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We’ve spent the whole night in the ER. Double ear infection. Pneumonia. IV antibiotics. There are no beds available and none will be available anytime soon. Maybe, just maybe we can get oral antibiotics that will fight his infections and can go home. #thisisreallife #chdlife #notjustacold #99respiratoryproblems

ਨਾ ਫੁਕਰੀ ਆਉਦੀ ਆ ਮੈਨੂੰ 🙏🏻। ਨਾ ਐਸ਼ ਕਰਾ ਸਕਦਾ ਆ ਤਨੂ❤️। #lifequotes#instagood #goodwives#chdlife #shoot Pc: @amanpreetsingh_77 @piyush5472 @phenomenal.arts

Look how Aiden got to see before his Christmas concert 🎄🎄🎄 #CHDlife #aidenisourhero.

Best friend is a very good mirror#for us#😘😘love u bae😘knnii#dresstoexpress#lovetodressup❤ #chdlife# @kniiiiii 😘😘

11/14/16- My echo started off ok. Daddy held me down and kept me occupied with kisses, mommy let me watch Elmo's world and tried to entertain me with the hospital glove but after 30 minutes, I was OVER IT!!! Waiting for cardiologist to read and call with results. I've been off of Sildenafil since July. Praying I don't have to do this for another year! #chdlife #t21 #heartwarrior

I seen this picture my husband took of me on this day last year. I remember it like it was yesterday we were just home for 2 days and decided to go get a second opinion and I already knew what they were going to say but I was hoping it was going to be something else. no matter how much time you think you prepare yourself to hear your son needs emergency open heart surgery but when you hear it it's like time moves so slow you have a million thoughts going through your mind it's out of your control there's nothing that you could do about it. That day I'd had so many thoughts running through my mind that when my husband took this picture it kind of says it all I was blank. And the next day Julian had open heart surgery and our journey began. #chdawareness #chdwarrior #mommysuperhero #chdlife #julianheart❤

MOST RECENT

When the Bday boy arrives last minute and you want to make it special 😊😊😊 Cheers to us and the fact that distance changes nothing if friendship is true 💝💝💝💝💝.. Happy Bday @vivekthakur59 !!!!
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#friendshipgoals #bdays #makingmemories #happybday #chdlife #chandigarhdiaries #makeshiftcake #notacake #specialbday #makingitspecial #instagram #instaphotos #instapic #dramebaaz #masti #nautanki #aboutlastnight #petha #indiansweet #indianstylebday #necessityismotherofinvention #love #friends #mypeople #celebration

Everyone affected by congenital heart disease has their own unique story to tell. From the ups, the downs, and the miracles that you experience along the way, make sure your posterity knows you fought like a warrior. 💪❤️ .
My CHD Story journals now available for 19.99 and free 🇺🇸 shipping! (Link in Bio) .
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#CHDwarrior #CHD #CHDaware #CHDawareness #congenitalheartdefect #congenitalheartdisease #awareness #1in100 #scarsarebeautiful #heartwarrior #hearthero #CHDkids #CHDbaby #CHDlife #hlhs #hlhswarrior #hlhssurvivor #tetrologyoffallot #openheartsurgery #zipperclub #heartdiseaseawareness #heartmom #heartmama #heartbaby #heartbabies #avs #ASD #coarctationoftheaorta #atrialseptaldefect #pacemaker

• THE ARTIST EDITION •
They are organic. They are sustainable fashion. They are limited edition. They tell a story. They are beautiful. They will help raise money for children with a heart defect. They are from @hildemieke_chillfish_designer They are designed by us. And could be yours too!! Still don’t know what to get or ask for Christmas? What about these T-shirts? >>>NOW also available in children sizes!
LINK IN BIO
#sustainable#tellyourstorythroughart#tellyourstorythroughfashion#designershirts#graphicdesign#duurzamekledinb#sustainablefashion#artist#christmasgift#christmasgiftidea#tshirts#stichtinghartekind#raisingmoneyforcharity#raisingmoneyforkids#raisingmoneyforagreatcause#chd#littleheartsmatter#hartstichting#ihavethisthingwithhearts#hrhs#heartbeat#heartfamily#aangeborenhartafwijking#helpushelpthem#chdlife#childrenwithchd#chronicillness#fontan

Look how Aiden got to see before his Christmas concert 🎄🎄🎄 #CHDlife #aidenisourhero.

Don't let this cute face fool you- someone was "ALL TWO" today 😂 Of course, switching her Ativan didn't help. BUUUUT that means we are on one LESS drip! And continued High Flow breaks when she was awake & Bipap for sleep. And her Viral Panel came back.. NEGATIVE! 🙌🏻🙌🏻 Waiting on the blood cultures yet, but we'll take it! #onedayatatime #annasavengers #chdlife #becauseofanorgandonor #forevergrateful #tiny #adoption #wholeheartadventures

Deep dives are my favorite.
I've been on the receiving end of a few of these and wow wow wow, the transformation that takes place during and the few weeks after! Things start shifting quickly because there's a lot of healing that takes place. ✨Things like >>healing long held childhood trauma ✨More faith and less worry in every day life ✨Kinder self talk ✨more opportunities at exactly the right time ✨people who once triggered you start shifting WITH you or they fall away, allowing your expansion 💜💜💜I have spots open. The investment will be going up in 2018 💜💜💜

I got a grande iced black tea?? 🙀 Even the barista asked, “don’t you normally get a trenta?” Been having irregular heart rhythm for about 6 months now. Beta blockers were increased, but going to try to cut back on caffeine as well. This isn’t easy, but I hope it helps 😩 #chdlife #chd #chdwarrior #chdsurvivor #health #transpositionofthegreatarteries #nevergiveup #cantstopwontstop #healthylife #healthymind #healthybody #healthyheart #instagood #picoftheday #photooftheday #openheartsurgery #teamnodaysoff #motivation #life #1in100 #nodaysoff #starbuckslife #caffeine #caffeineaddict #starbucks @starbucks #cat #massimo #crazycatlady #tiffanyring

Bub is 6 months old today! He weighed 5.61kg this morning (roughly 12.4lbs)
He started rolling over a couple days ago and won't stop. He hates it because he hates belly time 😂. #masonwilliam #masonstrong #masonsmilestones #heartwarrior #ohs #chdlife #chd #chdwarrior #ltga #cctga

Look who got a break on HIGH FLOW today (in her cute new @bellinghambabyco dress!)! True, it was on 12L & true, it was because she was fighting her BiPap SO MUCH she was desatting, mottled, & raising her heartrate, BUT when she got on it she rocked it! Even felt good enough for her first (brief) play session since surgery. However, this afternoon she spiked a high fever 💔 They sent off more blood cultures & did a respiratory viral panel. Really hoping it's a fluke teething fever or something, just not infection. But we'll figure it out either way, by God's grace. Due to a national shortage, we have to switch her IV Ativan drip to enteral Ativan tomorrow, which is much sooner than we originally planned. Ativan has always been a hard one for her to wean down on & she's still coming down from all the medications she got over the weekend. But overall, besides the fever, this afternoon was such a treat after a tough couple of days. And a welcome sight after I ducked out for the evening to catch Daisy's dress rehearsal before Tyler headed back to work. My biggest girl looked so grown up! And even though our crazy lives/schedule & her being sick one of the last practices had her missing a few steps, she kept a smile glued on her face, added some of her prn creativity, & never gave up 😂❤️ Love the confidence, consistency, & loving attention @infinity.dance.5678 has given her (& us!) since she started there, & especially these last 6 months. It's been such a blessing! #gratefulfortoday #annasavengers #wholeheartadventures #onedayatatime #chdlife #prayerlife #everydayblessings #ballet #dance #infinitydancestudio #lovelocal

Today was awesome. 8 weeks after breaking my toe I finally got back to hip thrusters and today hit a personal best of 205lbs. The last rep I did before the broken toe was 185! Now that’s progress and gains. I’m so proud of where I am!

#npcimcominforya #gains #cantstopwontstop #gymaddict #strongereverday #hipthrusts #strongnotskinny #thursdaymotivation #soproud #chdwarrior #pacemakerprincess #completeheartblock #idothisforme #mystory #miracle #heartpatient #chdlife #goredforwomen #iamawarrior #iamasurvivor #1in100

Finally perfected my hair curling skills thanks to my favorite blogger @k8_smallthings (only took me 20 years🙈), last day of this insane grad semester and Open Heart Surgery is scheduled for June! So that means curling my hair everyday till then since upper body will be taking a nice vacation(insert sarcastic voice😝) and practicing shameless selfies since I’ll have 2 months of nothing to do💁🏼 .
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#round3 #mimisopenheart #chdawareness #openheartsurgery #chdpatient #chronicillness #gradstudent #gradschool #chdwarrior #chdlife #openheartsurgerysurvivor #blogger #auntie #auntielife #thankful #1in100 #education #lifestyleblogger #gratitude #avcanaldefect #chdsurvivor #zipperclub #chronicfatigue #auntiehood #cultivatewhatmatters #gracenotperfection #faith #zipperclubmember #invisibleillness

Look who got extubated today!! During the night Anna finally started to wake up from her Vec drip wean but made it apparent she did not like her breathing tube. It took quite an increase in her Propofol drip to keep her comfortable overnight. Amazingly, her vent settings were weaned way down & she started breathing over the vent! She was very anemic & still on a lot of propofol this morning so she received a blood transfusion & they weaned her propofol off before they extubated to BiPap (aka Scuba Mask). Right now the hope is to keep her on the mask tonight, then if things still look good tomorrow, switching her to nasal bipap (her head is right in between their 2 sizes so keeping the seal when she's mobile is really tough & she needs the pressure to keep her left lung open). Also going to work on a plan to keep her withdrawal in check since she received an unprecedented number of PRN medications the last few days. The bright spot? We were able to keep the Dilaudid & Precedex drips at the same level we'd weaned to prior to Friday (though she did get lots of Dilaudid PRN's, the Precedex has been the hard one to wean & we didn't lose ground there). We appreciate all the prayers! We were originally hoping today could be extubation day but yesterday they "took it off the table" & planned to use the rest of the week to "optimize her for extubation". Well, we know how much Anna likes our plans 😂😂 So we got to take a big step forward today! And though she was still a little loopy (as seen in the video), she "finger danced", signed "all done" & "please", & watched movies with her Daddy & I. #justanotherdayontherollercoaster #annasavengers #chdlife #wholeheartadventures #becauseofanorgandonor #onedayatatime #neveradullday #grateful #prayingformorebetterdays #faithchangeseverything #adoptionrocks

The fires are bad and smoke is everywhere. So it’s a #vogmask day with my #1099 #filter Stay safe everyone!!!! #chdlife #ptsdlife #openheartsurgery #love #polylife #polyamory

❄️🌨️☃️ It's cold outside! ☃️🌨️❄️

First, apologies for our lack of updates. In the spirit of transparency... Friday rattled us. Really, really shook us up. Both Tyler & I are having a hard time picking ourselves back up, putting our brave faces on, & sucking it up. We're scared. No one, most especially us, saw Friday coming. Just the hour before, the plan had been to pull her off telemetry (heart) monitoring, schedule her swallow study, trial her off oxygen, & look forward to moving to the floor. And then I noticed some mottling on her face, despite good sats, & laid my hand on her chest to feel something hitting me back. It spiraled from there. My baby turned gray & had a staff response that rivaled her early days. Only this time, no one had any idea what was happening. We nearly lost her. The shock has rippled through the whole floor. To make matters worse, no one at SCH has seen her case like hers before (Complete sternal dehiscence without infection), No one has any ideas what to do differently going forward, or how to keep it from happening again. And that's terrifying. She had a rougher day today with needing more vent support, & a blood clot scare (thankfully negative, but now to continue an infection workup). But before Daddy showed up I decided she needed some "gussying up" & I think it perked us both up a bit ("Look good, feel good" right?). We also finally did one of those handprint ornaments of her lucky fin side to add a little "sparkle" to this chapter. Please pray for progress, healing, & someone with some ANSWERS for us! #wonderwoman #ourhero #annasavengers #hearttransplant #chdlife #onedayatatime #oneprayeratatime #rattled #wherearemybiggirlpants #godisstillworking #stillgrateful #becauseofanorgandonor #secondchance #wholeheartadventures #luke12v25 #phillipians4v6 #trying

CHD leaves my immune system quite low, last year I made sure I had plenty of vitamin c and for the first time in a long while I made it through the winter without needing any antibiotics, so I’ve been and stocked up, especially as I am going to be working at the hospital soon I need to make sure my immune system is fighting fit! It helps that it actually tastes nice too! #congenitalheartdefect #congenitalheartdisease #chd #chdadult #chdwarrior #chdproblems #chdlife

Today December 2nd makes a year since Julian got his open heart surgery. Happy Heart Day for Julian and heartiversary And thanks so much too everybody in cicu team @nemourschildrens hospital and everybody that I got to met that became more than friends more like family now. Thanks to a friend of mine's who help make this happen she is really great at what she does for making his cake @prudentsweetcakes. #chdawareness #mommysuperhero #chdlife #heartwarrior

I seen this picture my husband took of me on this day last year. I remember it like it was yesterday we were just home for 2 days and decided to go get a second opinion and I already knew what they were going to say but I was hoping it was going to be something else. no matter how much time you think you prepare yourself to hear your son needs emergency open heart surgery but when you hear it it's like time moves so slow you have a million thoughts going through your mind it's out of your control there's nothing that you could do about it. That day I'd had so many thoughts running through my mind that when my husband took this picture it kind of says it all I was blank. And the next day Julian had open heart surgery and our journey began. #chdawareness #chdwarrior #mommysuperhero #chdlife #julianheart❤

Anna is out of surgery. Stable. Sedated. In the OR they found that her sternum had broken apart & 5 of the 6 sternal wires they had closed her chest with had pulled out of the left side. The last one was loose & barely holding. Her sternum was both repaired & reinforced. Praise Jesus, it didn't look infected like they suspected, but they did do cultures, & we are hoping they come back negative. She is on post-op antibiotics prophylactically. Thankfully, despite the earlier events, her new heart seems, overall, unphased. Her left lung did go down but looks more open post-op. She will remain intubated for the next 3-4 days to try & give this repair a better start than the last one. She does have a mediastinal chest tube to monitor drainage too (which we definitely won't let the nurse pull prematurely! Especially since it seems that mistake may have had a strong hand in landing us here). Today was nothing that we expected. It went from scheduling swallow studies & talking about trialing her off oxygen- to a code-to emergency surgery- to here. I hate having to text Ty & tell him to get down here "now". And the team worked a long time to stabilize her & get her down to the OR. But she's STILL here. She has some big challenges the next few days as she's nearly impossible to keep completely sedated, but hopefully some new drug combos do the trick. And we need her to not have any infections. And find some miracle to help us pull the sedation off on a few days & not have her lose her mind & re-injure herself. Thank you for the prayers, they've so far saved us from a much worse outcome. Praying this is just a little bump, and we'll get our Tiny back soon. #wholeheartadventures #annasavengers #chdlife #hearttransplant #onedayatatime #livingbyfaith #andprayers #readytoclosethischapter #someday

F R I D A Y • F A C T

I was advised to not participate in contact sports because of my CHD (every case is different and this was 30 years ago). So instead, my parents enrolled me into dance at age 3. My first dance class was ballet and from there I took tap, jazz, lyrical and hip-hop. I fell in love with Dance. It was my life for most of my childhood!!

While I don’t participate in dance classes today, I’m still known as the dance machine by all my friends. Whenever there is music on, I have to be moving!

For those with CHD, what did you grow up participating in? .
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#chdwarrior #chdwonderwoman #chdlife #danceislife #dancingqueen #danceyourheartout #1in100 #dancer #invisibleillness #chronicillness #unstoppable

Happy December! It's the perfect day for a GIVEAWAY!! Today we're giving away one of our new Heart Hero Dad Tee's! To enter to win, just (1) like this post and (2) tag two friends!

Check out our Facebook page for an additional entry! Good luck!! #CHDwarrior #CHDdad #HeartHeroDad #HeartDad #HeartHero #CHD #CHDaware #CHDawareness #congenitalheartdefect
#congenitalheartdisease #CHDlife #hlhs #hlhswarrior #hlhssurvivor #raiseawareness
#1in100 #zipperclub #scarsarebeautiful
#tetrologyoffallot #pacemakerclub
#openheartsurgery #CHDlife #CHDbaby #CHDkids #heartdiseaseawareness (Disclaimer: Contest not associated with Instagram or Facebook. Giveaway ends Saturday 12/2/17 @ 1:00 MDT. Winner will be announced on Instagram and Facebook later that afternoon. Good luck!)

My darling husband threatening to hack my pacemaker #benicetoyourspouse #holdingmyheartinhishands #hecanmakemyheartrace #pacemaker #chdlife

*• TO A BEAUTIFUL HEART, EVERTHING APPEARS BEAUTIFUL *• It’s me! In my own designed T-shirt. I drew my heart. The Artist Edition of @hildemieke_chillfish_designer
So, are you struggling what to buy for this upcoming the Demcember (holiday) month? Why not this sustainable bio shirt?
Plus when you do, you’ll also be helping children with a heart defect. Because part of the profit will go to them.
LINK in BIO
#hrhs#fontan#hartstichting#stichtinghartekind#aangeborenhartafwijking#heartwarrior#heartbeat#sustainablefashion#t-shirt#fashion#clothing#duurzamekleding#toabeautifulhearteverythingappearsbeautiful#hartekind#idrewmyheart#selflove#helongchildren#kleding#clothesdesigners#designing#helpingchildreninneed#chdwarrior#chdlife#chronicillness#welovefashion#artist#artistedition#chillfishdesign#ikziehartjes#ihavethisthingwithhearts

It's the best time of year! Though TBH this year is a little.... Jenky. But we're doing our best to keep it as normal & wonderful as possible :) Thanks to the @lyndengreenbarn for having a WONDERFUL (& affordable!) selection of trees that the kids loved getting to pick out with us (that they named "Heart-y" on the way home for Anna). And they also enjoyed shopping for, setting up, & decorating "Anna's tree" for her hospital room (thanks @hobbylobby #blackfriday ) Anna just loved chewing on the lights 😂 Though I was supposed to be down with Anna today, a little health hiccup (I'm fine!) ended up affording the four of us a fun little memory for the Bigs Kids of picking out a tree together & gave us a tangible reminder that sometimes things don't go as WE would plan them, because God has something else in mind. But I am looking forward to seeing my littlest big girl tomorrow (& eternally grateful to @arlomaribethdz for giving up her plans to spend the whole day with Tiny in my place). #makingmemories #christmastree #christmasisthebesttimeoftheyear #family #apartbutnotatheart #chdlife #buyinglocal

As Anna starts to re-learn "mimicking" after her stroke, we've made up this game simply called "Serious Anna, Happy Anna!" & we make "serious" face then "happy" face & try to get her to copy us! Lately she just loves doing "serious Anna" face & ending the game there 😂 But Tyler caught one of her rare smiles! We are in a little transition where Anna is more stable, but less comfortable as we continue to wean down on and/or move her IV meds to enteral in an effort to move closer to D-day. While we've been so lucky that this round is much less "dramatic" than previous, it's still hard to see her through so many restless, angry, antsy, uncomfortable days. She's having trouble sleeping, fighting her respiratory support, & not really enjoying her new life at the moment. Her new heart has also allowed her to act like her intended-self: a TWO YEAR OLD! So she's feisty, telling us "no" very adamantly, & our newest development: stranger-danger! She's very clingy to her family right now & pretty much "over" everyone else (but can anyone blame her? Lol). Still can't believe we are on the OTHER SIDE where discharge/home/life/togetherness are a real, tangible possibility (Lord Willing). We are working towards exiting, not just "existing" & it's so wonderful!! #becauseofanorgandonor #soblessed #stillstressed #chdlife #hearttransplant #wholeheartadventures #annasavengers #onedayatatime #dreamingofhome and #awhitechristmas #seasonofgratitude #twoyearolds

Wow, it’s been a while since I last blogged. And this post will give a little insight as to why it’s been on the back burner. The last few months has taught me that now more than ever, congenital heart disease needs more research, funding and awareness! I hope in my lifetime, there will be more procedures that could be done for intervention instead of full blown open heart. Until then, we share, cry, support and shout to the rooftops who we are and simply not give up❤️ . Link in Bio❤️
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#mimisopenheart #chdawareness #openheartsurgery #chdpatient #chronicillness #gradstudent #gradschool #chdlife #chdwarrior #openheart #openheartsurgerysurvivor #blogger #auntie #auntielife #thankful #1in100 #lifestyleblogger #gratitude #avcanaldefect #chdsurvivor #zipperclub #auntiehood #faith #hope #zipperclubmember #zippersisters #givingtuesday #savetheheartbeat #blindobedience #invisibleillness

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