God had been and was taking care of Aubree. Once intubated, anything that I could do to "help" her was taken away, and all of the healing was left up to God and the medical staff He could use to help with His plan for Aubree. <br />
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A blood gas an hour after she was intubated showed her CO2 had been cut in half (from the 120s to the 60s) and her pH was no longer acidic (it was 7.14 when they decided to intubate; the lowest end of normal for pH without being too acidic is 7.35). Her heart rate was also down to normal levels since her body could finally rest. I was finally able to rest a little bit that night knowing Aubree was finally being ventilated (able to blow off her CO2), even if it was being done mechanically for her. Our poor baby just needed a break to let this illness run its course and for her to be able to rest and recover. <br />
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The next morning, Aubree took a "field trip" to the IR part of the hospital to have a central line placed. This is a much more stable catheter than an IV and is placed in a larger, more stable vein in the upper arm that leads directly to the heart. Since Aubree had to be stuck so many times for blood gasses and since she such a hard stick for IVs (took 3 nurses and about an hour and a half total to get one IV placed where the vein didn't blow at ACH), we were thankful for her to not have to be stuck constantly for blood draws. Also, meds, IV fluids, and the like could be easily given and work even faster since they would go directly to the heart. If an infection develops in the central line, it can be very dangerous because the infection would go straight to the heart, but lots of precautions are taken to keep the insertion site and all lines leading to the central line as sterile as possible. Aubree did great during the transport out of the PICU and back. We are still so thankful for this line since it prevented (and is still preventing) so many sticks from happening to our sweet girl. <br />
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The next few days consisted of Aubree remaining stable and healing as the vent was doing the work for her. One issue that came up as the attending doctors directing care for Aubree changed and with each change came a different opinion of whether or not Aubree should be attempted to wean off of the ventilator or not prior to going to CHOP. Aubree was intubated on a Tuesday (exactly three weeks prior to her scheduled surgery date) and this conversation started on Friday. The doctor coming off service (the one that intubated Aubree) did not want to attempt to intubate her. The weekend attending wanted to assess Aubree and let her tell us if she was ready. We were of the same opinion as him. The attending coming on for the next week was extremely gung ho about pulling the tube. <br />
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During rounds with the "gung ho" doctor, he was very ready to start weaning and pull the tube. I expressed concerns about her not being ready to wean vent settings in preparation of pulling the breathing tube because she was still symptomatic of rhinovirus (which is what got her intubated in the first place) and acting sick. She already works hard to breathe and just couldn't handle the work of being sick on top of the work she was already doing. Respiratory muscle fatigue kept her from ventilating like she should. Also, I expressed concern about the method they were wanting to use to wean her vent settings. They were wanting to wean her peep (the tiny air pockets in the lungs staying at least mildly inflated even when inhaling) relatively quickly and put her in volume support instead of pressure support. Aubree has always pulled pretty great volumes, but struggles with peep because of her chest being restricted. Also, from her previous extubation after surgery, she did not tolerate volume support but did tolerate pressure support very well. While I was always able to say my piece, I kept feeling like what I was saying was falling on deaf ears. I kept hearing "well, this is what we typically do" and "we'll just see if she's ready and, if she's not, we'll just put her back on her old setting; no big deal." I kept advocating for Aubree and reminding them that she is not a typical child, so what typically works for other kids isn't what will work for her. I also kept expressing concern about her not being ready because she was still symptomatic of being sick, and I was afraid of her becoming even weaker from a respiratory standpoint by weaning her vent support and that it would be very difficult for her to rebound because of her being fatigued from the illness already. I requested for doctors and APNs from Aubree's team come to the bedside many times so that I continue expressing my concerns, and they came. However, I kept getting the same responses. The nursing staff taking care of Aubree were very supportive and helped relay my concerns as well. <br />
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I literally did everything I could think of to keep them from weaning the vent except put my body in front of it and refuse. I guess next time I will put my body in front of the vent if I am ever faced with the same situation because once her vent settings were weaned, every concern I had about them weaning the vent settings came true. Her blood gasses became horrible, she was requiring more oxygen, her chest xray showed the worst signs of atelectasis (the tiny air pockets collapsing from not maintaining peep) it had shown since she had gotten sick, and she wasn't bouncing back once they put her settings back to what they were before the wean. Because she had gotten so weak with them making her do respiratory work she wasn't ready for, they had to increase her vent settings to even more support than what she was on before the weaning because she was even more weak. <br />
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To say that I was upset would be an understatement. I had done everything I could think of to try and protect my child and no one would listen. And Aubree was paying the price. I ended up talking through many tears to the attending that was on for that night (but not part of Aubree's team during the day), and for the first time it was acknowledged that they do not have experience treating a baby like Aubree and did not know exactly how to treat her. Now, I love ACH and am so thankful that they were able to safely intubate Aubree and stabilize her. The medical professionals there are skilled and wonderful and save children everyday. However, no hospital is an expert in every field. They can't be. ACH is renowned for many areas of concentration, but treating children with thoracic insufficiencies such as Aubree's is not one of them. CHOP, the #1 children's hospital in the nation and one of the largest, does not specialize in everything either. It's just not possible. <br />
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Also, as any parent of a child with special medical needs know, no one knows your child as well as you do. While we don't have all of the medical training that doctors have, we specialize in our little girl. It definitely takes everyone working together. We don't know everything and want and need the help of the doctors. Doctors change, hospitals change, but mom and dad are always there and are the only absolute continuity of care. However, I struggled in this particular case to get anyone to think outside of the typical child box to think that would be best for Aubree as the unique individual she is, even after giving them information that we know about Aubree from taking her to doctors who specialize in babies like her. The same overnight attending assured me that she would personally meet with Aubree's team in the morning before rounds to get a better game plan going for Aubree. The attending also said she would get the wheels in motion to get Aubree transported to CHOP so that she could be assessed to see if she was ready for surgery and optimize her as much as possible from a respiratory standpoint for whenever surgery would be. <br />
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I was very thankful that I was finally able to get through to someone about how Aubree is not the typical case, but hate that it took her declining from a respiratory standpoint to get anyone to listen. That night after we finally got her back to decent blood gasses, she was running fever again, which she hadn't been doing the last couple of days. It was also not breaking with single doses of Tylenol or Motrin. She also started pouring snot. I was told it was just because of the rhinovirus, but I knew it was something different because of the changes in Aubree. Upon my insistence, we did a viral panel and cultured everything possible to see if infection was brewing somewhere. The culture from her breathing tube came back positive for MSSA (a type of staph) that she acquired from being intubated, from being in the hospital, and I believe her weakened state from the vent weans. Aubree was given antibiotics and started to improve from the secondary infection slowly. <br />
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Rounds from that point on were pretty uneventful and revolved around Aubree remaining stable for transport to CHOP and getting the logistics of the transport arranged. It was set that Aubree would go to CHOP a week before her scheduled surgery date. During the rest of Aubree's time at ACH, she continued to have several super sweet nurses who would comfort her, love on her, and be so sweet to her as they provided the best care. We also had some great respiratory therapists, a dedicated case manager arranging the transport, a sweet social worker checking in on us in case we needed anything, and lots of great medical staff including several doctors. While we did have that one major hiccup, we don't harbor any bad feelings towards Aubree's time at ACH and are so thankful for all that they did to help our little girl when she was in such great need. <br />
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While there were lots of very difficult times, I want to remember the blessings that occurred while we were there. Little Rock where ACH is located is substantially closer to my family and Derrick's family. We were so fortunate to have lots of family with us every day and taking care of our physical needs. We literally only had to eat one meal from the cafeteria because of takeout, home cooked meals, and snacks coming from our family and friends. What a blessing! It was also so nice to see everyone since we cannot yet take Aubree anywhere, and it had been awhile since we had seen so many of our family members. My family also fixed and brought several of our favorite dishes for a yummy Easter lunch, which is the first meal I have gotten to have with almost all of my family since Aubree was born. We hated the circumstances, but we were thankful to be constantly surrounded by those we loved. Literally, our families were the first visitors of the day in the PICU and the last visitors to leave. Knowing we are not alone in the trying times and that we have an army of people that love us and Aubree helps us stay strong.<br />
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My sweet sister Amber and friend Monica made Aubree several sweet gowns for her to wear while she was in the hospital that were very cute and girly. This gesture meant so much to us! Amber quickly got very comfortable with the sewing machine and even deconstructed an Easter dress and sewed it back together in a way that Aubree could wear it with all of her lines and tubes coming out every which way. Amber also went out and bought all kinds of goodies and monogrammed her an Easter basket for Daddy and I to still get to play Easter Bunny and put together an Easter basket for Aubree. We wish we could have had our sweet baby home for her first Easter, but we are so thankful to have her here with us on Easter! Thank you Lord for the sweet blessing of our daughter and for hope through Jesus Christ!<br />
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<br />Audrahttp://www.blogger.com/profile/08364511458490360345noreply@blogger.com0tag:blogger.com,1999:blog-6300746110762910008.post-21053874350090178182013-04-23T18:43:00.000-07:002013-04-23T18:43:34.025-07:00Unexpected Events Part 2: Helicopter Transport to ACH & IntubationIf you missed it, here is <a href="http://raisingaubree.blogspot.com/2013/04/unexpected-events-part-1-at-home-er.html" target="_blank">Unexpected Events Part 1</a>. I had just left off at leaving the pediatrician's office to go about 15 minutes north to have a blood gas and chest xray at the ACH regional clinic. When we get there, we also ask about going ahead and seeing the pulmonologist because Aubree had a scheduled appointment with her anyway the next day. Once we get in a room, the pulmonologist is able to see Aubree briefly for a quick listen. She does not detect a crackle like the pediatrician had heard. Next, the respiratory therapists come and take a blood gas. Our sweet girl is still feeling crummy and is needing 3 liters of oxygen. Derrick, Amber, Aubree, and I are back in the room for what seems like quite some time before the pulmonologist comes back in the room and tells us Aubree CO2 is in the 90's and her pH is acidic. She says that the only option is for Aubree to be taken to Arkansas Children's Hospital via helicopter to help her severe respiratory distress. This is obviously very hard to hear, that our baby is critical to the point that the safest way to transport her is via helicopter, i.e. the quickest method. It is also recommended that someone go home to get Aubree's home cpap to put her on until the helicopter could get there to see if that would help get her CO2 and pH at more stable levels prior to transport. <br />
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At this time, we also ask if we would be able to fly with Aubree. They did not know, it would not be determined until after the transport crew had arrived and assessed Aubree. Even feeling bad, Aubree wants to be with Mama or Daddy or someone she knows, or she can get scared. So, as hard as it was, Daddy left us there and took off for Little Rock in hopes of beating the helicopter or coming close to being there when Aubree would arrive so that at least one of us would be there for her upon arrival in case I was not able to go with Aubree. The medical staff in the clinic were not optimistic about me getting to ride and said it usually only happens about 1 in 5 times. Derrick also called and sent his parents (closer to Little Rock than us) to ACH to have a familiar face there for Aubree in case I was unable to ride and him not have enough time to make it. As Derrick was leaving, he literally dropped Amber, who was still with us through all of this, off at a gas station close by where our dear friend Bailey (also on Spring Break from teaching) came to pick her up and take her to our house to grab our bag (I had already packed one over the weekend just in case we electively went to ACH), get her car, and bring the cpap machine back to the office. <br />
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<tr><td class="tr-caption" style="text-align: center;">On cpap at the ACH clinic back home, getting her CO2 down somewhat</td></tr>
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Amber brought the cpap machine up and we got Aubree set up on it. After being on this for maybe an hour, her CO2 went down to the 60s. Not great, but much safer. The staff at the office got us a couple drinks, snacks, and some lunch with their office order. While I hadn't eaten or drank anything in about 20 hours and had no appetite, my sister lovingly shoved a couple bites and sips down me to keep my hypoglycemic tendencies at bay. Thanks for warding off the shakes, Sis! <br />
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The helicopter took a little bit longer to get there than normal because of weather in Little Rock, but made it there a couple of hours after the call from the pulmonologist. The pulmonologist also told us to be prepared for them to intubate her for transport because that might be the safest way to transport her. Upon assessment from the transport team and with them conferring with the PICU attending who would be taking Aubree once she got on the ground at ACH, it was determined that Aubree was stable enough to be transported on her home cpap as long as it would work and nasal cannula for when that was not available. The transport respiratory therapist really worked hard and did some thinking outside of the box to make the home cpap even an option for the transport because the interface Aubree uses is not compatible with the transport ventilator. We were so thankful that she did not have to be intubated at that time! <br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjiOCrla1oCng3C3BD_NoJ444NKcdMS2gQ9bzl06WhZRkkkfkd2_fqGkTmVbIQDsPSg4EJXYrDtw8ReE_g4Lv0Gg67XTPTu3LU_Y39pMQHAbvBAYmWbmFfZRIrsDHApn31GvCsv0W34si4/s640/blogger-image--834520651.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjiOCrla1oCng3C3BD_NoJ444NKcdMS2gQ9bzl06WhZRkkkfkd2_fqGkTmVbIQDsPSg4EJXYrDtw8ReE_g4Lv0Gg67XTPTu3LU_Y39pMQHAbvBAYmWbmFfZRIrsDHApn31GvCsv0W34si4/s640/blogger-image--834520651.jpg" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">How we got to Little Rock</td></tr>
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Also, after much prayer, we found out I would be able to ride with Aubree. Thank you, Lord! We left the office with Aubree on a stretcher with a fresh IV and on a nasal cannula for the ambulance ride to the Springdale Airport. Once in the ambulance with access to power, we put her back on cpap. I can get very carsick and seriously thought I might puke in the back of the hot ambulance in the 10 minutes it took to get to the airport. I prayed for the Lord to help keep me from puking there or in the helicopter as I prayed for Aubree. During the transition from the ambulance to the helicopter, Aubree was back on the nasal cannula of oxygen. Once Aubree was in the helicopter and the power was on, we hooked her up to her home cpap. Off we went for a 50 minute ride to Little Rock. (Side note: The night before, some show was on and showed people flying. I mentioned to Amber that I hadn't flown since last summer and kind of missed flying from all of our traveling days. Maybe God was preparing my heart for what was ahead, but this is definitely not what I had in mind!) The home cpap lasted about 15 minutes, but the pressure and altitude change from our elevation interfered with the pressure the cpap was supposed to be delivering. We put Aubree back on the nasal cannula with oxygen, and she stayed doing great. Sweet girl slept the whole time. And I felt much better than I did in the ambulance and did not get sick.<br />
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In Little Rock, we landed on the roof of ACH. There is no lip or catch or anything up there close to the edge. For safety, they took me off first and got me inside where I waited and watched as they got Aubree unloaded off of the helicopter and wheeled into the hospital. This took a few minutes. By the time I could see her again, she was darting her eyes back and forth, right to left with her pupils huge. She looked so scared and couldn't find her Mama. Once she finally found me, she just started bawling. I got as close to her as I could as they are trying to wheel her onto the elevator and talked soothingly to her to try and calm and comfort her. This broke my heart for her to be scared. I can't imagine how much worse this would have been for the whole transport instead of just a few of minutes. Thank you Lord for keeping us together!<br />
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Because of the delay from the weather getting the helicopter to NWA, Daddy actually beat us to the hospital by a little bit and was able to meet up with us pretty quickly once we got in Aubree's room in the PICU. Tons of people were in and out in the beginning. The attending and fellow decided to put Aubree on a heated high flow nasal cannula of oxygen which can sometimes help flush the CO2 out. This seemed to keep her CO2 in the60s, then the 70s. Better than the 90s which got us into this mess, but not good since her CO2 is usually in the 50s. Since it was approaching evening anyway, since Aubree is usually on cpap at night, and since her CO2 was in the 60s earlier in the day once on cpap, it was decided to put her on cpap through the night. This kept Aubree's CO2 in the 60s for a few hours, but kept creeping up and by morning, her CO2 was in the 90s again. <br />
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The next course of action was to put Aubree on bipap on the Trilogy (really the only ventilator sensitive enough to sync with babies like Aubree and detect their shallow breathing) to try and help her blow off her CO2. This is a newer ventilator and not very many respiratory therapists (RTs) have experience with it. Literally, every RT on the floor in the PICU was in Aubree's room trying to figure it out. Thankfully, a relatively new RT had had testing on it and was familiar enough with it to set it up. Upon my suggestion, I also had them call her old RT from the Infant and Toddler Unit who had figured out good settings from Aubree on the vent when she had trialed it back in October when Aubree was there for observation. Thankfully, that RT was working that day and could help out over the phone. It took a village, but we got her set up on bipap. A blood gas after Aubree was on there an hour showed her CO2 back down in the 60's. Unfortunately, the same thing that happened with cpap happened with bipap. It would work for awhile, then not be enough to keep her CO2 down. When her CO2 reached the 90s on bipap, we went back to heated high flow nasal cannula since that was the only thing in the mix of all that we had done that didn't get her CO2 in the 90s, only the 70s. During all this, while the blood gasses gave us definitive numbers of how she was ventilating (getting rid of CO2), Aubree was really good at letting us know how she was doing. If her CO2 was high and her pH acidic, she was very lethargic and sleepy, so much so to the point that she didn't hardly flinch when given a shot and have an iv done. But, if her blood gasses were better, she would look at books, play with toys, wave at Daddy, etc.<br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjtG0hO6UyzE2qX-jtvLm88AYBREfdc_ILBhnZO8fUucNcmNRTUIusCbozou1VbVETxSD-GpukBJgMkxFWNthp1hbYe1JH90wi8g2DP8aR8AVrfsjdOyci-Dr_742UvnY0UblzbsJtmURQ/s640/blogger-image--61598446.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjtG0hO6UyzE2qX-jtvLm88AYBREfdc_ILBhnZO8fUucNcmNRTUIusCbozou1VbVETxSD-GpukBJgMkxFWNthp1hbYe1JH90wi8g2DP8aR8AVrfsjdOyci-Dr_742UvnY0UblzbsJtmURQ/s640/blogger-image--61598446.jpg" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">How we spent so much of the time before she was intubated, snuggled up together on the hospital bed.<br />
Poor baby doesn't feel good. </td></tr>
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Also throughout this time, many labs and tests were run, but the only thing that came back was that Aubree was positive for rhinovirus. While this is usually just a common cold for most, it is super serious for Aubree and babies like her. This was the same illness that caused Aubree's buddy Madden to have to stay intubated for months after his surgery because it knocked him down so bad. It was knocking our sweet girl down pretty hard, too. <br />
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As soon as Aubree was put back on heated high flow nasal cannula, she almost immediately became inconsolable. Thrashing, crying, miserable for over 50 minutes. Aubree has never in her whole life been in consolable for any longer than a couple of minutes. I can always comfort or soothe her. I was so concerned about the way she was acting and knowing things were going wrong that I had a doctor come to the bedside to make sure she was at least safe for the time being. The resident came by and said we would just see how the blood gas went. I was finally able to console her enough that she wasn't thrashing about, but at that point she was pretty much responseless and just laying in my arms. Shortly after they drew the blood gas, the fellow (who had admitted Aubree, was so sweet, and had a baby of her own at home close to Aubree's age) came in with tears in her eyes and didn't speak for awhile. When she finally was able to speak through being choked up a little, she told us her CO2 was 122 and her pH was 7.14, the worst either one had ever been. We had no choice but to intubate Aubree because she was in respiratory failure.<br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhCzUhiqhOFMWu3sLgF5E05iMQ-ITNP_xn-_tKUmKPS7bkj4-dK7Gz7Sf1DOOzilRC9zxMh_QIkBMDKBdGsLBvuj_1jDU1-Gh1OQlPIMRkJDYnfgYf7U73jP-QikYEuZ0Y8v7d_9okwDJM/s640/blogger-image-917812437.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhCzUhiqhOFMWu3sLgF5E05iMQ-ITNP_xn-_tKUmKPS7bkj4-dK7Gz7Sf1DOOzilRC9zxMh_QIkBMDKBdGsLBvuj_1jDU1-Gh1OQlPIMRkJDYnfgYf7U73jP-QikYEuZ0Y8v7d_9okwDJM/s640/blogger-image-917812437.jpg" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Poor baby would get so incredibly sweaty when her blood gasses where off. Still cute even when she didn't feel good!</td></tr>
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All that we had been trying to avoid was about to happen. However, I was honestly not surprised because of how awful she had been the last hour. The fellow confirmed that her CO2 was so high that it was affecting her organs and altering her mental state, hence her being completely inconsolable and thrashing about. In a way, I was honestly relieved because Aubree was going to get a break and get to rest. Our sweet fighter had done everything she could, but her respiratory muscles were just way to fatigued from the extra work she already does and the work from being sick. I can also have comfort in feeling that everything that could have been done was done to try and keep Aubree from having to be intubated. We had been fighting right along with her, and we all needed a break. I literally hadn't slept or had more than a sip or a nibble in several days because of watching Aubree constantly and trying to comfort her by holding her, rocking her, and anything else we could think of. We were also thankful that Aubree's intubation was able to be planned instead of in an emergent situation. We were able to get in some good snuggles before she would have to be indefinitely sedated. About 10 minutes before they intubated her, they were preparing the room for the procedure, and she woke up and was sitting up in my lap. She was smiling at us and looking at books. It was so good to see a little bit of her and her sweet personality before it would be suppressed with pain and sedation meds. <br />
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While we could have stayed and watched her be intubated, we decided not to and went to the waiting area with our family. While we could handle it, we have nothing to offer in that situation and the room was so full of people helping. We were also so physically drained from unsuccessfully trying to get her better, a break could benefit us as well. While her being intubated was not what we wanted to happen, we were so glad that something could be done to help Aubree as she fought this illness. <br />
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At this time, I remember talking to Derrick and saying how this was probably for the best. We were killing ourselves trying to do anything we could to help her get better (all of this under advisement of her doctors of course), but things kept getting bigger and bigger out of our control. We are not in control of any of this. God is. It took Aubree's respiratory well-being being totally taken out of my hands with the intubation for me to be quickly reminded that no matter how hard we worked to keep Aubree safe and well, her entire life, health, and happiness is not up to us as her parents, but is completely in God's hands. We are so very thankful God has a plan for Aubree's life and that He is in control. <br />
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To be continued with Part 3: ACH and Transport to CHOP<br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhJIIEAUeP_3Y_6iim-rM7sXnWKxBFaX4dHnkrxdMkTG9-WGzLoVmrygU9b_Kq6UElgck4VwZ6qohoEgzXKSTMDL-3ZLR1_Yc2uhKjTE6enl8sePryRptsZ-6I4EfVxCTMftWL9OON8Z8U/s640/blogger-image-1049140454.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhJIIEAUeP_3Y_6iim-rM7sXnWKxBFaX4dHnkrxdMkTG9-WGzLoVmrygU9b_Kq6UElgck4VwZ6qohoEgzXKSTMDL-3ZLR1_Yc2uhKjTE6enl8sePryRptsZ-6I4EfVxCTMftWL9OON8Z8U/s640/blogger-image-1049140454.jpg" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">I know we all look pretty exhausted, and its because we are. And I had been crying all day long. It is physically painful to see my sweet girl sick and declining. This is the last picture we took together as a family before she was intubated. </td></tr>
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Audrahttp://www.blogger.com/profile/08364511458490360345noreply@blogger.com0tag:blogger.com,1999:blog-6300746110762910008.post-58215976013930193912013-04-07T20:41:00.002-07:002013-04-07T20:41:55.131-07:00Unexpected Events Part 1: At Home, the ER, & the Pediatrician's Office<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgoLdqb_BiYQvftZrXAXpiMqUxNRkR03PFyv4EwahukU25ZH2SJIqYNcat_r1LBuQ0ZcYa9f5Apa4sRYlsXv9cpr0TNBZGL6EWKNO0WPBwO265XWUNa_7OeP7jgw0IU0up69a-d88waC1k/s640/blogger-image-1558136735.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgoLdqb_BiYQvftZrXAXpiMqUxNRkR03PFyv4EwahukU25ZH2SJIqYNcat_r1LBuQ0ZcYa9f5Apa4sRYlsXv9cpr0TNBZGL6EWKNO0WPBwO265XWUNa_7OeP7jgw0IU0up69a-d88waC1k/s640/blogger-image-1558136735.jpg" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">This is Aubree feeling and looking great in sweet little pigtails exactly a week before things started changing on Friday afternoon, March 15th. </td></tr>
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With all that has happened, I have not had the time to do a big blog post about everything. For my own memory and for other Jeunes that might be looking for information like I did when we got Aubree's diagnosis, I am going to try and record the course of events from the past month or so. I have been pretty good about updating friends on facebook in bits and pieces about what has been going on with Aubree this past month once she was flown to Arkansas Children's Hospital. This is pretty much everything that happened up to that point. Here we go!<br />
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About 5 weeks ago, Aubree was drooling like crazy, had the beginnings of a stuffy nose, and was tugging at one of her ears occasionally. Never to let anything slip by us with our girl, we took Aubree to see her pediatrician (who is seriously the best!), and he said that it looked like she had an ear infection in one ear. To be extra cautious, he put her on 2 weeks of amoxicillin (a normal course would be 7-10 days) just to make sure we were in tip top shape for Aubree's upcoming surgery in about a month. Aubree's ear got better and her snottiness got worse for about the first week of the antibiotics, for which we did some saline and suctioning with the suction machine at the house. By the second week of antibiotics, Aubree's nose was dry, and she was no longer pulling on her ear. Throughout all of this, Aubree acted like her normal, happy, active self.<br />
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I also want to add that Aubree is checked out (respiratory rate, heart rate, weight checks, lungs listened to, etc.) weekly by her home health nurse to be another set eyes (and medically trained ones at that) to make sure that there are no changes or areas of concern. We have never had any red flags pop up during any of her weekly visits. <br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjyMg39ULsllCKuYgFdizbuhqEtxq86_tne5HgKiCNKci86mRJAcw_nu3KaL_GC1fJXXmjihRFwagbj02Edaend6Q5DrlA_giZdWfh1W73JSH8mKAc9wK6htxxQhjiNqUm1CxKc_y0QrHI/s640/blogger-image--277638111.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjyMg39ULsllCKuYgFdizbuhqEtxq86_tne5HgKiCNKci86mRJAcw_nu3KaL_GC1fJXXmjihRFwagbj02Edaend6Q5DrlA_giZdWfh1W73JSH8mKAc9wK6htxxQhjiNqUm1CxKc_y0QrHI/s640/blogger-image--277638111.jpg" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Riding her pony like a big girl! I had gotten her this for her 1 year birthday, but we decided to go ahead and give it to her so that she could enjoy it and just get her new stuff for her birthday. So glad she got to enjoy it before she got sick! Can't wait for her to be riding her pony again! At this point, she is still on the first round of antibiotics and doing great. <br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEivNDHtAVxQ_w2HlIGLAuEl-LXhDm_d5E7T0-dsdkmwQVXCdNqNLBdAp_5vBS8mLkvtYzr2w2A7GP9HI4IBaDPTp3YtHpInnByeUT_qtJzhz7ZUuzlFRTyWCjRYpLmKYZ-WiWmy0e65OxQ/s1600/IMG_9037.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEivNDHtAVxQ_w2HlIGLAuEl-LXhDm_d5E7T0-dsdkmwQVXCdNqNLBdAp_5vBS8mLkvtYzr2w2A7GP9HI4IBaDPTp3YtHpInnByeUT_qtJzhz7ZUuzlFRTyWCjRYpLmKYZ-WiWmy0e65OxQ/s1600/IMG_9037.JPG" height="320" width="240" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Our sweet St. Patty's Day Princess! This was also taken when Aubree was on the first round of antibiotics. This was also well before St. Patrick's Day so that we could send pictures out to family. Aubree was unfortunately at ACH on the actual holiday. </td></tr>
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As we ended the course of antibiotics (literally, the same day we ended them), Aubree started acting fussy, and she is not a fussy baby. She will literally go days at home without crying. The night before, she had a restless night of sleep and her heart rate never lowered to her deep sleep heart rate. That day, she was having trouble taking her normal cat naps even though she seemed tired. Her spot checks throughout the day to check on her heart rate and her pulse ox were normal for her activity level and fussiness. It was a pretty day so I decided to take Aubree on a walk in the stroller. I remember thinking I should try let her get as much outside time as possible before surgery. Also, I had hopes of this helping Aubree get a little cat nap since she seemed fussy and couldn't rest. Anytime my eyes are not physically looking at Aubree, she is on her pulse ox monitor. Anytime we sleep, that she is in the car seat, even with her back to me in the stroller, she is hooked up so that no oxygenation issues sneak up on us (like her rubbing her cannula out of her nose while sleeping, a portable o2 tank running out unexpectedly, etc.). <br />
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So, off we went on our walk. Aubree's oxygen saturation is normal and her heart rate is normal for <br />
her being awake and active. As we strolled, Aubree's o2 sat starts hitting the lower 90's and her heart rate is still that of an active heart rate, even though she is relaxed and starting to drift off a little bit. This is not normal for her. I readjusted the pulse ox probe to make sure that there was good contact on her skin, double checked the portable o2 tank, and checked Aubree to make certain that she was as expanded as possible (not hunched over compressing her lungs). Everything checked out, but Aubree's o2 sat was still lower than normal and her heart rate higher than normal for her activity level. I turned her o2 tank up to 1.5 liters from 1 liter, and her sats returned to the 97 and above that they usually are. Her heart rate remained relatively unchanged. We continued strolling since Aubree was finally able to relax a little, and her vitals remained unchanged throughout that time. <br />
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We got home from our walk, and, needless to say, Aubree remained on the monitor and on the 1.5 liters to keep her comfortable. It was late afternoon, and Daddy would be home within minutes. He got home, we assessed the situation together, and he watched Aubree while I called the after hours clinic about getting Aubree seen that night. While these were all seemingly tiny and normal changes (except having 02 requirements of course) for any baby that might be teething, etc., we really have to act on any change that Aubree displays to ward off anything that could potentially be brewing and severely take a toll on her. After several calls back and forth between the nurse, her conversing with the after hours pediatrician who was not very concerned because of the mild changes, and trying to arrange a location for Aubree to be seen with as little exposure as possible, it was recommended that we wait until the morning and see Aubree's regular pediatrician who happened to be on for the weekend. We were thankful for him to see Aubree since he knows her and her history so well. <br />
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That night, we watched Aubree like a hawk. Our poor girl was miserable and could not rest. It was even worse with her cpap mask on. Poor baby would thrash and cry on and off all night. The next morning, we loaded up and had the very first appointment of the day and went in the back to avoid all the potential germs in the front of the office. The pediatrician sees her, says her first ear infection cleared up, that the other ear was now infected, and that the pain during sleep and increase in o2 needs and heart rate was most likely a response to pain from the ear infection. He said her lungs sounded great and prescribed her a stonger antibiotic and some pain drops for her ears. Derrick and I had talked about the night before and discussed with the pediatrician if we needed to go to Arkansas Children's Hospital just to be on the safe side. With it being the weekend, Aubree would have to be admitted through the ER and could not be directly taken to the floor like we had done previously with an admit during the week. He did not think it was necessary. Also the potential exposure to RSV, the flu, pertussis, etc. in an ER setting would be too great of a risk unless Aubree was in a crisis situation. Aubree has never been anywhere but home, outside, and the doctor/hospital/housing for medical purposes in her life to help keep her as protected as possible. We seriously cannot be too careful because any tiny illness is potentially lethal for her because of her lungs being so restricted. Our pediatrician told us he would be on call throughout the weekend and to just have him paged if we needed anything at all. <br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiX05-oE5Yv-4CfAiMYqdVCESA2GmUjVBevoclv_E3XqzTXy_fRPhGB_8vdfOFS8tmoj8piFKcD31XaI9MjqVy_I0DE3XuilmOtMvn7xnUqbJVZjcUFWSj15jhUXa17yeafwr1fGbJTsMA/s640/blogger-image-711899056.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiX05-oE5Yv-4CfAiMYqdVCESA2GmUjVBevoclv_E3XqzTXy_fRPhGB_8vdfOFS8tmoj8piFKcD31XaI9MjqVy_I0DE3XuilmOtMvn7xnUqbJVZjcUFWSj15jhUXa17yeafwr1fGbJTsMA/s640/blogger-image-711899056.jpg" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">After the doctor's appointment, not feeling great but still having some fun. Aunt Amber taught her to hold the phone to her ear. So cute, even though you can tell she doesn't feel her best. </td></tr>
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After the appointment, Aubree fell asleep in the car seat as we drove around waiting for her meds to be filled. We kept driving to let our poor girl finally get some rest. That afternoon, she seemed tired, but not any different than the last 24 hours. As soon as it got dark outside that night, our sweet babe started getting gradually worse. She started retracting, sweating, and needing 2 liters of o2 to maintain her sats. Of course, we immediately paged the pediatrician. We again discussed the option to go to ACH with him. He said that he did not think it was necessary. I told him I really wanted to get a blood gas and chest xray to make sure nothing was brewing. He arranged for us to have Aubree seen with an ER doctor locally (under extreme precautions taken by us and the staff) to have the blood gas and chest xray done. <br />
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At the ER, there was literally no one there (this is the same ER I have left before because the wait is usually so ridiculous). Thank you Lord for even less exposure! The chest xray and blood gas came back normal, and the ER doctor saw no need to do anything else and sent us home. He did give her an antibiotic shot to help speed along the healing of the ear infection since the pain associated with it was the only thing that really seemed to be an apparent issue causing this chain of events. By the time we got home in the wee hours of the morning, we were all exhausted but thankful everything came back good at the ER . We put the cpap mask back Aubree like we do every night and the poor thing screamed and was restless through out the night/morning. By this point, we had called in reinforcements for Aunt Amber, who joined us on our trip to the ER and helped us take shifts watching and trying to console Aubree while we tried to get just enough rest to function.<br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgPy6UtbkseEQBsOyueplhjyGptiMGoRm04-xf1J1-vP6TVnzC8U7yqjF-hBCnzvlaCHMxYV_AbzhGNOa79_uRmOwh7iSdpMST-qKfrcmiO74767ARYktS1xjirYyPKC2hDyytKYI7sRLQ/s640/blogger-image-1317033812.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgPy6UtbkseEQBsOyueplhjyGptiMGoRm04-xf1J1-vP6TVnzC8U7yqjF-hBCnzvlaCHMxYV_AbzhGNOa79_uRmOwh7iSdpMST-qKfrcmiO74767ARYktS1xjirYyPKC2hDyytKYI7sRLQ/s640/blogger-image-1317033812.jpg" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">At the ER to have a chest xray and blood gas. She loves phones! This night in the ER, she also figured out how to make a kissy sound, but with her tongue. She loves us making kissy sounds to her and wanted in on the fun. Our tough girl, reaching milestones in the midst of feeling rough. </td></tr>
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The next day, Aubree rested somewhat after the cpap mask was off and would play just a little, but she just not her happy perky self. Also, we had to bump her o2 up to 3 liters if she got upset at all. Of course, with every change, we called our pediatrician who was on call (another blessing that her doctor was the one on call for the weekend). I honestly lost count of how many times we called him and he called us throughout the weekend. We also emailed and spoke with our pulmonologist at CHOP. Without telling him the opinion of our pediatrician, he also agreed that the increased heart rate and o2 needs were most likely due to the pain response from the ear infection. Both doctors agreed that we were doing everything that could be done for her at home and to just keep doing what we were doing.<br />
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I also had the oxygen supply company bring out a new oxygen concentrator. I had been getting the run around from them for a couple months about getting a new one because it could not give the amount of o2 it was supposed to. It was supposed to give up to 5 liters, but would not even give the 3 liters she was requiring. Thus, we had to use her portable and emergency tanks, which we were burning up quickly. Thankfully, the on call respiratory therapist that Sunday was able to bring us a new, functioning oxygen concentrator and some more tanks. We were so thankful to have a constant supply of oxygen and the ability to go up to 5 liters if we needed to. <br />
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That afternoon and evening, Aubree was very tired and slept many hours just laying upright on Daddy's chest. Anytime she wasn't in an upright position, she acted very uncomfortable. That night, as we were putting Aubree to bed around 10 pm, she had the faintest cough. She had also started running a mild temp that we were treating. We took note of these change and decided to take her to the doctor the next morning. That night, we also just left her on her normal oxygen and did not put her on cpap so that she might get some rest. Aubree was exhausted. I sat up watching her most of night since she was propped almost upright with pillows since that is the only way she felt comfortable. She had the same mild cough a few times throughout the night and, while she was still very restless and stirring, got more rest than she had been getting. <br />
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First thing in the morning (this is Monday and everything started on Friday afternoon), I called and we were able to get Aubree the first appointment of the day with her pediatrician. Still a huge blessing that he was on and able to see her since he had been so involved in the happenings of the weekend. Also, it was so early Daddy had not yet left for work, and he was able to take us. Aunt Amber was thankfully starting her spring break and was also with us every step of the way. At that appointment, the pediatrician listened to her chest and thought he heard an ever so slight crackle that he had not heard on Saturday. He gave her another antibiotic shot, tested her for RSV (which came back negative), and sent us to our regional ACH clinic to have a chest xray and blood gas done just to be on the safe side. <br />
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To be continued in Part 2: All Things ACH and Some Flying <br />
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiX05-oE5Yv-4CfAiMYqdVCESA2GmUjVBevoclv_E3XqzTXy_fRPhGB_8vdfOFS8tmoj8piFKcD31XaI9MjqVy_I0DE3XuilmOtMvn7xnUqbJVZjcUFWSj15jhUXa17yeafwr1fGbJTsMA/s640/blogger-image-711899056.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"></a>Audrahttp://www.blogger.com/profile/08364511458490360345noreply@blogger.com0tag:blogger.com,1999:blog-6300746110762910008.post-61518977649632106042013-03-03T20:45:00.002-08:002013-03-03T20:45:31.610-08:00Aubree is 10 Months Old!<div class="separator" style="clear: both; text-align: center;">
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We are so enjoying our time at home with Aubree! I know I keep saying this, but she seriously gets more fun everyday! Her personality is really shining through. Aubree is so sweet, loving, joyful, and has strong opinions. She is a girl who knows what she wants! She has all of the sudden started to do so many things, and I really want to record them so we don't forget any of the milestones that we are praising God for! He has done a miraculous work in her life and has blessed us immeasurably with Aubree! <br />
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* I already posted this on Facebook, but want to have it here, too. On February 19th, Aubree's physical therapist and I were trying to get Aubree to wave bye to her. Instead, she just blurted out bye. Then, she told my Granny bye several times on the phone the same day. Daddy worked with her some more on it that evening,<span class="text_exposed_show"> and she has it down! Then, on February 22nd, <span class="userContent">Aubree said Amber (without pronouncing the m or r) many times, especially when she was on the phone on speaker. That night, we were working on Mama, and Daddy was recording our little chatterbox. Right after he stopped recording, she blurted out Mama plain as day. To say I was excited would be an understatement! She hasn't said Mama again, but still chatters and "talks" quite a bit. Aubree used to "talk" some, but not consistently. After she said bye to her physical therapist, I started praising her everytime she would talk. She loves praise, so now she talks all the time! She has figured out it is pretty fun! Thank you Lord for Aubree's voice and words! </span></span><br />
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*Aubree got her first tooth on February 23. Its on the bottom, middle right, and, in the words of Aunt Amber, "is the cutest tooth we have ever seen!" Aubree must really treasure this tooth because she is very secretive with it and acts like a snapping turtle if we try to take a peek. She clamps her lips shut and, if you can pry her lips open, pushes your finger with her tongue. Asleep and if she is crying (which is rare) are the only times we can get a good look at the cutest tooth in the world. <br />
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*The day after she got her first tooth, she decided to clap and wave on the same day. Daddy was working on getting Aubree to wave at him, and he was successful. Its not a typical hand wave, but one with the full arm engaged. We love it! We were praising her (the girl LOVES praise) by clapping for her for waving, and she started clapping along with us. We had been working on clapping in physical therapy and at home, so we were thrilled to see her accomplish this goal!<br />
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*Speaking of Daddy, someone is becoming quite the Daddy's girl :) She still loves Mama, but is elated when Daddy comes home. She reaches for him quite a bit and sometimes will start to fuss, and then we figure out it is because she wants Daddy. I can't blame her; I'm pretty fond of her Daddy, too :)<br />
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*Aubree still loves dancing, and Daddy has even introduced her to the Harlem Shuffle music which she dances to. She keeps us laughing!<br />
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*Our big girl loves standing assisted and will reach and grab our fingers to stand up. She also will stand up if holding onto the ottoman and will take steps around it. Aubree will also pull to stand from her activity table and other toys that height. <br />
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*New foods Aubree has liked are Progresso chicken noodle soup, homemade tomato soup (featured in the picture below with her hair in a ponytail), cheerios, creamy fruit pops, baked sweet potato, homemade bread, and homemade smoothies. Baby food just isn't as appealing now that she has tasted the good stuff :) <br />
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*Aubree is loving bath time! She loves splashing in the water and playing with floating bath toys. She isn't really fond of having her hair rinsed, but other than that thinks baths are great!<br />
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*Aubree is a lover just like her Mama! Anyone that knows me well knows I am a hugger, and Aubree is very affectionate, too. She will lay her head down with her arms on you and give you "lovins." It of course melts our hearts! A few nights ago, Mo was laying close to her, and Aubree was petting him and then laid her head down and gave him some "lovins." Too sweet! She loves her puppy, and Mo is so good with her . <br />
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*Poor baby has had the slightest bit of nasal congestion and is working on another tooth. We took her to the doctor last week (on the well side, went straight back, kept her covered, etc. with precautions) to be on the safe side, and she has a right ear infection. The doctor was shocked she hadn't been really fussy (she had only been just a tad more fussy) or waking in the middle of the night like most babies do. Aubree is one tough cookie! She will start some antibiotics to get rid of the ear infection and ward off anything that might come from the little bit of nasal congestion. Her lungs sounded clear as a whistle! We are doing everything in our power to keep Aubree well (this was actually her second time out of the house since coming back home from surgery and only my third). This is especially important because of her decreased lung volume. If she were to get sick, it could get really, really bad very fast and could have lifetime consequences for Aubree. Also, she has to be well at least 2 weeks prior to surgery, or it has to be postponed. Rescheduling is not something that is easy to do when the inventor and world expert on VEPTR does her surgery! While it might sound extreme to keep Aubree and I at home all the time, we just have to be so super cautious with her. We honestly have great days playing at home together, and I am a homebody anyway from being raised out in the country. Our pediatrician commended us for keeping her in, especially this year when they had a record-setting number of sick children visits in the month of January (more than they have ever had in 25 years of practice), with many of those being flu, RSV, and pneumonia. Thank you Lord for keeping our sweet daughter safe in the midst of all of the sickness going around! <br />
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Thank you to everyone who keeps up with Aubree and for continuing to lift her (and us) up in prayer. We are right at about a month away from leaving for Philadelphia for Aubree to having her VEPTR implant surgery on the left side. The actual surgery date is April 9th. Please be praying for Aubree's health and healing for this surgery as well! Speaking of Philly, Aubree's Jeunes buddy Madden is extubated again and is making progress everyday towards less breathing support. Thank you all for praying for him as well in his recovery.</div>
Audrahttp://www.blogger.com/profile/08364511458490360345noreply@blogger.com2tag:blogger.com,1999:blog-6300746110762910008.post-79496923545479435822013-02-14T16:12:00.001-08:002013-02-14T16:12:35.710-08:00No Greater Love<div class="separator" style="clear: both; text-align: center;">
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On this Valentine's Day, I am so thankful for the most precious little love in my life, Aubree. We are so thankful to God that He saw fit for Derrick and I to be blessed with our sweet daughter. We love you so much, Aubree! She brings us so much joy and laughter and truly gets more fun every day. Pretty much since Aubree's birth, we have tried to enjoy each day and the blessings in it and try not to worry about the future. We just have to trust in God to take care of the things that are out of our control and know that He has a plan for our family, even if we do not know all of the details of that plan yet. Also, on this day celebrating love, I am most thankful for the love God has for me and all of us. He gave us the greatest gift of all when He sent Jesus to die on the cross for our sins. Honestly, having hope in Jesus as our Savior and for far greater things when this life is over helps us deal with the hard things that come along with Aubree's diagnosis. <br />
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Aubree is now 9 1/2 months old and is starting to pull up and will take a step or two while holding on. She loves standing and will reach for our hands so that she can push herself up. She is making progress toward crawling, but still strongly dislikes tummy time from all of the pain it caused her when she had terrible reflux. She also has great balance when sitting. Aubree is a hard worker and has made so much progress in regaining her skills after surgery. She has now regained the skills she had before surgery and is working on new skills now. Go Aubree! <br />
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Also, not just on Valentine's Day, I am so very thankful for my husband Derrick. He is the very best Daddy in the world to Aubree, and she lights up every day when he comes home from work and reaches for him. She thinks he is the funniest person on the planet and he always gets so many giggles out of Aubree. Not only is he so great playing with Aubree, he is also such a big help. Raising a child, especially a child with special needs and tons of medical equipment to juggle and maintain, is not for the weary. It gives new meaning to the word teamwork, and I couldn't imagine having anyone better on Team Aubree than her sweet Daddy. I love you babe! <br />
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Sorry for the picture overload, this baby is just seriously cute! Below are some pictures taken by me and my sister Amber of Aubree for Valentine's Day. Amber was going to take pictures of her students for Valentine's Day with this cute background she made and let Aubree be the test model for it. I love how they turned out! Aubree has also been spoiled by having Aunt Amber come stay with us for awhile while Amber's roommate was under the weather. We have all enjoyed getting to spend extra time with her! <br />
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Audrahttp://www.blogger.com/profile/08364511458490360345noreply@blogger.com1tag:blogger.com,1999:blog-6300746110762910008.post-66290877646314859162013-01-27T14:06:00.001-08:002013-01-27T14:44:06.955-08:00Thankful to Be Back HomeSorry for such a delay in updates! It is much harder to find time to do a blog post now that Aubree is basically back to her normal self of super active and not knocked out in the hospital bed on pain meds. :)<br />
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We are so very thankful, elated, and relieved to be home! We had absolutely wonderful weather driving back home, and Aubree was a trooper the whole time. We kept her on her Motrin schedule for pain, which seemed to manage it great. Our house was spic and span thanks to my sweet sister Amber and friend Bailey who came and gave the house a good scrubdown before we got back. Another sweet friend Sarah bought groceries to fill our pantry and fridge so that we would have some things to eat once we got home and not have to immediately go to the store. Thank you all so much for making our homecoming stress free! Amber also had a big pot of homemade vegetable beef soup warm and on the stove for us. While the restaurant and convenience foods we ate while Aubree was in the hospital served their purpose, we were so happy to eat home cooked foods again after having to eat out so much. <br />
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Speaking of food, Aubree has really taken to eating real food. Anytime she sees us eating, she will fuss at us until she gets a bite. She has had chicken and dumplings broth, noodles out of a pasta dish, tiny bits of steak, couscous, biscuits, cheese, homemade pizza crust, and frozen yogurt. She is still loving Ritz crackers, apples, yogurt, baby cereal puffs, and some baby foods. We are so thankful she likes eating real foods since bottles have never really been her favorite since she developed bad reflux (the reflux has been resolved for a while now). <br />
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I would say Aubree is 95% back to her old self. She is dancing to music that her toys play (this really is hilarious, and I have got to get it on video), jumping in her jumper, sitting up independently, and laughing at things she thinks are funny. Last week on Friday, we discontinued all pain meds, and she is doing great. All of her steri-strips came off after her first bath once she got home and her incision looks great. It looks better that what I had anticipated. Concerning feeding, Aubree probably takes about 1/2 or more of her bottles by mouth and the rest down the gtube. Sometimes, she just wants real food and doesn't want the bottle. Can't say I blame her! <br />
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Aubree starts back up with PT this week, had her weekly weight checks and assessments from home health last week, and had a checkup with the pulmonologist. The pulmonologist back home is wanting to be extra cautious about her not tiring out from a respiratory standpoint and wants her on cpap a little bit more and at a reduced pressure of 6 during the day than what we were discharged with. It won't hurt anything, so we are fine with that for now. <br />
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Also, we have asked you all to pray for Aubree's two Jeunes buddies who are her age, Madden and Will. Madden, who had his VEPTR surgery around the time Aubree did, just had a successful extubation to cpap this week. Praise the Lord for this! Madden has struggled with a cold and a few other issues post op, and this extubation is a huge step in the right direction for him to get to go home to Florida. I know him and his mom are ready to be back home because they have been at CHOP or Ronald McDonald House since October. Please keep them in your prayers! Will, who came for evaluation for VEPTR, got a good report of wait and reevaluate. He is currently compensating for his smaller chest, so the doctors are going to see him back in 6 months to see how he is doing. Please pray for him as well, for his chest to grow and for him to keep compensating well! Will you also pray for two other Jeunes babies, Lauren in Texas and Zoey in British Columbia, Canada, as their families have important appointments coming up and big decisions to make regarding future medical intervention. <br />
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Thank you all again for all of the sweet words of encouragement and prayer throughout this journey. We are so thankful for you all and know that you all crying out to God on our and Aubree's behalf has made a tremendous difference. The peace we have felt from God throughout even the rockiest of times throughout this process has been like nothing I have ever experienced before. Thank you Lord for comfort in times of need! We also attribute all of the healing taking place in Aubree to God's work in her life. Thank you Lord! <br />
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Here are some pictures of Aubree now that we are home sweet home!<br />
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Audrahttp://www.blogger.com/profile/08364511458490360345noreply@blogger.com2tag:blogger.com,1999:blog-6300746110762910008.post-37818829908983429712013-01-19T10:59:00.001-08:002013-01-19T14:27:22.988-08:00Lady and Papa to the Rescue!Ever since Aubree was born (and even before), Derrick, Aubree, and I have been supported, prayed for and loved by so many. Once we found out about Aubree's diagnosis and the wheels started turning for her to have a consultation in San Antonio for the craziest, potentially life-saving surgery we had ever heard of, our close friends and family who knew what we were planning rallied around us with support. Derrick's parents, Lady and Papa to the grand kids, quickly offered to accompany us and help in any way they could. So, we took a caravan of 2 vehicles down to San Antonio where they made arrangements for us to stay, super cleaned the room before we took Aubree in, and accompanied us to all of the different tests and appointments there. Their help and support was invaluable in that experience. On the way back from that trip, Rick and Deb started getting the ball rolling to purchase the awesome RV that they have now. While it had been something they had been thinking about, I believe that the future of many surgeries for our blue-eyed baby girl got that ball tiling even faster. <br />
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Fast forward to late November, early December. We knew that the time would be coming for Aubree to travel to CHOP at any moment. Again, Lady and Papa were on board and said to just tell them when to leave and they would be there. With less than a week's notice from the hospital, they accompanied us on the journey to CHOP. <br />
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And they have been with us every step of the way. All of the travel and lodging up there, staying with us for much longer than we anticipated being in Philly, missing their usual Christmas traditions back home, and the journey back home. Waiting with us while Aubree was back in a procedure or in surgery. Not to mention washing our clothes, Aubree's bottles, bringing us meals, getting us medicine, and anything else we needed to help us be with Aubree around the clock. Not to mention making the Ronald McDonald House room homey and decorated for Aubree's first Christmas. And most of all, the emotional support they provided for us and extreme sacrifice they made to be there for us. <br />
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Lady and Papa, I cannot adequately put into words how much we appreciate all that you have done, not only in support of Aubree but of us as well. We could never thank you enough. We love and appreciate you! <br />
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The pictures below are from September when we took Aubree to San Antonio for her first VEPTR consultation. They are some of my favorites! <br/><br/><div class="separator"style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgm-UXLew81p6y_f8NVawDFlO0cyEMwWPcAdzP4OUUkJnkjq86bVCtiyrrxrb5vtDOUqSe2520dBWQiMy7MXZQDQY-CIyR14RovqzL3vncQtH2_yie3n62QK3wWxc9P3JHmmZMHhr8PudM/s640/blogger-image-1943027361.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgm-UXLew81p6y_f8NVawDFlO0cyEMwWPcAdzP4OUUkJnkjq86bVCtiyrrxrb5vtDOUqSe2520dBWQiMy7MXZQDQY-CIyR14RovqzL3vncQtH2_yie3n62QK3wWxc9P3JHmmZMHhr8PudM/s640/blogger-image-1943027361.jpg" /></a></div> <br/><br/><div class="separator"style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiF_Y_A9JxztJoPqs_eLFf7EniuMe0hqmEmiDnA5qngIL5GuzaW_ncAH_xNatknTNk6f4KgebXyYvSTD7jzPL32_lH8WvJTDYOfJ7QOV-GrFQRIdZSi3SApaJMy_hdhTGeykgfhkQ6t6QM/s640/blogger-image--1619884257.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiF_Y_A9JxztJoPqs_eLFf7EniuMe0hqmEmiDnA5qngIL5GuzaW_ncAH_xNatknTNk6f4KgebXyYvSTD7jzPL32_lH8WvJTDYOfJ7QOV-GrFQRIdZSi3SApaJMy_hdhTGeykgfhkQ6t6QM/s640/blogger-image--1619884257.jpg" /></a></div> <br/><br/><div class="separator"style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg5rEXVaSA8GmAd1gQOT-aqF0TkgNSJ8BlPEaIjcu__iJrb0LUvilkkLDze_kd-gRuDIISr29hkAb2-NapjLFesjJpl-2mvPs055y4IBaqjAyH2MMNU-tNl5I1A7AwBzak5TCFevkM60EY/s640/blogger-image--600745730.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg5rEXVaSA8GmAd1gQOT-aqF0TkgNSJ8BlPEaIjcu__iJrb0LUvilkkLDze_kd-gRuDIISr29hkAb2-NapjLFesjJpl-2mvPs055y4IBaqjAyH2MMNU-tNl5I1A7AwBzak5TCFevkM60EY/s640/blogger-image--600745730.jpg" /></a></div> <br/><br/><div class="separator"style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhENRtpEFGsLkagiWz4v2Z_9gz2Sjo12Kar0UtT_ExJ3kab4mAGauKigZELXaFrLB84p4evdi-AtpMrVAhb0uj8L17JedreWhY-fS2dRrllAe1ld6fKO8flxev15KstY4XNQOM1ja8Z4xY/s640/blogger-image-1589708725.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhENRtpEFGsLkagiWz4v2Z_9gz2Sjo12Kar0UtT_ExJ3kab4mAGauKigZELXaFrLB84p4evdi-AtpMrVAhb0uj8L17JedreWhY-fS2dRrllAe1ld6fKO8flxev15KstY4XNQOM1ja8Z4xY/s640/blogger-image-1589708725.jpg" /></a></div>Audrahttp://www.blogger.com/profile/08364511458490360345noreply@blogger.com0tag:blogger.com,1999:blog-6300746110762910008.post-65692544778557609022013-01-17T20:44:00.001-08:002013-01-17T21:49:44.834-08:00So Much Progress & Discharge on FridayAubree has been a "rockstar" as the nurses have been calling her since she got to the pulmonary floor. She got completely off of morphine and has switched completely to Tylenol and Motrin for pain for the last few days. Seriously, no narcotics after less than 2 weeks with 16 ribs still fractured? We've got one tough girl and one amazing, healing God!<br />
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Physical and occupational therapy have come by and worked with Aubree and said she is making great progress to getting back to where she was post op. One of her biggest issues is regaining her balance and center of gravity. The surgeon gave her a slight bit of scoliosis when he implanted her VEPTR device because it is slightly big for her, but the next smallest size was too small. Better too big than too small since we are tryin to expand her chest so that her lungs can grow as much as possible. So, the scoliosis paired with the 2 ounces of titanium in her back plus 16 fractured ribs changing her physiology, it only makes sense that she kind of has to monitor and adjust from what she knew before. But her progress is great and she is sitting supported very well and sits unsupported for a couple seconds at a time. She is controlling her head and neck great! <br />
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Speech came by to watch her eat solids and a bottle to be able to clear her for eating by mouth. She ate baby food and drank a bottle like a champ with no issue of choking, coughing, or potential aspiration. Aubree has been drinking almost all of her bottles by mouth with whatever she doesn't take by mouth going down the gtube. She has also been eating baby food and anything else she can get her hands on! Seriously, she fusses at us if we are eating in front of her and don't give her some food as well. She has tried blueberry muffin, cheddar puff corn, soft pretzel, apple slices, mandarin oranges, and strawberry nutrigrain bar. We are so excited she is wanting to taste and try food and that she is enjoying it so immensely! Aubree probably wishes I would give her bigger bites, but I am terrified of giving her too big of a bite and her choking. So, I just make sure I give her the tiniest morsels possible that even a mouse could not choke on :) <br />
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Also, albuterol treatments have been discontinued. Aubree is also only on Cpap during sleep (pressure of 8 with 2 liters o2 on the pixie, 1 liter on the ram cannula) and on 1 liter o2 through nasal cannula when awake. This is just slightly more support than she had before surgery. This is not unexpected because she is still healing from surgery and still has fluid around her lung where the surgery took place. As that fluid is transformed by the body as she heals, her lung will be able to expand more and she will be able to hopefully have gradually less support. <br />
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With all of this amazing progress, the plan is for us to be discharged tomorrow! She sat buckled in her carseat for two hours today just to make sure she wasn't in pain or struggled from respiratory standpoint. She passed the carseat study with flying colors, so we are confident she will be able to ride home in her carseat with no adaptations or further padding. We are so thankful to be in a place to take our sweet girl home! She is probably 95% back to her normal self. Please pray for our travels as we make the long trek back home and for Aubree to continue to get stronger. We are praying for an uneventful trip home! <br />
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We give all the glory to God for the healing and progress taking place in Aubree. He has sustained Aubree and us throughout this journey, and we continue to trust in Him as we continue on the journey to give Aubree the lung volume she needs to survive and thrive. Thank you all again for standing alongside us in prayer and support. We so appreciate it! <br />
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Additionally, please keep remembering the two other Jeunes babies who are a<br />
Here at CHOP. Madden has still been battling some issues that keep him from being extubated. Please pray for him to be successfully extubated soon! Also, Will, who came for outpatient consultations and testing, is inpatient tonight after acting different after some sedation yesterday and a fever tonight. Please pray for him to be on the mend soon. (Sidenote: Madden's mom Mandy, Will's mom Mary, and I got to briefly meet on Monday. So thankful to have these moms who are in similar circumstances as a support system!) Both of these families so desperately want to go home with their babies as soon as safely possible! <br/><br/><div class="separator"style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhXoD8XeT84_2HpHHB5rqLeBFCjcWTEnmN9jnIgoNh1W9SpPyhjR2gm3jgPj7XYAhMkgvy-4nAq2P-j892MJCrusbjzlXuyOVnP8HNLfFLeTT1t-ZxgFpxieyZLZ2XwGFFWhakFsNjHV3Y/s640/blogger-image-1184406649.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhXoD8XeT84_2HpHHB5rqLeBFCjcWTEnmN9jnIgoNh1W9SpPyhjR2gm3jgPj7XYAhMkgvy-4nAq2P-j892MJCrusbjzlXuyOVnP8HNLfFLeTT1t-ZxgFpxieyZLZ2XwGFFWhakFsNjHV3Y/s640/blogger-image-1184406649.jpg" /></a></div> <br/><br/><div class="separator"style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhMhoc1UTLM-j0VB09PgfLHxf4q2VP3SCnSnx-KvslbJu5hygqIc2ePywXBWUasDKGsMcf1miIM4sEs5LCYIH7ECzCkxzuMlPRA4MMiWmLNACzd6iSJhyphenhyphenX9DurpXg4R-qORDHVpQoAOTp8/s640/blogger-image--1038792688.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhMhoc1UTLM-j0VB09PgfLHxf4q2VP3SCnSnx-KvslbJu5hygqIc2ePywXBWUasDKGsMcf1miIM4sEs5LCYIH7ECzCkxzuMlPRA4MMiWmLNACzd6iSJhyphenhyphenX9DurpXg4R-qORDHVpQoAOTp8/s640/blogger-image--1038792688.jpg" /></a></div> <br/><br/><div class="separator"style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgfzJrmrOLkimw8sSCTT8zSUPMduuXIJ09yoXK7HGkMH2K6_Hk14SBcjRYFHahGO2p8RpatZtlf2zpQCfxG7stf0BBqQz8Xdm_Q-Gue6-Rb5IkSgVXQvO3D038fmS4CdNQ4jZHpXEcEJ2s/s640/blogger-image-1061532430.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgfzJrmrOLkimw8sSCTT8zSUPMduuXIJ09yoXK7HGkMH2K6_Hk14SBcjRYFHahGO2p8RpatZtlf2zpQCfxG7stf0BBqQz8Xdm_Q-Gue6-Rb5IkSgVXQvO3D038fmS4CdNQ4jZHpXEcEJ2s/s640/blogger-image-1061532430.jpg" /></a></div> <br/><br/><div class="separator"style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhtOHsMjYe1Qtw_asKx7nU5glXrViqZ3RPtFNWVP1JYpz11rLH5CFBHJNC_gfXp6r0SvAcnHpPqf4eCZqDfo-u1FvYSvoOpbilZn827pNq3XScCPKskYR1ih8viUC64kbJO6Xu0vcXGAPk/s640/blogger-image--1034232341.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhtOHsMjYe1Qtw_asKx7nU5glXrViqZ3RPtFNWVP1JYpz11rLH5CFBHJNC_gfXp6r0SvAcnHpPqf4eCZqDfo-u1FvYSvoOpbilZn827pNq3XScCPKskYR1ih8viUC64kbJO6Xu0vcXGAPk/s640/blogger-image--1034232341.jpg" /></a></div> <br/><br/><div class="separator"style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgMBhIqS5DPKSA8EBatIC0u-9hNU3uI9iqfsAepbDNCrhia1MoLNIqcCRVQp6BOjzPDXxZ7AblDVWlBoryzqYg7ir-CwhwfzsIcoyZYZlFyujg_7d1ND7gl6bdDrUe0LPccWHp_2WzIAzs/s640/blogger-image-1975600527.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgMBhIqS5DPKSA8EBatIC0u-9hNU3uI9iqfsAepbDNCrhia1MoLNIqcCRVQp6BOjzPDXxZ7AblDVWlBoryzqYg7ir-CwhwfzsIcoyZYZlFyujg_7d1ND7gl6bdDrUe0LPccWHp_2WzIAzs/s640/blogger-image-1975600527.jpg" /></a></div> <br/><br/><div class="separator"style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgxhNeabUnahs2RRzQjyq-flcuSuaKENEOVYhEf0F9z7M9kw4DaJU-2dn-C5RkNXsNdxV4eilre4_WXKNlEu7j6Zw2NMh5vy9DVZx8bEPds3Dkyd308TXtltvrEtNcmO674z5F2Rx3amBs/s640/blogger-image--746485757.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgxhNeabUnahs2RRzQjyq-flcuSuaKENEOVYhEf0F9z7M9kw4DaJU-2dn-C5RkNXsNdxV4eilre4_WXKNlEu7j6Zw2NMh5vy9DVZx8bEPds3Dkyd308TXtltvrEtNcmO674z5F2Rx3amBs/s640/blogger-image--746485757.jpg" /></a></div>Audrahttp://www.blogger.com/profile/08364511458490360345noreply@blogger.com3tag:blogger.com,1999:blog-6300746110762910008.post-28634845004010293032013-01-13T18:23:00.001-08:002013-01-13T19:15:30.718-08:00So HappyWe are soooo happy to be back on the pulmonary floor! We made so many friends with the staff on this floor, and Aubree got lots of admirers during all of her pre-op time here. Many of them have come by to greet Aubree since her return, which means so much to us that our girl is so cared for. Her nurse once we got to move yesterday and all of today was a sweet nurse named Cheryl that she had previously. She was just so sweet, and it was great to have someone who already knew us and Aubree. There is so much more privacy and less traffic on this floor, meaning less of Aubree crying as fewer people are coming in and out. She might be getting just slightly less anxious with the staff, but not much. We will take any progress we can get in this area! <br />
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Aubree is getting stronger and making more progress everyday! She is taking longer and longer sprints off of the cpap and onto the nasal cannula with o2. She sat up unassisted today for a few spurts today. She has also been playing with toys and has gotten her voice back. She has been talking and mocking our sounds like crazy today. So good to be getting our girl back to herself little by little! I have also been climbing up in the crib and playing with Aubree, which we have both loved! Dad and I have also enjoyed getting to hold our girl!<br />
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Aubree's Jeunes buddy Will made it to Philly today with his family. Please pray for his family in the coming days for the appointments, tests, and recommendations they have in the days to come. Today is also Aubree's Mammee's (my Mama's) birthday. Happy birthday to her from CHOP! Aubree is also wearing a gown especially made for her for after surgery. Thanks to Andrea Segal and her mom Denise! <br/><br/><div class="separator"style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgwI4UH64O79P69cplAirfYgLdEnw2eAAe5omqbHvF5woj9a-yPAUDzwT1aRMgKk3BORAY6_FtP8mqErB_ZnIG103FSN2RJoxKIzDfWh7-eLSqz-WZk1nmTZ40Ky_jYd5TAp4V8xjaPn-Q/s640/blogger-image--1385867588.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgwI4UH64O79P69cplAirfYgLdEnw2eAAe5omqbHvF5woj9a-yPAUDzwT1aRMgKk3BORAY6_FtP8mqErB_ZnIG103FSN2RJoxKIzDfWh7-eLSqz-WZk1nmTZ40Ky_jYd5TAp4V8xjaPn-Q/s640/blogger-image--1385867588.jpg" /></a></div> <br/><br/><div class="separator"style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhF2YIN2AoAxXDnesRgv4pw4rs2h7X-0TZNr2C1uH6JsFwUtv0EyUB1kvCShDCi4Yzc8N47AJXnpRaQ0deaIJ-wYdJQ8Ti4ySs__h-Nd0X8ynAcqP0bFHLeeeWu51RV2cGvQ4JK0SiJiWA/s640/blogger-image-761018492.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhF2YIN2AoAxXDnesRgv4pw4rs2h7X-0TZNr2C1uH6JsFwUtv0EyUB1kvCShDCi4Yzc8N47AJXnpRaQ0deaIJ-wYdJQ8Ti4ySs__h-Nd0X8ynAcqP0bFHLeeeWu51RV2cGvQ4JK0SiJiWA/s640/blogger-image-761018492.jpg" /></a></div> <br/><br/><div class="separator"style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjs0mfdiwpcOIbSpSPHqHHGnCX12qLrmvdOBJ8qg18Q5AS_k_DIeWoJkPzNJ2hF9Kq_gyhLQumKAnMF8qSL-2RjJ_Lte2XnGJJC93kJFyV1xcfGadts_q29CEu9sgy25i7hrOZl2j0tCHw/s640/blogger-image-837396189.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjs0mfdiwpcOIbSpSPHqHHGnCX12qLrmvdOBJ8qg18Q5AS_k_DIeWoJkPzNJ2hF9Kq_gyhLQumKAnMF8qSL-2RjJ_Lte2XnGJJC93kJFyV1xcfGadts_q29CEu9sgy25i7hrOZl2j0tCHw/s640/blogger-image-837396189.jpg" /></a></div> <br/><br/><div class="separator"style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjs9BOAKI1tujNDEn69MDJo7zS3BMKgtHqL8XqwIsCbKIJHQPZcxa05c9jHMiHLQen0Ha_lulI7BPE9hmU4O5Sbpxg3wa2MnIMK2DSsXHF-R3_gt6kN58fK_soVBPUS7iaZOUyNI2CsPh8/s640/blogger-image--453121161.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjs9BOAKI1tujNDEn69MDJo7zS3BMKgtHqL8XqwIsCbKIJHQPZcxa05c9jHMiHLQen0Ha_lulI7BPE9hmU4O5Sbpxg3wa2MnIMK2DSsXHF-R3_gt6kN58fK_soVBPUS7iaZOUyNI2CsPh8/s640/blogger-image--453121161.jpg" /></a></div> <br/><br/><div class="separator"style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhJUBi5m1ug-KUydIdhd2T9ju-dC7kn1WRu1SD3QlHEKRHoXOjwh-_cwfJNp0qHDa0YUCQthKTXs0hOHQqDCGPNNBDAEPi7k3xA0ZD7Fqxzs5HBwj_4x4KL3xY3f-QPp7Cz17CAAW0mwvg/s640/blogger-image--1907077691.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhJUBi5m1ug-KUydIdhd2T9ju-dC7kn1WRu1SD3QlHEKRHoXOjwh-_cwfJNp0qHDa0YUCQthKTXs0hOHQqDCGPNNBDAEPi7k3xA0ZD7Fqxzs5HBwj_4x4KL3xY3f-QPp7Cz17CAAW0mwvg/s640/blogger-image--1907077691.jpg" /></a></div>Audrahttp://www.blogger.com/profile/08364511458490360345noreply@blogger.com2tag:blogger.com,1999:blog-6300746110762910008.post-31277339337306217542013-01-12T11:08:00.001-08:002013-01-12T16:52:27.987-08:00Moving on Up...to the Pulmonary FloorAubree has done 2 days of sprints off the Cpap machine onto a nasal cannula of 1 liter of o2. The first day, she did 2, 2 hour sprints and did great. The second day, yesterday, she did 2, 3 hour sprints like a champ. She is currently a couple of hours into her second sprint today and is rocking and rolling! Also, yesterday we just did one ipv treatment, and they were discontinued today. The doctors and respiratory therapists said it is just not indicated that she needs them any more because she sounds really clear and doesn't really have any secretions. they are continuing the albuterol she was receiving through the treatments. Now, it is just every 8 hours through the RAM cannula while she is on Cpap.<br />
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During rounds yesterday, they said Aubree was doing so great with her sprints off Cpap and was stable enough to be moved to the pulmonary floor. Praise the Lord for progress! So, we packed everything up and got ready to go, only to find out the pulmonary floor was full. Today, they say a room has opened up, given us a room number, and now we wait for everything to be ready for Aubree to be there. (Update: just got to her new room!)<br />
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Other eventful things are that Aubree has no more IV lines in and can finally kick her legs around without no-nos (immobilizers) on them. Also, I have gotten to hold Aubree in the rocking chair for a couple of hours the last couple of days. She kind of cries when she is first moved, but settles down pretty quickly. Transitions are just painful from all the trauma her body endured from surgery, but they want her moving around so her muscles don't get stiff. Physical and occupational therapy have also started up, and Aubree has worked so hard to tolerate sitting assisted and laying on her side. She cries at first when she is put in a new position, but settles down after just a bit. It is hard to watch her struggle in pain, but she is so tough and is making progress every day!<br />
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Our most continuous struggle since Aubree had surgery is that she is something they are calling staffphobic. She just panics when people come in the room that aren't family because she is afraid they are going to hurt her. It only makes sense because the medical staff have to move her and it hurts, so she made the negative association quickly. We are hoping this passes quickly since her pain should be decreasing as time goes on. <br />
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Prayer requests include for Aubree's pain to subside when she is moved, for her to not be so afraid of the staff, and for her to keep making great progress respiratory wise. Also, keep remembering her other 2 Jeunes buddies in your prayers! Thank you all for the prayers, love, and support!<br />
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Below are some pictures of Aubree getting closer to being back to her playful self, me getting to hold her, and Aubree working hard with a therapist. <br/><br/><div class="separator"style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh_BIscv4HPTqyQclklUngd7NDu0wizVuDPGfr3GUKBA7OTE9IkZzPkHxPnNW4vZ8XtmxmP_hjawmIT74hszX9BHOG2dgCslULO_N9SkqFOOvbKjjVD0gBuSzBDeXuEuQDnftlnms39hZU/s640/blogger-image--1227942212.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh_BIscv4HPTqyQclklUngd7NDu0wizVuDPGfr3GUKBA7OTE9IkZzPkHxPnNW4vZ8XtmxmP_hjawmIT74hszX9BHOG2dgCslULO_N9SkqFOOvbKjjVD0gBuSzBDeXuEuQDnftlnms39hZU/s640/blogger-image--1227942212.jpg" /></a></div> <br/><br/><div class="separator"style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhr1nc_MJKlpBZ61oJQ-KdMjy8Qdh2vGwBffuXCalO0q_mV7yIP6253SB3OQxN793Ag7QlRb0VRbWBomXT7uq9J1dRrGYjcDGWv2FGca75S1iW8WgY2ocWqHdqBcoAhDlMhUuGC1WxYyMM/s640/blogger-image--1679683890.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhr1nc_MJKlpBZ61oJQ-KdMjy8Qdh2vGwBffuXCalO0q_mV7yIP6253SB3OQxN793Ag7QlRb0VRbWBomXT7uq9J1dRrGYjcDGWv2FGca75S1iW8WgY2ocWqHdqBcoAhDlMhUuGC1WxYyMM/s640/blogger-image--1679683890.jpg" /></a></div> <br/><br/><div class="separator"style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgStd0HnhIfF8bSmfknUiNJy2vT5ByxfRfwzVECkoYA41sNar9twMb_9vsRH3dMMOrXMp5xs_QiuYI1w0CvUHwrQvNViozG1ahoipLwoduh_98nySxHpCho9Fx3GnSoNyOPja0ZRYwjYR4/s640/blogger-image-637474974.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgStd0HnhIfF8bSmfknUiNJy2vT5ByxfRfwzVECkoYA41sNar9twMb_9vsRH3dMMOrXMp5xs_QiuYI1w0CvUHwrQvNViozG1ahoipLwoduh_98nySxHpCho9Fx3GnSoNyOPja0ZRYwjYR4/s640/blogger-image-637474974.jpg" /></a></div> <br/><br/><div class="separator"style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiZDk2IdqjckRY5WT5dlErV_ITQLYVZ1I1Im_BFLhwO86ZC5ekO0_5y74purww0QZXJjRCmq-laRc1bdeA2Or34QPnDWha75-bi6QSavTjyM0txY-hKwdgbE2mnS3uEw5vhWI0DjpVx6g0/s640/blogger-image-265722917.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiZDk2IdqjckRY5WT5dlErV_ITQLYVZ1I1Im_BFLhwO86ZC5ekO0_5y74purww0QZXJjRCmq-laRc1bdeA2Or34QPnDWha75-bi6QSavTjyM0txY-hKwdgbE2mnS3uEw5vhWI0DjpVx6g0/s640/blogger-image-265722917.jpg" /></a></div> <br/><br/><div class="separator"style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiiP1rkGMBv3NMUXk_ww8zyMb2IYkFzEwEz92kUkBflCx2BB79N307wJgfXv4UE451jmjOyY6QOpecWYfVkqElhwIXuj3mzx_u9ZqvnvEq_Vn_zU766MtDnV9U_dirwjKpCBFSN8WNKHdQ/s640/blogger-image--1705618563.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiiP1rkGMBv3NMUXk_ww8zyMb2IYkFzEwEz92kUkBflCx2BB79N307wJgfXv4UE451jmjOyY6QOpecWYfVkqElhwIXuj3mzx_u9ZqvnvEq_Vn_zU766MtDnV9U_dirwjKpCBFSN8WNKHdQ/s640/blogger-image--1705618563.jpg" /></a></div> <br/><br/><div class="separator"style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiTtfh09ISi5Rehf4khIdXtYAGPuAUxMnqyd-yx-rKJOGqXH-Jm0c_UmXFyXTfQ5nmkof8S1orZ2ht9S6dmRP629d1N9u2rcO1N-0thCOfBDq7mcziU25r0QN39SjKgsfuGSdYab3Gp1Os/s640/blogger-image-158734491.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiTtfh09ISi5Rehf4khIdXtYAGPuAUxMnqyd-yx-rKJOGqXH-Jm0c_UmXFyXTfQ5nmkof8S1orZ2ht9S6dmRP629d1N9u2rcO1N-0thCOfBDq7mcziU25r0QN39SjKgsfuGSdYab3Gp1Os/s640/blogger-image-158734491.jpg" /></a></div>Audrahttp://www.blogger.com/profile/08364511458490360345noreply@blogger.com3tag:blogger.com,1999:blog-6300746110762910008.post-11658204428250816602013-01-10T07:44:00.001-08:002013-01-10T08:05:18.646-08:00Still ProgressingAubree is back on full feeds and doing great with that. She has also went down on the pressure from Cpap of 8 to 6 and doing great with that as well. From a pain management standpoint, the day before yesterday was pretty rough, and she was having to get IV morphine rescues throughout the day. They had her on Tylenol and oxy, but it didn't really do much for her pain. Yesterday, they switched her to oral morphine, and it has been the best at managing her pain without making her a zombie. Yesterday with her pain finally under control, Aubree played with toys, was laughing and smiling, and was kicking and playing with her legs and feet like crazy. We are so happy to be getting our girl back to normal. <br />
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In other news, yesterday dad and I went to reposition Aubree in the bed and her silver impregnated tank top (which she wears post op to help reduce the incidence of infection since silver has anti microbial properties) and bedding was pretty saturated with yellowish liquid. Upon investigation, her surgical site and dressing had become saturated and started leaking. After an orthopedic resident came, we got the dressing changed and were informed that this drainage was not inductive of infection and instead just normal drainage free surgery. Thank you Lord! During the dressing change, we also got a chance to see the incision and were told that it was healing nicely. It looked better than what I had envisioned for this point post op! Still a pretty big scar, but looking good from what we can tell.<br />
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Today, they are planning to give her some sprints off of the vent to just nasal cannula oxygen (meaning no pressure, just oxygen). Please pray for Aubree to maintain her o2 stats and vitals during this time! Her being able to have sprints off of Cpap are crucial for be to be able to be moved to pulmonary floor (a definite step down in intensity from the picu) and eventually home. They have also reduced her ipv treatments (forced, percussion type breaths that help loosen anything that might need to be expelled from the lungs), which have to be completely discontinued before Aubree can go home. Steps in the right direction! <br />
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Also, please continue to pray for Aubree's buddy Madden who has Jeunes syndrome and had his surgery 5 days before Aubree. He tested positive for a cold right after his surgery and is having a more difficult recovery period because of it. A simple cold for kids like Aubree and Madden is not simple at all for them and can affect them very severely like we have unfortunately seen with Madden. He has had to be reintubated after each of the two times they have tried to extubate him. Please pray for a speedy recovery for him and for whenever they extubate again to be successful. <br />
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We look forward to meeting another Jeunes family next week. Baby Will, born the day before Aubree, will be here at CHOP next week for outpatient consultations, labs, scans, and testing. Please pray for them in this journey, both traveling and medical, as many of these tests and such will be new for his family. It is just a lot to take in to get so many tests done and to take in all the information from them. Pray for a peaceful trip for them! <br />
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Thank you all again for all the prayers, love and support you have shown us. From cards and care packages to texts and calls to donations to messages on Facebook to silent prayers we might no even know about, it is all so greatly appreciated and lifts us up. <br/><br/><div class="separator"style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEieI3m9EpbPOlCY8tV8sIVbBlFm8hYynYHfNp0AYHa8LKt4SJwqMJmILug-BzRerlaAnbbMqpiZyL2uTvlqHvCwhSqdrDz8R60smTB8RU_RjZdSu9nusVp7ZoF4-CcUQxFhYvQrCo3RYfw/s640/blogger-image-1874548019.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEieI3m9EpbPOlCY8tV8sIVbBlFm8hYynYHfNp0AYHa8LKt4SJwqMJmILug-BzRerlaAnbbMqpiZyL2uTvlqHvCwhSqdrDz8R60smTB8RU_RjZdSu9nusVp7ZoF4-CcUQxFhYvQrCo3RYfw/s640/blogger-image-1874548019.jpg" /></a></div> <br/><br/><div class="separator"style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiytr2iWlTJGwAYYWIbjSGxICl_GrMe8sVU_PVdg2RoU8fMlV3IFXJ14CP3DmOmJ74y7qoJI_bVJOSZGz1wrqYa99WrJU997S8TTHT_JI2gfOrSQUbNs5tJgjHEgWcGLjx7hXFsoJPlTps/s640/blogger-image-1604658571.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiytr2iWlTJGwAYYWIbjSGxICl_GrMe8sVU_PVdg2RoU8fMlV3IFXJ14CP3DmOmJ74y7qoJI_bVJOSZGz1wrqYa99WrJU997S8TTHT_JI2gfOrSQUbNs5tJgjHEgWcGLjx7hXFsoJPlTps/s640/blogger-image-1604658571.jpg" /></a></div> <br/><br/><div class="separator"style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgKSLbPoGl7SI0VMatrR36QCa8sCMBOe2su8Q3yWHOud9kBNztiuAyRGLPxF4cEKLt7fYWMrso-Yk_w5b1rQvlci5amS3S_N9B2vCNflOmIzWr1vtrJQ1TsVtviZ9Kr83A6HvYaZSMPyjA/s640/blogger-image--1365491329.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgKSLbPoGl7SI0VMatrR36QCa8sCMBOe2su8Q3yWHOud9kBNztiuAyRGLPxF4cEKLt7fYWMrso-Yk_w5b1rQvlci5amS3S_N9B2vCNflOmIzWr1vtrJQ1TsVtviZ9Kr83A6HvYaZSMPyjA/s640/blogger-image--1365491329.jpg" /></a></div> <br/><br/><div class="separator"style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgh5SLza6bF3HgPIWh2-Mfw3i58CGvSyA9RYp3qOofjqQ0zpZx1SGISeFivy66cRnTVV7WSonRVl_nvFcNned1sr1TRj2xtq3T4W6iKgU4PpXwy4BSbdcrBjrWC8zrS0m_eQ2-9qaI7oX4/s640/blogger-image-1043426257.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgh5SLza6bF3HgPIWh2-Mfw3i58CGvSyA9RYp3qOofjqQ0zpZx1SGISeFivy66cRnTVV7WSonRVl_nvFcNned1sr1TRj2xtq3T4W6iKgU4PpXwy4BSbdcrBjrWC8zrS0m_eQ2-9qaI7oX4/s640/blogger-image-1043426257.jpg" /></a></div>Audrahttp://www.blogger.com/profile/08364511458490360345noreply@blogger.com1tag:blogger.com,1999:blog-6300746110762910008.post-11711308693043273542013-01-07T19:01:00.001-08:002013-01-07T19:06:52.149-08:00On the RAM Cannula and Overwhelmed by SupportAubree has had a pretty good day. The highlight of the afternoon was her getting to take off the pixie mask and start using the RAM cannula since they reduced her pressure support. She is so much more comfy from that aspect because she doesn't have to wear headgear, just a simply cannula . We are also excited for the change because the pixie mask would lose its seal and blow that pressurized air in her eyes and face at times. Her settings are now Cpap pressure of 8 with 30% o2. <br />
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In other news, they are restarting her feeds again tonight at half volume. She had them cut off yesterday morning for the extubation just to make sure she didn't have anything in her tummy to vomit or aspirate into her lungs. Please pray for this to go well so that she can get back on full feeds. Not only is this beneficial for her to help regain strength, she can start having pain meds through her tube (like oral pain meds) once feeds are established well. Aubree has been crying, writhing, and wincing in pain today as they continue to wean her IV meds in hopes she can have some oral meds in her tube soon. She has had a few rescues and calms down once the pain subsides. Please pray for Aubree to get on a good pain regimen, hopefully oral pain meds through the tube that last longer and do not reduce respiratory drive. Also, please pray for her pain to subside as quick as possible. While we know it will not be quick considering she has 16 fractures in her ribs, a titanium rod implanted, and the wounds from being cut open, we pray for her to be pain free as soon as can be. <br />
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Also, Derrick and I are so grateful to those of you who have donated to the gofundme account our friend Andrea set up for us at http://www.gofundme.com/allinforAubree.We love the name All in for Aubree! It is such a great descriptor for all of you who have come alongside us and our daughter. Hosts of people have reached out and expressed love and support to us and it means so much to us. It helps keep keep our spirits high. Most importantly, the prayers you all have prayed for us and have recruited from others have brought us so much peace and comfort in the midst of all the crazy. And, God hears and answers prayers! We have seen it so evidently through all of this! Every baby step towards full healing is a blessing from God. Thank you for continuing to pray for us, Aubree, and her doctors! <br/><br/><div class="separator"style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgjxwEm0raNa2Odz7AD57e2YOLzH6a7ZAhjDrmGwQ6wFvaJvJXkUijZ7EB2k2nL82DvBfQ5sWd6JV9SZ8A_VFzOdxQj8iRUFPSc1frulPoou1-BQFSqJuevrFCIjjHn0xKm4yIwlLLDFdI/s640/blogger-image-366969081.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgjxwEm0raNa2Odz7AD57e2YOLzH6a7ZAhjDrmGwQ6wFvaJvJXkUijZ7EB2k2nL82DvBfQ5sWd6JV9SZ8A_VFzOdxQj8iRUFPSc1frulPoou1-BQFSqJuevrFCIjjHn0xKm4yIwlLLDFdI/s640/blogger-image-366969081.jpg" /></a></div>Audrahttp://www.blogger.com/profile/08364511458490360345noreply@blogger.com2tag:blogger.com,1999:blog-6300746110762910008.post-47409993934348277642013-01-07T08:02:00.001-08:002013-01-07T08:02:03.603-08:00Post Extubation UpdateThese are the lengthy Facebook posts from earlier today. I am putting them here to update friends who follow us who are not on Facebook and for us to recount the day in the future. <br />
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1st post after extubation:<br />
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I cannot yet put into words what a terribly traumatizing and painful process this extubation was; however, she is still extubated and on the pixie mask with the trilogy ventilator on Cpap function with a pressure of 10. Once mama finally convinced them to give the poor baby some pain meds as she thrashed in pain and anxiety for an hour, she finally calmed down. She now has her giraffe that she sleeps with and is finally resting. Please continue praying for our tough girl and for mom and dad on the sidelines who aren't nearly as tough as she is. She is such a trooper but still has more to conquer in the road to recovery. <br />
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2nd post after extubation:<br />
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I probably posted the last status a little prematurely. I was pretty shaken and stunned from the extubation process and was not focused on the big picture of the whole situation. Glory to God for a successful extubation! Thank you Lord for allowing out girl to pull through a very difficult thing! Thank you friends and family for pouring out so many prayers and well wishes for our sweet daughter and us! Lord, help me to stay focused on you and the blessings you pour out on us! Maybe God allows there to be so many baby steps to a final recovery to give us (me) more opportunities to rely on Him and give Him praise for all He has done! <br />
<br/><br/><div class="separator"style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhG7fiNmBGDRiJtta1AM32WNTrN2EVyfV6ghRKQuHCvRrMVW0RrX2r53J0YBIo4GUfCTAJj1OFLJWcWSHNn3Liz729S1X4jD1k_dJpn5LkXnfurysi8RwLBl85nl11KwCIQ1oHW3vJvTWo/s640/blogger-image--1139274966.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhG7fiNmBGDRiJtta1AM32WNTrN2EVyfV6ghRKQuHCvRrMVW0RrX2r53J0YBIo4GUfCTAJj1OFLJWcWSHNn3Liz729S1X4jD1k_dJpn5LkXnfurysi8RwLBl85nl11KwCIQ1oHW3vJvTWo/s640/blogger-image--1139274966.jpg" /></a></div> <br/><br/><div class="separator"style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhiXavOojpL5N_5aeNdcfSVSzh-TdjwSOo_lj2KRuXkRHvggmlijiP0ak1AOXTrp3X4KVBaS-EKljwV2BGawtZhI17jE8drwwRrsBkxwHpxaWkIPmJrv9OD052j_xmGg0BrZN0LOxXH-5c/s640/blogger-image-498373998.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhiXavOojpL5N_5aeNdcfSVSzh-TdjwSOo_lj2KRuXkRHvggmlijiP0ak1AOXTrp3X4KVBaS-EKljwV2BGawtZhI17jE8drwwRrsBkxwHpxaWkIPmJrv9OD052j_xmGg0BrZN0LOxXH-5c/s640/blogger-image-498373998.jpg" /></a></div> <br/><br/><div class="separator"style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhL2M7sIeI8wS5JehKD-ne-56Bf7VGvKW3_k9nssOSTflxyaPQXpUKyTiXNjLnp1VCM0Rh7pa6kVzebmZYSJnOnuQJBVHztR6_XSD_hqZzREX_52jWJvkrB7QVeSA_j7YPM5eOX62v1S6k/s640/blogger-image--915163210.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhL2M7sIeI8wS5JehKD-ne-56Bf7VGvKW3_k9nssOSTflxyaPQXpUKyTiXNjLnp1VCM0Rh7pa6kVzebmZYSJnOnuQJBVHztR6_XSD_hqZzREX_52jWJvkrB7QVeSA_j7YPM5eOX62v1S6k/s640/blogger-image--915163210.jpg" /></a></div>Audrahttp://www.blogger.com/profile/08364511458490360345noreply@blogger.com0tag:blogger.com,1999:blog-6300746110762910008.post-2547260161220725432013-01-07T08:01:00.001-08:002013-01-07T08:56:40.388-08:00ProgressThank you all again for the prayers lifted up for us and Aubree during extubation! Praise the Lord for a successful extubation! Lots of progress has been made since then.<br />
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- Aubree has gotten rid of a ton of fluid through her diaper since being extubated. I think she got rid of around 900 grams of fluid more than what she took in yesterday. She looks so much less puffy! <br />
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- Her 2 surgical drains and her arterial line were both removed this morning. Both removals require a lot of tape pulling and removing stitches. She was such a trooper! <br />
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- Aubree can suck on her paci again and have some comfort! She couldn't have it while intubated and wouldn't take it right after extubation. I think she was a little bit traumatized from all the negative simulation in her mouth. However, last night she took it and has been happily sucking away ever since :)<br />
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- We saw some sweet smiles this morning! The first we have seen since surgery! She can't smile as big as she usually does because of the mask, but they are still so wonderful to see! <br />
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- Aubree only needed 4 rescues I believe since extubation. One of those was preventative so she would not be in pain during the removal of the drains and arterial line. She seems so much more comfortable now and does not require nearly as much medicine to be in that comfy state. <br />
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- They bumped her down to Cpap pressure of 8 this morning, down from 10 yesterday. We also decreased her o2 from 40% to 30%. As long as she does good on this, she can will continue being bumped down. Also, with decreased pressure support, she can try RAM cannula again, which is much less involved than the pixie mask. It is just a little bigger and thicker than a regular nasal cannula. Please pray for her to continue weaning down successfully!<br />
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Thank you again for all of the support from you all! We are so encouraged and uplifted by you all! And, just to share more picts, here are some favorites from late October when Aubree was at Arkansas Children's Hospital for observation. <br/><br/><div class="separator"style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjYdIsmRekI4CSdMdH0gU7OEl4poBV-Mmqcba2F8dGfpbLSU0k2zTVGlJSUCtBtIp26lDjCPNbVZ0HYZAz2Irn96FMyHognhlMEry8NXrmrYWS63X44tKXJgxr0gpWMXXGVLDP0MpRaCyY/s640/blogger-image--2023991565.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjYdIsmRekI4CSdMdH0gU7OEl4poBV-Mmqcba2F8dGfpbLSU0k2zTVGlJSUCtBtIp26lDjCPNbVZ0HYZAz2Irn96FMyHognhlMEry8NXrmrYWS63X44tKXJgxr0gpWMXXGVLDP0MpRaCyY/s640/blogger-image--2023991565.jpg" /></a></div> <br/><br/><div class="separator"style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiUQBW-q2q2-onCywXOdLzP8h05uSk0L86HWY0w7CgZWPUIqwmnMelYdJbgMTPKwdLnv6OFkqfc4BMacjx78t9xPV8K1NmZuMXvbBYgY4b4AEWzTn3hlHEdwrjHf0idfivw511h0Rw7Ge4/s640/blogger-image-83744050.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiUQBW-q2q2-onCywXOdLzP8h05uSk0L86HWY0w7CgZWPUIqwmnMelYdJbgMTPKwdLnv6OFkqfc4BMacjx78t9xPV8K1NmZuMXvbBYgY4b4AEWzTn3hlHEdwrjHf0idfivw511h0Rw7Ge4/s640/blogger-image-83744050.jpg" /></a></div> <br/><br/><div class="separator"style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEheay6GJxXTbRgU1FzxQIB-MlmBVvgo8scI4tyV8NfJpC7EXdGzLJz3UKNaXwK5AIdsqXQNpvp_sbZ_4JG0ikrWu3eW_X7C36RjNjflI1wY0c66ZlVukp3t2sy-cqWGXGDaUyAnwCP68DU/s640/blogger-image--1015449009.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEheay6GJxXTbRgU1FzxQIB-MlmBVvgo8scI4tyV8NfJpC7EXdGzLJz3UKNaXwK5AIdsqXQNpvp_sbZ_4JG0ikrWu3eW_X7C36RjNjflI1wY0c66ZlVukp3t2sy-cqWGXGDaUyAnwCP68DU/s640/blogger-image--1015449009.jpg" /></a></div> <br/><br/><div class="separator"style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjgIo2Ext0e79i-ocUah26Vi2bjsk_f18C0jgJZFqt8yqW6Nk53fA1x5PlLXphLqZgEmsZalIxEoUNChKjsL4hxKkBDoVe_jO8KLuzysqtNH8CPaoOEfFfXlWnxZ4AfnR5C0u39w_F2bT4/s640/blogger-image-552183563.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjgIo2Ext0e79i-ocUah26Vi2bjsk_f18C0jgJZFqt8yqW6Nk53fA1x5PlLXphLqZgEmsZalIxEoUNChKjsL4hxKkBDoVe_jO8KLuzysqtNH8CPaoOEfFfXlWnxZ4AfnR5C0u39w_F2bT4/s640/blogger-image-552183563.jpg" /></a></div>Audrahttp://www.blogger.com/profile/08364511458490360345noreply@blogger.com0tag:blogger.com,1999:blog-6300746110762910008.post-32414859192558614322013-01-06T09:36:00.001-08:002013-01-06T11:24:02.473-08:00Breath Holding, Extubation, and Support from FriendsThe last 36 hours have been pretty rough to be quite honest. Since they have started weaning Aubree off of her pain and sedation meds that she started post op, she now wakes up from any kind of movement or talking and starts crying immediately (not audibly because of the breathing tube). The worst part about this, besides seeing our baby scared and in pain, is that she holds her breath when she starts to cry. Because she has no lung reserve to speak of, her oxygen level desaturates very, very quickly when she is doing this. Also, her heart rate plummets, she turns beet red, and breaks out sweating like crazy. Like I posted on Facebook, the worst of these times she desatted to the 50's, turned blue, and her her eyes rolled back in her head. All o this within less than a minute. Thankfully, the respiratory therapist just happened to be in the room at this time, and she was able to manually bag her with pure oxygen to get her oxygen sats up while rescue meds were drawn and given to her to help her calm down again. In the last 24 hours, she has needed 12 sedation and 9 pain med rescues. <br />
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However, the light at the end of this tunnel is extubation. The hope is that a lot of it has to do with the negative stimulus with the tube. We talked with Aubree's medical team this morning during rounds and they are hoping to extubate her to Cpap (pressure support) through hopefully RAM nasal cannula this afternoon. They will have a plan in place and already ordered for rescues that she can have while extubated in case she holds her breath and desats again. One other hurdle in the way is that her airway is very swollen from the breathing tube and there is currently no leak (airflow) around the breathing tube. They started her on a dose of steroids this morning to help reduce some of the swelling and allow Aubree to move air through her airway. We ask for you to please cover our girl in prayer for a successful extubation, that they would not have to reintubate her in a crisis situation. Also, please pray for a lot of her pain and anxiety to subside with extubation. While we know she will still be in substantial pain (she did have major surgery with a titanium rod implanted and 16 cuts/fractures in the ribs on her right side as part of the procedure), we hope that she is much more comfortable not intubated. I think I would freak out pretty good if I woke up and felt like a straw was jammed down my throat that I had to breathe out of! <br />
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We are truly grateful for all of the sweet words, prayers, and support bestowed upon us during this time. It has truly been overwhelming, in a good way of course. With yesterday being such a hard day, a sweet surprise and act of kindness that brightened our day was a dear friend of ours, Andrea Segal, who started a gofundme account at http://www.gofundme.com/allinforAubree for people to give money to help with expenses associated with all of Aubree's medical care, travel, food, and other expenses associated with her hospitalization. Many of you have asked for a way to support us financially, so I am sharing this account here. (I am not sure if this link will be active or if you will have to copy paste it to go there since I am posting from my phone.) It has really been such a blessing to have our friends and family come alongside us and bear the trials and share in the joys and victories of all this with us. Really, knowing we have an army of support helps in in all these experiences that are so very hard has made such a humongous difference to us. Thank you so much to all of you for all of the many ways you have shown us and our sweet Aubree support. <br />
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Also, as I am typing this post, a code blue was called down the hallway from us. Would you please pray for this child and family? I do not know the outcome of the code situation, but hurt for this family. It also reminds us of the criticalness of the children, including Aubree, in the picu and how delicate the recovery process is. Please remember Madden, Aubree's buddy with Jeunes syndrome who had surgery a few days before Aubree, as he is still intubated from complications with a cold he is battling. However, he is on the mend and on the track for extubation as well. <br />
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Just to share some more pictures, below are some pictures of Aubree with us the night before surgery making silly faces together. We can't wait to have our sweet girl back to her fun and spunky self! I love that the one of us kissing her is when she is happiest! <br/><br/><div class="separator"style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgJRiM33n8g_s5v_bh2AjdC-XvWutOzcsxYC8-chU5nr3tvn1IMM3GGiNHy1y-p6A7unjpMBYTVxsj_P1zfyKFOyCizdM_7G1Mlos0ojkYwMUmkyv_twp4BvsvK_LwKMYrUgCuVWbliQQk/s640/blogger-image-1391294984.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgJRiM33n8g_s5v_bh2AjdC-XvWutOzcsxYC8-chU5nr3tvn1IMM3GGiNHy1y-p6A7unjpMBYTVxsj_P1zfyKFOyCizdM_7G1Mlos0ojkYwMUmkyv_twp4BvsvK_LwKMYrUgCuVWbliQQk/s640/blogger-image-1391294984.jpg" /></a></div> <br/><br/><div class="separator"style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjOxSoIL-QVx-syhH1DpP5LUwu6l1ENWjn7p7Bmd88wL-VKzUaivKOwJjvP2_ci5ta28eXuUNpSZ5Lvq5F4jG99PQDbhKQSRaBUxmWe5RrmOsLy1Rp-c7qjuS-BAyL33snj7PQ1GAVZiZE/s640/blogger-image--1005193835.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjOxSoIL-QVx-syhH1DpP5LUwu6l1ENWjn7p7Bmd88wL-VKzUaivKOwJjvP2_ci5ta28eXuUNpSZ5Lvq5F4jG99PQDbhKQSRaBUxmWe5RrmOsLy1Rp-c7qjuS-BAyL33snj7PQ1GAVZiZE/s640/blogger-image--1005193835.jpg" /></a></div> <br/><br/><div class="separator"style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgyYCrLxyRE9CedmiASyttaPbHNg9sGHT2a5CUF6Whi3lmbhTsFKCNL-t7DONZILYuSNhDmB_viTCsND5r8cdwKcByddFshiGHlOIp0itxuUcd-78k2VXoPihyCNSIShtoECZ1roPdKths/s640/blogger-image-1711852622.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgyYCrLxyRE9CedmiASyttaPbHNg9sGHT2a5CUF6Whi3lmbhTsFKCNL-t7DONZILYuSNhDmB_viTCsND5r8cdwKcByddFshiGHlOIp0itxuUcd-78k2VXoPihyCNSIShtoECZ1roPdKths/s640/blogger-image-1711852622.jpg" /></a></div>Audrahttp://www.blogger.com/profile/08364511458490360345noreply@blogger.com3tag:blogger.com,1999:blog-6300746110762910008.post-35080907520393761972013-01-04T21:54:00.001-08:002013-01-05T09:12:28.584-08:00More Updates & 2nd Surgery ScheduledThey are experimenting with weaning down Aubree's vent settings, but with a few more changes from yesterday morning's change since it wasn't successful. Yesterday, they increased her pressure and lowered her volume a bit, along with the same reduction of breathing rate from 30 to 25 breaths per minute. This change with the increased pressure support Aubree tolerated great. She tolerated this well and her blood gases looked good, so they reduced the rate down to 20 breaths per minute. We are much happier with this weaning approach that was first tried of just her rate decrease. This morning, they slightly decreased her tidal volume by one, but got really agitated after she was repositioned and was clamping down on breathing tube and not breathing. This skyrocketed her co2 levels and her o2 saturation dropped. She was struggling majorly with lots of nasal flaring and almost lofting her head up when trying to breate. Even with a rescue sedation med, she was not improving. The team of docs came by and decided to reduce her rate to 7 breaths per minute, but increased her pressure support substantially to 20 (pressure when inhaling) and her peep (pressure to 7 when exhaling to keep the pockets in her lungs slightly open like they should be). This means she is doing most of the work taking breaths, just with lots of pressure support to make sure they are good, deep breaths. Please pray for Aubree to tolerate these vent changes well and that she will breathe even more on her own. Please start praying now for when she is extubated (the breathing tube and vent support removed), that it will be at the right time with the right support she needs as she steps down from the vent , and that her body will be healed and strong enough to start doing even more of the respiratory work on its own. <br />
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With the end goal of extubation and starting to work towards that with vent settings, they also have to start weaning down her strong pain and sedation meds since they slow down respiratory drive. Aubree has already had to have a few sedation rescues today as these meds have been reduced. They have also slightly increased a pain/sedation combo that doesn't decrease respiratory drive, but it it is kind like when she was out of surgery all over again in that they kind of have to play with it and see how she responds to get the right dosage. So very hard to watch your baby in pain and struggling as they work this out. Please pray for this to be worked out quickly to keep our girl comfy and happy! <br />
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She started spiking a fever again (over 100) with her heart rate and respiratory rate climbing, but last night's nurse was very on board to go ahead a give her tylenol to stop the fever in its tracks so it didn't get so severe like last night. Aubree rested comfortably with a temp of 97.5 (her normal) with her normal resting heart rates and respiratory rates. She is also sooo much pinker after her blood transfusion and her hemoglobin is back up. She is also tolerating the ipv percussion type sessions well. So many answers to prayer!<br />
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Today, they started half amounts of her normal feedings, instead of pedialyte and pedialyte diluted feeds. Pray for her to tolerate these feeds and for her little system to get back to normal since anesthesia, pain meds, and sedation meds slow all that down considerably. going to give her some increased miralax to hopefully help with that.<br />
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Also, Aubree has been opening her eyes more for very short periods of time. She even reached for my phone when I was showing her one of her favorite videos of her and daddy laughing together. Another time, she started kicking her foot up at me and playing in a way we play at home. Our sweet girl is still in there!<br />
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Also, we got a date for Aubree's second implantation surgery. It will be April 9th, with Aubree admitted probably a couple days before for pre-op stuff. Never too early to start praying for this upcoming surgery as well! <br />
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Thank you all so much for praying for us and especially Aubree through this time. We have so much peace and comfort throughout this process and thank you for praying for this for us! Also, sorry for all the overload on medical jargon and vitals. I am trying to keep up with it all to hopefully make the post op experience easier on her the second time around!<br />
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Just so this post has pictures, below are some pictures of Aubree from Halloween, which she spent at Arkansas Children's Hospital for respiratory observation. She was the cutest honeybee ever! I said she was a honeybee instead of a bumble bee because she is so sweet! <br/><br/><div class="separator"style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjpr5ICMXo9Qw8Hq4S0CMIkcJJbzqVHVjdsV6KN0g3pw5gqJss-meycp8mNuJs_7_E9yOvkwq6BVgtzKP7yrIT_q-O_95ZE-R5RZnY0UAqzC9UZJHhZqnqyZ7K4z7sx1fpIObAHPuRJxfA/s640/blogger-image--915927640.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjpr5ICMXo9Qw8Hq4S0CMIkcJJbzqVHVjdsV6KN0g3pw5gqJss-meycp8mNuJs_7_E9yOvkwq6BVgtzKP7yrIT_q-O_95ZE-R5RZnY0UAqzC9UZJHhZqnqyZ7K4z7sx1fpIObAHPuRJxfA/s640/blogger-image--915927640.jpg" /></a></div> <br/><br/><div class="separator"style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhi8dGv_jS1ErbOFfce5IhTumw-WCYpcFW4eveuGxZUuxxf0F710TjXjAw2mJcKZ8PfoXTaRqS-JnVwzxTZHmcffLWMZ9jdnq3hsQJnhgzNp7_tSr0XR0rTqmBV7xGIwgqLvo8YL6X8TCk/s640/blogger-image-2099073491.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhi8dGv_jS1ErbOFfce5IhTumw-WCYpcFW4eveuGxZUuxxf0F710TjXjAw2mJcKZ8PfoXTaRqS-JnVwzxTZHmcffLWMZ9jdnq3hsQJnhgzNp7_tSr0XR0rTqmBV7xGIwgqLvo8YL6X8TCk/s640/blogger-image-2099073491.jpg" /></a></div> <br/><br/><div class="separator"style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgcQfnNou7Rj_ASjPyuVPmSbKsKpDMVGts35F3vv1ankqjy6A2BhpeTaI37Ly7q7rpBuRUbGK_L_I6XsWnBSAZLiea73TM6T3DCiP-Ze4Couu3-b3zbQtjmAYBcvZxXP64Htkzh4bgLJco/s640/blogger-image--1825164874.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgcQfnNou7Rj_ASjPyuVPmSbKsKpDMVGts35F3vv1ankqjy6A2BhpeTaI37Ly7q7rpBuRUbGK_L_I6XsWnBSAZLiea73TM6T3DCiP-Ze4Couu3-b3zbQtjmAYBcvZxXP64Htkzh4bgLJco/s640/blogger-image--1825164874.jpg" /></a></div> <br/><br/><div class="separator"style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhkNy8E_1Rwk9Z47yBHPU94RBdkhmbcM1ZcFtXcRpjryLBor-tvpu7azDKKoGKP5aMkuTXF18j41oHI6OJmlGzexgkm5x_d3YrF2TRu_iVh-2a3w3qdrr7CXeb_r57-RHCHEOZFxBB8zBs/s640/blogger-image-1603407541.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhkNy8E_1Rwk9Z47yBHPU94RBdkhmbcM1ZcFtXcRpjryLBor-tvpu7azDKKoGKP5aMkuTXF18j41oHI6OJmlGzexgkm5x_d3YrF2TRu_iVh-2a3w3qdrr7CXeb_r57-RHCHEOZFxBB8zBs/s640/blogger-image-1603407541.jpg" /></a></div> <br/><br/><div class="separator"style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiOdKQfCUJOOpLQOeIT4PZVf-skiYvLQqlS-EOjJpzRlYZVLj_bzCPafOBNOZr3dStf9AcVR2WwIivgXw2m176FHmws-zzTjnU6Ry4lFmg2FXP8reXqhgBd8t9N7v4mnfXNCwwWDAxBMsM/s640/blogger-image--913244567.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiOdKQfCUJOOpLQOeIT4PZVf-skiYvLQqlS-EOjJpzRlYZVLj_bzCPafOBNOZr3dStf9AcVR2WwIivgXw2m176FHmws-zzTjnU6Ry4lFmg2FXP8reXqhgBd8t9N7v4mnfXNCwwWDAxBMsM/s640/blogger-image--913244567.jpg" /></a></div>Audrahttp://www.blogger.com/profile/08364511458490360345noreply@blogger.com1tag:blogger.com,1999:blog-6300746110762910008.post-85762751381059603832013-01-03T16:09:00.001-08:002013-01-03T16:09:04.555-08:00An Update Post OpOur precious girl is back in the picu and resting comfortably most of the time. The anesthesiologist said that she has a high medication tolerance, meaning she requires more medication than what they would expect to keep her comfy and without pain. Once she got back in the picu, they started her on a low dose of continuos pain and sedation meds and gradually increased as she kept being in more pain. They would also give her rescue meds when she would wake up in pain, which are just immediate doses of the meds she is already getting on the slow drip. Sometimes she was having to get these as often as every 20 minutes. This was a very hard process to watch her writhing in pain as they try to find the happy medium of meds for her. However, I think that we finally have a pain and comfort regimen that is working for her. Aubree will know open her eyes for a couple of minutes and not grimace in pain like she had been. They have also added another medicine that has sedating and pain management properties that she can still be on when she doesn't have the breathing tube, while the other ones she can only be on a very low dose or not any at all. <br />
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They started her on half her normal volume of feedings, but instead of breast milk and formula, they are doing pedialyte through her tube to see how she tolerates that for 24 hours. Then, the plan is to move to 1/2 pedialyte, 1/2 normal bottle contents through the tube (still the reduced volume). All of this will be through her new gtube for now because she can't have anything by mouth with the breathing tube in. Please pray for Aubree to tolerate these so that she can have nutrition to help her grow stronger and heal. <br />
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We anticipate Aubree staying on the vent with breathing tube at least through the week. Please start praying now for when they will extubate her (take the breathing tube out and be off the vent), that she would be able to maintain her respiratory function on whatever lower level of support she will be put on (most likely Cpap). <br />
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Today, they removed her catheter because she was leaking around it anyway. So, now he will have to have diaper changes which involves more frequent movement which can be painful for her. Please pray that she will tolerate her changes well and with little to no pain. Also, now that she is receiving pedialyte and soon to be feeds through her gtube, they have discontinued her IV fluids. <br />
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Today, Aubree opened her eyes for a few minutes and watched a few videos of her and daddy laughing together, which are some of her favorites. She would also follow me with her eyes. When she stirs, she also moves her arms and legs. While she needs to be resting as much as possible, it is good to know our little angel is still in there. <br />
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Below are some pictures of Aubree with us (you might have seen some of these on facebook already). There is also one of her the morning of her surgery before she went back. The others are her post op. The one of her sleeping is the day of surgery and the other is her today, about a day post op. There is also an X-ray of her chest post op. So much more already on the side! <br />
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Thank you all so much for the overwhelming amount of encouragement and prayers via text and facebook. We are also so thankful for those family members who are able to be with us and support us physically with food, drinks, and other needs so that we never have to leave Aubree's side. Please continue praying for our tough little girl as she recovers. Praise the Lord for His healing already taking place in her tiny body. We pray for even more healing in the days and weeks to come! <br/><br/><div class="separator"style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiOQqc-lRz5Yh3Bv0GHzDhNxK1hpNSV_TdUcyE0xwajCIkhSXXyW_IKjKdmyvrq_3cZAEUmfeUpKdiIg8ZnsdAHWcE5TV37akFr6hl0sIvYrSgXTmuRkzIs-yBggbBsYHnjy0COcoXirig/s640/blogger-image-26281310.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiOQqc-lRz5Yh3Bv0GHzDhNxK1hpNSV_TdUcyE0xwajCIkhSXXyW_IKjKdmyvrq_3cZAEUmfeUpKdiIg8ZnsdAHWcE5TV37akFr6hl0sIvYrSgXTmuRkzIs-yBggbBsYHnjy0COcoXirig/s640/blogger-image-26281310.jpg" /></a></div> <br/><br/><div class="separator"style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgDqPhO0-TN4TIGsNU2qal390MFayoBwJ_O_f0WvUd_YcV4LKhfAbDBRHcOXKnYVr0G8i3-hYHaNaSjvBqp7z22T9kEnIJruzKQ3qelFb03XSrjapU5_upGapDEwUO_pZPoGcdZqkRnwiI/s640/blogger-image-487291515.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgDqPhO0-TN4TIGsNU2qal390MFayoBwJ_O_f0WvUd_YcV4LKhfAbDBRHcOXKnYVr0G8i3-hYHaNaSjvBqp7z22T9kEnIJruzKQ3qelFb03XSrjapU5_upGapDEwUO_pZPoGcdZqkRnwiI/s640/blogger-image-487291515.jpg" /></a></div> <br/><br/><div class="separator"style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhmP621DqLi596P8SGLeE1wfYEJyGVXbCb2F9kg6kiJiLB6RhznDtK8cCsgHhVBA3Qvdrjd79wd0vG7bTeA8bp8gPuIXH7pM9GBmA_JKxs7gT5GgNtqPSFN99aXva2TlB5jeIfXqYLzEVU/s640/blogger-image-1352208958.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhmP621DqLi596P8SGLeE1wfYEJyGVXbCb2F9kg6kiJiLB6RhznDtK8cCsgHhVBA3Qvdrjd79wd0vG7bTeA8bp8gPuIXH7pM9GBmA_JKxs7gT5GgNtqPSFN99aXva2TlB5jeIfXqYLzEVU/s640/blogger-image-1352208958.jpg" /></a></div> <br/><br/><div class="separator"style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh3iUng-8i7Qyiz9R5QYM-zAdlPn-RQXPpu0nrGHe-mkAHRS2YT8G1KpYCv1xn5oevDfOzSLkRMUtH9cKzf2X3-Rd_NJNv4orGmw4iKdqpQID2gQ9PoanCAu8ehb-O5gxxA9rpsD3TRINo/s640/blogger-image--1493272507.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh3iUng-8i7Qyiz9R5QYM-zAdlPn-RQXPpu0nrGHe-mkAHRS2YT8G1KpYCv1xn5oevDfOzSLkRMUtH9cKzf2X3-Rd_NJNv4orGmw4iKdqpQID2gQ9PoanCAu8ehb-O5gxxA9rpsD3TRINo/s640/blogger-image--1493272507.jpg" /></a></div> <br/><br/><div class="separator"style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh5hTRhfva2VgqDr3HWS5CkvdGBrhMdsSMetoRCxoNgMdKP3gif6TgDFW7eif6UzAwHlToj5kQq2VxobSB5MqLteeirPkYc1sOxndFFKnDP_k_oS_6DCHye0yqfiuk2JrMkfVhReFFeZ6E/s640/blogger-image-1418722266.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh5hTRhfva2VgqDr3HWS5CkvdGBrhMdsSMetoRCxoNgMdKP3gif6TgDFW7eif6UzAwHlToj5kQq2VxobSB5MqLteeirPkYc1sOxndFFKnDP_k_oS_6DCHye0yqfiuk2JrMkfVhReFFeZ6E/s640/blogger-image-1418722266.jpg" /></a></div> <br/><br/><div class="separator"style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgWakw6FX73rFntSuB60OtLuwfRw2rSs6-xFMmTZZjoqaVX720gWIl7OBTwlBveuaJzrUxNHSj78Ol_MhAWLA9V55dV-C4aB2onV-5RnCcunaDZ6DkJfnicMRyklTJLJDMipRSTU5KqMxU/s640/blogger-image--1177261988.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgWakw6FX73rFntSuB60OtLuwfRw2rSs6-xFMmTZZjoqaVX720gWIl7OBTwlBveuaJzrUxNHSj78Ol_MhAWLA9V55dV-C4aB2onV-5RnCcunaDZ6DkJfnicMRyklTJLJDMipRSTU5KqMxU/s640/blogger-image--1177261988.jpg" /></a></div>Audrahttp://www.blogger.com/profile/08364511458490360345noreply@blogger.com5tag:blogger.com,1999:blog-6300746110762910008.post-41451352693695722902012-12-28T21:45:00.001-08:002012-12-28T21:45:05.457-08:00Christmas & Other UpdatesWe had a wonderful Christmas at Ronald McDonald House (RMH). It was definately different than any Christmas we had before, but Christmas was going to be different no matter what because we have Aubree with us this year. We enjoyed video chatting with our families and opening presents together. Aubree really did great ripping the paper on the presents and pulling items out of her stocking. She really loved the old timey telephone with the pull along string, a baby kitchen for sitters, and the baby snacks in her stocking. She especially like the baby cookies and ate them like a pro! She has also had many Ritz crackers since then and gets excited when she sees them now. We also took shifts (so that someone is always with Aubree upstairs since she can't come down) eating a very nice catered Christmas breakfast and dinner here at RMH. It was a very special treat to have the normal Christmas fixings being so far from home. Also, we made a nativity scene out of play doh to have a representation of the real reason we celebrate Christmas, and Deb and I made a couple Christmas treats to enjoy on Christmas day. <br />
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While Christmas was a fun time of making new memories, we have especially enjoyed just soaking up all the time we can with our sweet Aubree. We have been playing with her new Christmas toys and some old favorites, as well as reading lots of books, and helping her jump on the bed. Lots of fun, simple times together! We are trying to get as much play and quality time in as possible since we know she will not feel like playing (and definitely not as hard as she does now) for who knows how long after surgery. <br />
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Aubree will be readmitted to CHOP on December 31st. New Year's Eve in Philly! All pre-op things will be taken care of this day and on January 1st before she is to have surgery on January 2nd. We can hardly wrap our minds around what it will be like for our precious baby to have to undergo such a major surgery. While it is hard to comprehend, we are so thankful that no matter what happens during and after surgery, that Aubree is in God's hands. When Aubree was born, she was gray as a ghost, not crying (and did not cry the entire time we were in the delivery room while she was receiving assistance), and struggling immensely from a respiratory standpoint. God spared our sweet girl then, when He didn't have to, and for that we are so thankful. God has allowed more joy in our lives in the last almost eight months with Aubree than we could have ever anticipated. I have told people that we were happy before Aubree; we just didn't know how much happier we could be! We praise God for our precious gift and trust in Him regarding Aubree. He loves her so much more than we can (which is hard to imagine because we love this little girl to pieces!) and wants the best for Aubree, whatever that might be. Of course, our hope and prayer is for this surgery to be successful for providing Aubree with the best quality of life possible with increased lung capacity to meet her respiratory needs long term. We want our daughter with us and healthy as long as possible! Thank you so much for the all of the prayers lifted on behalf of us and Aubree and her medical team. Please continue to cover her and us in prayer in the days and weeks to come. The peace we have throughout this process is a testament to all of the prayers of so many and the grace of God! <br />
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Will you also please continue to pray for Madden, the other baby here at CHOP with Jeunes syndrome? He had his first VEPTR surgery this morning. He is out of surgery and in the PICU where he will stay for the next few days until he can be moved to the pulmonary floor. Please pray for fast and full recovery for him! His progress can be followed under Team Madman on facebook. Also, please pray for another Jeunes baby who was born the day before Aubree. His name is Will, and he and his family will be traveling to CHOP in mid-January for a consulation with the Thoracic Insufficiency Team. These appointments are so helpful and informative, but also come with a lot of information to process and sometimes decisions to make. Will's mom Mary has a blog that she updates about Will and their family <a href="http://www.thetallchickblog.com/" target="_blank">here</a>. <br />
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Thank you to those of you who have sent us cards and packages of encouragement while we are here. They really brighten our day! Please enjoy the many pictures capturing some of our moments here in Philadelphia. <br />
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Audrahttp://www.blogger.com/profile/08364511458490360345noreply@blogger.com7tag:blogger.com,1999:blog-6300746110762910008.post-91882917486662775862012-12-24T11:23:00.000-08:002012-12-24T11:23:30.032-08:00An Update from RMH & Aubree in the NewsWe are settling into our home away from home. It is honestly so much better than being at the hospital. I am genuinely so much happier outside of those teal colored walls, and I think Aubree and dad are, too. While we are so thankful for Aubree to be seen and treated at CHOP by such a phenomenal group of medical professionals, we are cherishing the time we have to spend together as a family before Aubree has to be back in the hospital for quite a while for surgery. Please continue to pray for peace for us in the days before surgery and after. Also, please pray for Aubree to stay as well as possible throughout this process and for her to have a hedge of protection around her at all times. We just want our sweet girl to be okay! <br />
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Also, Aubree and her story have been in the news recently. Last week, Larry Stroud from Derrick's hometown newspaper, the Batesville Daily Guard, interviewed us to write an article about Aubree. He did a wonderful job relaying her journey and our hopes for Aubree. There is not a free link to see the article (you must be a paid subscriber to see the article). However, highlights from the article are attached to Aubree's picture on the Batesville Daily Gaurd facebook page. Here is what it says:<br />
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<em>Seven-month-old Aubree Elise Shaw will have her first Christmas far, far from home and facing a serious operation that hopefully will allow her to celebrate man<span class="text_exposed_hide">...</span></em><span class="text_exposed_show"><em>y more Christmas Days.</em><br />
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<em>Aubree is the daughter of Derrick and Audra Shaw of Springdale and has an extremely rare genetic condition called Juenes Syndrome which affects the way a child's cartilage and bones develop.<br />
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“With this disorder, the main issue is that the rest of the body will grow at a relatively normal pace, but the rib cage grows very minimally if at all,” Audra said.<br />
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Simply put, the baby’s rib cage is much too small to allow her lungs to expand properly.<br />
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“She’s already requiring oxygen,” having been on oxygen since October, and also uses a continuous air pressure (C-pap) machine to force air into her lungs while sleeping, her mother said.<br />
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Aubree’s lungs function normally — they just do not have space to grow. Doctors say most babies with Juenes do not live past two years.<br />
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But things are looking up for Aubree since she arrived at Children’s Hospital of Philadelphia, known as CHOP for short, and the Shaws met the surgeon who invented a device called VEPTR — a vertical expandable prosthetic titanium rib.<br />
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“They’ll attach the VEPTR to the topmost rib and the bottommost rib. They’ll essentially break all the ribs in between,” said Audra. That will allow that side of the rib cage to expand to give Aubree more lung capacity.<br />
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An Aubree Shaw account has been set up at First Community Bank locations in the Batesville area in case any individuals, churchs or organizations wish to donate to help with the family’s expenses.<br />
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When she can, Audra puts new posts on raisingaubree.blogspot.com to try to keep blog watchers informed.<br />
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And she has a request for readers: “Please pray for Aubree and our family.”</em></span></div>
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<span class="text_exposed_show">Larry Stroud also submitted this article to the Associated Press, which formed another brief of the original article. Once it was picked up by the Associated Press, other news organizations picked up the story. KATV in Little Rock aired the story twice, and Today's THV in Little Rock also aired the story. While I appreciate Today's THV wanting to be considerate of our family, we would have had no problem with them sharing her name. I can't seem to get the videos to upload here on the blog. All I get is an error message. Maybe I can figure something out on that later!</span><br />
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<a href="http://www.katv.com/story/20413771/christmas-will-be-away-from-home" target="_blank"> Here</a> is the link to the article on KATV's website. The article is the same on the different news sites that have picked it up. After googling Aubree Elise Shaw, we have found that many other news stations have also picked up the story. While it is neat to see Aubree's adorable picture in a news article, we are more excited about her story being shared and recruiting the prayers of as many people as possible. Also, with these articles comes awareness about Jeunes syndrome and all that it entails. And, from my experience in teaching, I know that with awareness comes acceptance. Our desire is for Aubree to be accepted for who she is, and part of who she is her having Jeunes syndrome. Do not get me wrong; Aubree is sooo much more than Jeunes syndrome. It is just something that we deal with that is more invasive and involved that other challenges some families might face. <br />
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Again, we are overwhelmed by all of the love, prayers, and generousity that has been bestowed upon us during this journey. Thank you all for loving us and our sweet girl and praying for us all along the way. We love you all and cannot tell you how much your support means to us. <br />
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Below are pictures of the article as it appeared in the newspaper, Aubree in her pink fluffy body suit, and Aubree tasting corn on the cob. She loved sucking the juice out of the corn on the cob! </div>
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Audrahttp://www.blogger.com/profile/08364511458490360345noreply@blogger.com3tag:blogger.com,1999:blog-6300746110762910008.post-12026663673092916422012-12-21T14:57:00.001-08:002012-12-21T14:57:32.786-08:00Breaking Out of the Hospital & an Address for Ronald McDonald HouseAubree got discharged from the hospital <br />
mid-day today, and we are so happy to be out of the hospital for a few days. We are settling in at the Ronald McDonald House. Derrick's parents had everything extra clean in preparation for Aubree and even had a Christmas tree set up. It is starting to feel a lot like Christmas since the temperature has dropped here in Philly. It is also quite windy! <br />
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Before we were discharged, Aubree got pictures with some of the great people who have helped us at CHOP. The picture with the ladies are "the play ladies," or child life specialist and play coordinator who were so sweet to have fun activities for Aubree. The younger doctor is Dr. Shah (pronounced like our last name) who was Aubree's resident doctor the while time she was inpatient. He was always so patient and great to answer all of our questions. The other picture is Aubree with Dr. Mayer, the pulmonologist. We have genuinely been so impressed with his level of expertise and care for Aubree. He came by to see her everyday to check on her and answer any questions we had, even though he was not the hospitalist the last two weeks. <br />
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Also, several people have asked for an address for us while we are here. Here is our address:<br />
Ronald McDonald House<br />
Attn.: Derrick Shaw<br />
Room 16<br />
3925 Chestnut Street, <br />
Philadelphia, PA 19104 <br/><br/><div class="separator"style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgU-EBOq0NkA8G7-gBdzXvHUsn-LjCArB-JkuMtUIzmCMxsK6SqNQpd4tb3ganvKamrmIFRAOpHx5bz7oqayTyolrdh70gqpMUwd7c9RBNUfsdQFgTQqcdiAOgRZGDe3dK5y6mCsHlfhU8/s640/blogger-image--1337464607.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgU-EBOq0NkA8G7-gBdzXvHUsn-LjCArB-JkuMtUIzmCMxsK6SqNQpd4tb3ganvKamrmIFRAOpHx5bz7oqayTyolrdh70gqpMUwd7c9RBNUfsdQFgTQqcdiAOgRZGDe3dK5y6mCsHlfhU8/s640/blogger-image--1337464607.jpg" /></a></div> <br/><br/><div class="separator"style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEghkigbq6RSwNqzwGf8WI85nuwIRMvqBPyjvf0iyIpsNc63hlD5P-WqvWwCwRxuAO21ZkdjFcocP_-SUxWeD6qYXrQ9sBgzMjXLs5bmhIal1UOjjxnH2qjFVh7XtnMFuxim80NHPUq-We0/s640/blogger-image-776331297.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEghkigbq6RSwNqzwGf8WI85nuwIRMvqBPyjvf0iyIpsNc63hlD5P-WqvWwCwRxuAO21ZkdjFcocP_-SUxWeD6qYXrQ9sBgzMjXLs5bmhIal1UOjjxnH2qjFVh7XtnMFuxim80NHPUq-We0/s640/blogger-image-776331297.jpg" /></a></div> <br/><br/><div class="separator"style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj5gIeNkieqIuXyH8_ZC8Lw-VugXMLsSUGaz7nRdkJNy0ezLgwefivcBiyDcd0ETOnPmTc3onVv-Wa8K2rGxkTVyhJhJj3vFqVaYWITFMkFF5FHIm8jFYnIR0aZO2GiVKSaLe2t0qFS98M/s640/blogger-image-751636353.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj5gIeNkieqIuXyH8_ZC8Lw-VugXMLsSUGaz7nRdkJNy0ezLgwefivcBiyDcd0ETOnPmTc3onVv-Wa8K2rGxkTVyhJhJj3vFqVaYWITFMkFF5FHIm8jFYnIR0aZO2GiVKSaLe2t0qFS98M/s640/blogger-image-751636353.jpg" /></a></div> <br/><br/><div class="separator"style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiXp_5VcndaWwEbJnT0mUwcj8ke_30psq4yWEDpg6QpBlL918ESi8PMX3h_HmsJnJyqE5vs5t9W1gqcl2alzxhqhaNjYPtvRP0IPK2iZos_znVCPNLH9zviqPltakTPVRn-Ssr2KmdzOlQ/s640/blogger-image-34960555.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiXp_5VcndaWwEbJnT0mUwcj8ke_30psq4yWEDpg6QpBlL918ESi8PMX3h_HmsJnJyqE5vs5t9W1gqcl2alzxhqhaNjYPtvRP0IPK2iZos_znVCPNLH9zviqPltakTPVRn-Ssr2KmdzOlQ/s640/blogger-image-34960555.jpg" /></a></div> <br/><br/><div class="separator"style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjTNF-pKVH2Uf1dLW3uTmYqs7tUTs1VliNUQqsGuB2tlJAiPexBQHa6Qk8aU99EJnStgfXQh38WxqmdH_3spKfQ9EekLbS7dTNaiiDPfvUEtsjg2MhQdzBRXENoZ7o_feqQw2wYFKjnpyI/s640/blogger-image-964280611.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjTNF-pKVH2Uf1dLW3uTmYqs7tUTs1VliNUQqsGuB2tlJAiPexBQHa6Qk8aU99EJnStgfXQh38WxqmdH_3spKfQ9EekLbS7dTNaiiDPfvUEtsjg2MhQdzBRXENoZ7o_feqQw2wYFKjnpyI/s640/blogger-image-964280611.jpg" /></a></div> <br/><br/><div class="separator"style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjgmozFmTr9BNYa091HIYAvNgiYgrtDAIapKahCsvwhERIrYuSCm-1uPLMnCtKEbldbrlO1XoG8eK0svqOi6z5VcK2Yd6TM9uZlYBXxFJTUiCJN4Q4gKwBCnMFveFZDV4NFJZLetUVr5Ys/s640/blogger-image-970350695.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjgmozFmTr9BNYa091HIYAvNgiYgrtDAIapKahCsvwhERIrYuSCm-1uPLMnCtKEbldbrlO1XoG8eK0svqOi6z5VcK2Yd6TM9uZlYBXxFJTUiCJN4Q4gKwBCnMFveFZDV4NFJZLetUVr5Ys/s640/blogger-image-970350695.jpg" /></a></div>Audrahttp://www.blogger.com/profile/08364511458490360345noreply@blogger.com1