tag:blogger.com,1999:blog-52945810291027273552024-02-21T03:06:48.569-06:00Ella's JourneyUnknownnoreply@blogger.comBlogger347125tag:blogger.com,1999:blog-5294581029102727355.post-14498765669801198552019-10-14T21:48:00.000-05:002019-10-14T21:48:21.526-05:00Unexpected Hospital StayWell I say "unexpected" because it wasn't planned but the reality is, we always know a hospital stay is a realistic possibility at any point.<br />
It started Wednesday, we were at church and when Ella came out of class I immediately knew something was off. She looked like she felt sick, her eyes were heavy, her skin was pale, she had a slight bluish tint. I asked her if she was okay and she said she didn't feel well at all. I assumed she had been too active in class because I wasn't there to remind her to take breaks and when she overdoes it she gets these same symptoms (It's not uncommon for her to get bluish/pale and vomit after playing too much), but she assured me that she hadn't been running more than usual. We got her in the car and when we got home we took her temperature and she had a low grade fever. This low grade fever continued each day but still no other symptoms besides a mild scratchy throat until Saturday. On Saturday we heard her cough once or twice and it sounded a bit congested. Jon went to work and Ella and I were home resting. We had been monitoring her sats at home to make sure everything looked okay but by late afternoon I noticed her looking much more blue than she had been so I hooked her up to the pulse ox monitor and her heart rate was a bit elevated and her oxygen was about 15 points lower than her base line (and her base line is already lower than a healthy person's). I called Jon home from work and contacted her Cardiologist and then the Cardiac on call doctor and they told us to bring her to the hospital ER just to be safe. We drove up there and they were ready for us (because cardiology had called ahead to let them know we were coming in) They got her hooked up to the monitors and then started her on some oxygen to bring it up to her baseline. They had to bump her up to 1 1/2 liters of oxygen before she started sitting where she needed to be oxygen wise. They started an IV (poor baby was SO brave even though it was terrible). Then they admitted us to the cardiac floor for overnight observation. Over the night and through the next day Ella continued to desat (drop her oxygen level) even while wearing her oxygen but only when she would get up out of bed. They ran some blood, and some nose swabs and a chest x-ray, the results showed that she was positive for two viruses. Then they did and Echocardiogram just to make sure her heart function hasn't decreased. Praise the Lord her heart function looked good!!! While doing her echo her cardiologist ordered them to get some pictures of her heart while she was standing (Echos are typically done while a patient is laying down) to try to find out why she was desatting with position change. When Ella had her most recent open heart surgery (the Fontan) she had a fenestration put in (which basically means her surgeon created a hole in her heart to help take some of the pressure off of her lungs. This helps the body last longer with the Fontan circulation but it is somewhat controversial. Thankfully for us, her cardiologists agree that it is best for her) Turns out that this virus or viruses have created some extra strain on her lungs and her body is using that fenestration a lot right now, which means it is doing it's job but this also means her oxygen will most likely be lower for the remainder of this illness. Ella's lungs are extra weak due to the damage done from poor blood flow before her surgeries so viruses based in the lungs hit her especially hard. Which is why we are so vigilant about trying to keep her well!! Side note, if you see us out and about and you or someone in your family (or someone you have been around) is sick (even a little), please love us by keeping a safe space between us! I can't begin to express how much anxiety it causes knowing how something so "small" to someone else's immune system can be so BIG to my sweet girl or anyone who is immune compromised for that matter. Ella was sick all summer and has already been sick a few times this fall. We are trying so hard not to isolate her and become little hermits who never leave home, but I have to admit hazmat suits sound pretty dang enticing after watching my baby suffer so much due to germs lately. Please just stay home if you are sick, wash your hands well and often, cover your cough with your arm, and always do your best to protect the most vulnerable among you! Please! I tend to get a bit passionate about germs because they hurt us so much, but back to Ella's hospital stay. Once we got the all clear for her heart function, we got the tests that show what viruses she is dealing with, and found out why she was desatting, they let us discharge her and bring her home! The virus is also causing her eyes to hurt so they had us see the ophthalmologist before we were officially discharged and they checked her eyes thoroughly (poor babe had to have them dilated). He said her eyes look okay and that this isn't uncommon with viral illnesses, he did however update her glasses prescription (due to a stigmatism it had changed). We just got home a bit ago and it will be a little tough waiting this thing out. We will have to bring her back to the hospital if it starts to decline rapidly, so please pray that she heals quickly! The doctor said best case scenario it would probably be at least another week of desatting significantly when she walks. Right now she has a pretty nasty sounding cough that's making us nervous and this virus can lead to pneumonia and some other things like that so please pray specifically against additional infection!<br />
Also for those who have followed Ella's Journey for several years may remember that we have been trying for years to figure out some of her low oxygen issues. We've seen multiple doctors and her case has been seen by multiple hospitals but ultimately we've had no answers. After visiting with another doctor we had some possible confirmations for what Jon and I had been thinking might be the root cause. Well, during this hospital stay the attending cardiologist on the floor was a specialist in this type of problem and he confirmed that while we can't officially diagnose her while she's sick (because her desatting/elevated heart rate are definitely more prominent right now) he thinks we are finally on the right track to figuring some of this out. We are going to explore this more next month with her cardiologist to hopefully get more answers. We would be so grateful for your prayers over this process as well! Testing is complicated and there aren't a lot of clear answers.<br />
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Thanks for always praying for and loving our little family! It means so much to us!Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-5294581029102727355.post-13581664702463575242019-08-09T08:44:00.000-05:002019-08-09T08:44:51.889-05:00A Golden BirthdayOur sweet Sunshine girl is turning 9 on the 9th. And just like that another year has FLOWN by! I feel like the years keep getting shorter and shorter. What a crazy ride it has been the last 9 years. The blessing of Ella's life has reached places in my soul that I didn't even know existed. So many miracles have taken place, so many challenges and painful paths we've had to walk, but our sweet Ella is worth it all. SO SO SO worth it all. You all have been here too, reading along her journey, praying faithfully, celebrating the milestones, and grieving the setbacks. I can't ever thank you all enough for always being a place where I could bring my thoughts and fears and share the prayer requests and know that there were hundreds even thousands of people praying all over the world for our miracle girl. Those early days leading up to her birth and the months and years that followed were filled with so much fear. So many unknowns. 9 surgeries. a few ER visits. Tons of doctor appointments, medications, and tests. We had set backs and feeding hurdles, mystery symptoms and close calls. But through it all our Sunshine was so brave, always smiling, always a fighter. I tell her all the time, "Ella you have Brains, Beauty, and Bravery"! She has faced a lot and has so much still to face. We continue to hold out hope that the scientific advancements will give us more time with our girl, and until then we continue to treasure every day we have with her!<br />
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On to some of the memories we made this year with our girl.<br />
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Ella Girl, you conquered 3rd grade even though you don't really like school (besides science), it seems to come pretty easy to you because you are super smart. You got to visit the Aquarium and have a new found love of sea creatures (specifically great white sharks). You got to go sailing and whale watching. You had mommy dates and daddy dates (one on one time is your favorite). You were diagnosed with Autism Spectrum Disorder (but you already knew you had a "special brain" and you asked us to find out what it was called). You started therapy and you love it. You went to a pumpkin patch and road your first carnival rides (you were so brave and so was Mommy!). You've had 2 more good cardio check ups (we never take those for granted). You got to participate in children's choir at church and join the Sunday school kids.You made your first gingerbread house (it's harder than it looks). You got your new stuffed penguin friend and named him "T-Bone" (you REALLY love him). You visited your cousins (and Aunts, Uncles, Nana and Grandaddy) and one of your best friends in Oklahoma. Mommy and Daddy cut your hair short and you said it "suits you" (we agree). You lost your 10th tooth. Your best friend moved to Florida and came back for a surprise visit. You officially graduated out of any type of booster seat (you said you've been waiting for this moment your whole life). You met a new heart friend who shares your special brain. You have your first official "chore chart" and you are taking on so many new responsibilities. Your cousins came to visit you (and Aunts, Uncles, Nana and Grandaddy). You auditioned for a TV show. We explored Crystal cove together. You were referred to a pulmonologist for some lung testing and we think you have some form of autonomic dysfunction (like your momma). You got super sick with Strep throat that turned into scarlet fever and then before you fully recovered from that you came down with fifths disease (you were sick for 12 weeks and it was scary for a while). You watched the 4th of July parade (our town has a huge one) and you watched the fireworks over the ocean. We went on our first family camping trip and we all had so much fun. You were able to reach a new level of elevation (7,112 ft) and you held your oxygen above 85 as long as you were at rest. You also got to visit Coronado island in San Diego. You are sick again with a cold right now and it's so sad to see you sick on your birthday, but girl we are still going to celebrate YOU! You have been sick more the last few years than all your other years combined but we know it's because you are out having fun and living your life! It's hard on us all when you get sick because it is a reminder to our hearts just how fragile your life is and it takes your little body longer to fight than most but you are always a trooper. We are constantly amazed at how sweet you are when you are in pain. So brave. This time of year, around your birthday, is always filled with reflection. There are thankful sighs, painful tears, and desperate prayers. There are memories and parts of our story that fill my mind that I don't think about as much during the other parts of the year. This time of year is a beautiful reminder of what a miracle your life is. We are completely in awe that we get to be your parents and are so thankful for our unbelievable and un-promised 9 years together. It hasn't been easy baby girl, but God has and will continue to be our strength when we feel scared or weak. He has held you since before you were born and He is holding you still. He and He alone is the keeper of your days, I pray we fill your time on earth with huge amounts of love and memories you can hold close to your heart!<br />
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Happy 9th Birthday Sunshine We Love You SOOO Much!<br />
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Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-5294581029102727355.post-38170122072358341072018-08-09T09:31:00.000-05:002018-08-10T16:20:41.656-05:00Eight.Wow! Our sweet sunshine is 8 years old! What a wonderful life to celebrate! For so long I struggled to see Ella's future. I was so focused on the present and so afraid of the future. But what I've been learning these last several months is that I can fully appreciate and cherish the present and still hope for the future. I guess I thought somehow that if I didn't plan on getting to keep her forever than it would somehow hurt less when we lost her. This is false. Planning or expecting something bad to happen doesn't lessen the blow, it only puts a bigger shadow over the present. So yes, Ella's terminally ill, yes, that is terrifying and I think about it all the time, but I'm not so focused on it that I'm preparing for it anymore. I'm done preparing my heart for the pains of the future. Instead I'm going to live this life along side of her as fully as I possibly can. I'm not going to feel guilty for having fun and living as if we will have a long, full life together. I want to always carry the amazing lessons this journey has taught us, things like, not taking the little things for granted, things like, knowing what's really important in life, things like living now and not waiting to live until later, things like, empathy for the hurting, things like, deep trust and faith in God that only deep difficulty can bring. But I also want to dump the baggage that this journey brings, things like, living in fear, things like, feeling sorry for myself and for my daughter that our lives are different, things like, thinking that my life should be put on hold, things like, trying to be perfect to save her... There is so much beauty and so much pain that walk parallel in the journey of parenting a child with severe health complications. Jon and I are just SO honored we have had the privilege of already having 8 years with our beautiful sweet sunshine girl! My goal this year is to love her and love God so fully that no mater what the future holds I can look back on this time filled with happy moments of LIFE with our sweet miracle girl! <br />
Happy 8th Birthday to our Ella Dawn, your creativity and deep thinking are such special touches from the Father. You spread joy and laughter to everyone you meet, you are strong and brave and full of imagination! You are empathetic and understanding when others are in pain, you are outgoing and talkative! You dream big and want to be so many wonderful things! You love toys and mysteries! You like science experiments and you are becoming a book writing expert! Your drawing skills are amazing to me, and your eye for detail is impressive! You love your special heart, and you seek to know, love, and understand Jesus better everyday! Your communications skills will serve you well in your life! You ask lots of questions and you love silly stories! You love lemonade and individual, undivided, attention, you have conquered many fears these last several months and mommy and daddy are so proud of you! We love you with all of our hearts and hope this year is your best year yet!<br />
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<br />Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-5294581029102727355.post-59050821166044451732018-06-02T22:55:00.002-05:002018-06-02T22:55:45.810-05:00Ella UpdateI decided it was time for an update and when I came to write I realized it's been a year since the last update! Crazy!<br />
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Ella is doing well! We have been to the cardiologist twice in the last year to have her regular tests and just to keep an eye on her heart. At her last appointment she was placed on a heart monitor that she wore for a week (she took her job of making notes about episodes in her book very seriously)! We discussed some of the obstacles she is facing with her cardiologist and we are looking into some specialists. One of the things about living with a heart condition that is so complex is that it comes with lots of side effects and leads to life long struggles that need to be monitored. Right now, none of these issues are life threatening or really even new, it's just that up until recently we have had to focus on more life or death issues and now we are getting a chance to try to address these other issues.<br />
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Ella truly is our miracle. We are just so thankful for her life and for God's mercy in letting us have so much time with her (she will be 8 in August...8!!!!) I'm not sure how that happens so fast! She has really blossomed this last year into a more confident and social girl! She is creative and brave! She loves her special heart because she says she likes being unique! She is getting to do new things all the time, she is a few days out from completing 2nd grade and she is so smart! She is making lots of friends and is getting stronger!<br />
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I think the word I'm searching for here to describe my heart is humbled. Humbled by her life, humbled that I have the honor of being her mom, humbled by the way her life has continually thrown us to the feet of our heavenly father. Humbled. <br />
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We are so thankful for those of you that continue to remember us in your prayers as we walk this path of unknowns and as Ella bravely continues to fight each day! The balance it takes to raise a child labeled "terminally ill" is a moving target. I sometimes say it feels like we are living between life and death. Never comfortable to look too far into the future, always trying so hard to savor the here and now, wanting desperately to slow down time, trying to be fully present in the moments that we have together before it's all gone. At the same time we are trying to live full lives, to give HER a full life of love, laughter, new experiences, daring to hope for a long future, not letting the cloud of sorrow taint the time that we do have together... As her doctor once said, the goal is to give her QUALITY of life even if it can't be quantity of life. Those words have rung in my ears. I want her to have the best life we can give her even if we can't have her forever. It's one of the hardest things in the world to let go when you want to hold tight. God has been faithful and we are sure He will always be faithful. She is His daughter too, and He loves her even more than we ever could. Choosing to trust Him to care for her as she becomes more independent has been a challenge but at the same time, it's been a beautiful season. Learning in a new way what it means to surrender in obedience and watching with joy as her soul is flourishing! <br />
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Just as I knelt, sobbing, the day I heard that she might have a heart problem, just like the time we got her terminal diagnosis, just like multiple times she crashed, just like the times she "shouldn't" have made it, just like the times we've sent her back behind those double doors over and over and over again, just like the multiple times her heart was stopped and restarted, just like the times we were rushed to the hospital... He was there then and He is here now. When I send her into Sunday school for the first time, when I leave her with someone new, when I let her play in a crowded space, when I let her climb the high rocks, when she is out of breath but wants to keep playing, when she steps out of my sight, when she says "mom I think I'm ready to do this"...He is with her, He sees her, He loves her. Our sweet sunshine girl!<br />
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<br />Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-5294581029102727355.post-17386769353023409612017-06-02T16:38:00.000-05:002017-06-02T17:23:25.659-05:00Update<div>
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<span style="font-family: "helvetica neue light" , , "helvetica" , "arial" , sans-serif;">A week ago today we made the trip down to Dallas Children's Medical Center for Ella's regular cardiac check up. We always hope for good news, but the "what ifs" seem to be really good at finding fears that I've been trying to suppress since the last good report. The thing about having a child with a heart defect is you kind of never know when something that would normally not be a big deal could possibly be a big deal. You're tired? oh, no big deal. Or is it, you're tired? Okay your oxygen is low and this is the start of going into heart failure. Sounds a little dramatic, but the reality is, it could be happening. So my job as her mom is to try to do my best to discern what symptoms and complaints are just typical everyday issues, or are they life threatening signs of needing cardiac intervention. No pressure right? Overall though, going into her appointment all of our questions and concerns, aside from the obvious fears of heart function, were minimal. Thankfully her echocardiogram, and her EKG looked stable! She is growing well, and we are always so very thankful for these good reports! Her doctor is sending us to two different specialists for non cardiac related issues, but nothing too severe. She is still not eating great and has tummy pain a lot, plus she has super hypermobile joints and they are causing some pain. One of the things that her cardiologist said to us was that when he looks at her, he thinks she is going to do very well, he said he starts to think about what adult cardiologist he will send her to. Did you catch that? ADULT. Can I just say that when I was a scared pregnant mama being told my baby only had a 20% chance of survival (that would include multiple open heart surgeries and or a heart transplant) and that once she made it past that was told it's only a 50% chance she would make it to the age of 5, I dared not even picture adulthood. In fact even now as I look at my sweet 6 year old miracle I sometimes (read, too often) allow the fear of the unknown to overshadow the hope of her future. I'm working on it. It's a tough balance. The one between the reality that we could lose her and now thankfully the reality that she might continue on for many years into adulthood! I'm going to take this opportunity to give a grateful heart mom shout out to medical advancements, medical research, and all those in the field that don't give up on our children! Thank you for making adulthood possible for our children that didn't have that hope before! Ella is doing very well, she has just completed her 4th year of dance, and this year she participated in her first year of drama. Can I just say her bravery on stage is pretty amazing to me! She still loves to dress up as different characters, she writes THE cutest books, she is a fluent reader, and has just become a 1st grade graduate! Our family is just so thankful for all the prayers we have received over the years! Ella's 4th anniversary of her 4th open heart surgery is Monday, June 5th. We affectionately call it her "Fontaniversary". She loves to celebrate her anniversaries especially this one. Oh goodness, when I think back over what all she has endured and think of where she is now, I am so humbled. What a beautiful gift her life is to our hearts. She is such a deep thinker (like her daddy), she has the invention bug (like her granddaddy) and she has a love for all life. She has the potential to change the world. I am so honored to be her mom. A few mornings ago she came into our room and crawled into our bed for some "mommy time" as we laid there she paused and thoughtfully said "mom?" "what?" "I like being your daughter." Friends, I wanted to cry. If you are a mom chances are you are all too familiar with "mommy guilt", that big ugly liar that tells us we aren't "good enough". Ya, well, when your baby so genuinely says something simple yet beautiful that is basically the opposite of that stupid voice in your head... all the feels. Because this is "Ella's Journey" I haven't shared much about my health here on her blog, but I'm going to give a brief update on my health today as well. I have several health issues that we have been trying to treat for the last 7 years or so, but we just recently spent 7 weeks at the Mayo Clinic in MN getting a ton of tests run. I also received some very intense and somewhat invasive treatments that caused some fairly significant memory loss. During those treatments we had some really exciting discoveries that we are hoping will help in our next treatment plan moving forward! We also discovered that although I've had my heart thoroughly checked in the past by several cardiologists, they had all missed something significant. I was also born with a Congenital Heart Defect. I have something called a Bicuspid Aortic Valve. The cardiologist told me that no intervention is needed at this time, but that it will most likely require an open heart surgery at some point. Ella was excited to hear we would have matching scars. I have to admit, excitement was not my first reaction. My sweet sunshine helped put a positive spin on a really crummy situation. I won't bore you with the other nearly 20 diagnoses I have been labeled with, but we would be thankful if as you continue to pray for our girl you would pray for her mama and daddy too! Also, side note here, Ella and I are the luckiest girls in the whole entire world to have the husband/daddy that we do! I'm pretty sure no one has ever been so loved and cared for in all of history! What a man, I'm so grateful that Ella has such a selfless role model to follow! Anyway, I'm sorry the updates haven't been as frequent as they have been in the past, but with my health, things have been quite challenging and thankfully Ella has been living life without many complications. So although the updates may not be as often, we still very much value your prayers and support as we continue on the path of raising our sweet sunshine! </span></div>
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Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-5294581029102727355.post-24187568841364074952017-02-07T11:04:00.001-06:002017-02-07T11:17:10.088-06:00CHD awareness week<div class="post-body entry-content" id="post-body-5354130781224431325" itemprop="articleBody" style="width: 355px; position: relative;"><span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);">I wrote this a few years ago, but I updated it a bit for this year. Congenital Heart Defect Awareness week is Feb. 7th-14th. National wear red day was this last Friday. </span></div><div class="post-body entry-content" id="post-body-5354130781224431325" itemprop="articleBody" style="width: 355px; position: relative;"><span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);"><br></span></div><div class="post-body entry-content" id="post-body-5354130781224431325" itemprop="articleBody" style="width: 355px; position: relative;"><span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);">The other 364 days.</span></div><div class="post-body entry-content" id="post-body-5354130781224431325" itemprop="articleBody" style="width: 355px; position: relative;"><span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);"><br></span></div><div class="post-body entry-content" id="post-body-5354130781224431325" itemprop="articleBody" style="width: 355px; position: relative;"><span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);">It's not just about wearing red one day a year. <br><br><br>Today is day 1 of CHD awareness week. Today I want to share a little bit about the life behind the red. <br><br><br>On national wear red day, we dress in red and take cute pictures to post to bring awareness. We show off our warriors and remember the angels. We throw out statistics and ask you to join our cause. All of these things matter. They are important. They are good. These are all things that we should be doing, but that is it for most of the outside world. Now what? For you, it's over until next year. For a family affected by CHDs it is day in, day out, 24/7. It never ends. It never goes away. It is always there. <br><br><br>Today I ask that as you read this post that you think about the other 364 days of the year. The other 364 days that we as a heart family face the ugly reality of this life. If you had a child that you knew would be taken from you, but you had no idea when, wouldn't that be scary? If you had to, on multiple occasions, hold your child down while they cry in fear, wouldn't that haunt you? If you have been told that your child would have their heart stopped and restarted multiple times, wouldn't you want to hide from reality? If you knew your child would have delays, restrictions, and extra hurdles, wouldn't that make you wish you could take away the pain? Do you lay in bed at night and wonder if your child is still breathing? If their heart is still beating? Do you watch every day for things that aren't quite right in your child's body language, energy level, or skin color? Do you have medical equipment in your home? Does every decision about what you do, where you go, who you see, what you eat, etc... ultimately lead you to make a choice based on what is least likely to somehow land your child in a hospital or worse, lead to death. Imagine the pressure that comes with that territory. <br><br><br>Congenital Heart Defects are hard to understand. They happen at random, and range from mild to severe. Some require only life long maintenance by a cardiologist. While others require multiple open heart surgeries and or heart transplant. In some cases they can even require a heart and lung transplant due to damaged lungs from lack of proper heart function. There is NO cure. Transplant is not a cure. In fact when Ella was a week old and we went through the process of getting her listed for transplant, we heard all the positives and negatives of a transplant and let me tell you, while transplant is AMAZING and many can live semi normal lives and thrive with a new heart, it is safe to say you want that to be your very last resort. It is truly a scary thing to face. We were blessed that Ella improved enough to keep her native heart at least for the time being. Going through that process was scary especially knowing we may still have to go that route someday in her future.<br><br><br>When a parent receives the news of their child having a CHD, especially if it is one of the more complex ones, their world has forever been changed. Flipped upside down. That feeling that you get that day, that sinking feeling, that anxiety, that guilt that maybe you did something wrong, those emotions, those fears,... they never really go away after that. Sure, they become your "normal" you learn to deal with them and to hold them in and process them later. You do become somewhat desensitized to things that are your reality. You can say things like, my child is terminally ill, my child has had 4 open heart surgeries, my child is turning blue, etc... without bursting into tears. You've heard it, thought it, and said it so many times, that it's... normal?... Yet it feels so unnatural. It is unnatural for a parent to lose a child or to face it everyday, yet for many it is reality. There is a certain grief. The actual grieving process that you go through when you lose a loved one or when you have received news that you are losing a loved one. Maybe it's a long battle with Alzheimer's, maybe a rough bout with cancer, maybe a car accident and it's time to turn off the life support. However you face it, you grieve. I have lost many people in my life. I've been to more funerals then most. Some have been sudden, others have been dragged out painfully slow, like my sweet great granny who I helped care for day after day as she slipped away. Some lives seem gone too soon, yet others you know it was time and even have a small sense of rejoicing with their full life now fully lived. Yet you grieve. You grieve. In many ways, receiving news that you will be giving birth to a terminally ill child feels like a death. Though we have been blessed and Ella's life has already surpassed the expectation, we know that her heart is only good for a time, and so we grieve. This is Ella's life, but it is also a long drawn out process of her death. One might say that is the case of all life and they would be correct. No, no one is promised tomorrow, but I venture to say that if you were told your child would likely die from their sick heart vs. someone saying anyone could pass at anytime. You would understand the difference. It is different. So we grieve. The odd part about our grief is that we have long bouts of happiness and then boom the grief hits us like a soccer punch to the gut, taking away our breath. The stages of grief bounce around hitting us randomly over and over again. Grief is exhausting. While I'm not a grief expert, I speak from experience when I say grief does not only occur once the one you love has passed. The long years of leading up to it force you to face that reality and those fears time and time again. <br><br><br>So family's facing CHDs ugly reality the other 364 days a year thank you for wearing red, why? Because you, someone who has the luxury of turning a blind eye to the pain of the heart world chose to embrace it, even if for one day. A choice to stand arm in arm with the weary heart families and bring hope for the future. It makes a difference. You make a difference. Not only does it show the heartbroken and the grieving that they are not alone or forgotten, but is shows the world that there is something out there that is stealing the lives of our children! While I don't like the comparison of CHD's to childhood cancer in the whole debate of which is worse, because lets face it, they both are horrible and both take far too many lives, I would like for CHD to be known by the world the way cancer is. If someone hears that a child is diagnosed with cancer, they instantly know what that means; however, if someone is diagnosed with a CHD people say "what?" Did you know that in the United States, twice as many children die from congenital heart defects each year than from ALL forms of childhood cancer combined? Does this take away from the horrible fact that cancer exists and that it takes these precious lives? Absolutely NOT! But doesn't it make you wonder why you haven't heard of Congenital Heart Defects before perhaps following Ella's story. It makes me wonder why I didn't know what that meant before Ella was diagnosed. If it is killing twice as many more children then all childhood cancers why didn't I know about it? If a doctor had looked at me and told me my child had cancer vs. being told she had a CHD I would have known what he was saying. Why? Because of lack of awareness. Again, I'm not in ANY way taking away from the pain of cancer, in fact, if cancer had been our diagnoses it would have been devastating. I'm only raising the question of why isn't CHD known? What can we do to change this? Why does it even matter? Well, it isn't known because of lack of funding and awareness, we can help change this by speaking about it, by wearing RED on national wear red day, by funding pediatric heart programs, It matters because kids are dying, mine included and truth be told it could be yours. Ultimately awareness leads to funding and then research and new surgeries and medications and treatments come into existence. That gives us hope. We need people to fight for them, to constantly research. A hospital with the sole focus being find a cure for CHD's. It doesn't exist. We need funding, we need support, we need awareness. That's why it matters if you wear red on national wear red day, that's why it matters if the people in your life are familiar with the term CHD. That's why congenital heart defect awareness week matters. <br><br><br></span><div align="center" style="text-align: start;"><span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);">Awareness and research are what turn this...</span></div><div class="separator" style="clear: both;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhTqMTtyESLaOwERgwcww4tBNLJgpzxbosS60hnYDHeuHhvYTAWB-44hFM2sc6_ogH8g5riNUs8fG9sDPS-4bKysvzl4Y2_As_QAHiZyUeDLExGX7ZYAfD7b-6i4w9U0TtBdOKBf73e5-0/s1600/041.JPG" imageanchor="1" style="text-decoration: none; -webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);"><font color="#000000"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhTqMTtyESLaOwERgwcww4tBNLJgpzxbosS60hnYDHeuHhvYTAWB-44hFM2sc6_ogH8g5riNUs8fG9sDPS-4bKysvzl4Y2_As_QAHiZyUeDLExGX7ZYAfD7b-6i4w9U0TtBdOKBf73e5-0/s280/041.JPG" height="186" width="280" style="max-width: 100%; border: 1px solid rgb(233, 233, 233); position: relative; padding: 5px; -webkit-box-shadow: rgba(0, 0, 0, 0.0980392) 1px 1px 5px; box-shadow: rgba(0, 0, 0, 0.0980392) 1px 1px 5px; box-sizing: border-box;"></font></a></div><div class="separator" style="clear: both;"><span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);"><br></span></div><div align="center" style="text-align: start;"><span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);">...Into this. </span></div><span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);"><br><br></span><div class="separator" style="clear: both;"><div class="separator" style="clear: both;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg9YrYpAucrfSFxwQbREDCeXEma4pQ6wSKdEtvAY3q2y6bQ4Ba6dsMaUfwkzUzOZqPn8qoJbhifnw1uYz33RQgSmeM6yCf5rLtYpcfxHCCq0V7grBwsHYf6EsyJ38Fje1QHym0kswIyxgs/s640/blogger-image--89646805.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg9YrYpAucrfSFxwQbREDCeXEma4pQ6wSKdEtvAY3q2y6bQ4Ba6dsMaUfwkzUzOZqPn8qoJbhifnw1uYz33RQgSmeM6yCf5rLtYpcfxHCCq0V7grBwsHYf6EsyJ38Fje1QHym0kswIyxgs/s640/blogger-image--89646805.jpg"></a></div><br></div><div class="separator" style="clear: both;"><span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);"><br></span></div><div class="separator" style="clear: both;"><span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);">It matters, because If Ella had been born 5 or 6 years before she was, there would have been no chance for her at all. It matters because advancements are being made and lives are being saved. Let's keep bringing awareness to a disease that shouldn't steal away our beautiful children! </span></div><span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);"><span id="goog_1173436916"></span><span id="goog_1173436917"><br></span><br><br><br></span><br><div style="font-family: 'Helvetica Neue Light', HelveticaNeue-Light, helvetica, arial, sans-serif; font-size: 14px; -webkit-text-size-adjust: auto; clear: both;"></div></div>Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-5294581029102727355.post-35029532645912640612016-09-14T16:38:00.001-05:002016-09-14T18:30:06.880-05:00Post surgery update<div><div class="separator" style="clear: both;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi9QpiJtQucEMfQ5lW9kaLAhG6QGlx2CylAI-EqdGN0z6OF8siO47z5yOQ1ADfhJ_ilUPtZ4Gwp-SN5s8WwlPALraul9C7WUeawcY-nc3OiTPnLWtVUejy2p_MAv3UzUKWO2-DVXk33hi4/s640/blogger-image-1279625987.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi9QpiJtQucEMfQ5lW9kaLAhG6QGlx2CylAI-EqdGN0z6OF8siO47z5yOQ1ADfhJ_ilUPtZ4Gwp-SN5s8WwlPALraul9C7WUeawcY-nc3OiTPnLWtVUejy2p_MAv3UzUKWO2-DVXk33hi4/s640/blogger-image-1279625987.jpg"></a></div></div>Ella's cath surgery went well. It was very hard on her emotionally the night before and the morning of, but she did amazing! The surgery did not reveal any problems and things look beautiful inside! While that is great news it also means we don't have a clear answer as to why Ella is having the symptoms that she is having. At this time we will continue as we have been, just knowing that Ella has more limits activity wise then we were expecting, but, that we may be able to improve that some if we work hard on helping her build endurance. Once she came out of surgery she didn't feel very good and had to keep her leg straight for four hours and her throat hurt pretty bad from the ventilator, they had to pull her IV, and once it was time for her to start sitting up she threw up. After that they wanted to keep us for a little while longer just to make sure she was okay before letting us go back to the Ronald McDonald House. She had to have a special pressure bandage that we had to leave on for 24 hours and we just took that off once we got home and the sight looks really good. She seems to be feeling pretty good, she hasn't complained about too much pain at all, just minor and hasn't needed any additional pain meds. I've even had to remind her not to run or jump a few times! As always the staff at Dallas Childrens were incredible, the nurses that cared for her pre and post op were so nice! It made the whole day much easier for all of us! <div><br></div><div>Daddy made her an indoor tent at the RMH!<br><div><div class="separator" style="clear: both;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEheI6oVWdhrjpAhLppG2jFOwEpwQCkifP7sxmtIrKNRO3DYvDboTSbN30gXcfSEdSwBAgPE7etr4b6b7EbZ8N01eFQZTKdVzwjul8RVijHUzzkKgK_IHGfoyXxKHPBlxfyOqTTTU6efScQ/s640/blogger-image-1001026512.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEheI6oVWdhrjpAhLppG2jFOwEpwQCkifP7sxmtIrKNRO3DYvDboTSbN30gXcfSEdSwBAgPE7etr4b6b7EbZ8N01eFQZTKdVzwjul8RVijHUzzkKgK_IHGfoyXxKHPBlxfyOqTTTU6efScQ/s640/blogger-image-1001026512.jpg"></a></div><div class="separator" style="clear: both;">Pre cath snuggles, smiles, and "see Ya laters" (never gets easier... not pictured all the tears)!</div><div class="separator" style="clear: both;"><div class="separator" style="clear: both;"><div class="separator" style="clear: both;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjBMGlGOEC27RsC1Vl27fLtsEANQKgjeSI2n33gYn6t-F_KqA0weBE8Q09BQq1_SodhuG_lX1rvCzHnDKhYpuW6TMANKcHNYLUpwrsJVCVBHcoai93aRV24UZNClpz6dZrC_-azySlyJQM/s640/blogger-image--1263591796.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjBMGlGOEC27RsC1Vl27fLtsEANQKgjeSI2n33gYn6t-F_KqA0weBE8Q09BQq1_SodhuG_lX1rvCzHnDKhYpuW6TMANKcHNYLUpwrsJVCVBHcoai93aRV24UZNClpz6dZrC_-azySlyJQM/s640/blogger-image--1263591796.jpg"></a></div><div class="separator" style="clear: both;"><br></div><div class="separator" style="clear: both;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjqcC-M8EU6aE5KX2j3ELWe62JvrQU8-Ehg6tQW01uu0M0K_7Oy1Q5ZezVtXOjiSHHoCpQ99-AmsIqRqc0Xyg4ofohxUKwbrsSTNCSaJVijsRRxi6-ehoqbDckS5kqVH_V3xQtoBG-fm0M/s640/blogger-image--1425696482.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjqcC-M8EU6aE5KX2j3ELWe62JvrQU8-Ehg6tQW01uu0M0K_7Oy1Q5ZezVtXOjiSHHoCpQ99-AmsIqRqc0Xyg4ofohxUKwbrsSTNCSaJVijsRRxi6-ehoqbDckS5kqVH_V3xQtoBG-fm0M/s640/blogger-image--1425696482.jpg"></a></div><div class="separator" style="clear: both;"><br></div></div></div><div class="separator" style="clear: both;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhvJ0Fex56tTqnM36WwtMm6UWI8IBhGntk-BOgHs_4jgY4daRbQARzvpkBNxNoQMHbUjQ4005KzPVGxjVtfuuDkzbLIYiu1F-4fMpGhgJq8i7zrW2SI31iKx23Woe848EfGtchgBQ8t8gM/s640/blogger-image--742146896.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhvJ0Fex56tTqnM36WwtMm6UWI8IBhGntk-BOgHs_4jgY4daRbQARzvpkBNxNoQMHbUjQ4005KzPVGxjVtfuuDkzbLIYiu1F-4fMpGhgJq8i7zrW2SI31iKx23Woe848EfGtchgBQ8t8gM/s640/blogger-image--742146896.jpg"></a></div><div class="separator" style="clear: both;"><br></div><div class="separator" style="clear: both;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi0ehOT5Z789WD6CE_4bBDUm9aGtOuMBx1NopX8JSSAwZhjdjgcJXbc-sj8YqfLGFQt-f7U1as-3ssxcfl7bDh5NLX-3TB08hFArepY_SxiKWZKFq78SlMzZsVLCaz-ZqHUH3GJsuG1hXQ/s640/blogger-image--1261736786.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi0ehOT5Z789WD6CE_4bBDUm9aGtOuMBx1NopX8JSSAwZhjdjgcJXbc-sj8YqfLGFQt-f7U1as-3ssxcfl7bDh5NLX-3TB08hFArepY_SxiKWZKFq78SlMzZsVLCaz-ZqHUH3GJsuG1hXQ/s640/blogger-image--1261736786.jpg"></a></div><div class="separator" style="clear: both;"><br></div><div class="separator" style="clear: both;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi13G5eyQA7BZ0XZ7VCjNZ4hm20T66gkKI1Yfi-vtHRXtXXuoxieZgtmHM6qJOz1S_V_XV9rseh60Oq81umc6aKq2cxxkuJUygnTOHf-BiU2mHuT89OIcmPvoZOz6qzrQ5Bmz_BsDB1Xas/s640/blogger-image--723060731.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi13G5eyQA7BZ0XZ7VCjNZ4hm20T66gkKI1Yfi-vtHRXtXXuoxieZgtmHM6qJOz1S_V_XV9rseh60Oq81umc6aKq2cxxkuJUygnTOHf-BiU2mHuT89OIcmPvoZOz6qzrQ5Bmz_BsDB1Xas/s640/blogger-image--723060731.jpg"></a></div><div class="separator" style="clear: both;"><br></div><div class="separator" style="clear: both;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh77OlDnQnbpelkkktfzea36zA49bJRoKnPH9oqUMfmRFS1CxUvdJPgYuPko0qZ6ImEZvqln1x9ieoqCkLUwUNWNDoBjjTpTMoqJOnjKXM0FwxOklC1Npx8QR90uJvruD8iyhOYOEfWp7c/s640/blogger-image-942476465.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh77OlDnQnbpelkkktfzea36zA49bJRoKnPH9oqUMfmRFS1CxUvdJPgYuPko0qZ6ImEZvqln1x9ieoqCkLUwUNWNDoBjjTpTMoqJOnjKXM0FwxOklC1Npx8QR90uJvruD8iyhOYOEfWp7c/s640/blogger-image-942476465.jpg"></a></div><div><br></div>Post cath recovery and discharge!<br><div><div class="separator" style="clear: both;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjv_l0kftiF7PYT7emruO5JbAWi3HRA2uOpIncjUZawwyrsC1tZjC0GPYcztjtGc7llzkSRmszlN7hG6hnuwO1BzJOBYXIHm9qAfgS9lJuRQDZVzsJxKcuWmFSuSK2mH0fnNV44WCGme58/s640/blogger-image-1689119824.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjv_l0kftiF7PYT7emruO5JbAWi3HRA2uOpIncjUZawwyrsC1tZjC0GPYcztjtGc7llzkSRmszlN7hG6hnuwO1BzJOBYXIHm9qAfgS9lJuRQDZVzsJxKcuWmFSuSK2mH0fnNV44WCGme58/s640/blogger-image-1689119824.jpg"></a></div><div class="separator" style="clear: both;"><br></div><div class="separator" style="clear: both;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEicsv1Hr76sq5s3dga8Yw1AOGxkX_eGYu16CVGCmJYnqLLZeMDMUbMK2QFjE_YV7vna2QfaWN0-zsYKOGrfbE9nNrknCrFo6P0yitmGnAbqA1QL-5bLux0z9SLehq27ayT7B6PUUstrSv0/s640/blogger-image--493476762.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEicsv1Hr76sq5s3dga8Yw1AOGxkX_eGYu16CVGCmJYnqLLZeMDMUbMK2QFjE_YV7vna2QfaWN0-zsYKOGrfbE9nNrknCrFo6P0yitmGnAbqA1QL-5bLux0z9SLehq27ayT7B6PUUstrSv0/s640/blogger-image--493476762.jpg"></a></div><div class="separator" style="clear: both;"><br></div><div class="separator" style="clear: both;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiQxQQLyrhLBDgZ-a7DHVKjLDCMnjz0kyj4RzE-_uj4yIlXB8AIxvPFsLxSpQWP4S5naptklhnPmKBOx7_2R_wSL5W8C2Gi57qyRGhK_yQpKljjY9du5xkCAPD-u9gqCixFjGSy1YUMLaQ/s640/blogger-image-13802793.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiQxQQLyrhLBDgZ-a7DHVKjLDCMnjz0kyj4RzE-_uj4yIlXB8AIxvPFsLxSpQWP4S5naptklhnPmKBOx7_2R_wSL5W8C2Gi57qyRGhK_yQpKljjY9du5xkCAPD-u9gqCixFjGSy1YUMLaQ/s640/blogger-image-13802793.jpg"></a></div><div class="separator" style="clear: both;"><br></div><div class="separator" style="clear: both;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhuNE3O8YfkbySaA_OGkvGYvfnOKA1QUj85EgnBfSJMhHuCsj2UTKJXDQxeKmW7Lh35mIymFFRTGxM_qvD92Rzo5ZiUSGtZoRE74d4rLRMOz5YyqE46_imv8cwiGIF2UicqbPgGHf62wwI/s640/blogger-image--1565566737.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhuNE3O8YfkbySaA_OGkvGYvfnOKA1QUj85EgnBfSJMhHuCsj2UTKJXDQxeKmW7Lh35mIymFFRTGxM_qvD92Rzo5ZiUSGtZoRE74d4rLRMOz5YyqE46_imv8cwiGIF2UicqbPgGHf62wwI/s640/blogger-image--1565566737.jpg"></a></div><div class="separator" style="clear: both;">Recovery snuggles at the RMH with the best daddy ever! </div><div class="separator" style="clear: both;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhXElHSqIYp2yDGbVM1IIPio3mgeXMaPt2OQRCdnXtDiAggwv0tk1WB7B0m4bp0X79q9O38Zvd-OQXK-BA36MAEkHDgETKMr79aKIJn0tnBAm9xYFmNI2MpZvCHOQWS2KRM5Gv8IIecJQc/s640/blogger-image-76620878.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhXElHSqIYp2yDGbVM1IIPio3mgeXMaPt2OQRCdnXtDiAggwv0tk1WB7B0m4bp0X79q9O38Zvd-OQXK-BA36MAEkHDgETKMr79aKIJn0tnBAm9xYFmNI2MpZvCHOQWS2KRM5Gv8IIecJQc/s640/blogger-image-76620878.jpg"></a></div></div><div>Please continue to pray for her healing process and for no sickness or infection! Also please pray for her mind as she processes what she went through, so far she is verbilizing well but is experiencing some after anxiety. Nothing too severe, just some things here and there trigger it for her and so prayer for us to be able to have wisdom to help her through those emotions are so appriciated! </div><div><br></div><div>We made it safely home and I'm hoping we all get some MUCH NEEDED rest tonight and that Ella has no nightmares.</div><div><div class="separator" style="clear: both;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhRIolveBUKGMrfqdVsI1elRLmALTWniMpzraUUfItZjeaip66b_fQTDGP8HWz0ViGOmJNWCPWwoqYlgIYD2CddhCXskVWNLfPBuVhb7gaTQk15WpQ5-amvV9_g4crozGDerHkP9-uv5jc/s640/blogger-image-235272241.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhRIolveBUKGMrfqdVsI1elRLmALTWniMpzraUUfItZjeaip66b_fQTDGP8HWz0ViGOmJNWCPWwoqYlgIYD2CddhCXskVWNLfPBuVhb7gaTQk15WpQ5-amvV9_g4crozGDerHkP9-uv5jc/s640/blogger-image-235272241.jpg"></a></div><br></div><div>Last but certainly not least, I want to wish my sweet, amazing, strong, kind, angel, of a husband a happy 9th wedding anniversary! Living life along side of you has taught me so many things. Having you for a husband, team mate, and best friend, and watching you be a father are truly some of my greatest blessings. I love you forever and always, thanks for choosing me! </div><div><div class="separator" style="clear: both;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjjz1JSjTEdXTc8P2LzIFk2o5mrd0bCRkW0qnhdiDIDsDoL4hJepVZRxlaTMuovZKaaZoYfUqOV-cjP5xvEoZMyD8yk1vfyPBqvUfTv-BP3_qKS1cjlpySEIUNuJ6IWUuN48KL3IxxOkmE/s640/blogger-image--1521055529.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjjz1JSjTEdXTc8P2LzIFk2o5mrd0bCRkW0qnhdiDIDsDoL4hJepVZRxlaTMuovZKaaZoYfUqOV-cjP5xvEoZMyD8yk1vfyPBqvUfTv-BP3_qKS1cjlpySEIUNuJ6IWUuN48KL3IxxOkmE/s640/blogger-image--1521055529.jpg"></a></div><div class="separator" style="clear: both;"><div class="separator" style="clear: both;"><br></div><br></div></div></div></div>Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-5294581029102727355.post-57160469158910520172016-09-08T14:42:00.000-05:002016-09-08T14:56:03.068-05:00Long time no update!No we haven't fallen off the face of the earth, we've just had our plate full and blogging fell by the wayside. <div><div class="separator" style="clear: both;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhOfHBNdfhzn-t1TYLviTYmvGIpmdOxGWUSDDo9w8H2al1xDS182pQFJyrvUchxduaTjSauW_tY_IoDpWI2aSIzJRypM1KQ4Bj0-U4REYuP6Jma_xoMuo7CjUpUiDtgSXK9vd7Wtr8pKtQ/s640/blogger-image-1698956715.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhOfHBNdfhzn-t1TYLviTYmvGIpmdOxGWUSDDo9w8H2al1xDS182pQFJyrvUchxduaTjSauW_tY_IoDpWI2aSIzJRypM1KQ4Bj0-U4REYuP6Jma_xoMuo7CjUpUiDtgSXK9vd7Wtr8pKtQ/s640/blogger-image-1698956715.jpg"></a></div></div><div>
Over the last year so so so much has happened and Ella is growing up crazy fast! Just a quick recap of some of the events (in no particular order)!<br>
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-Ella had another dance recital<div><div class="separator" style="clear: both;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgrvrH68ZncJtQBn1LFeedpVxPq0IbhURWOmSGC7dnqmvuYQSEmWSW717t1aPlzZWn0t1abQDjUXC-FkvJsmxs_l59lkaRbrBUozqA9UGzLYtm4-uZ7Gj1SM2WQJc2Q0hXaT7E7T9Ontmg/s640/blogger-image--975473207.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgrvrH68ZncJtQBn1LFeedpVxPq0IbhURWOmSGC7dnqmvuYQSEmWSW717t1aPlzZWn0t1abQDjUXC-FkvJsmxs_l59lkaRbrBUozqA9UGzLYtm4-uZ7Gj1SM2WQJc2Q0hXaT7E7T9Ontmg/s640/blogger-image--975473207.jpg"></a></div><div class="separator" style="clear: both;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh_8QQA4OpCFOV-hwx0LBFK5CNZxt6sMRq1k_NiH9CBqEqiomh9oaNi7_BImGhyT03r6_7xCnxZx65trT7tSu07r94Pc2XEzcE397S8DrC8et8ZYnr9OD2CFgC8vtNrlgdS9b3gvjhyphenhyphen4zo/s640/blogger-image--175671663.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh_8QQA4OpCFOV-hwx0LBFK5CNZxt6sMRq1k_NiH9CBqEqiomh9oaNi7_BImGhyT03r6_7xCnxZx65trT7tSu07r94Pc2XEzcE397S8DrC8et8ZYnr9OD2CFgC8vtNrlgdS9b3gvjhyphenhyphen4zo/s640/blogger-image--175671663.jpg"></a></div>-She lost her first two teeth</div><div><div class="separator" style="clear: both;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiNimhJ14du97uFn1pFM7Qu29msHo6dyWuTRBINeoN75dJmrLsdw2idRZtZ80ANQ-Phig6Tui5hnFOklkGHf93JbSagDIeYsSPRP2Cqf5vlt0IZGjdRXNDnKWjyvZrvt6JOyv02qhKJafU/s640/blogger-image--1965992793.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiNimhJ14du97uFn1pFM7Qu29msHo6dyWuTRBINeoN75dJmrLsdw2idRZtZ80ANQ-Phig6Tui5hnFOklkGHf93JbSagDIeYsSPRP2Cqf5vlt0IZGjdRXNDnKWjyvZrvt6JOyv02qhKJafU/s640/blogger-image--1965992793.jpg"></a></div>-She started first grade</div><div><div class="separator" style="clear: both;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg58rGKiou08kWNAejJl79syQTK4ybE468iqcc9mON1WKtWkbYVyIqeKNh_xNCfNY4I7ZIcComZqMU2Wmlv5qdh3BPWz1AjbKSj1c49-u75jWG-Kxxi24i8pIUZATnpvSAAw1QolzcMYzc/s640/blogger-image--1626843741.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg58rGKiou08kWNAejJl79syQTK4ybE468iqcc9mON1WKtWkbYVyIqeKNh_xNCfNY4I7ZIcComZqMU2Wmlv5qdh3BPWz1AjbKSj1c49-u75jWG-Kxxi24i8pIUZATnpvSAAw1QolzcMYzc/s640/blogger-image--1626843741.jpg"></a></div>-She started drama class</div><div><div class="separator" style="clear: both;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgnHNbr4C-mRU7FyP8osQkpXa6uvkhkHtEZdPJXO2cd-ZkPpnopSGjV-OkKz3Q3XkRRaEFSQha32_M43tb2LXf9ktSczUfnGeGxFuHlNVj6LojbhVXla0Nc4vHvAmkRsUEnYRjDDYiinxg/s640/blogger-image--1316086614.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgnHNbr4C-mRU7FyP8osQkpXa6uvkhkHtEZdPJXO2cd-ZkPpnopSGjV-OkKz3Q3XkRRaEFSQha32_M43tb2LXf9ktSczUfnGeGxFuHlNVj6LojbhVXla0Nc4vHvAmkRsUEnYRjDDYiinxg/s640/blogger-image--1316086614.jpg"></a></div>-She is 47 inches tall and weighs 47 pounds</div><div><div class="separator" style="clear: both;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgWSf_MF3eYQ_IN8hTRW0KtcQjfD8NYFkQCpxnIChnGRQT3EEK42oHOQ4qzhzWfpYPfcjoLwI38APDSXi8mpZIe1-CverTZuERW9TSadoxzfAPcj_iNb6Jvx6Jvc3RPDcR9NHKzlVfP-m0/s640/blogger-image--638123647.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgWSf_MF3eYQ_IN8hTRW0KtcQjfD8NYFkQCpxnIChnGRQT3EEK42oHOQ4qzhzWfpYPfcjoLwI38APDSXi8mpZIe1-CverTZuERW9TSadoxzfAPcj_iNb6Jvx6Jvc3RPDcR9NHKzlVfP-m0/s640/blogger-image--638123647.jpg"></a></div>-She loves making her own books and dressing up as different characters</div><div><div class="separator" style="clear: both;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhnPesZvTh92XNsNwyD1rRgn_jZSSgCIkIGrBRqFrL-WW9MLOLVdjn0FrajoHKoFg3nSn6p2TKkYqMbeaK5yN3wmoAgbikdNdLnW5HkJva_Oy06McuSt7QI4ctMHNsXnd9uZFKoY1GO2as/s640/blogger-image--642309398.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhnPesZvTh92XNsNwyD1rRgn_jZSSgCIkIGrBRqFrL-WW9MLOLVdjn0FrajoHKoFg3nSn6p2TKkYqMbeaK5yN3wmoAgbikdNdLnW5HkJva_Oy06McuSt7QI4ctMHNsXnd9uZFKoY1GO2as/s640/blogger-image--642309398.jpg"></a></div><div class="separator" style="clear: both;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhOpSwG4JNzyHCztv6WTcqJpkQPXR-nL5pO0-dpBboLwn_ZUJH3zuXSZoexA6qKaZTJM8uYg7rmyVjbwz7Ajkpgyxm-Tpjc2BzR8AiyYlUTyPXSk0DUFXT-6-5W2h3tJCqB8R7l5R3zedg/s640/blogger-image--1172710745.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhOpSwG4JNzyHCztv6WTcqJpkQPXR-nL5pO0-dpBboLwn_ZUJH3zuXSZoexA6qKaZTJM8uYg7rmyVjbwz7Ajkpgyxm-Tpjc2BzR8AiyYlUTyPXSk0DUFXT-6-5W2h3tJCqB8R7l5R3zedg/s640/blogger-image--1172710745.jpg"></a></div>-She is learning to swim in our new pool</div><div><div class="separator" style="clear: both;"><div class="separator" style="clear: both;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi7RE8zELlKL56n9rWnfk7-duPZ6GC4l7B354uyUZ29LQEV4Asj9o0Zl3xWilJvU4A1mZ8chE_Tr8SaxqLaBHghqrt9WbcGdD2iPOmykSODcPQTnWRLztmVM2dH6hUHSCyaCU7pQF4YFNg/s640/blogger-image--912048970.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi7RE8zELlKL56n9rWnfk7-duPZ6GC4l7B354uyUZ29LQEV4Asj9o0Zl3xWilJvU4A1mZ8chE_Tr8SaxqLaBHghqrt9WbcGdD2iPOmykSODcPQTnWRLztmVM2dH6hUHSCyaCU7pQF4YFNg/s640/blogger-image--912048970.jpg"></a></div></div>-She is learning to ride her bike that she got for Christmas</div><div><div class="separator" style="clear: both;"><div class="separator" style="clear: both;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhRX-S0G4jrOf3BMKCAadrKAa1UB2WUAHi6etu9KitaRqnvjjTc26pdPyJhg-xDw_ZbDc45IFeaEzqSoI5ZaBTlM9k-2yape7nU3adivfMcOci4Fn8ju_ObBfWJCWsMddDDRlmTIZmj43E/s640/blogger-image--1454662292.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhRX-S0G4jrOf3BMKCAadrKAa1UB2WUAHi6etu9KitaRqnvjjTc26pdPyJhg-xDw_ZbDc45IFeaEzqSoI5ZaBTlM9k-2yape7nU3adivfMcOci4Fn8ju_ObBfWJCWsMddDDRlmTIZmj43E/s640/blogger-image--1454662292.jpg"></a></div></div>-She adores her next door "neighbor friends"</div><div><div class="separator" style="clear: both;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiqmykgU77L5DbCwSuTHaM3GJl-ygc7q1or86Jk8aysXeInRDkO9cXo5V1RlHKRZc59dJLEcniEvpESCLSlD5JW5HImjgoqxaWZXF046Xk2AFTUxO5avRdOGJYu8nATilMNbs1Z6vmtJWw/s640/blogger-image--1955454805.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiqmykgU77L5DbCwSuTHaM3GJl-ygc7q1or86Jk8aysXeInRDkO9cXo5V1RlHKRZc59dJLEcniEvpESCLSlD5JW5HImjgoqxaWZXF046Xk2AFTUxO5avRdOGJYu8nATilMNbs1Z6vmtJWw/s640/blogger-image--1955454805.jpg"></a></div>-She turned 6... yes 6!</div><div><div class="separator" style="clear: both;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiEkkzfMj2gonDGloG9NJj6dXuFy_viwX5bUirrTT37dQt2CbW1i9a1tuYG64Ss-OJ1cyLJNjkOkKKlHRl3zsYegq1JACTKyb2uRK4iS4VsM03yAiQfJU1Q316IKOyUaBRv1vDmO8DAnyY/s640/blogger-image--1308553217.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiEkkzfMj2gonDGloG9NJj6dXuFy_viwX5bUirrTT37dQt2CbW1i9a1tuYG64Ss-OJ1cyLJNjkOkKKlHRl3zsYegq1JACTKyb2uRK4iS4VsM03yAiQfJU1Q316IKOyUaBRv1vDmO8DAnyY/s640/blogger-image--1308553217.jpg"></a></div><div class="separator" style="clear: both;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiWip_G4LiOUE-Gt0IIH97VsIYZi8kpc2SThxG72NsarBOdep_h9Mvc3dwEZexiJROKjAqVk2Ti83WnTzsXgLCuehV1RzKwkNqhMUVvwfGLZi8J_KjjVNavywu4_6Xtx9sRkWokxpiafzg/s640/blogger-image--339130820.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiWip_G4LiOUE-Gt0IIH97VsIYZi8kpc2SThxG72NsarBOdep_h9Mvc3dwEZexiJROKjAqVk2Ti83WnTzsXgLCuehV1RzKwkNqhMUVvwfGLZi8J_KjjVNavywu4_6Xtx9sRkWokxpiafzg/s640/blogger-image--339130820.jpg"></a></div><div class="separator" style="clear: both;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh8r6Se6AJjxy0IF5_ciWhv1BoDFJLEfdnCOcGJNrmUNv756HNlIRKjeO1gWeviq2KCrhHvgft63pfm9DIxq62cLmFU94-25xgYcj3KeBfLFHgEaWoNBPrjbPTbrf4-nsptvqf2HOUOYVU/s640/blogger-image-121248281.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh8r6Se6AJjxy0IF5_ciWhv1BoDFJLEfdnCOcGJNrmUNv756HNlIRKjeO1gWeviq2KCrhHvgft63pfm9DIxq62cLmFU94-25xgYcj3KeBfLFHgEaWoNBPrjbPTbrf4-nsptvqf2HOUOYVU/s640/blogger-image-121248281.jpg"></a></div>-She got glasses </div><div><div class="separator" style="clear: both;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg3mk5WXjpZctwTW48JteWUt4z-nOcDgqM4_I20SPHdvmnNX8RS9wgXTXMbXGphU_ZlrgV5qTt0zR-pb9EJV8pYtHfPaNcKkDj7v-yFLUfBGTOTcQd9TRxZYvQwXIUm1miuugsdMWa9I0U/s640/blogger-image--2139783779.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg3mk5WXjpZctwTW48JteWUt4z-nOcDgqM4_I20SPHdvmnNX8RS9wgXTXMbXGphU_ZlrgV5qTt0zR-pb9EJV8pYtHfPaNcKkDj7v-yFLUfBGTOTcQd9TRxZYvQwXIUm1miuugsdMWa9I0U/s640/blogger-image--2139783779.jpg"></a></div>-She had her first dentist appointment</div><div><div class="separator" style="clear: both;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgZ5aTn07_QMonBkKRRXHz_6KjsjaCEuo8Yqeybn-QIfjtiymVjyGif0g34VyhJJJcD_Yjv3qhsDNKaVdhzmVaiC7boAa8a82bWYZqE-ua36klxJOQ2ixV8ou24KfSll1x7jvXX-5Z94oA/s640/blogger-image-1009152073.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgZ5aTn07_QMonBkKRRXHz_6KjsjaCEuo8Yqeybn-QIfjtiymVjyGif0g34VyhJJJcD_Yjv3qhsDNKaVdhzmVaiC7boAa8a82bWYZqE-ua36klxJOQ2ixV8ou24KfSll1x7jvXX-5Z94oA/s640/blogger-image-1009152073.jpg"></a></div>-She hosted a fun pool party and ran her own lemonade stand</div><div><div class="separator" style="clear: both;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjdKIpHO2c7aHSx7gJ47zK2x_jkSz4bENGrT0Rpb8CwAHZ9ADBvrwxQnXG3mOSxbcFUoGgu5M7wMpwBFSErLYrRGFe9mAO7N-5T8P1OpA-KlP2xCUhtEQSxNYXX8tcIYp6EYOJidtP8KPc/s640/blogger-image--1832490770.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjdKIpHO2c7aHSx7gJ47zK2x_jkSz4bENGrT0Rpb8CwAHZ9ADBvrwxQnXG3mOSxbcFUoGgu5M7wMpwBFSErLYrRGFe9mAO7N-5T8P1OpA-KlP2xCUhtEQSxNYXX8tcIYp6EYOJidtP8KPc/s640/blogger-image--1832490770.jpg"></a></div><br>She has come so far and this year has been full! <br>
<br>
<b>Heart health update</b>.<br>
<br>
Overall Ella is doing well, we see her cardiologist at least every 6 months and never get over the miracle of a good report! She has had a few things that have been a small concern for quite some time now. She still seems to lack endurance and energy that even with half of a heart they expect her to have and she is still having blue spells from time to time with activity. We've discussed these issues with her cardiologist multiple times and since her echocardiograms and EKGs have looked good and the symptoms haven't seemed too severe we have just kept an eye on her. We recently discovered that she is dealing with a high heart rate (tachycardia) with minimal activity and that seems to be causing her lack of endurance. For example we hooked her up to her pulse ox machine and let her play the wii. She ran/jogged in place for about 1 minute and her heart rate topped out at 191 and her oxygen was 84. You can imagine why she doesn't feel up to more activity and when she pushes herself to keep up with other kids she ends up losing her color and throwing up. We just finished doing a 24 hour holter monitor on her at home just to see how she does through a typical day (of course when I monitored her along side the holter her heart rate wasn't as high, but I guess that's how it usually goes!) We haven't heard those results yet. Based on her symptoms and the fact that we have been dealing with this for over a year and it isn't getting any better we, with her cardiologist, have made the very hard decision to send her into her 9th surgery. What it comes down to is, as good as the tests look on the outside, there are just some things that can't be seen unless they get inside. We are scared and struggling with sending her into surgery again. It's been 3 years since her last surgery and now that she is older we are sad that she will likely remember this surgery so well. The good news is that this will be a cath surgery NOT open heart! Much less risk and recovery time is minimal. That being said it is still surgery and she will still have to be put on a ventilator when she goes under and there are always risks involved. I'm not going to pretend this is easy or that I'm emotionally ready to send her back again, but Jon and I both feel a peace that this is the next step. There are a lot of unknowns and scary possibilities with the results or the outcome of this surgery but we are putting our trust in the one who already knows what that is going to be. Ella's surgery is next week. We will go into pre op on Sept. 12th and surgery is scheduled for 7:30am Sept. 13th. We have waited to share the news of her upcoming surgery until we had told her because we knew she needed to hear it from us and not a well meaning friend asking how we were doing with the upcoming surgery. She handled the news well and is scared but oh so very brave. She is mostly looking forward to watching movies in the hospital while she recovers and is dreading the lab work and IV the most, she said "the rest I'm okay with". <br>
<br>
Will you join us in praying for our sweet sunshine as we send her back once again? Please pray for the staff, the surgeon, the results, safety from germs while we are there, prayers for strength, prayers for Ella's anxiety... etc. We just ask that you cover us in prayer. We know that this will not be easy, but we are trusting that God is in control. </div><div><div class="separator" style="clear: both;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjN0iZLj-7KKOjNKuim7YKqhRkCU43dPAcuOKHZx-ygy0oKODbUZuwjOpvIe5_jB1v1yc-qQuQcYNynlUMIZs2jwKUd6NotlnfKr8kCGTKE3KSEYc3di273LARsxigWoD-LAmC-qxlJEMA/s640/blogger-image-634004506.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjN0iZLj-7KKOjNKuim7YKqhRkCU43dPAcuOKHZx-ygy0oKODbUZuwjOpvIe5_jB1v1yc-qQuQcYNynlUMIZs2jwKUd6NotlnfKr8kCGTKE3KSEYc3di273LARsxigWoD-LAmC-qxlJEMA/s640/blogger-image-634004506.jpg"></a></div> <br>
<br></div></div>Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-5294581029102727355.post-52606092372506984132015-08-23T08:56:00.001-05:002015-08-23T08:56:01.891-05:005 years post Norwood<div><div class="separator" style="clear: both;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjY_xXi2DhP9Tb8qxWnmRR2dZdNZE0BMJRdYweFIwV_Bh3FaLTcUqoujdnwUCDW5IPNXHKSagYOpnvHaevJ_T0snXaS_kCX4PIOHEbiz6C-2xTpLGcIwpmdExTDnPIHcyDsPjaK5OJeEUQ/s640/blogger-image-326035149.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjY_xXi2DhP9Tb8qxWnmRR2dZdNZE0BMJRdYweFIwV_Bh3FaLTcUqoujdnwUCDW5IPNXHKSagYOpnvHaevJ_T0snXaS_kCX4PIOHEbiz6C-2xTpLGcIwpmdExTDnPIHcyDsPjaK5OJeEUQ/s640/blogger-image-326035149.jpg"></a></div><br></div>It was 5 years ago today that we sent our two week old baby girl into her second open heart surgery. The same surgery that they were unable to do the week before that ended up with an emergent decision by her surgeon that had saved her life. The week between her first week surgery and this one we went through the process of getting her listed for transplant. It was a long scary process and we were told she would be listed 1A. Meaning first on the list to receive a heart if one came available. She was that sick, that fragile. It was so hard. But we, along with our army of prayer warriors railed together to storm the gates of heaven with our pleas for God to save her life and heal her sick lungs to support her half of a heart. Because in the words of her doctors, her lungs are too damaged to support a broken heart. But in that week, our mighty God used the first surgery to send the perfect amount of blood too her lungs and they slowly day by day they began to grow stronger. So at two weeks old her surgeon decided that her lungs were ready to try the first surgery again. She went in and the many hours went by, and when she came out she was swollen from being on the bypass machine, she was still on the ventilator, and her chest was still open covered only by a translucent amber colored type of plastic. We could see her heart beating inside and it made me physically ill. But she was alive! About 12 hours into recovery things went downhill fast. We were losing her, or so we thought. The room was full of doctors and nurses all rushing around, the life support machine was brought in and the surgeon had been called to come back to the hospital to hook it up... But we didn't have time to wait. The doctors gave her a dose of medication that they call "poison" it's an awful medication, but sometimes it can save a life. It was our only option. They gave her dose after dose and it wasn't working. They had maxed out on the allotted amount and the doctor called someone on the phone and I heard them arguing over what to do, he wanted to give her one more dose, but the lady on the other side of the phone basically told him it was a death sentence. He explained that we were losing her and the surgeon <div>hadn't arrived yet. They both knew the risk, but went ahead and decided to go through with one more dose. The doctor explained to us the place we were in and we all agreed to give it one more try. Then her doctor came over and prayed with us. That's when it happened. Instead of her death her heart started to stabilize! God had heard our pleas and He had mercy. Today we celebrate His goodness!!! </div>Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-5294581029102727355.post-43267798772206933762015-07-27T12:31:00.001-05:002015-07-27T12:44:38.263-05:00It's been 5 years<div><br></div><div><div class="separator" style="clear: both;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgrlR4-eOtMP973wHW8m8xWwSDFAC2v_q-rKn68xT1f2iqxbSTXbvgs5dOZiKJFyzjm88lZoy7xEYKjKffoAwYkDt0BtNYxqD-B0w-T0Z_iSiSmOmH8DdDsxawwFDdcwElg4FnWmBsTlmA/s640/blogger-image--894220563.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgrlR4-eOtMP973wHW8m8xWwSDFAC2v_q-rKn68xT1f2iqxbSTXbvgs5dOZiKJFyzjm88lZoy7xEYKjKffoAwYkDt0BtNYxqD-B0w-T0Z_iSiSmOmH8DdDsxawwFDdcwElg4FnWmBsTlmA/s640/blogger-image--894220563.jpg"></a></div><br></div>It's been five years since we left our little home, heading to Dallas to face the unknown of Ella's birth. In just a mere 13 days our miracle baby girl will turn five years old. I'm not sure how that's possible! Every year on this day I reflect because it's the day that everything really became a reality. Of course it was already our reality with so many doctors appointments, but this was the day we left our home and we knew that on that day, five years ago, when we came home we would either have a fragile baby post open heart surgery or we would come home with empty arms, an empty nursery, and broken hearts. Either way, we knew when we returned home our lives would be forever changed. We had no idea how long we would be gone or even if it would possibly end up being a permanent move to Dallas, depending on her condition when she was born. It was a scary day, I remember arriving at the Ronald McDonald house exhausted and still so sick from the pregnancy. Of course we will never be able to express our gratitude for the Ronald McDonald house and all that it provided for us while we were there, but it wasn't home. And we were there under very hard circumstances. It's not the way we wanted everything to work, and because we knew we may be spending our last 13 days with our baby girl I desperately wanted to be home with her. As I look back over the last five years I'm humbled by the miracles that God has done on behalf of our baby girl. It has been far from easy, there's been so much pain both physical and emotional, but worth every single second of sacrifice and tears. She is such a ray of light in our world, our sweet sunshine. We can't wait to celebrate her fifth year of life and hope for many many more! <div><div class="separator" style="clear: both;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEioxWyi-4L3B3UKXLL2j1AvogxnHxD2NSfjQRH-QBpy-_Bm3oUJ8WXYi5terHTFxC-xVKMSGm2cbpd2Lm_K_LuXxbvNkAHpRuykHLsaTOvY08LoT2EcK5C-SBMihw1K_SvFjDf6xnitkes/s640/blogger-image--1031997315.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEioxWyi-4L3B3UKXLL2j1AvogxnHxD2NSfjQRH-QBpy-_Bm3oUJ8WXYi5terHTFxC-xVKMSGm2cbpd2Lm_K_LuXxbvNkAHpRuykHLsaTOvY08LoT2EcK5C-SBMihw1K_SvFjDf6xnitkes/s640/blogger-image--1031997315.jpg"></a></div><br></div>Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-5294581029102727355.post-29485374622984709272015-06-06T14:13:00.001-05:002015-06-06T14:13:09.623-05:00Update on cardiology appt. and a special moment!!<div class="separator" style="clear: both;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjmhS-lBkqhELZBL5jV2Hdy2nGIOIxA2Gakb-a9xflf_5yt4QIUfCQi36iE-bCtgzrWBmjsOFe-__AkXIQqfJSilQ0reGe7dbYMR6gWs_cqTmlu5i-u9Xmiun61emD4xolPPXz29tkHnis/s640/blogger-image-13685955.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjmhS-lBkqhELZBL5jV2Hdy2nGIOIxA2Gakb-a9xflf_5yt4QIUfCQi36iE-bCtgzrWBmjsOFe-__AkXIQqfJSilQ0reGe7dbYMR6gWs_cqTmlu5i-u9Xmiun61emD4xolPPXz29tkHnis/s640/blogger-image-13685955.jpg"></a></div>Yesterday's appt went well! As always it was a long trip driving to Dallas and back in one day, but Ella was a trooper! Most importantly we got a good report on Ella's heart! Everything continues to look wonderful and we are just so thankful for each and every good report! Our next step will be to continue to pursue her GI issues with her GI doctor and we will see her cardiologist again in October! <div><br></div><div>As you all know, yesterday was the 2 year anniversary of Ella's 4th open heart surgery. Celebrating that by being back in the hospital was not our idea of fun, but we made the best of it and had an incredibly special moment. Ella had drawn a picture for her surgeon of him operating on her, so since we were going to be at the hospital we decided to stop by his office to see if he was in so she could hand deliver it. Unfortunately he was in surgery at the time, so we gave the picture to one of the ladies that works in his office to give to him, but after hearing Ella tell her all about the picture we decided to go back to his office and wait for him to come back so he could hear for himself because it was just so cute!! When he came in Ella was able to give it to him and tell him all about it! It was just so sweet! It turned out to be a great way to celebrate being two years post Fontan after all!<div class="separator" style="clear: both;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgbrwGzMuWls4wWn17hh4pCapor-wElHlND8j0mCgp-w6rLNV4C9bFMsRyLs374SJ1QVswptRa5X2dIgm4ybzQLfUCa6s1IYzHoNzMk5PJd_2kR_7CbqnHKISPV8OjfiuntUsiqJiHSMPo/s640/blogger-image--1496955713.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgbrwGzMuWls4wWn17hh4pCapor-wElHlND8j0mCgp-w6rLNV4C9bFMsRyLs374SJ1QVswptRa5X2dIgm4ybzQLfUCa6s1IYzHoNzMk5PJd_2kR_7CbqnHKISPV8OjfiuntUsiqJiHSMPo/s640/blogger-image--1496955713.jpg"></a></div></div><div class="separator" style="clear: both;"><div class="separator" style="clear: both;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiaF-7Mc8c8gemsL97bBDdjk4IstuKwmcQrm4c27dbOFzJ6DaT-MrLtyfPM0cXoILEt_IyATjLfB3XtgFAblvL5VN1WYuwNgaWwJY0cjguMjc3ofhVrYQAcNTQwRkcimSt4ghu0ai_n60Q/s640/blogger-image-1912617071.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiaF-7Mc8c8gemsL97bBDdjk4IstuKwmcQrm4c27dbOFzJ6DaT-MrLtyfPM0cXoILEt_IyATjLfB3XtgFAblvL5VN1WYuwNgaWwJY0cjguMjc3ofhVrYQAcNTQwRkcimSt4ghu0ai_n60Q/s640/blogger-image-1912617071.jpg"></a></div><br></div>Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-5294581029102727355.post-52716365458713849512015-06-03T18:04:00.002-05:002015-06-03T18:04:13.462-05:002 yearsI can't believe it's been two years since I got the call asking if we could be in Dallas the next morning for pre op and send our baby into her 4th open heart surgery the day after that. We knew it was coming, but we weren't prepared for it to be so soon. Ella needed the surgery and they had a last minute opening so we took it. It was emotional and stressful to pack for an unknown amount of time in one night. Friends went out and shopped for the things we needed and delivered them to our door late that night. We packed as fast as we could and tried to get some sleep before heading out early the next morning to face the long drive and an even longer day of pre op testing. It was all a bit of a whirlwind of fear and focusing on what needed to be done. There were tears as we drove away wondering once again if it would be the last time our family would ever be home together. <br />
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We drove straight to the hospital, we didn't even have time to drop off our luggage at the Ronald McDonald House. There were weight checks, blood draws, EKG, echo cardiogram, blood pressure check... but Jesus was with us and Ella was so very brave. By evening we left the clinic and went to settle into the RMH to spend our last night out of the hospital for awhile. We ate in the courtyard and played in the grass. I gave her as many hugs and kisses as I could and kept telling her that I loved her. We had done our best to prepare her for what the next day would hold for her, but how do you tell a 2 year old that they will be having open heart surgery... again. She was all smiles and beautiful innocence and although we couldn't see her sick heart beating inside her scared chest, we could see it affecting her. She was out of breath and her color was often blue as her oxygen would plummet as she tried to walk or dance or play. The scary part was no one could tell us why this was happening and no one knew if this surgery would help. We knew we had to do something, so after getting second and third opinions from other top surgeons at other hospitals, it was unanimous that this had to be our next step. That night before surgery we didn't get much rest. We had already sent her into open heart surgery 3 times before, but it never gets easier... in fact I dare to say it was harder. <br />
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That morning June 5th 2013 We were up early for our check in, we let Ella wear her most comfy PJs even though they didn't match. We checked in and did more of the typical testing, Ella cried. It was scarier that day, I think she knew it was different. We tried to smile and be calming to reassure her, but inside my heart was aching so deeply. I just wanted to run away, It wasn't fair that she was having to do this yet again and as always in the not so back of my mind was the biggest question of all... will she make it? Will I ever see her eyes again? Hear her voice? Did I tell her I love her enough? Will I see her smile again? It's not only death that I feared, it was also all of the complications that can come along with such a high risk surgery that can forever alter who she is. Stroke, brain bleed, damaged vocal chords, infection...etc. With all the thoughts rushing through my heart and mind I watched as the medicine began to kick in and she started to get sleepy and silly. I was thankful for the medicine to help her relax yet it felt like her personality was slipping away and I knew I wouldn't see it again until she recovered... if she recovered. We sign form after form giving our consent for treatment, and they remind us of the possibility of death but we have to sign it anyway because she needs it. Then when I saw the anesthesiologist and his team I knew the time had come to send her back to the OR. I looked him in the eye and begged him to take good care of my baby. We then had to take the dreaded walk along her bed as she was wheeled to the doors and then we gave our last hugs and kisses before surgery and we put all of our heart in someone else's hands and she disappeared from our sight. <br />
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We found a seat and waited for what seemed like forever between those hourly phone updates from the OR nurse. With each good report I felt a sigh of relief yet I still held my breath. Then finally the call that it is finished and that it went well. We got a quick glimpse of her cold, somewhat puffy, face as she passed through on her way to the PCICU. She was sedated and on a ventilator but she was alive.<br />
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The surgery was over, but the hard part was far from over. She woke up scared wondering why she couldn't talk. The ventilator going through her vocal chords made it impossible to make any sound. She gaged over the tube down her throat and fought hard to sit up just merely an hour or two after having her sternum cracked open, her heart stopped, cut on and worked on, restarted, and then her sternum tied together with wires and her skin sewn back together. It took 3 or 4 of us to hold her down and try to calm her. She is a fighter. She is strong. Once the ventilator was removed, she looked at me and said "now I can go home" She so desperately wanted to leave. She was begging for water that she couldn't have and it broke my heart to have to tell her "not yet" over and over again. She refused to use a diaper so she stood up and went on a bedside potty chair. She was on Lasix which helps take the fluid off of your body and it makes it very hard to hold it, yet our 2 year old insisted that she would make it to a potty every single time despite the pain and vomiting when she would stand, and make it she did. She blew our expectations out of the water! Jon and I looked at each other across her bed and said "she is doing so good"! We couldn't believe how well she was handling it all, how well she understood and how determined she was to get up and walk. It was hard, there were lots of tears and refusal of meds, and vomiting and painful dressing changes and those dreaded drain tubes, but through it all she persevered. She was a true hero. <br />
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By God's grace 8 days later we were discharged from the hospital and when we got to the Ronald McDonald House, she ran for the very first time. Gosh what a beautiful moment that was! Her heart had held her back in ways we didn't even know. She had never been able to run or jump, but now those things were in her reach. It took several months to "get back to normal", she had nightmares and would wake up scared and crying, there was still lots of vomiting a small appetite, but she did it. God did it. Now as I reflect over these last two years I feel emotional and extreme gratefulness for the mercy of God and for the blessing of these last two years with her. This Friday June 5th will be the 2 year anniversary of Ella's Fontan surgery and we will be in Dallas yet again seeing her cardiologist. Because this journey it isn't over. It's a daily fight. Her half of a heart is beating hard and working twice as hard as a whole heart. We know that our time with her is limited, we know that in an instant we could lose it all, but we also know that we can't live there. We must constantly choose to treasure the here, treasure the now. We pray for many many many years with our baby, but we know that just because she has done so well thus far doesn't mean that her future will be the same. I think it's easy to look at her from the outside and forget all that God has done in her life, forget all the moments we "should" have lost her, all the moments that we have come through, but as her mom, it's always on my mind. Not always to the deepest degree, but there isn't a day that goes by that I don't think about it multiple times a day. It is a part of nearly every decision, every outing, every meal, every get together... everything. <br />
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I just can't believe it's been 2 years since we handed her over. The gratitude that fills my heart exceeds the ability of words to express. So I will continue to hold her close, to constantly shower her with hugs, kisses, and "I love you"s. I will keep feeling her heart beat and always take the time to listen to her breath and I will remember that every moment is a gift. I will never forget and I will do my best to never take her life for granted. I have seen far too many mommies have to say "see ya later", so for them and for me, I choose to cherish Ella's time here on the earth to the deepest of my capability. Each day is one more day together and each day is one day closer to our see ya later. I think it's okay to know that. I thinks it's okay to think about that. I think it drives me to treasure her deeper then I otherwise could. I don't sit around all day crying about it, but I do cry. I don't fill my days with worry and fret, but I do have fear. I refuse to let my sadness and fear steal the moments that I have with her. I speak truth to my heart as best as I can and while the truth is that she is terminally ill the truth is also that Jesus will never leave us or forsake us. When the pain and fear are so much that I feel like I can't do it I sometimes fall apart, but when I am able to refocus again on the here and the now, and My heavenly Fathers comforting arms of peace I can live in the moment again. <br />
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Friends there is so much pain and sorrow in this world, but praise the Lord we can have Joy and peace in the midst of the storm. We thank you for continuing to life up our family in prayer, it means so much to us as we face the daily struggles that come along with this journey. We will be heading to Dallas on Friday to meet with Ella's cardiologist to discuss her heart and a few other things. I will try to update when we get back!<br />
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Here are some pics of us getting the privilege of living life with our sunshine! <br />
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We had a family date night and took Ella to see her first movie in a theater. We saw "Cinderella". Then we took a carriage ride and had dinner!<br />
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Ella had her 2nd dance recital and of course LOVES every minute of being on stage! </div>
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Then we celebrated Mother's Day 2015! </div>
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She loves my new patio swing :)</div>
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And she loves her daddy almost as much as he loves her! </div>
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Then we took Ella to get a new summer do and she looks adorable! </div>
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<br />Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-5294581029102727355.post-57889386654169053842015-04-09T13:50:00.001-05:002015-04-09T14:33:30.574-05:00Prayer requests and Easter<div><br></div><div>We have some prayer requests. </div><div><br></div><div>Will you pray for two of our heart friends, Owen and Emma? They are both dealing with decreased heart function and are in the CICU. Emma has HLHS/IAS like Ella and is recovering from open heart surgery, Owen is post transplant and went in this morning for a precautionary echo since he was having tummy trouble and the echo showed decreased heart function that was "emergent". Emma and Owen are both in need of prayers! </div><div><br></div><div>Also Ella is still dealing with her GI issues and they are causing quite a bit of discomfort. She is also breaking out in hives on a regular basis and we haven't been able to figure out why just yet. This has been going on for about 2 months and some days it's worse then others. We think it may have something to do with her laxatives possibly, however we can't stop them just yet or she has more tummy problems. Ugh, not fun for our poor baby! She has also had some low oxygen that isn't too much of a concern to her cardiologist at this time, but could at some point be something we need to look into further. Right now it is mostly just discouraging since it causes Ella to not have as much energy as she could and also it doesn't give her as much of a cushion for illnesses that can cause her oxygen to drop. </div><div><br></div><div>We covet your prayers as we lean on God's strength to keep moving forward through the unknowns of this life. </div><div><br></div><div>Easter 2015- was spent at home with just the three of us celebrating the fact that Jesus is alive and because of His sacrifice and love someday our suffering will end and our hearts, minds, and bodies will be made whole in His presence! </div><div><div class="separator" style="clear: both;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg-wAJcD07JHaLJzgYdxhj5cHrL7NlogmKAmDReoLx02OZXffvhzyRX4yJick-vgbxkYpI-oKA1Nffl63lialUIvoWSCSbtCSsOU473Ttre7sS749bPmPSjjKcTO7NBw_Wm18_FnFjS_oo/s640/blogger-image--1456474110.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg-wAJcD07JHaLJzgYdxhj5cHrL7NlogmKAmDReoLx02OZXffvhzyRX4yJick-vgbxkYpI-oKA1Nffl63lialUIvoWSCSbtCSsOU473Ttre7sS749bPmPSjjKcTO7NBw_Wm18_FnFjS_oo/s640/blogger-image--1456474110.jpg"></a></div><br></div><div>A few weeks prior we did get to celebrate Easter with our family! </div><div><div class="separator" style="clear: both;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiY0YFpNnhs-y0R93dWGqFc_Rs6EiazoocO9DP1kGU3KnfuCK9rT_sU9WjpL9nJz2CPqPDtuQ835O44jqBrCOtJ2nn1WEjR8uui6iXweZWblsff4m4uWlY2yvHCSprhJZEXyNT45dg26zU/s640/blogger-image--19032747.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiY0YFpNnhs-y0R93dWGqFc_Rs6EiazoocO9DP1kGU3KnfuCK9rT_sU9WjpL9nJz2CPqPDtuQ835O44jqBrCOtJ2nn1WEjR8uui6iXweZWblsff4m4uWlY2yvHCSprhJZEXyNT45dg26zU/s640/blogger-image--19032747.jpg"></a></div><br></div><div><div class="separator" style="clear: both;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgypHIE8qZd9UgFu_hDC6KqEUDCrCyk7f2eRvvjnHjPmp4qdvoVylfRIAuuuQuz1KQ6U1j6WsgPFiCpeCCKlNgsi3mKY2-4gVuvNnnObouC1Dd8GEAKLVaQ-Q_kCBjbv74Wk7Xx9phNsdg/s640/blogger-image-1623838025.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgypHIE8qZd9UgFu_hDC6KqEUDCrCyk7f2eRvvjnHjPmp4qdvoVylfRIAuuuQuz1KQ6U1j6WsgPFiCpeCCKlNgsi3mKY2-4gVuvNnnObouC1Dd8GEAKLVaQ-Q_kCBjbv74Wk7Xx9phNsdg/s640/blogger-image-1623838025.jpg"></a></div><br><div class="separator" style="clear: both;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEglJZY5S6Lhf92y0-a8zFL893sOn97rGkCNz7FTEQG4KTVQpyMLJ3bmE1obFXS60RzgTTMWWvVch0akQcNA7drhlwwB3qAV0t6xqrohyphenhyphenMF2IEo4WXG9iT5cIZktTbVJo1uMgssMLgDxPCk/s640/blogger-image--1749035566.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEglJZY5S6Lhf92y0-a8zFL893sOn97rGkCNz7FTEQG4KTVQpyMLJ3bmE1obFXS60RzgTTMWWvVch0akQcNA7drhlwwB3qAV0t6xqrohyphenhyphenMF2IEo4WXG9iT5cIZktTbVJo1uMgssMLgDxPCk/s640/blogger-image--1749035566.jpg"></a></div></div>Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-5294581029102727355.post-40738262633403693952015-03-19T15:04:00.001-05:002015-03-19T15:04:08.125-05:00Update on Our trip to Dallas<div class="separator" style="clear: both;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj5ZWWKq6OaO5cIkf7EOPUX9wpRYWn90mnvRWE6Yb79N5YkR4diNVjaaKKi1mVOOcHOA9z6lmkrh2PFRqoYoSi42G-QrGxBOvIydHVdGs6j9oBQ3sb-ZikEAk1XCS4nmqXX3Kj3wa3bZAU/s640/blogger-image--2086684720.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj5ZWWKq6OaO5cIkf7EOPUX9wpRYWn90mnvRWE6Yb79N5YkR4diNVjaaKKi1mVOOcHOA9z6lmkrh2PFRqoYoSi42G-QrGxBOvIydHVdGs6j9oBQ3sb-ZikEAk1XCS4nmqXX3Kj3wa3bZAU/s640/blogger-image--2086684720.jpg"></a></div>We took Ella to see her GI specialist in Dallas yesterday. It was a smooth trip and Ella did very well. She is still having some trouble eating, lots of stomach pain, her energy level has been a little bit low, and her bowels have still not been normal. She is on four medications/supplements and a special diet to help with this. We are excited we are going to be able to start weaning some of these medications and supplements as she tolerates it. One of Ella's biggest problems is that she doesn't go to the bathroom regularly, and has incredible bladder control. When we saw the doctor yesterday he told Ella she can't hold it like that anymore (we tell her that all the time, but I guess it's different coming from a doctor 😉)! Ella was able to repeat to us what the doctor said and has been doing very very well ever since then! This morning she told me that her stomach felt all better! It's amazing what being regular will do for ones tummy! Please keep praying that we are able to help her move in the right direction and that we are able to wean some of the medicine and lean more on natural sources! We will be heading back to Dallas to follow up with GI and to see cardiology in about 3 months if everything goes well between now and then! As always we are so very thankful for your continued prayers!! <div><div class="separator" style="clear: both;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi8aUva63qQ9nIGoff5sRgyUjJNm-95oalTfZ9_t6_46z-I3Xw8Zs0_HBrvlBRNikJMkVOM5Z65Lc_lvqLoZX7RLcsByAc_ZRZpMeDwRFxtVJglqf18-wz3nJlMCH4C3M7Vd3Icmxbh-_k/s640/blogger-image-788358970.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi8aUva63qQ9nIGoff5sRgyUjJNm-95oalTfZ9_t6_46z-I3Xw8Zs0_HBrvlBRNikJMkVOM5Z65Lc_lvqLoZX7RLcsByAc_ZRZpMeDwRFxtVJglqf18-wz3nJlMCH4C3M7Vd3Icmxbh-_k/s640/blogger-image-788358970.jpg"></a></div><div class="separator" style="clear: both;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhIjS1X3Pnb_451nnW-_Zq1EgxZrsSnXofM8YfQDFWDTr7YmO56skneiz-DpmXPSRkYLv962bVGSXuz5KFYxmiTPEvbj9C1AKa11gKYCHfc-XPrnFeWiXuw8EDfw2dmhaDy5ns_QZlCbwc/s640/blogger-image-1304649795.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhIjS1X3Pnb_451nnW-_Zq1EgxZrsSnXofM8YfQDFWDTr7YmO56skneiz-DpmXPSRkYLv962bVGSXuz5KFYxmiTPEvbj9C1AKa11gKYCHfc-XPrnFeWiXuw8EDfw2dmhaDy5ns_QZlCbwc/s640/blogger-image-1304649795.jpg"></a></div><div class="separator" style="clear: both;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhrAhoDpfgQ_Y17I-M9vmLO8MDkiVWxmVLnntu0wGJB6o1CKSDOkLEMZ2T9JOKzHi4qnb8PDFvzIC4iwQ3bWiMaNTWxhNFrX3cthjETyf9lzBbVmJMTIWD91EkWIavJRVee__PwtuwhxCU/s640/blogger-image--252837777.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhrAhoDpfgQ_Y17I-M9vmLO8MDkiVWxmVLnntu0wGJB6o1CKSDOkLEMZ2T9JOKzHi4qnb8PDFvzIC4iwQ3bWiMaNTWxhNFrX3cthjETyf9lzBbVmJMTIWD91EkWIavJRVee__PwtuwhxCU/s640/blogger-image--252837777.jpg"></a></div><div class="separator" style="clear: both;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEifaL7mhO8FZKVstHQhHpneLEY0AHIYI9NFRamFLh1mnpXGy2H614jvBZSU5tm9o8s7P6j1v5wa33YKxCPDjGaqwy3HCWK4V1PypWQtt6YjAkgmP22ywHtvPdloW0H8T1WfyZtBTixDW-0/s640/blogger-image-153615735.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEifaL7mhO8FZKVstHQhHpneLEY0AHIYI9NFRamFLh1mnpXGy2H614jvBZSU5tm9o8s7P6j1v5wa33YKxCPDjGaqwy3HCWK4V1PypWQtt6YjAkgmP22ywHtvPdloW0H8T1WfyZtBTixDW-0/s640/blogger-image-153615735.jpg"></a></div><div class="separator" style="clear: both;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjFDKRYMnvhzesvq8RqWUptUHK2bGS1ByG5CGcegOcFEggteblHS_r_RyrJSjo7jGXXBn9sDqrOwKRMnol9429Ny8Yhx2y6qQcAq4gFc26PPWxQfk41t3Akp0GP2yOzQ01h7LnyvjkKVMs/s640/blogger-image--1948675974.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjFDKRYMnvhzesvq8RqWUptUHK2bGS1ByG5CGcegOcFEggteblHS_r_RyrJSjo7jGXXBn9sDqrOwKRMnol9429Ny8Yhx2y6qQcAq4gFc26PPWxQfk41t3Akp0GP2yOzQ01h7LnyvjkKVMs/s640/blogger-image--1948675974.jpg"></a></div><div class="separator" style="clear: both;"><br></div><br></div>Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-5294581029102727355.post-60130297002952507072015-03-10T14:10:00.000-05:002015-03-10T14:10:27.220-05:00UpdateJust a quick update since it's been awhile! Ella is doing fairly well, but is having a few problems. We got a viral bug of some sort that has lasted what seems like forever, but Ella has handled it very well and we are so thankful.<br />
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We are planning to head down to Dallas next week to hopefully figure a few things out. Please pray that the doctors have wisdom and that we are able to get some answers as to what is going on in Ella's body. She looks great most of the time, but Jon and I see it close up and we can tell it's just not quite right, so we just hope the doctors can see what we see and figure out a way to help her. <br />
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We would be honored if you would join us in praying for answers for Ella as well as safety from germs and safety in travels. This flu season has been so yucky and we are thankful that so far we have avoided most of the things going around. Also if you would remember our little heart friend "Emma" in your prayers as well as her mom and dad I know they would be grateful! She is having some more complications and it's so hard. You can follow her story on their blog <a href="http://www.emmajanae.blogspot.com/">www.emmajanae.blogspot.com</a>. <br />
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Here are a few recent pics of our sunshine girl!<br />
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Dressing up like Queen Elsa<br />
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Playing with the neighbors!<br />
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Family walk on Valentine's Day!<br />
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These two silly loves on Valentine's Day! </div>
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Sick baby girl resting. </div>
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Out for a walk exploring!</div>
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Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-5294581029102727355.post-58527612868366442162015-02-13T13:12:00.001-06:002015-02-13T13:13:48.355-06:00Ella's famous ;)Second post of the day! I'm on a roll! A while back we were contacted by the Dallas hospital where Ella is seen and were asked to share Her story for their annual report! We were honored for the opertunity! The report just came out today and we wanted to share the article with all of you! <a href="http://t.co/qaAbsDALDU">http://t.co/qaAbsDALDU</a>! It's exciting to see a little bit of her amazing story published!<div><br><div>This is our family wearing red on the 6th! </div><div><div class="separator" style="clear: both;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEijK_cc3LIGGbCupVhKOjQBJrIdFmOADQgLLJcjx9nM-XuzE1X1B0_uyrmuzniUeVHtyAsTzpIp6JPp6C4oYUsORB5GzaogpIblb0YlmMD-FY79RG2fNTKtiRn7IK0tqXnd7oMb1qSrofk/s640/blogger-image-286362464.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEijK_cc3LIGGbCupVhKOjQBJrIdFmOADQgLLJcjx9nM-XuzE1X1B0_uyrmuzniUeVHtyAsTzpIp6JPp6C4oYUsORB5GzaogpIblb0YlmMD-FY79RG2fNTKtiRn7IK0tqXnd7oMb1qSrofk/s640/blogger-image-286362464.jpg"></a></div><br><div><br></div></div></div>Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-5294581029102727355.post-77523255847371693812015-02-13T12:11:00.001-06:002015-02-13T12:11:08.475-06:00Ending CHD awareness week ❤️<div class="separator" style="clear: both;">Tomorrow is the end of CHD awareness week. We would encourage you to copy and paste the following link into your search bar to hear from other heart moms a little bit of what it is like to care for a child with a congenital heart defect! We thank you for your continued support to our family ❤️</div><div class="separator" style="clear: both;"><br></div><div class="separator" style="clear: both;"><br></div><div class="separator" style="clear: both;">Http://unexpectant.com/chd-awareness-week-being-a-heart-mom/ </div><div class="separator" style="clear: both;"><br></div><div class="separator" style="clear: both;"><div class="separator" style="clear: both;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh53k-z3dCAcl7RHa5TOCMDgZl_2VP9tYzl5u9igwLxrwlMpcNNCOmh5cJgk1W4VEq4eHZnkWt93PPEFezlxF74Gs_aLXz_pjR-s37lsh4Al_ChK5M7yAl2eP7dI4P_8Os9uvqS6lXTpKA/s640/blogger-image--336098186.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh53k-z3dCAcl7RHa5TOCMDgZl_2VP9tYzl5u9igwLxrwlMpcNNCOmh5cJgk1W4VEq4eHZnkWt93PPEFezlxF74Gs_aLXz_pjR-s37lsh4Al_ChK5M7yAl2eP7dI4P_8Os9uvqS6lXTpKA/s640/blogger-image--336098186.jpg"></a></div><br></div><div class="separator" style="clear: both;"><br></div><div class="separator" style="clear: both;"><br></div>Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-5294581029102727355.post-64286956593380415662015-02-09T10:44:00.001-06:002015-02-09T10:44:40.136-06:00CHD awareness<header>This post was written last year at this time. It still rings so true today. </header><div class="main-outer" style="position: relative; min-height: 0px; border-top-width: 1px; border-top-style: solid; border-top-color: rgb(216, 216, 216); margin: 10px 0px 0px; padding: 0px;"><div class="fauxborder-left main-fauxborder-left" style="position: relative; background-position: 0% 0%;"><div class="region-inner main-inner" style="min-height: 0px; margin: 0px; position: relative; padding: 0px; min-width: 0px; max-width: 960px;"><div class="columns fauxcolumns" style="zoom: 1; position: relative; padding-left: 0px; padding-right: 0px;"><div class="fauxcolumn-outer fauxcolumn-left-outer" style="background-color: rgb(255, 255, 255); position: absolute; top: 0px; bottom: 0px; overflow: hidden; left: 0px; width: 0px;"><div class="cap-top" style="position: relative; height: 0px; background-position: 0% 0%; background-repeat: repeat no-repeat;"><div class="cap-left" style="height: 0px; float: left; background-position: 0% 0%; background-repeat: no-repeat no-repeat;"></div><div class="cap-right" style="height: 0px; float: right; background-position: 100% 0%; background-repeat: no-repeat no-repeat;"></div></div><div class="fauxborder-left" style="position: relative; height: 5609.34375px; background-position: 0% 0%; background-repeat: no-repeat repeat;"><div class="fauxborder-right" style="position: absolute; right: 0px; height: 5609.34375px; background-position: 100% 0%; background-repeat: no-repeat repeat;"></div><div class="fauxcolumn-inner" style="height: 5609.34375px; border-right-width: 1px; border-right-style: solid; border-right-color: rgb(216, 216, 216);"></div></div><div class="cap-bottom" style="position: relative; height: 0px; background-position: 0% 100%; background-repeat: repeat no-repeat;"><div class="cap-left" style="height: 0px; float: left; background-position: 0% 100%; background-repeat: no-repeat no-repeat;"></div><div class="cap-right" style="height: 0px; float: right; background-position: 100% 100%; background-repeat: no-repeat no-repeat;"></div></div></div><div class="fauxcolumn-outer fauxcolumn-right-outer" style="background-color: rgb(255, 255, 255); position: absolute; top: 0px; bottom: 0px; overflow: hidden; right: 0px; width: 0px;"><div class="cap-top" style="position: relative; height: 0px; background-position: 0% 0%; background-repeat: repeat no-repeat;"><div class="cap-left" style="height: 0px; float: left; background-position: 0% 0%; background-repeat: no-repeat no-repeat;"></div><div class="cap-right" style="height: 0px; float: right; background-position: 100% 0%; background-repeat: no-repeat no-repeat;"></div></div><div class="fauxborder-left" style="position: relative; height: 5609.34375px; background-position: 0% 0%; background-repeat: no-repeat repeat;"><div class="fauxborder-right" style="position: absolute; right: 0px; height: 5609.34375px; background-position: 100% 0%; background-repeat: no-repeat repeat;"></div><div class="fauxcolumn-inner" style="height: 5609.34375px; border-left-width: 1px; border-left-style: solid; border-left-color: rgb(216, 216, 216);"></div></div><div class="cap-bottom" style="position: relative; height: 0px; background-position: 0% 100%; background-repeat: repeat no-repeat;"><div class="cap-left" style="height: 0px; float: left; background-position: 0% 100%; background-repeat: no-repeat no-repeat;"></div><div class="cap-right" style="height: 0px; float: right; background-position: 100% 100%; background-repeat: no-repeat no-repeat;"></div></div></div><div class="columns-inner" style="min-height: 0px;"><div class="column-center-outer" style="position: relative; float: left; width: 375px;"><div class="column-center-inner" style="padding: 0px; margin: 0px;"><div class="main section" id="main" style="margin: 0px; padding: 0px;"><div class="widget Blog" id="Blog1" style="position: relative; min-height: 0px; margin: 0px; clear: both; padding: 0px;"><div class="blog-posts hfeed"><div class="date-outer" style="padding: 10px; margin: 0px;"><h2 class="date-header" style="margin: 0px 0px 1em; position: relative; font-weight: bold; min-height: 0px;"><span style="padding: 0.1em 10px; margin: 0px -10px; font-size: 17px; -webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);">Sunday, February 9, 2014</span></h2><div class="date-posts"><div class="post-outer" style="padding: 0px; margin: 0px;"><div class="post hentry uncustomized-post-template" itemscope="itemscope" itemtype="http://schema.org/BlogPosting" style="position: relative; min-height: 0px; margin: 0px;"><span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);"><a name="5354130781224431325"></a></span><h3 class="post-title entry-title" itemprop="name" style="margin: 0px; position: relative; font-weight: normal;"><span style="font-size: 17px; -webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);">The other 364 days. Why it matters.</span></h3><div class="post-header" style="margin: 0px 0px 1.5em;"><div class="post-header-line-1"></div></div><div class="post-body entry-content" id="post-body-5354130781224431325" itemprop="articleBody" style="width: 355px; position: relative;"><span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);">It's not just about wearing red one day a year. <br><br><br>Today is day 3 of CHD awareness week. Today I want to write a little bit about the life behind the red. <br><br><br>On national wear red day, we dress in red and take cute pictures to post to bring awareness. We show off our warriors and remember the angels. We throw out statistics and ask you to join our cause. All of these things matter. They are important. They are good. These are all things that we should be doing, but that is it for many of the outside world. Now what? For you, it's over until next year. For a family affected by CHDs it is day in, day out, 24/7. It never ends. It never goes away. It is always there. <br><br><br>Today I ask that as you read this post that you think about the other 364 days of the year. The other 364 days that we as parents of a heart warrior face the ugly reality of this life. If you had a child that you knew would be taken from you, but you had no idea when, wouldn't that be scary? If you had to, on multiple occasions, hold your child down while they cry in fear, wouldn't that haunt you? If you have been told that your child would have their heart stopped and restarted multiple times, wouldn't you want to hide from reality? If you knew your child would have delays, restrictions, and extra hurdles, wouldn't that make you wish you could take away the pain? Do you lay in bed at night and wonder if your child is still breathing? If their heart is still beating? Do you watch every day for things that aren't quite right in your child's body language, energy level, or skin color? Do you have medical equipment in your home? Does every decision about what you do, where you go, who you see, what you eat, etc... ultimately lead you to make a choice based on what is least likely to somehow land your child in a hospital or worse, lead to death. Imagine the pressure that comes with that territory. <br><br><br>Congenital Heart Defects are hard to understand. They happen at random, and range from mild to severe. Some require only life long maintenance by a cardiologist. While others require multiple open heart surgeries and or heart transplant. In some cases they can even require a heart and lung transplant due to damaged lungs from lack of proper heart function. There is NO cure. Transplant is not a cure. In fact when Ella was a week old and we went through the process of getting her listed for transplant, we heard all the positives and negatives of a transplant and let me tell you, while transplant is AMAZING and many can live semi normal lives and thrive with a new heart, it is safe to say you want that to be your very last resort. It is truly a scary thing to face. We were blessed that Ella improved enough to keep her native heart at least for the time being. Going through that process was scary especially knowing we may still have to go that route someday in her future.<br><br><br>When a parent receives the news of their child having a CHD, especially if it is one of the more complex ones, their world has forever been changed. Flipped upside down. That feeling that you get that day, that sinking feeling, that anxiety, that guilt that maybe you did something wrong, those emotions, those fears,... they never really go away after that. Sure, they become your "normal" you learn to deal with them and to hold them in and process them later. You do become somewhat desensitized to things that are your reality. You can say things like, my child is terminally ill, my child has had 4 open heart surgeries, my child is turning blue, etc... without bursting into tears. You've heard it, thought it, and said it so many times, that it's... normal?... Yet it feels so unnatural. It is unnatural for a parent to lose a child or to face it everyday, yet for many it is reality. There is a certain grief. The actual grieving process that you go through when you lose a loved one or when you have received news that you are losing a loved one. Maybe it's a long battle with Alzheimer's, maybe a rough bout with cancer, maybe a car accident and it's time to turn off the life support. However you face it, you grieve. I have lost many people in my life. I've been to more funerals then most. Some have been sudden, like our dear friend that we lost this last year, others have been dragged out painfully slow, like my sweet great granny who I helped care for day after day as she slipped away. Some lives seem gone too soon, yet others you know it was time and even have a small sense of rejoicing with their full life now fully lived. Yet you grieve. You grieve. In many ways, receiving news that you will be giving birth to a terminally ill child feels like a death. Though we have been blessed and Ella's life has already surpassed the expectation, we know that her heart is only good for a time, and so we grieve. This is Ella's life, but it is also a long drawn out process of her death. One might say that is the case of all life and they would be correct. No, no one is promised tomorrow, but I venture to say that if you were told your child would likely die from their sick heart vs. someone saying anyone could pass at anytime. You would understand the difference. It is different. So we grieve. The odd part about our grief is that we have long bouts of happiness and then boom the grief hits us like a soccer punch to the gut, taking away our breath. The stages of grief bounce around hitting us randomly over and over again. Grief is exhausting. While I'm not a grief expert, I speak from experience when I say grief does not only occur once the one you love has passed. The long years of leading up to it force you to face that reality and those fears time and time again. <br><br><br>So family's facing CHDs ugly reality the other 364 days a year thank you for wearing red, why? Because you, someone who has the luxury of turning a blind eye to the pain of the heart world chose to embrace it, even if for one day. A choice to stand arm in arm with the weary heart families and bring hope for the future. It makes a difference. You make a difference. Not only does it show the heartbroken and the grieving that they are not alone or forgotten, but is shows the world that there is something out there that is stealing the lives of our children! While I don't like the comparison of CHD's to childhood cancer in the whole debate of which is worse, because lets face it, they both are horrible and both take far too many lives, I would like for CHD to be known by the world the way cancer is. If someone hears that a child is diagnosed with cancer, they instantly know what that means; however, if someone is diagnosed with a CHD people say "what?" Did you know that in the United States, twice as many children die from congenital heart defects each year than from ALL forms of childhood cancer combined? Does this take away from the horrible fact that cancer exists and that it takes these precious lives? Absolutely NOT! But doesn't it make you wonder why you haven't heard of Congenital Heart Defects before perhaps following Ella's story. It makes me wonder why I didn't know what that meant before Ella was diagnosed. If it is killing twice as many more children then all childhood cancers why didn't I know about it? If a doctor had looked at me and told me my child had cancer vs. being told she had a CHD I would have known what he was saying. Why? Because of lack of awareness. Again, I'm not in ANY way taking away from the pain of cancer, in fact, if cancer had been our diagnoses it would have been devastating. I'm only raising the question of why isn't CHD known? What can we do to change this? Why does it even matter? Well, it isn't known because of lack of funding and awareness, we can help change this by speaking about it, by wearing RED on national wear red day, by funding pediatric heart programs, It matters because kids are dying, mine included and truth be told it could be yours. Ultimately awareness leads to funding and then research and new surgeries and medications and treatments come into existence. That gives us hope. I have enjoyed watching the St. Jude specials since I was little, I would cry along with them. Did you know that public donations provide more than 75% of their funding? That is amazing! Such an wonderful gift for families facing that illness. I would love for there to be a place like St. Jude for Children with Congenital heart defects. We need someone to fight for them, to constantly research. A hospital with the sole focus being find a cure for CHD's. It doesn't exist. We need funding, we need support, we need awareness. That's why it matters if you wear red on national wear red day, that's why it matters if the people in your life are familiar with the term CHD. That's why congenital heart defect awareness week matters. <br><br><br></span><div align="center" style="text-align: start;"><span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);">Awareness and research are what turn this...</span></div><div class="separator" style="text-align: start; clear: both;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhTqMTtyESLaOwERgwcww4tBNLJgpzxbosS60hnYDHeuHhvYTAWB-44hFM2sc6_ogH8g5riNUs8fG9sDPS-4bKysvzl4Y2_As_QAHiZyUeDLExGX7ZYAfD7b-6i4w9U0TtBdOKBf73e5-0/s1600/041.JPG" imageanchor="1" style="text-decoration: none; -webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);"><font color="#000000"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhTqMTtyESLaOwERgwcww4tBNLJgpzxbosS60hnYDHeuHhvYTAWB-44hFM2sc6_ogH8g5riNUs8fG9sDPS-4bKysvzl4Y2_As_QAHiZyUeDLExGX7ZYAfD7b-6i4w9U0TtBdOKBf73e5-0/s280/041.JPG" height="186" width="280" style="border: 1px solid rgb(233, 233, 233); position: relative; padding: 5px; -webkit-box-shadow: rgba(0, 0, 0, 0.0980392) 1px 1px 5px; box-shadow: rgba(0, 0, 0, 0.0980392) 1px 1px 5px; box-sizing: border-box; max-width: 100%;"></font></a></div><div class="separator" style="text-align: start; clear: both;"><span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);"><br></span></div><div align="center" style="text-align: start;"><span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);">...Into this. </span></div><span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);"><br><br></span><div class="separator" style="text-align: start; clear: both;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh8rby72biCgggo3f9V0tSYcOeWWaRkLWpuv8C5hyB0vxgM_dHnV8u9uKsM07p_YnP78j_-gWTOLJJWRkby8HSknm17aQqxBPJGkPwSyuOtj_pR8CgMHXKYj2HqqOgAZLxyJMwXlqbMZBQ/s1600/blogger-image-1490564889.jpg" imageanchor="1" style="text-decoration: none; -webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);"><font color="#000000"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh8rby72biCgggo3f9V0tSYcOeWWaRkLWpuv8C5hyB0vxgM_dHnV8u9uKsM07p_YnP78j_-gWTOLJJWRkby8HSknm17aQqxBPJGkPwSyuOtj_pR8CgMHXKYj2HqqOgAZLxyJMwXlqbMZBQ/s280/blogger-image-1490564889.jpg" height="210" width="280" style="border: 1px solid rgb(233, 233, 233); position: relative; padding: 5px; -webkit-box-shadow: rgba(0, 0, 0, 0.0980392) 1px 1px 5px; box-shadow: rgba(0, 0, 0, 0.0980392) 1px 1px 5px; box-sizing: border-box; max-width: 100%;"></font></a></div><div class="separator" style="text-align: start; clear: both;"><span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);"><br></span></div><div class="separator" style="text-align: start; clear: both;"><span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);">It matters, because If Ella had been born 5 or 6 years before she was, there would have been no chance for her at all. It matters because advancements are being made and lives are being saved. Let's keep bringing awareness to a disease that shouldn't steal away our beautiful children! </span></div><span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);"><span id="goog_1173436916"></span><span id="goog_1173436917"><br></span><br><br><br><br></span><div style="clear: both;"></div></div><div class="post-footer" style="margin: 20px -2px 0px; padding: 5px 10px; border-bottom-width: 1px; border-bottom-style: solid; border-bottom-color: rgb(233, 233, 233);"></div></div></div></div></div></div></div></div></div></div></div></div></div></div></div>Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-5294581029102727355.post-26322743263673419722015-02-05T09:53:00.001-06:002015-02-05T09:53:34.922-06:00Wear red February 6th!February is CHD (congintal heart defect) awareness month. We will be wearing red for national wear red day this Friday the 6th (tomorrow)! We would be honord if you would wear red to support Ella and all the other heart warriors still fighting and the heart Angels that have gone too soon. Make sure to tell someone (or many people) about a heart warrior and CHDs tomorrow!<div class="separator" style="clear: both;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj5zD9RqR6zJzrCFG-UY_DvKxxMP1Yn_ifphN5jwiHa0tCc7pK49Gn2b8crvsKnArN_ovWIKAew0EvNuDpDieQ7jwM01uM_HqgSDGqIKnCup2slDF9K-3qrwDuJInFH621QluiQiVZcZnA/s640/blogger-image-1317792613.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj5zD9RqR6zJzrCFG-UY_DvKxxMP1Yn_ifphN5jwiHa0tCc7pK49Gn2b8crvsKnArN_ovWIKAew0EvNuDpDieQ7jwM01uM_HqgSDGqIKnCup2slDF9K-3qrwDuJInFH621QluiQiVZcZnA/s640/blogger-image-1317792613.jpg"></a><div class="separator" style="clear: both;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj5zD9RqR6zJzrCFG-UY_DvKxxMP1Yn_ifphN5jwiHa0tCc7pK49Gn2b8crvsKnArN_ovWIKAew0EvNuDpDieQ7jwM01uM_HqgSDGqIKnCup2slDF9K-3qrwDuJInFH621QluiQiVZcZnA/s640/blogger-image-1317792613.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"></a><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiIFX0gIwI-233dmvRWSYz2YN4DlEzPcyOVtH-IX-qMPUm7t_NwWM7VzjegZ2dcIKSNRHnFiNJuGxXVtcwmhmiNZPv6sOGJSqQW6McyO7MKxQdlwjR-X-qzgmh3Ps0EDieOJuFvuO8m3H4/s640/blogger-image--698045428.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiIFX0gIwI-233dmvRWSYz2YN4DlEzPcyOVtH-IX-qMPUm7t_NwWM7VzjegZ2dcIKSNRHnFiNJuGxXVtcwmhmiNZPv6sOGJSqQW6McyO7MKxQdlwjR-X-qzgmh3Ps0EDieOJuFvuO8m3H4/s640/blogger-image--698045428.jpg"></a></div></div>Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-5294581029102727355.post-46895271016119712492014-12-10T22:32:00.001-06:002014-12-10T22:37:01.953-06:00Update on Ella's appointment todayWe are home from Dallas, thank you for praying. Ella did well at her appointment today, her anxiety was very low and she didn't have to get any "needles" so that made for a much more enjoyable trip for our girl! <div><br></div><div>Ella had an x-ray which shows significant improvement from before, but still not where she needs to be so that unfortunately means we have to continue the treatments at home that leads to lots of tears. :(</div><div>Although the x-ray is showing improvement, Ella is not. That leads us to possibly more testing. </div><div><br></div><div>Ella is still having a lot of pain, low appetite, low energy, low oxygen, high heart rate, and weight loss. At this point, we will continue to treat the bowl issues and also her GI doctor wants to switch her acid reflux med to hopefully help more with that, he also thinks she should have an endoscopy under anesthesia in the near future. He feels like it would be good to have just to rule out any other possible problems that could be playing a role in her symptoms. This is a very simple scope, however anesthesia is always some risk and adding her cardiac history it makes things a little more risky, but it may need to be done. He also wants us to try to get more calories in her to help her gain weight, while continuing her high fiber no dairy diet. </div><div><br></div><div>I will be talking to her cardiologist about the endoscopy and the med switch up to get his opinion before we make our final decision on what step to take next. Please continue to pray for wisdom, protection, answers, and healing as we walk this journey with our sunshine. </div><div><br></div><div>We know that even though her team is not sure what all is going on in her body, our God knows it all perfectly, we try to rest in that. We thank you for your continued prayers. </div><div><div class="separator" style="clear: both;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEidHfGLK3wFY4qio-O3kivoSZsKnFsITQ7uBp4i58wjLQf7u5KHjEqiN1ebzkie3vDiJ91ERitbABtg8W-fG4PcTM1Hqj1_WtRbfzYni8yKLQhHP8wauGig04GP1rCRcyFWpCd5n_VNjAw/s640/blogger-image-1184801095.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEidHfGLK3wFY4qio-O3kivoSZsKnFsITQ7uBp4i58wjLQf7u5KHjEqiN1ebzkie3vDiJ91ERitbABtg8W-fG4PcTM1Hqj1_WtRbfzYni8yKLQhHP8wauGig04GP1rCRcyFWpCd5n_VNjAw/s640/blogger-image-1184801095.jpg"></a></div><br></div><div><br></div><div><br></div><div>For those of you praying for Ella's heart friend,Emma, her surgery went well today, praise The Lord!!! Please continue to pray as she recovers from this surgery and her body tries to adjust. Www.emmajanae.blogspot.com </div>Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-5294581029102727355.post-83372570225881200462014-12-09T18:48:00.001-06:002014-12-09T18:48:44.857-06:00Heading to Dallas again.Tomorrow, Dec. 10th, we will be heading to Dallas yet again. We will be seeing Ella's GI doctor this time. Ella is just not improving the way she should be, and she has begun to have some mild "episodes" again. Please pray we get this figured out. Her oxygen sats are still okay but lower then we would like with any activity and she has some significant exercise intolerance at this point that she "shouldn't" be experiencing since her last surgery. <div><br></div><div>Please pray for safety in travel, safety from germs, wisdom for us and the doctors on Ella's team, Ella's anxiety level to be low, and for healing for our girl! </div><div><br></div><div>Also a huge prayer request for our special heart friend Emma! She is in Boston and the plan is for her to have major open heart surgery tomorrow. This is extremely high risk! Her and her family are so dear to us. Will you join us in praying for them tomorrow and the days following? You can follow her updates on her blog www.emmajanae.blogspot.com and you can share her blog for your friends and family to pray as well! She needs lots of prayers for this next step in her journey! </div><div><br></div><div>Thank you friends. </div>Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-5294581029102727355.post-45004136385979584852014-11-26T19:55:00.001-06:002014-11-26T19:55:42.196-06:00GI appointment updateFirst of all, thank you all for praying! We love the Dallas Heart team and our first experience with the GI team was just as great! The doctor fell in love with Ella (who wouldn't?) He said she knew more then the 6 and 7 year olds he sees and he said she just "made his day"! I love how much sunshine she spreads all around her! While we were waiting to go back she sang "let it go" from frozen and I looked beside me and saw that several people were watching her with smiles on there faces and I thought "I'm glad she is making people smile". You never really know if your kid singing in public is a good thing or if everyone else is wishing your kid would be quiet hahaha but the smiles confirmed that she was being enjoyed and I love it when other people get to enjoy her sunshine spirit! <br />
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Now on to the update. It was again confirmed that Ella has some severe blockage that needs to be dealt with, so we will be trying some new, more intense treatments here at home and adding some daily maintenance meds. Please pray that this works, it's not going to be fun for Ella and we don't want to have to do it again. Since tomorrow is thanksgiving we plan to wait and start this new treatment plan on Friday and it will go through the end of Saturday or possibly all day Sunday as well depending on how she is doing. From there we will start a new maintenance routine. Also she had some labs drawn to rule out some things but we are still waiting on those results, and can I say she was SO brave during the blood draw!!! I'm sure some of you were praying specifically for her to have peace so thank you! We hope this new plan works and gets our girl well on her way to feeling better. We will follow up with the GI doctor in 3 months. <br />
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Again we thank you all for the prayers, we really felt like we were in the right place with the right doctor and he is very optimistic that we can get her feeling better soon! Please continue to lift Ella up in prayer as we try to ease some of her pain and hope this takes care of all the other issues going on in her little body. <br />
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Have a Happy Thanksgiving! We are thankful for the Lord and His unfailing Love, we hope you have accepted that Love too! We hope you have a wonderful day remembering His goodness! So many things to be thankful for, even amidst all the pain and suffering in this world. Even Jesus said "Here on earth you will have <strong>many</strong> trials and sorrows. But take heart, because I have overcome the world." John 16:33. What a beautiful savior we get to cling too! He has already overcome this world and all the pain it brings. He will restore and redeem it all one day, and what a wonderful day that will be if you choose Him! After all, He has already chosen you! <br />
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<br />Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-5294581029102727355.post-75360917463151773352014-11-25T15:03:00.000-06:002014-11-25T15:03:36.281-06:00Radiology and Urology update<div>
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Ella is still not close to where we need her to be as far as bodily functions. </div>
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I called the urologist yesterday and talked to her nurse and told him that we wanted to come in for another appt. and we wanted to go to radiology for a full, more detailed ultrasound of her bladder and kidneys. He told me they couldn't see her for that until her next appoint that was scheduled for the end of January, but after talking to him for awhile he told me that we could be seen at a different location on Dec. 1st. the only problem was that we needed to have an ultrasound done at children's radiology before then to have the results for the appointment on Dec 1st. Once he talked to radiology he told me they could get her in the next day at 8:15am and there was a possibility that after that they may be able to try and see her in urology instead of waiting until the 1st since we would already be there.<br />
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Early this morning we headed out to children's here in Oklahoma and had the ultrasound done. When it was finished we called urology to check and see if they could fit us in, after some phone calls they told us they could fit us in at 10:30am. We went to a secluded waiting area and I while we were sitting there Ella's cardiologist called me. I caught him up on everything again and he agrees with me that something is definitely not quite functioning properly in Ella's body. As far as a cardiac standpoint goes she is looking pretty good so he wants us to change a dose on one of her meds and then see a GI (gastrointestinal) doctor as soon as possible before perusing more cardiac testing. <br />
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Once we got back to see the urologist she told us that Ella's ultrasound is still showing a major problem with constipation (despite her going everyday sometimes twice a day) and her urine is showing dehydration (despite the 20-40 oz. of water she drinks a day). We have to continue to be aggressive with treating those things. Some of Ella's other symptoms the urologist told us, are not typically side effects of constipation, so we know something else may be playing a role in her not feeling well and losing weight, which is why we need to see GI as soon as possible.<br />
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When I was talking to Ella's cardiologist today he told me that we could see a GI doctor here in OK or there in Dallas but to just go to the first available appt. I called Dallas GI and they told me the soonest they could see her was Dec. 30th. We knew we wanted to be seen sooner so we talked to the GI here about scheduling to see if we could get in sooner. They said the soonest date they had would most likely be February... um no...just no. So I called Dallas back to tell them we would take the Dec. 30th date and to ask them to put us on a cancellation list for the possibility of a sooner appointment slot. The man told me that about 30 min before I called they had had some new openings and that they could see her, ...get this,... TOMORROW! I just knew that God's hand was in that and knew it was the power of all the people praying for her today! <br />
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So with that said, we will be off early in the morning heading to Dallas to hopefully get some answers or at least closer to finding a way to help our sunshine feel better! We appreciate your prayers more then you will ever know. Please continue to pray for us as we search for answers, please pray for protection from germs, travel safety, wisdom, and strength. We are all a <strike>little </strike> lot tired of doctor's offices and appointments but mostly we are tired of not being able to fix our sweet girl's pain. Thank you all for your continued love and support to our family, this road is not easy, it is scary and full of unknowns, but having so many people praying for us is humbling and it makes us thankful beyond words. <br />
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<br />Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-5294581029102727355.post-86893161490303640742014-11-18T13:57:00.000-06:002014-11-18T13:57:21.248-06:00updateElla hasn't had any "episodes" since the 13th so that is great! She is still not where we want her to be with her oxygen and heart rate, but is doing okay. Her bowl track is still not back to normal but we are doing our best to work through that. We still aren't positive what all is going on, but she seems to at least be moving in the right direction and is not getting worse at this time. Thank you all for continuing to pray for our girl, we look forward to her feeling completely better, hopefully soon. Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-5294581029102727355.post-9014429304672872372014-11-14T15:04:00.001-06:002014-11-14T15:04:34.558-06:00UpdateElla's urology appt went well yesterday and we have a plan in place to hopefully mange the UTIs better without the constant need of antibiotics.<div><br></div><div>She is still having "episodes" and some low oxygen with high heart rates. </div><div><br></div><div>We thank you for your continued prayers as we try to find answers! </div><div><br></div><div><div class="separator" style="clear: both;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhvV15LIuigiSy9de6H3dhyUJorn7H9tve5AvdOqQR6IVagmpj-wmvsa6lv4SbtrbyltMxZUZ6oc2rLZYdP4dIMAYTTfk77KLmCuk_I4gPHyelgHuyKnvN15GmUTNjKKFWlHIsxIHCfVds/s640/blogger-image--381174513.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhvV15LIuigiSy9de6H3dhyUJorn7H9tve5AvdOqQR6IVagmpj-wmvsa6lv4SbtrbyltMxZUZ6oc2rLZYdP4dIMAYTTfk77KLmCuk_I4gPHyelgHuyKnvN15GmUTNjKKFWlHIsxIHCfVds/s640/blogger-image--381174513.jpg"></a></div><br></div>Unknownnoreply@blogger.com0