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kirstine.openshaw.realtor

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jkristinamacdonald

So....I gotta get something off my chest. I'm sorry if anyone takes offence but I think you NEED to hear this. I only wish someone would have said this to me when I was struggling to start my journey, struggling to go after what I truly wanted, struggling with self doubt, struggle to make the decision to try.... Stop with the excuses!See the girl on the left?She is a bull shitter, full of lies&excuses of why she didn't need to look after herself,her health,her body, mind,spirit,her dreams,her desiresSee the girl on the right? She realized that she was using those lies as an escape to feel better about not doing what needed to be done. Wallowing in the pity party that would never get her anywhere so instead she decided to TRY!! She's determined&refuses to let anything including herself stop her from what she truly wants!!Friends!!Stop saying you don't have enough time, you can't do it,you don't have the money,you're too old, you're too young,you have health problems, you can't commit,you have a girls night coming up, you're going on vacation, you're too busy, you're afraid of failing, you don't know where to start, life's unfair. JUST STOP 🛑Those are all LIES!!! Lies we tell ourselves so we feel better about not doing what needs to be done. What we know we should be doing.I know this because I was there too!! Lying to myself, sometimes didn't even know it!Have you ever realized that those excuses only sound best to the person who is making them up? 🤔You say you want more than what you have, you say you want to change, choose a different life, want more for your kids, get out of the hell you are in,become healthier, richer, happier, skinnier,but you don't want to do what it takes.You don't want to put in the work, to INVEST in YOU!Stop lying to yourself, believing the BS stories you are telling yourself(I use to tell those stories to myself ALL THE TIME&still there are times I catch myself starting to but stop)because the truth is you ARE capable of changing your life, you DO have the skill,knowledge,willpower, discipline to go after what you want&You deserve it!This is your chance,your moment ,your dream YOUR life.So believe in you!Reach out I'm here 4 U 💕

1

canuckscribe

Showing my heart some love by sticking to the cardio routine. Always make time for healthy activities. Hit the 6 month mark post #openheartsurgery last week, so there's another milestone reached in the recovery process. #heartsurgeryrecovery #heartsurgerysurvivor #heartsurgery #openheartsugeryrecovery #openheartsurgerysurvivor #congenitalheartdefect #chdawareness #zipperclub #zipperclubmember #hearthealthyhabits #maketimetoexcercise

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mrcrampy

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chad.long08

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welcome_to_leahs_world

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bucket_t21

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lovesforlilyruth

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meeteverlyjo

The last few days have been very difficult for me... Silence is the enemy when your grief is this excruciating. I constantly play music on my phone, and my laptop is always streaming Friends. The second it gets quiet and I am still, my heart hurts so bad I can’t breathe. It’s not that I am trying to ignore my pain, I am just trying to function during my day. Urban needs a functioning mother. So does Everly. So, I blast my music and get busy. I run errands, do laundry, deep clean, schedule appointments, and more. The tears flow during and in between these events but at least I am functioning. Grief is ever evolving and changing. Until this deep dark cloud passes by, I just hold my breath and hang on. 🌪Sometimes being strong is simply just surviving..

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lifewithlucy03

We got the results back from Lucy’s MRI yesterday and I’ve had some people asking about them so I thought I’d share! Lucy had an MRI done to check for extra fluid on her brain and her neurologist told us that the results showed that Lucy had a stroke.😳😐 She is not sure when this happened but thinks it was around the time when Lucy was having a lot of heart and lung problems, right before her surgery (at least that makes the most sense as no one picked up on it). This helps to explain more why Lucy has a difficult time with her motor skills, eating, and even the fact that we have wondered why she favors her right arm and leg more than her left. Because Lucy was a baby when this stroke happened her neurologist said that she has been able to bounce back quite well, even to the point of rolling around and holding her head up. We will be doing a test in the future to figure out in more depth the parts of her brain that have been damaged. So I will keep you posted! We are just so grateful everyday for this miracle girl!! 🧠 ❤️ 💪 #mri . . . #downsyndrome #downsyndromeawareness #joubertsyndrome #13qdeletion #downsyndromelove #nothingdownaboutit #congenitalheartdefect #openheartsurgery #zipperclub #heartwarrior #sleepapnea #lowmuscletone #t21 #trisomy21 #theluckyfew #dsdn #upsyndrome #changingthefaceofbeauty #bilateralhearingloss #hearingaids

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bucket_t21

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deidraalysedavis

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dearcharys

When there’s a Friday at the end of the tunnel but you gotta get through Thursday first. 🙃😊 #movingsucks #storage #littlehelper #warriorprincess

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mimisopenheart

Dentist visit #2 and hopefully final one is done. Thank god! I know pre-medication is only supposed to help, but for some reason is makes me so nervous as a heart patient. Especially when the dentist place constantly asks, “Are you sure you took your premed?” I get it, but it’s intimidating at times. Another to do list checked off for surgery. Figuring out what smoothie to get since half of my face is numb. Anyone else pre-med before? . . . . #mimisopenheart #chdwarrior #chdawareness #chdaware #chdsurvivor #congenitalheartdefect #zipperclub #openheartsurgery #1in100 #medications #congenitalheartdisease #medications #dentistappointment #chronicillness #chronicillnesswarrior

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alisamnelson

If ever there was a visual of love- this is it. If ever there was a description of this journey, it is without a doubt a roller coaster of emotions. This moment from right after Charlie was extubated yesterday was a wonderful high, it was the first time he had been out of bed since before the cardiac cath on Monday morning and Matthew and I were literally pushing each other aside as to who was going to get to hold him first. We compromised by Matthew picking him up out of bed and handing him to me in the chair; I captured this sweet long moment of relief before he passed him over to me. We still don’t have many or really any specific answers as to what is going on with Charlie and why he’s struggling with his oxygen/breathing (which is better than it was, but not optimal)... and that makes my mind wander and go all over the place and worry and stress and cry and think about the long term and all the unknowns. But from what we have learned so far it is important to celebrate the tiny victories and to appreciate the positive moments and successes when you can, and that is most certainly what this beautiful moment was. #charliethechampion

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jennnnking

❤️❤️Yesterday was @doniesheartodyssey round of appointments at @tsrhc for his scoliosis. Good news! His curve of 70 degrees hasn’t changed at all in the last few months, so growing rod surgery can wait longer! Hopefully all his medical teams can time everything just right between that and his next heart surgery. ❤️❤️ . . . . . . . #superman #chdawareness #22q #22q11 #complications #digeorgesyndrome #scoliosis #heartwarrior #zipperclub #donie #hero #resilience #appreciatelife #bravery #coolestkidever

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kirstine.openshaw.realtor

Lincoln had a fantastic night, he slept all the way through without meds or benedryl....while on his 27kcal feeds at 24ml....that's our goal feeds for him! The cardiologist is here today so the nurse is keeping an eye out for him for me to ask about Houston getting back to us. So excited he is tolerating his food so well! I wonder if some of his discomfort also came from that lump putting pressure on him? I'm not sure how long he will have the wound vacuum on, it is still draining fluids every now and again. Wound care also looked at his leg yesterday and were very happy with how its healing. From rounds this morning nothing has grown yet in his cultures from his chest so that is a great sign.....we want to keep hearing that! Of course, if it is a sterile abscess then that is something else to deal with...we will cross that bridge when we come to it. For now I'm grateful his bacterial infection seems to be under control, his tummy isn't hurting him, he is able to go to the bathroom and he is comfortable! #LincolnGeorgeOpenshaw #BabyOpenshaw #chd #1in100 #hrhs #HypoplasticRightHeartSyndrome #heartwarrior #zipperclub #ivfwin #1in100 #congenitalheartdefect  #halfaheartnothalfalife #heartsurgery #openheartsurgery #heartcenter

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heartbabymj

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katie_westhaver

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elyssa.rulison

In case no one has told you already today...Good morning Gorgeous!😘

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courtneyheartstrong

Be in LOVE with your life!❤️ And if you are not, let’s change it. Deal?🙏 #life #love #girlswholift #fit #momma #zipperclub #beachlife #lakelife #heartstrong

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healthyhearties

No matter where you are in your heart journey, you can keep going. If you’ve had a set back recently, you can come back from it and you can get through it. Keep fighting, don’t give up, keep going. Yes, you CAN get back up again, even if it seems impossibly hard, you just need to take one step and one day at a time. #onestepatatime #youcandothis #youreafighter #getbackup #keepgoing #nevergiveup #healthyhearties #inclinewalk #hearthealth #healthyheart #heartwarrior #heartattackrecovery #heart #hearts #heartaday #bhf #cardiacrehab #cardiacrehabilitation #fitnessforheartpatients #exerciseforhearts #heartsurgery #zipperclub #couchto5k #getmoving #safeexercise

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a_n_ie

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hypoplasticrightheart

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mrcrampy

Preview of the full line... I hope to have everything setup with the store by tomorrow. Let me know if you are interested. More details to come but I am really excited. Thanks @macbethkw for the kickass designs!!! #fuckheartdisease #zipperclub #openheartsurgery #heartdisease #chd #triathlon #cycling @jakroousa @baseperformance #ripmv @vandertri

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momfit_life

Here I am! 10 weeks postpartum and still working! My belly is still there but getting smaller each week! Tomorrow is my measurement day and I feel good about it! #10weekspostpartum #transformationtuesday #fitnessjourney #postpartumbody #postpartum #postpartumfitness #postpartumjourney #momofboys #fitness #outnumbered #nursingbra #workoutmotivation #mommy #wife #chdwarrior #zipperclub #selfie #blogger #instapic #igyoga #ig_photooftheday

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kirstine.openshaw.realtor

I was going to go home with Clive tonight but...I overheard the nurse during handover say "oh they really want us to pause feeds if he gets irritable?" Umm yep, considering we are attempting 27kcal again tonight and the last time it went terribly and he was in severe pain. So I'm going to stay so that I can pause feeds & vent as needed. I don't want to come in the morning to him in distress or drugged. He had his dressing changed on his picc line this evening as it hadn't been changed since 7/10 and was looking quite ratty, considering we are battling infections I asked the nurse to change it, I would hate for him to lose that access. He loved his high contrast books that arrived today! He is currently sleeping off his adavan from his dressing change so I'm waiting to see how he tolerates this feed 🤞🤞🤞 I hope he handles it ok as he really needs to gain weight, especially now his surgery has been postponed because of this chest issue. #LincolnGeorgeOpenshaw #BabyOpenshaw #chd #1in100 #hrhs #HypoplasticRightHeartSyndrome #heartwarrior #zipperclub #ivfwin #1in100 #congenitalheartdefect  #halfaheartnothalfalife #heartsurgery #openheartsurgery #heartcenter

1

its_vero36

My poor baby isn’t feeling so well. All he wants is to cuddle with mama. He’s literally a mamas boy. 💙 CHD sucks . Like I’ve mentioned before these heart babies are really fragile . There immune system isn’t like a healthy person immune system. They get really sick fast and can even be sent to be hospitalized. #chdawareness #heartbaby #isaiasthestrong #bigboy #hlhs #zipperclub #sickbaby #notfeelingwell #butstillhappy #warrior #mylove #myworldinonepicture #thathair #thosebeautifuleyes #almostoneyear #mamasboy

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wolfpackwarriors

Wee home!!! We got to home today, and hopefully that’s where we’ll stay for a while. We’re watching #sugarrush and trying to put the passy in our mouth. #chdwarrior #1in100 #hlhs #wolfpackwarriors #zipperclub #ecmosurvivor #hlhswarrior #heartwarrior

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myannasheart

She fought to survive. She fought to be born. She fought prematurity. She fought Congenital Heart Defects. She fought a Tethered Spinal Cord. She fought for her tailbone repair. She has fought through RSV, pneumonias, bronchitis and many more illnesses. She fights failure to thrive, asthma, feeding disorders, sensory processing disorder, anxiety disorder, ADHD and Autism. #fighter #nevergiveup #ican #survivor #heartsuperhero #warrior #hearthero #Sobrave #seetheworldthroughmyeyes #zipperclub #godisgreat #blessedbeyondmeasure #preemiepower

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marymyerscough

We are home now, but I took this while we were waiting to find out if they were going to let us leave the hospital earlier today. I truly marvel at Jocelyn’s strength and resiliency. She manages to cope and recover from pain, discomfort, and stress so quickly. That’s not to say that she doesn’t express herself (we sure got an earful for a while) and she needed comforting, but she moved on and played like any other child. We are so lucky to have her. ❤️😍🙏🏻 . . . . . . #jossfightslikeaboss #heartwarrior #tricuspidatresia #singleventricle #doubleinletleftventricle #dilv #cysticfibrosis #chd #countdowntosurgery #zipperclub #tubielife

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hypoplasticrightheart

Dear Universe, please help firefighters to put those fires down and clear the air....our baby need fresh air, pleeeeease #wildfires #fire #carsoncitynv #carsoncity #nevada #badair #wildfire #hotsummerdays #heat #hotweather #fires #firefighters #momlove #momlife #hypoplasticrightheart #heartkid #zipperclub

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mrcrampy

I am so excited to announce that in partnership with @jakroousa we will be releasing the new F&CK HEART DISEASE line of kits!!! I will be posting teaser pics over the next day or two. Once the store is ready and open you can start buying. The store will remain open and you can DM me with any questions. #fuckheartdisease #zipperclub #ripmv #openheartsurgery #chd #heartdisease #triathlon #cycling

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outburst62

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chad.long08

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justwhenyouthinkshesdown

Such a good Day!!! Baby girl is Weighing In at 18.5 lbs and grew an Inch in a MONTH!!!!! Praying we stay this consistent.... Next up is a Swallow study....

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meeteverlyjo

December 8th, 2017. The day before she passed away. The most perfect sneeze and the sweetest face in the entire world. 🌎 . . . #mywholeworld #myangel #babysneeze #chd #chdsucks #chdawareness #findacure #zipperclub #openheartsurgery #feedingtube #gtube #gtubebaby #thatface #perfect #angelic #bestillmysoul #mourning #lossmom #infantloss #untilwemeetagain

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keeping_up_with_kaci

Kaci had a couple appointments today! First was her echo to check on her heart. The cardiologist was very happy with it! He gave us the okay so stop with her blood pressure medication. He noticed the blood flow into her heart is still a little quicker than normal but he’s thinking it’s positional to her sternum since her heart is a little crooked and as she grows it will fix itself. After that we went to visit her orthotist to check on her helmet and head shape. We were hoping to be done with it, but her head is still growing pretty quick so we’re going to tough it out for at least a few more weeks. Overall, we couldn’t be happier with how today went! Our little rockstar is still doing amazing! . . . #zipperclub #avcanaldefect #chd #toughgirl #lifeisbetterwithyou #extraordinary #t21 #homiewithanextrachromie #blessed

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kirstine.openshaw.realtor

So I stayed at home last night & Clive stayed in the room with Lincoln, he said he slept all night only a few minor wake ups. When I got here late morning (to him screaming) the Dr came in & said "oh good, you're here, he will cheer up now" 😂 apparently he has been running his nurse ragged again and exercising his lung capacity via screaming. He wore this same lady out when he was in his other room, I bet she dreads getting assigned to his room! Ha! Once I got him changed and comfy he had to have a heel stick to check his Vancomycin (this latest antibiotic) levels, but he did great he barely cried - sugar water is the best! Now he is happy sitting in his "throne" the boppy pillow watching Matilda smiling & watching everyone outside his room. Infectious disease came by & put him in isolation until they know what we are dealing with. The Dr said 24 to 48 hrs for any results on what that puss was, they've preemptively put him on the Vancomycin in case it is an infection. Poor guy, his wound vac is doing a good job draining fluids but he seems a little sore. So fingers crossed for no news regarding his cultures until tomorrow....the longer the better as it means nothing is growing in them! I'm about to call Houston for an update ❤ #LincolnGeorgeOpenshaw #BabyOpenshaw #chd #1in100 #hrhs #HypoplasticRightHeartSyndrome #heartwarrior #zipperclub #ivfwin #1in100 #congenitalheartdefect  #halfaheartnothalfalife #heartsurgery #openheartsurgery #heartcenter

2

queenofcreative

I know this will soon be our reality with Jax... How do you ever prepare?! HONESTLY??? I don't think you can. You just have to have the utmost faith in the medical team and the forces that guide them. While in my care, I work hard keeping our baby boy germ free and as healthy as possible with lots of rest, the best diet and exercise within his limits. Love and positivity all the way!!! #ActionJaxon #chd #EbsteinsAnomaly #HeartWarrior #strong #brave . . . repost via @instarepost20 from @savetheheartbeat This is what CHD Looks like. #Repost @lyly0118: Today Ben and Tucker left back home so it’s just me and baby girl during the week. 😳 it’s okay... because you know that corner we’ve all been waiting for?? Baby girl turned it yesterday!!! They’re talking about starting to wean her off a couple of meds to slowly take her out of sedation today!!!! She’s a strong fighter!! #chd #zipperclub #thoughshebelittlesheisfierce #mylittleraegan #22q

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hannahleabowman

Fun at the zoo with our new giraffe named Twiga (Swahili for giraffe) and our cousins! #johnsonfamilyvacation #keegansheart #halfheartwonder #chd #chdwarrior #hlhs #littlewarrior #zipperclub  #chicksdigscars  #rockyourscar  #IzzyBelle  #cousinsforlife

2

valerie3582

Notice anything missing?! Operation Kick that Vent to the Curb has commenced! Joshua just finished his first one hour trial off the vent!!! 🙌🏼🙌🏼🙌🏼 Praising God for this big milestone and praying our little man can tolerate the time increases over the next couple of months so he can have some freedom from all those tubes! #Godisgood #joshuasjourney #onGodstime #slowandsteadywinstherace #hisshirtisofftomonitorhisbreathing #nottoshowoffhismuscles #brighteyes #chd #1in100 #hlhs #halfahearttwicethefight #zipperclub #trach #trachbaby

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theadventuresofrobyandamelia

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life0fstacy

@sarahgriffin1 saw this and thought of you and London! Praying for you today. #newzipperclubmember #Repost @the_chd_life ・・・ 🙌🏽🙌🏽🙌🏽 And to those who are literally healing other people’s broken hearts. ♥️💔♥️ #achd #chdawareness #freemanhospital #nhs #chd #brokenheart #mendingabrokenheart #healingbrokenhearts #chdlife #chdaware #chdawareness #chdadult #chdadvocacy #1in100 #heart #healing #zipperclub #zippersisters

0

mamafee12

Hauling ass to get all the pre op stuff done! Absolutely shocked it's today at 2 .... here goes nothing! Thanks for all the love! It's deff needed at this time! 😘 #tetralogyoffallot #pulmonaryvalvereplacement #chdawareness #heartsurvivor #heartsurgery #openheartsurgery #zipperclub

24

the_chd_life

🙌🏽🙌🏽🙌🏽 And to those who are literally healing other people’s broken hearts. ♥️💔♥️ #achd #chdawareness #freemanhospital #nhs #chd #brokenheart #mendingabrokenheart #healingbrokenhearts #chdlife #chdaware #chdawareness #chdadult #chdadvocacy #1in100 #heart #healing #zipperclub #zippersisters

0

welcome_to_leahs_world

I just can’t resist to smile when she does 😍😍💞💗 #hersmile #happywednesday #happybaby #leahsamara #theluckyfew #dsdn #adore_able #faboulous #michina #zipperclub

0

savetheheartbeat

This is what CHD Looks like. #Repost @lyly0118: Today Ben and Tucker left back home so it’s just me and baby girl during the week. 😳 it’s okay... because you know that corner we’ve all been waiting for?? Baby girl turned it yesterday!!! They’re talking about starting to wean her off a couple of meds to slowly take her out of sedation today!!!! She’s a strong fighter!! #chd #zipperclub #thoughshebelittlesheisfierce #mylittleraegan #22q

35

courtneyheartstrong

Nope, #nofilter 💜 Embracing #strongnotskinny 💪 Cherishing #family #moments 🌈 Remembering #foodisfuel 🍃 Building #team #heartstrong everyday💙 We are not perfect. We are busy mommas. We love. We laugh. We are #heart #strong!🦄 Will you say YES today? For real? I promise I am talking to you if you are willing to feel the inspiration. Will YOU join us?🙋‍♀️ #zipperclub #openheart #survivor #eatingdisorderrecovery #fitness #momma #selflove #obx #vacation #pineapple #love

1

eightfive11

I contemplated for a long time about whether I'd share the first picture or not. Even now, one year later, I sob when I see it. It's been a hard year. Jordan and I both have a bit of PTSD from this whole ordeal. I think the looming possibility of more open heart surgeries keep that wound very open and very raw. When I walked into his room after surgery, something died in me that I'll never get back, and a strength I never knew existed was born in its place. He learned to sit up on his own the night before surgery. He learned to crawl properly in a hospital crib. He nearly died two days after surgery when he got a pneumothorax. To see your child's oxygen drop so low that his pallor changed, and he went limp is something that you can never unsee. Thank God Jordan wasn't at work that morning. He saw the pneumo as soon as he looked at the x-ray, and he fought with the hospital staff until they placed the chest tube. To see him go from father to physician at the drop of a hat; barking orders at people... I'll never love him more than I loved him at that moment when he made sure hospital staff saved Andy's life. It's going to be a long road. They'll never finish an echo and say things look normal. His heart will forever be abnormal. Yearly echos. Cardiologists saying they're confident he might not need another surgery.... Until he does. And until then, I'll enjoy the kisses, the snuggles, the giggles, the smell of his hair. Happy one year heartiversary, baby boy. Keep your heart strong for mama. #chd #heartwarrior #tetralogyoffallot #oneyear #heartiversary #zipperclub

6

lifewithlucy03

Oh Lucy! The doctors keep putting you in the “toddler” category and I always laugh because you are still so much my baby. But seeing you today at this neurology appointment shows me how much you are growing out of the baby stage.....😭❤️😂 {we are waiting to go over her MRI results from a while back.🤞 for good news} . . . #downsyndrome #downsyndromeawareness #joubertsyndrome #13qdeletion #downsyndromelove #nothingdownaboutit #congenitalheartdefect #openheartsurgery #zipperclub #heartwarrior #sleepapnea #lowmuscletone #t21 #trisomy21 #theluckyfew #dsdn #upsyndrome #changingthefaceofbeauty #bilateralhearingloss #hearingaids

14

ambyrjill

1

justwhenyouthinkshesdown

Swinging her arms and playing while sitting, AND keeping her balance 🙌🏽🙌🏽🙌🏽🙌🏽🙌🏽 THIS is HUGE!!! I wasn’t sure or even had an idea how long this step would take due to her low muscle tone. Zayden was really delayed so I wasn’t worried but my goal was for her to be able to SIT and EAT Her 1st birthday cake and we are in our 2 month count down and we are so so close!!!! Both our PT and our SPEECH have been nothing but Amazing!! They have pushed Ami and I along is this journey and told us that they would push us as much a we allow! Most of our friends have lots more therapies than we are able because of my job, but Ami is incredibly strong and is soo determined!!! Since birth we have heard all the things she couldn’t or wouldn’t do but We both said... Take a seat and Watch Us...

20

courtneyseitz2013

No more wires or tubes!!!! 9 days after admission and 6 days post open heart surgery our little rockstar is going home! He has some extra hardware now, but he’s just as perfect as before. We had some days where we thought this seemed forever away, but he has proven himself to be quite a warrior. Nobody, not even I, thought this would happen this quickly, but it just goes to show how quickly circumstances can change overnight. We’ve still got a long road of healing ahead of us, but at least we can all be together again! ❤️ #GavinEdwardSeitz #chdwarrior #1in100 #zipperclub #openheartsurgery

12

kathkreates

#gym #swim great session in the gym and an #openwaterswim a few days ago, bit late posting #work has begun to take up too much of my time #feelingthebenefits of getting back to #fitnessafterrehab #fitness #cardiacrehab #healthyheart #healthylifestyle #weightlifting #tredmillworkout #gymselfie #selfie #lovelife #gettingthere #sunsout #scarsout #zipperclub

2

dearcharys

•WHY I DONT WANT YOUR KID TO HUG MINE• While Sesame Place was a great experience overall, something happened that I have not been able to let go of. While running around in an open play area, WP saw another kid (slightly taller, def older maybe 4 or 5). She toddled over to him like a baby deer. He was a little averse to her hugging him, however, he watched her come over and allowed her to hug him for a second before pushing her away. As his mom was “awww”-ing he yelled “but I don’t want a hug!!” I believe in teaching body autonomy and I said that it’s okay to not want a hug and apologized for her hugging him. I explained that she’s a baby and still learning. WP was over it and began to head towards our friends. The little boy stood in her way and when she headed back towards me, he waited until she was behind him, swung his arm back, struck her in the chest, then ran. WP stumbled backwards like wtf was that?!? The mom right away went after him and I just patted WP on the back. I could tell she was confused. She had been putting out her hands to move around him when he hit her. While I was patting her, the boy came back. She was leaning against my legs (I was standing) and he wrapped his arms around her shoulders/neck and hugged her roughly as his mom said, “Say youre sorry and give her a hug.” He was squeezing her and she was pulling at his arms. His mom said “be gentle” as I said “You don’t have to hug her.” He ran off and his mom apologized to me. While I completely appreciate his mom apologizing to us and trying to get her son to say sorry, I don’t want him, or any child, being forced to do something they don’t want to do. He was already upset about hugging her and then he was forced into hugging her again. He was angry and he took it out on her during his apology. Kids have big feelings, they’re just learning how to navigate them all. While the momma bear in me wanted to grab the little jerk by the scruff of his neck for hitting my tiny human, I understood that striking her was his manner of expressing his big emotions because he didn’t have the tools to do otherwise. (Continued in comments)

23

kirstine.openshaw.realtor

All done & sleeping off his sedation ❤ we have to wait for results from tests but it was filled with puss. They believe it may have been from one of his sternal wires from his first open heart surgery as there was one of the wires in that area. They speculated that this could have caused his sepsis infection he is currently fighting in his blood. I don't understand why it's suddenly changed though if that's the case. Especially considering he is on 2 types of antibiotics currently, why would it start growing/continue growing while on those? This is going to delay his 2nd surgery, we won't know by how much or how exactly until the cultures are in #LincolnGeorgeOpenshaw #BabyOpenshaw #chd #1in100 #hrhs #HypoplasticRightHeartSyndrome #heartwarrior #zipperclub #ivfwin #1in100 #congenitalheartdefect  #halfaheartnothalfalife #heartsurgery #openheartsurgery #heartcenter

9

kirstine.openshaw.realtor

3

kirstine.openshaw.realtor

It's something when a baby is happier hungry than when he is being fed, poor guy, can't wait for him to be out of this funk & happy like this when he's eating and doing baby things! #LincolnGeorgeOpenshaw #BabyOpenshaw #chd #1in100 #hrhs #HypoplasticRightHeartSyndrome #heartwarrior #zipperclub #ivfwin #1in100 #congenitalheartdefect  #halfaheartnothalfalife #heartsurgery #openheartsurgery #heartcenter

1

ambyrjill

Bowie and his twin brother Dax turn 2 next month and while Dax was born with out any issues, when I was 25 weeks pregnant, Bowie was diagnosed with Total Anomalous Pulmonary Venous Return (TAPVR), a rare congenital heart defect where the pulmonary veins don’t connect to the left atrium of his heart, instead they drain through his liver and abnormally connect to the right atrium. To repair this, it’s a total of 3 open heart surgeries in which they connect the pulmonary veins to the left atrium to restore normal blood flow. Bowie has undergone 2 open heart surgeries, the first one at a month old and the second one when he was 6 months old. He will have his last one next summer, if everything stays on track. Right now Bowie’s oxygen sats have to be between 75 & 85, they should be normal after his last surgery. Bowie was also born with week lungs and no spleen and gets sick easily. When he sleeps we hook him up to a pulse ox to monitor his O2 and When he gets sick his O2 drops and we have to help him out with putting him on O2. We have a deep suction in which we use to suction what he’s not able to clear and give him around the clock breathing treatments with a nebulizer. Despite the 2 heart surgeries,2 G-tube surgeries,treatments,therapy, doctors visits and hospital stays,Bowie stays happy and loves life. It’s inspiring to see the sweet,happy spirits in children who have had more obstacles in their short lives than most adults do in their entire lives. I wasn’t sure if I wanted to share this first picture, but I cant hold back if I want to relate to other CHD moms. Even though the doctors tell you what to expect when you see him after surgery, your never prepared to see your 1 month old paralyzed with his chest open.I am so grateful for modern medicine and the real hero’s that perform open heart surgeries everyday on such tiny little hearts.With all the chaos that comes with raising 4 kids,I have remind myself to be mindful of how blessed I am and to embrace the journey instead of just go through the motions. #tapvrstrong #chdawareness #chdmom #tapvrbaby #heartbaby #twiniversity #bowiesjourney #chd #zipperclub #tapvr #heartbaby #postsurgery #chdwarrior

13

kirstine.openshaw.realtor

Lincoln is on the schedule for the surgeon to cut open this suspicious lump and drain it for testing today. The surgeons surgery has run over so we are not sure exactly what time he is going to get his procedure done yet. He has been in a really good mood (because he is not eating lol) but I think he is finally having some hunger pains as he is getting a little cranky....so thankful for sugar water (sweeties) to keep him happy until he can have food again later. They're hoping they won't have to intubate him when they sedate him to lance this lump but do have it all on standby just in case. We will have to wait 24 to 48 hrs for the results of what it is. I think it might be even bigger today than yesterday ☹ so grateful he is in a happy mood, we had a friend come visit for a few hours earlier which he loved! He has had music therapy which he was interested in for about 3 minutes then he remembered he was hungry and he is going to do some art therapy soon (where he screams because he gets paint put on his feet & he doesn't like it....reminds him of getting poked I guess 🤣) We really appreciate all the messages, comments, texts, calls, well wishes and check ins, I'm trying to respond to everyone but he is anti phone and 100% attention requiring today lol ❤❤❤ #LincolnGeorgeOpenshaw #BabyOpenshaw #chd #1in100 #hrhs #HypoplasticRightHeartSyndrome #heartwarrior #zipperclub #ivfwin #1in100 #congenitalheartdefect  #halfaheartnothalfalife #heartsurgery #openheartsurgery #heartcenter

0

alisamnelson

As of yesterday Charlie is back in the ICU after his diagnostic cardiac cath. He is intubated and on the ventilator again (hopefully not for too much longer). It breaks my heart and is so so so so sad and hard to see him like this again. When people hear that I am a NICU nurse the most common response I get is “oh that’s so hard, I don’t know how you do that.” My response is usually that one thing that makes it easier (at least for me) is that most of our tiny patients have never been home; the family doesn’t yet have that connection with their infant that they would have with say an older child or older baby who they had really bonded with at home and gotten to know in a healthy normal way, the sick NICU baby and course is often the only relationship they have had with their baby. I always said I could never work as a PICU (pediatric) nurse because seeing the relationship btw the parent and the now sick once healthy child that they knew at home would break my heart. And now I’m that fucking parent on the other side of the bed in the same hospital I work at on the other side of the bed. Seeing him suffering brings up all those feelings again of why him and it’s not fair and so many more I can’t even put into words... I feel terrible for “making” or “letting” (or however you want to look at it) him go through this. My heart literally breaks looking at him like this after having him home and looking so great before this. Last time we were here was so different from this time. I hate it so much. After more than 48 hours of being there I had to force myself to leave, I was starting to go a little batty and after so much time I get way too emotional to deal or even think straight-that place seriously makes you go a little crazy. All those “crazy parents” we see, I totallllly get it now.

42

kirstine.openshaw.realtor

It's a good job he is so stinking cute, because he is not gaining enough weight ☹ 4.13kg (9.10lbs) tonight, to put that in perspective he was 3.6kg (7.937lbs) on admit on 6/14 so in a month he has gained 0.53 of a kg his goal was to gain an ounce a day so he has been here 31 days he should have gained 0.90 of a kg we are at about half that. On a positive note he has had a great day today, been comfortable and in a good mood! They might consider increasing his calories in his formula to see if he tolerates it, part of me would like that so he has a chance at gaining some weight and having more time before his next surgery. Part of me likes that he is finally having some pain free time and I don't want to change a thing, let him have some happy days before he has to undergo another surgery. For right now he has had a lovely day full of smiles, his stats have been consistently good all day so dare I say we have found a happy balance for his concoction of drugs? I've lost track of how many he is on right now, crazy when you look at how tiny & perfect he is ❤ #LincolnGeorgeOpenshaw #BabyOpenshaw #chd #1in100 #hrhs #HypoplasticRightHeartSyndrome #heartwarrior #zipperclub #ivfwin #1in100 #congenitalheartdefect  #halfaheartnothalfalife #heartsurgery #openheartsurgery #heartcenter

1

kellybreefranco

7

kirstine.openshaw.realtor

Look at little man rocking his numbers! It has taken him all day to recover from this morning but he is finally relaxed. Even his nurse this evening remarked that he had seemed really upset, not himself when she came on shift tonight but had settled a few hours in. He's rocking his adorable onesie too ❤ #LincolnGeorgeOpenshaw #BabyOpenshaw #chd #1in100 #hrhs #HypoplasticRightHeartSyndrome #heartwarrior #zipperclub #ivfwin #1in100 #congenitalheartdefect  #halfaheartnothalfalife #heartsurgery #openheartsurgery #heartcenter

3

kirstine.openshaw.realtor

1

kirstine.openshaw.realtor

1

kirstine.openshaw.realtor

Lincoln has had a morning today! Clive came to his room a few minutes before me today and said he was really upset when he got here, screaming, crying, setting all his alarms off and sweating. Just generally worked up. So they got him a diaper change and were settling him down for Clive to hold him when I got here. He was still crying & grunting trying to catch his breath & just seemed really uncomfortable and out of breath. His sats were really low, low 60's when his minimum should be 75. I heard the nurses say he was at 60% which is high for him, he has been comfortable at 45% the past few days (which compared to before his cath that's high as he was not oxygen dependent at home). His nasal canular was really quiet, it normally sounds like a wind tunnel with him being on 8 litres. So as we were trying to settle him & look at everything to make sure he wasnt pinching a line & nothing was poking him to make him so upset, his oxygen machine started beeping. I got the respiratory therapist and he found it was disconnected. He was quick to fix it & check everything. So that was probably a big part of why he had had a rough morning and was so irritable and desatting so badly. Poor guy couldn't breathe & had no oxygen support. This is why it's so hard to relax & leave him. He is still trying to recover, he's still very irritable & upset. He has had a chest x-ray to make sure his lungs are clear & he doesn't have too much fluid on them. He is waiting on a blood transfusion to help his saturations improve. He just had some tylenol to try & help him relax & rest. I think his poor belly was quite full of gas too, we vented him & that seemed to help a little. In the 2 hours it's taken me to write this update (for real!) He has started smiling and seems more comfortable thankfully! His blood is on it's way so that'll hopefully help a lot too! #LincolnGeorgeOpenshaw #BabyOpenshaw #chd #1in100 #hrhs #HypoplasticRightHeartSyndrome #heartwarrior #zipperclub #ivfwin #1in100 #congenitalheartdefect  #halfaheartnothalfalife #heartsurgery #openheartsurgery #heartcenter

2

kirstine.openshaw.realtor

2

kirstine.openshaw.realtor

Someone is going for their Lower Gi study at 1pm today. His little belly still doesn't want to work right so we are going to check nothing else is going on. We had lots of smiles after his enema this morning 😂 these are so going to be a wedding slideshow one day, cheesing smiles 😁😆 I'm so glad he feels a bit better though! The Dr said there is a very very low chance of him having Hirschsprungs Disease but lets face it....he likes the rare things in life! #LincolnGeorgeOpenshaw #BabyOpenshaw #chd #1in100 #hrhs #HypoplasticRightHeartSyndrome #heartwarrior #zipperclub #ivfwin #1in100 #congenitalheartdefect  #halfaheartnothalfalife #heartsurgery #openheartsurgery #heartcenter

2

deidraalysedavis

Little chunk a chunk had his cardiology appt today and he’s now in the 43rd percentile in weight..weighing in at a solid 19 pounds 💪🏾 He went from being in the 6th & 13th percentile a few months back so this is a huge jump! Typically kids with HLHS have fast metabolisms and it’s sometimes hard for them to gain or maintain weight but Brodie’s definitely not missing any meals over here 😁 He’s been doing so great that he was taken off one of his meds today, which knocks us down to 3 instead of the 7 he used to take! Brodie’s x-ray came back looking wonderful and the doctor thinks we can continue keeping him off of any heart medications for now. Overall, very happy with the way he’s progressing! His next surgery will be in about 2 years if everything remains looking this good 🤗 Yay for happy appts! • • • • • #CHD #chdawareness #HLHS #hypoplasticleftheartsyndrome #ltgasingleventricle #heartwarrior #zipperclub #chdawareness #CHLA #myheartwarrior #hearthero #glennprocedure #childhoodunplugged #letthembelittle #igbabies #babiesofinstagram #motherhoodthroughinstagram #cutekidsclub #myhonestmotherhood #littleandbrave #magicofchildhood #ourcandidlife #simplychildren

27

ambyrjill

7

ambyrjill

Bowie is in surgery getting the G tube placed in his stomach. It never gets easy to send your baby into surgery even though he is going to finally be able to get rid of his nose G tube that him and i both hate when Im forced to put in every time he decides to rip it out. Prayers there are no inexpected complications!!! #tapvrbaby #chdmom #bowie #gtubebaby #surgery #choc #longesthour #18monthold #5thsurgery #chdawareness #aspiration #tapvr #chd #chdwarrior #zipperclub #zipperclub #bowiesjourney

5

tracieferra

Awesome #Insanitylive . It’s not work when you love what you do 💪🏻😊 #stronghealthyyou #zipperclub

1

ambyrjill

My heart breaks each time I see him go through this, but he's owning it like a champ. he literally lives with a broken heart, that will always be half a heart, he has one more surgery for his heart at 2, but his 2 chambered strong heart will eventually act normal and everything will be better, and all of this can go away. I am so BLESSED to have him as a son and this journey has even a true learning experience! He's my miracle! He is so sweet and cuddly! #tapvrbaby #tapvrstrong #tapvrawareness #chdbaby #chdwarrior #bowie #backatchoc #blessed #godhearsandanswersourprayers #mamasboy #mamawillwaysbehere #howdidigetsoblessed #chd #zipperclub 💝💝💝

6

ambyrjill

3

ambyrjill

We've been at CHOC since last night. Bowie started running a low fever yesterday and had some congestion, and him only being 1 month post op, i wanted to make sure he didn't have fluid in his lungs or any type of infection, his lungs look clear and his viral panels that have come back have been negative, so hopefully I'm just over paranoid and we will be on our way home soon #bowie #twochamberheartbebe #tapvrbaby #chochospital #trooper #poorbaby #overhospitals #twin #postglenn #heterotaxybaby #secondopenheartsurgery #2ndopenheartsurgery #postop #glennsurgery #tapvrstrong #chdwarrior #tapvrsurvivor #chdawareness #chd #zipperclub #bowiesjourney #chdmom

10

ambyrjill

4