Heart surgery today chd

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The Childrens Hospital Of Philadelphia~Chop, UCSF Benioff Children's Hospital, Los Angeles, California
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Hi heart Family ! I really enjoyed meeting little heart warrior Cesar and his family today at CHLA. ...
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Hi heart Family ! I really enjoyed meeting little heart warrior Cesar and his family today at CHLA. He had his follow up appointment with his cardiologist to check how his heart is doing. His parents shared the great news that they received about Cesar. His little mended heart is doing great ... Hi heart Family ! I really enjoyed meeting little heart warrior Cesar and his family today at CHLA. He had his follow up appointment with his cardiologist to check how his heart is doing. His parents shared the great news that they received about Cesar. His little mended heart is doing great so far and he has been cleared for the next 4 months!! Cesar is only 5 months old and already had 1 open heart surgery to be here today.💔💪 He was born with a rare CHD called #TruncusArteriosus(swipe left to view picture #3 a CHD Infographic) This defect is when a single blood vessel comes out of the right and left ventricles, instead of the normal 2 vessels, #pulmonary and #aorta.
Despite everything little warrior Cesar has gone through in his 5 short months of life he was all smiles. I loved holding him😁melted my heart 💓 thank you to Cesars heart dad and heart mom @cesarheartwarrior for letting me come meet you all and give him a pillow of courage .😊 It was great to meet you! stay strong and remember you're not alone ,we are all in this fight together !! #heartfamily #Strongertogether #chd #chdcommunity #chdawareness #congenitalheartdisease #heartdefects #birthdefect #chdhearts #givinghopeoneheartatatime #supportbrokenhearts
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Working at a children's hospital, you hear the stories of families who go through the unimaginable- ...
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Working at a children's hospital, you hear the stories of families who go through the unimaginable- stories of newborns who are put under before their parents get to hold them, pricked before they are kissed, receive care from more specialists than they have fingers. I thought I had a sense ... Working at a children's hospital, you hear the stories of families who go through the unimaginable- stories of newborns who are put under before their parents get to hold them, pricked before they are kissed, receive care from more specialists than they have fingers. I thought I had a sense of what families with sick children go through, but that was before my sweet niece Brie was born.
Brie was diagnosed with truncus arteriosus, a rare congenital heart defect, at my sister-in-law's 20 week check up. Fortunately, my brother and sister-in-law received her diagnosis early enough to relocate back home to MD from FL to be closer to family and the Children's Hospital of Philadelphia. Despite their best efforts, nothing could have prepared them for what they have had to go through.
Brie turns 2 weeks today and has already endured more than anyone should have to experience in a lifetime.

At 4 days old she underwent open heart surgery, had her chest "open" the following 4 days due to trauma, had two stents placed into her pulmonary arteries, received numerous blood transfusions, experienced a code blue (bleeding out from her umbilical artery), had countless blood tests, g-tube insertion, and most recently, was diagnosed with DiGeorge Syndrome (22q11.2 deletion syndrome, a rare genetic disorder). While DiGeorge is treatable, it is not curable. My brother's family will continue to face challenges while navigating Brie's condition. If you are able, please take a moment to follow their story and make a donation towards Brie's hospital, medication, therapy, copay and other anticipated financials burdens (direct link in bio) 💗
#BRIESTRONG #truncusarteriosus #chd #vsd #digeorgesyndrome
https://www.gofundme.com/help-brie-be-strong-and-fight

https://www.facebook.com/BrieStrongTA/
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It's Congenital Heart Defect Awareness Week so I thought I'd grace you with the presence of one of ...
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It's Congenital Heart Defect Awareness Week so I thought I'd grace you with the presence of one of my scars. I have a love hate relationship with this thing. Sometimes it makes me feel so ugly and self conscious that all I want to do is wear roll necks and not be seen, but then the next day it can ... It's Congenital Heart Defect Awareness Week so I thought I'd grace you with the presence of one of my scars.
I have a love hate relationship with this thing. Sometimes it makes me feel so ugly and self conscious that all I want to do is wear roll necks and not be seen, but then the next day it can make me feel like the most invincible gal around.
Despite the hospital appointments, the uncertainty of needing further surgery and all of the tears that have come along with having this disease, I wouldn't change my condition for a thing as it has given me strength and has made me the grateful person I am today.
It's a constant reminder that I am a surviver and as much as a doubt myself, I am a hell of a lot stronger than I think.



#chd #zipperclub #congenitalheartdefect #scar #grungegirl #grunge #fashion #beauty #life #alternative #lblogger #fblogger #bblogger
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Today 7/22/18 is the 7 year anniversary of Jackson’s #openheartsurgery. At just 8 months he had ...
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Today 7/22/18 is the 7 year anniversary of Jackson’s #openheartsurgery. At just 8 months he had to have his #tapvr corrected. We thought we were going to be able to wait till he was 2 but his oxygen levels dropped into the 70s. . It was scary to say the least and I don’t think @mikeabeach and I ever ... Today 7/22/18 is the 7 year anniversary of Jackson’s #openheartsurgery. At just 8 months he had to have his #tapvr corrected. We thought we were going to be able to wait till he was 2 but his oxygen levels dropped into the 70s. .
It was scary to say the least and I don’t think @mikeabeach and I ever fully processed the weight of it all because it was just too much to comprehend. I stayed by his side almost every minute especially after a having a scary episode of his heart going on 2 different rhythms and all the nurses and doctors running into the room at 2am. .
I don’t remember showering and only ate because Mike would make me go get food with him.
But thankfully Jackson was in the care of the best at @childrensla and we were able to take him home after just 4 short days. We were nervous and probably over careful but this kid recovered from his surgery much faster than we did.
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Today he is a strong, healthy, hardheaded, overactive kid that gives us, his teachers and his coaches a run for our money. And as much as he drives nuts....I can’t tell you how thankful I am that I have this firecracker kid. #chdwarrior #chd #chdawareness #congenitalheartdefect .
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#strongboy #amotherslove #younggymnast #toughkid #chdsurvivor #heartmom
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Today is the beginning of CHD (Congenital Heart Defect) awareness week. It is also the week in which ...
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Today is the beginning of CHD (Congenital Heart Defect) awareness week. It is also the week in which our little superhero was born. Although we have been blessed with a beautiful, loving, bright and energetic little boy, we also have to remember that we are traveling a road with unknown twists ... Today is the beginning of CHD (Congenital Heart Defect) awareness week. It is also the week in which our little superhero was born. Although we have been blessed with a beautiful, loving, bright and energetic little boy, we also have to remember that we are traveling a road with unknown twists and turns that doesn't end for Joey. CHD is a lifelong and incurable disease. There will be at least one more surgery (hopefully) and a lifetime of regular appointments with a cardiologist. If what he has shown us thus far is any indication of the future, I think we can rest assured that nothing will keep him from living a full, active and normal life save for a few battle scars to impress the ladies with. Dream big, love bigger and never let anyone tell you you can't! We love you so much!💙 #superjoey #chdawareness #heartparents #tetralogyoffallot
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Today is a day of CELEBRATION! Since Josh’s first echocardiogram at 3 days old, he has had at least ...
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Today is a day of CELEBRATION! Since Josh’s first echocardiogram at 3 days old, he has had at least one a year for 10 years. Probably 10 more just in 2014 alone, before & after surgery. But *today*, because his heart looks so good (“perfect, as if he never had surgery”), we were told he does not ... Today is a day of CELEBRATION! Since Josh’s first echocardiogram at 3 days old, he has had at least one a year for 10 years. Probably 10 more just in 2014 alone, before & after surgery. But *today*, because his heart looks so good (“perfect, as if he never had surgery”), we were told he does not need to come back for THREE YEARS!!! 🙌🏼🎉❤️ As we were leaving, his cardiologist said “Get outta here Josh, you’re too healthy for us. See you at 13!” PRAISE GOD!!! #heartwarrior #CHDsurvivor @childrenscolo @chd_hearts @chdawarenessmovement @mendedlittleheartsnational @american_heart
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UPDATE Hi heart family! I was at UCLA today for my regular heart check up 21 days post op and no more pain from surgery just a litte swollen I saw my cardiologist and the arrhythmia specialist and this is what I left with, a heart monitor😬 my cardiologist said to stay off the #enalapril since ... UPDATE
Hi heart family! I was at UCLA today for my regular heart check up✅ 21 days post op and no more pain from surgery just a litte swollen 😁 I saw my cardiologist and the arrhythmia specialist and this is what I left with, a heart monitor😬 my cardiologist said to stay off the #enalapril since I seem to do & feel better off of it so that's good news! 1 less heart medication yay! So now I only take #digoxin,2 baby #aspirin and #metoprolol, only 4 pills compared to taking 8 in the past. I'm soo happy about that!! 😆😊😁 the arrhythmia specialist wants me to wear this monitor for 7 days. At first when he said this I was kinda dreading having to wear it cuz all the wires and it kinda bothers me to wear the holter on my shoulder waist but then he said that the new ones are so much smaller and WIRELESS!!!! And the best part I can shower with it on!!!! How cool are these heart monitors now a days?! I remember back then when I was a child 👶 they were these huge monitors you had carry then they gradually got smaller but now they are wireless!!! So happy to witness how CHD medical technology has advanced throughout the years! I'll keep everyone updated when I get results. Have to wait for results to decide how they will treat my palpitations. Thank you all for your support! I love you all 💞 😘 #heartwarriorcrystal #adultCHDsurvivor #HRHS #chd #congenitalheartdisease #bornwithabrokenheart #chdhearts #arrythmias #palpitations #heartmonitor #sternalwireremovalsurgery #postop
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Cardiology// Blake had a routine checkup today, & the news was a reminder of life with CHD. I’m glad ...
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Cardiology// Blake had a routine checkup today, & the news was a reminder of life with CHD. I’m glad I took today off work to be at Blake’s appointment. My mother’s intuition has been telling me something isn’t 100%, and the numbers support my suspicions. Dr. Kuebler plans to bring Blake’s ... Cardiology// Blake had a routine checkup today, & the news was a reminder of life with CHD. I’m glad I took today off work to be at Blake’s appointment. My mother’s intuition has been telling me something isn’t 100%, and the numbers support my suspicions. Dr. Kuebler plans to bring Blake’s case up with the team so they can plan the next steps. There is a high probability of having some kind of intervention within 12 months based on current trends in heart function. Not the news we wanted, but never unexpected when living with CHD. The reality is, the good news only last for short periods of time, and we have been blessed to be surgery free for almost 2 years. Please pray for health for Blake; he continues to be our fighter in this never ending battle.
#BlakeIsWhy #CHD #chdmom
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 #MemorialWarriorMonday Heart Warrior JJ was an amazing Heart warrior who impacted many lives, ...
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#MemorialWarriorMonday Heart Warrior JJ was an amazing Heart warrior who impacted many lives, including mine. Jeremiah Davall AKA "JJ" was 8 yrs old. He passed away on June 28,2018. He fought hard & was a courageous warrior till the end. I had sent JJ a Heart Warrior Pillow back in June when ... #MemorialWarriorMonday
Heart Warrior JJ was an amazing Heart warrior who impacted many lives, including mine. Jeremiah Davall AKA "JJ" was 8 yrs old. He passed away on June 28,2018. He fought hard & was a courageous warrior till the end. I had sent JJ a Heart Warrior Pillow back in June when he was in the hospital but he didn't get to open it because he was too sick during the time I sent it 😞🙏
Today I received a very special gift from his heart parents, a $500 donation to make more heart Warrior pillows in JJ's honor. I have no words to express how grateful I am to his heart family for their generous donation towards my mission of spreading CHD Awareness and Hope. I'm planning to use this donation to make pillows for all the heart warriors who are hospitalized in the hospital JJ was in & also to my local Childrens Hospital (CHLA) and UCLA Children's Mattel Hospital. I will be printing JJs picture on a card along with a message & put it with each pillow I donate to let the heart families know that JJ & his family sponsored all these pillows for them in his memory 🤗💝
JJ's heart mom shares their CHD journey below: "Jeremiah was born with corrected transposition of the great vessels basically his lower chambers were backwards. He had 2 open heart surgeries in the past two years. This year he had a double switch done and was going great until May, when his left ventricle decided it didn’t wanna work anymore. JJ was placed on the heart transplant list but he had antibodies from his other surgery and he was sensitive .They said it could take up to two years for the right heart
At that time they placed him on ECMO machine, which I later found out was life support to give his heart a rest. They said there was this one procedure that they can try so he can get another surgery called a VAD but this procedure has been done in adults but not children. He was the 1st to be tried on. Unfortunately he didn’t make it thru the procedure and died one month shy of his 9th birthday which is this Saturday" @jdavall28 #heartangel #neverforgotten #foreverinourhearts #chd #chdawareness #bornwithabrokenheart #birthdefect #heartdefects #congenitalheartdisease
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‪Please keep our sweet Ariel and her family in your prayers today as she endures another open heart surgery this morning. We love the video she made with her favorite filter asking for prayers. #WeLoveHer #FightingCHD #CampTaylor #Prayers4Ariel #CHD #OpenHeartSurgery ‬ ‪Please keep our sweet Ariel and her family in your prayers today as she endures another open heart surgery this morning. We love the video she made with her favorite filter asking for prayers. #WeLoveHer #FightingCHD #CampTaylor #Prayers4Ariel #CHD #OpenHeartSurgery ‬
They tell you not to stare at the monitors... but with all the beeping who wouldn’t? You hear “try ...
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They tell you not to stare at the monitors... but with all the beeping who wouldn’t? You hear “try and get some rest.” But you keep tossing and turning on the pull out sofa with the rough blankets which makes noise every time you move, you keep wanting to see who is coming in and for what and want ... They tell you not to stare at the monitors... but with all the beeping who wouldn’t? You hear “try and get some rest.” But you keep tossing and turning on the pull out sofa with the rough blankets which makes noise every time you move, you keep wanting to see who is coming in and for what and want to keep updated on if the temp is down, what meds are being administered, what’s the bp, etc. #babyelijulian is with the best care team but that is never enough to a parent. Most nights I stay up watching #sfgiants games I’ve missed but today I sit here in the dark, jumping up every time I hear a beep, or if Eli wakes... I can never get use to this even though we’ve been here so many times... slowly the fear of the 3rd open heart surgery creeps in and I try to remind myself we are not there yet. It’s been difficult seeing Eli fight the nurses when they check on him. I remember him in these rooms when he was in the tiny bed and now In the big kid bed. Coming here to deliver donations is such a blessing. I saw a mom I’ve met a couple of times before as I’ve been a visitor, she waved and gave me a smile as we were rolled to elis room. I pray for a cure. I pray that no other parent loses a child to CHD. I ask if you can donate, you do. Thank you.
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February is American Heart Month and I wear red #forAugust <span class="emoji emoji1f618"></span> My cousin's beautiful baby boy, Gus, ...
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February is American Heart Month and I wear red #forAugust My cousin's beautiful baby boy, Gus, was born with several heart conditions, including branch pulmonary stenosis, causing him to need open heart surgery at only 2 1/2 months old. Though he's not completely out of the woods, today, ... February is American Heart Month and I wear red #forAugust 😘

My cousin's beautiful baby boy, Gus, was born with several heart conditions, including branch pulmonary stenosis, causing him to need open heart surgery at only 2 1/2 months old. Though he's not completely out of the woods, today, he's thriving and he's grown so much! I can't wait for flu season to be over so I can visit him and his very brave parents! ❤️ @jenibassi @mkbass85

#wearredday #chd #chdawarenessmonth #americanheartmonth #openheartsurgery #wearred #luriechildrenshospital
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Hi Heart Family!! 🤗Today was such an awesome inspiring day !! I met up with our fellow heart sister ...
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Hi Heart Family!! 🤗Today was such an awesome inspiring day !! I met up with our fellow heart sister Tamar @married_to_wellness again today and then we both went together to meet our fellow heart brother,Gabriel @gabrielsanchezart who just moved from Colorado let me share a little about ... Hi Heart Family!! 🤗Today was such an awesome inspiring day !! I met up with our fellow heart sister Tamar @married_to_wellness again today and then we both went together to meet our fellow heart brother,Gabriel @gabrielsanchezart who just moved from Colorado 😁 let me share a little about our heart brother Gabriel. He is 25 yrs old and had open heart surgery to replace his #AorticValve with a pig valve. Hes also an aspiring artist and has some of his art work in display at the Colorado Museum! When we first walked up to him,I like what he said "it's my first time being around others who have had Open Heart Surgery like me "
Now that statement right there is why I do what I do. To give others a sense that they are not alone thru their struggles with CHD and that there's alot of us out there going thru the same thing and that we shouldnt feel like we are the only ones who are born this way. To give my fellow heart brothers and sisters a safe space where they can express what they feel and think and be able to relate to others like them. When I was growing up, I didn't have anyone I could relate to because I didn't know anyone else who had CHD or had Open heart surgery. So I couldn't really relate to anybody at school or anywhere to be honest. I felt so alone and I started to isolate myself because of the fact that couldn't relate to anyone. But things changed for me when I decided to put myself out there thru social media and share my CHD testimony. Once I did that,I was finally able to connect with others with CHD and it gave me that closure that I had always be longing for my entire life prior to that big decision of sharing my struggles. We spoke for about 1 hour and half with Gabriel and we have big plans to unite as a team of Adult Heart Warriors to continue our mission of raising CHD Awareness and spreading hope accross the world 😁💔💪 #chdhearts #givinghopeoneheartatatime #AdultHeartWarriors #CHDsurvivors #adultCHD #chd #congenitalheartdisease
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#chdheartspillows Hi heart family!! I'm so excited!! today i finished the very 1st "official" chd hearts pillow cover!! i can't wait to finish it and show you all the finished product!!! I made it out of a nice soft red velvet fabric I will be using. I cut ️thru the middle of the heart and ... #chdheartspillows Hi heart family!! I'm so excited!! today i finished the very 1st "official" chd hearts pillow cover!! 😁😁😁😁i can't wait to finish it and show you all the finished product!!! I made it out of a nice soft red velvet fabric I will be using. I cut ✂️thru the middle of the heart and sewed it back together to make the effect of a broken heart 💔 then I sewed gold cotton thread over to make it look like the heart has been stitched up like when we have open heart surgery. I hope you all like it because I'm in love with it!! 😍😁 I wasn't sure how it was gonna look but now that I've made it and saw how it looks, I loved how it came out! Thank you all for supporting my mission to spread hope to all the heart warriors around the world 🌏
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NUMERO.ONE Today marks one year of my website/blog dedicated to raising awareness and support ...
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NUMERO.ONE Today marks one year of my website/blog dedicated to raising awareness and support and motivation to all those affected my CHD. There is so much more to come and really this year has been spent recovering after my second open heart surgery and learning the true nature of the condition. ... NUMERO.ONE
Today marks one year of my website/blog dedicated to raising awareness and support and motivation to all those affected my CHD. There is so much more to come and really this year has been spent recovering after my second open heart surgery and learning the true nature of the condition. Thank you to everyone who I have connected with not only through my blog but through here. And thank you for everyones support ❤️❤️❤️❤️
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#chdawareness #heartwarrior #blogger #blog #one #thankful #chd
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A few 100,000. children are born with Congenital Heart Defects/Disease every year. Some are NOT ...
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A few 100,000. children are born with Congenital Heart Defects/Disease every year. Some are NOT discovered at birth and Jackson was one of them when he was born on 11/12/10 ... Our pediatrician (Thank God) was suspicious and sent us to a child Cardiologist, who at first didn’t think anything ... A few 100,000. children are born with Congenital Heart Defects/Disease every year. Some are NOT discovered at birth and Jackson was one of them when he was born on 11/12/10 ...
Our pediatrician (Thank God) was suspicious and sent us to a child Cardiologist, who at first didn’t think anything was wrong, when he was just 3months old. After a series of tests we were given the TRULY DEVASTATING news! I’ll skip the details but they thought we could wait til he was 2yrs old and stronger to have Open Heart Surgery to correct the problem but we needed to keep a close eye on him. Honestly, and this is no hype, he could have died in his sleep as some do from lack of oxygen. We would check on him a hundred times a night! No need to tell you how overwhelming this period was for me and @mylifeisabeach
Clearly they didn’t think he had a high risk of that happening but his oxygen levels DID drop to very low levels (in the 70s) in the next 5months and they couldn’t wait to operate.
So on this date (7yrs ago today 7-22-11) our 8month old son had #openheartsurgery
It may seem odd that we are kind of smiling at his bedside after the surgery but that day was the biggest roller coaster ride of our lives!!! When we got word that he survived and we got to see him and touch him again ... After a couple years of constant check ups he’s as annoyingly active as any kid. Maybe even a bit more 😂
#grateful #happiness #thingsthatmatter #family #CHD #thankyou #chla #moderntechnology #happysunday #life
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Happy mother's day to all the heart moms out there!! Heart moms are so awesome !! They stand by us thru ...
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Happy mother's day to all the heart moms out there!! Heart moms are so awesome !! They stand by us thru it all by holding our hands when we are fighting for our lives in the hospital.They do everything in their power to take care of us and our broken hearts and they also become our greatest advocates! ... Happy mother's day to all the heart moms out there!! Heart moms are so awesome !! They stand by us thru it all by holding our hands when we are fighting for our lives in the hospital.They do everything in their power to take care of us and our broken hearts and they also become our greatest advocates! They stand by us thru every heart surgery ,Caths ,Dr appointments ,ekgs, and help us with our daily CHD struggles. Heart moms are our heart heros!! Today when I saw my heartmom and wished her a happy mother's day, she told me " you're the best gift I can have for mother's day " and she smiled at me😁 I love my heart mom to the moon and back. She's my rock and the reason I'm the strong woman I am today ! 😁💪💖 THANK YOU to all heart moms that never give up on their heart warriors! We wouldn't be here without your endless Love and support 💖💖💖💖 #mothersday2018 #heartmom
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11 years ago today my youngest had 5.5 hour open heart surgery to correct what nature messed up. He ...
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11 years ago today my youngest had 5.5 hour open heart surgery to correct what nature messed up. He was born with Transposition of the Great Arteries (basically the main arteries coming off the heart were all the wrong way round...) To look at him now you'd never know his dicy start with life, ... 11 years ago today my youngest had 5.5 hour open heart surgery to correct what nature messed up. He was born with Transposition of the Great Arteries (basically the main arteries coming off the heart were all the wrong way round...) To look at him now you'd never know his dicy start with life, apart from his amazing scar on his chest. What with CHD and arthritis this boy has had his fair share of crap, but he keeps on smiling. He is my hero ❤
#congenitalheartcondition #chd #transpositionofthegreatarteries #tga #evelinachildrenshospital #openheartsurgery #heartday #heartbirthday #heartwarrior #survivor #superstar #amazing #brave #myhero #11years #thisboycan #proud
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80 years ago today, the first Congenital Heart surgery was performed @bostonchildrens. We have ...
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80 years ago today, the first Congenital Heart surgery was performed @bostonchildrens. We have come so far in the last 80 years and are looking forward to the strides to come. #chd #chdawareness #1in100 #congenitalheartsurgery 80 years ago today, the first Congenital Heart surgery was performed @bostonchildrens. We have come so far in the last 80 years and are looking forward to the strides to come. #chd #chdawareness #1in100 #congenitalheartsurgery
I can’t let Valentines Day slip by without giving an update on our little heart warrior Luka who has ...
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I can’t let Valentines Day slip by without giving an update on our little heart warrior Luka who has successfully evaded open heart surgery for over 650 days. (!!) For our family, today will always be about strength, courage and resiliency. ⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀ ⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀ Last Wednesday Luka’s ... I can’t let Valentines Day slip by without giving an update on our little heart warrior Luka who has successfully evaded open heart surgery for over 650 days. (!!) For our family, today will always be about strength, courage and resiliency. ⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀ ⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀
Last Wednesday Luka’s respiratory therapist Charlene came by for her regular monthly visit. He’s been doing so well that the home visits went from weekly when he first left the Stollery Children’s Hospital to bi-monthly and now monthly. She measured his oxygen saturation levels and they were at an astonishing 95% consistently for a few minutes (85% is his norm). I held back the tears but inside I was elated thinking: this is some kind of miracle. Charlene asked if she could come back in a week to see if he was continuing to show such high numbers. I think she was just as surprised as I was. As soon as she left, I called Scotty to tell him the news. We both got emotional thinking about what this could mean for Luka. ⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀
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A week passed by. Charlene stopped by again today and I held my breath while she measured his levels. We both quickly realized he was back at his regular saturation levels of 85%. I was disappointed for a few seconds until I realized he’s already our little miracle who’s fought so hard to get to that 85%. And I had a flashback to those frightening first few days in the hospital when we didn’t know if he would survive the night. (Okay, now I’m getting teary.)
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It can be easy in the joyful chaos of every day life, when he and Ollie are running around the house like a couple of wildebeest, to forget how challenging Luka’s first few months of life were. And that’s because he’s doing well... phenomenally well in fact. He will always have congenital heart disease and he most likely will need surgery eventually but today was a good reminder of how far he’s come. It was also a good reminder of the power of gratitude. And how fitting that it was on ❤️ day. Photos @kelsynielson. #heartwarrior #pulmonaryatresia #chd #congenitalheartdisease #chdawareness
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HAPPY HEART DAY! It's the last day of Congenital Heart Disease Awareness week. This is our son Z and ...
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HAPPY HEART DAY! It's the last day of Congenital Heart Disease Awareness week. This is our son Z and his battle scars, a repost from two years ago. Since I made this, he's had another open heart surgery at @bostonchildrens , so sternotomy x4 now. We are so very thankful for how well he is doing ... HAPPY HEART DAY! It's the last day of Congenital Heart Disease Awareness week. This is our son Z and his battle scars, a repost from two years ago. Since I made this, he's had another open heart surgery at @bostonchildrens , so sternotomy x4 now. 😉 We are so very thankful for how well he is doing today at age 5. Heart defects can usually be mended, but never healed by our hands. Z Will have more surgeries to replace his artificial valve as he ages (about every ten years), and lifelong monitoring. We see cardiology every three months, along with pulmonology, ENT and gastroenterology. He takes aspirin, medication for blood pressure, and a diuretic. #HLHS #chdawareness #chdawareness2016 #heartsurgery #heartdefects #heartmama #chd #chdwarrior #heartwarrior
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Hi heart Family! Yesterday I was at CHLA again visiting Little Heart Warrior Charlie for the 2nd ...
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Hi heart Family! Yesterday I was at CHLA again visiting Little Heart Warrior Charlie for the 2nd time. If you all remember from the 1st time I visited him I mentioned he's 1 month old & was born with HLHS. He had Open Heart Surgery (Norwood) a few days after birth. He was discharged days after I ... Hi heart Family! Yesterday I was at CHLA again visiting Little Heart Warrior Charlie for the 2nd time. If you all remember from the 1st time I visited him I mentioned he's 1 month old & was born with HLHS. He had Open Heart Surgery (Norwood) a few days after birth. He was discharged days after I visited him. A few days ago Charlie started desatting (low oxygen levels) & was brought back to the hospital to figure out whats going on. Today he is having a Heart Catherization to take a closer look at what going on inside his heart & also determine what's the next step for him. Please pray for him & his family during these difficult times🙏I have become very fond of my little heart brother Charlie & his family. I have been following their journey since before Charlie was born when his heart mom found out that he was going to be born with #CHD. They have also supported my CHD hearts pillows campaign endlessly & have also been very generous contributors to my fundraiser & my mission of spreading CHD Awareness & hope to heart familes. As you all know I donate pillows to heart warriors who are hospitalized to encourage them & for chest pain reduction while recovering from OHS. In the midst of supporting Charlie's heart family & others I have seen the much needed emotional support that heart parents need. With that said I have decided to make a CHD hearts " heart parent" pillow for both of Charlie's parents & I surprised them when I arrived at the hospital.(swipe left to see pillows)It is my way to encourage them & also a daily reminder to stand strong & to not give up because us heart Warriors need you, our dear heart parents ,,there right next to us fighting by our sides. In order to overcome CHD we must stand strong together as a family, as an army,as a tribe. We must unite & encourage each other to not give up. We must lift each other up when any of us are down,weary or tired of fighting.We are a heart family and we must never give up! TOGETHER WE WILL CONQUER CHD!!! 👑💔💪 #chdheartspillows #GivingHopeOneHeartAtaTime #AdultHeartWarriorCrystal #HRHS #singleventricle #dextrocardia #heartfamily #standstrong #havecourage #hlhs #heartdad #heartmom
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 #AdultCHDsurvivorSeries "I’m sharing my inspiring medical miracle story with you and I hope you’ll ...
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#AdultCHDsurvivorSeries "I’m sharing my inspiring medical miracle story with you and I hope you’ll share it with others: Incompatible with Nature–A Mother’s Story. Briefly:  In the summer of 1984, I, a young black American woman married a German man and moved to his country. Several ... #AdultCHDsurvivorSeries "I’m sharing my inspiring medical miracle story with you and I hope you’ll share it with others: Incompatible with Nature–A Mother’s Story.
Briefly: 
In the summer of 1984, I, a young black American woman married a German man and moved to his country. Several months later, an uneventful pregnancy resulted in the birth of our son. Thirteen days later, a cardiologist explained to my husband and me that our baby was “born incompatible with nature and would die. At any minute.” “There is no surgery to save him,” the doctor explained to my husband in German. “Let your son die,” he said to me in broken English. 
Our son Marc entered this world with Heterotaxy Syndrome. Essentially, he was born with only half of his heart–an extremely rare and fatal condition.
Incompatible with Nature–A Mother’s Story is about my challenge of doing all I can to ensure that he has a chance at life while battling my own fears, an array of naysaying doctors, Marc’s innumerable infections, and struggling with a foreign language.

Despite the prognosis and the difficulties, Marc is today thirty-three years old and thriving–a story with a happy ending.

I have written this book  to inspire doctors and caregivers to be more empathetic for their charges and to encourage patients to be courageous and assertive in their health care."- @tracieme1

Available on Amazon! Link:
https://www.amazon.com/Incompatible-Nature-Tracie-Frank-Mayer/dp/1537201298

#chd #congenitalheartdisease #chdhearts #adultchd #adultchdsurvivor #ACHD #givinghope1heartatatime
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