#hypoplasticleftheartsyndrome

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I can't get enough of her!!! I'm so obsessed with my baby. She's such a good little nugget ❤️😍😍😍 #superzola 🦄 #hlhs #chdwarrior #hypoplasticleftheartsyndrome

My heart aches seeing all these families spending Christmas together. This year hasn't felt like Christmas with Vivian still in the hospital. We are longing for the day we can bring her home and play with the two of them together. Until that day comes we will pray for a miracle and stand next to her bedside while she sleeps and sugar plums dance in her head 🎄❤ #hypoplasticleftheartsyndrome #halfaheart #chdawareness #thekliewertwins

Sweet baby Isaac passed away this morning around 8:20 a.m. We are heartbroken, but grateful that his life was extended as long as it was. Every new day with him was a miracle. Though he was only here for 24 days, he was loved and doted on every moment. Kimberly and Kenny are hurting so much, but are grateful for your love and support. They have felt of your prayers and encouragement. We will always cherish the sacred and beautiful time we shared on this earth with our little angel.
#angelbaby #hypoplasticleftheartsyndrome #hlhs #infantloss

@andrewostler and I felt it was time to share the latest news about our baby girl. .
While visiting Utah, I had my 20 week ultrasound, where technicians and doctors look at your baby in great detail. Everly Jo Ostler was diagnosed with 2 separate heart defects. The first one is called an AV Canal and the second is called Hypoplastic Left Heart Syndrome. Although we don't know very much (yet), we know that she will need several surgeries when she is born and most likely continue to have them throughout different times in her life. From what we have heard, there is no cure for the left heart syndrome. We will meet with several specialist at Primary Children's Hospital at the end of this month. At that point Urban and I will be moving home to Utah since I will have frequent appointments with the specialist until I deliver her in November.
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When we heard the news, our entire world flipped upside down. We are obviously terrified and devastated but we know that through faith we will get through this, whatever the outcome may be. We are praying for miracles, for the doctors that are taking care of her, and for modern medicine to help give Everly a happy healthy life. I find joy in knowing that she is healthy while in my belly and when I cry and she kicks me, those are love taps from her telling me 'everything will be okay'. I find joy in knowing that I am her mother forever and that no matter the outcome, I am blessed to be able to spend eternity with her. .
If anyone has any experience with either of these defects and wouldn't mind sharing with us what you know, please text or send a pm. We are already overwhelmed with love and support from those who already know what's going on. Please remember to keep Everly in your prayers.💘 #PrayersForEverlyJo #hlhs #hypoplasticleftheartsyndrome #avcanal

Missing you everyday, sweet girl ❤️

Last night, I read about another baby that was diagnosed with Hypoplastic Left Heart Syndrome. It made me so emotional. It's so unfair that these babies have to go through so much. Every time I think about everything Zola has already gone through, plus everything she will go through in the future makes me ache. Today, as I'm snuggling my baby, I'm just so grateful for her and the light she is in our life. Zola is doing great and recovering well from her allergic reaction. Thank you for all the love and prayers!! ❤️❤️❤️ #superzola #hypoplasticleftheartsyndrome

⚠️ warning... emotional post..
Today l played "The heart of Life" by John Mayer. This has been the soundtrack to my life. This song has so much more meaning watching Vivian's heart beat in her chest. I wasn't meant to be a mom to a human I had a medically necessary hysterectomy 7 years ago. I am meant to be a mom to Kopi. I wouldn't change a thing. I am meant to be a sister to the strongest mom I know. My sister. I was meant to be a daughter to the most amazing parents. I was meant to be a aunt. I was meant to be a niece and a cousin. I was meant to be a friend. I was meant to be with Travis. People often say, "I don't know how you do it!" or "I can't imagine how hard this is" or "it breaks my heart. My answer.. we just do it.. I can't imagine how hard this is for other families that have had it worse.. yes, it breaks my heart. I don't know the outcome with Vivian. I don't understand the reason or why this happens. I wouldn't wish CHD on anyone BUT when this girl opens her eyes my heart smiles. "Pain throws your heart to the ground
Love turns the whole thing around
No, it won't all go the way, it should
But I know the heart of life is good."
#hlhs#thekliewertwins#hypoplasticleftheartsyndrome#chd#chdawareness

Viv got extubated on Friday and was off of all oxygen support. Then Monday she had a respiratory code and needed to be reintubated. They want to try extubating her in a few days, but they need to have ENT look at her so they can figure out what was causing her to not breathe. Please be praying that it's just some swelling and not anything blocking her airway and for an easy extubation. ❤️ #thekliewertwins #twingirls #twinmom #hypoplasticleftheartsyndrome

MOST RECENT

It has been exactly three years since Gianna came home for the very first time. It was the happiest and most terrifying experience of my life. She spent almost one full year at home, which was the happiest time of my life. I am so blessed and grateful for the memories we were able to create with her at home. She spent the first 288 days of her life in the Cardiac Intensive Care Unit at CHOA's Egleston Hospital. I am so thankful for all the nurses, respiratory therapists, doctors and so many others who fought for her to come home. I am so thankful that they taught my family and me how to care for Gianna, so we could have time with her at home. Taking Gianna home for the first time is a memory I will never forget or take for granted. It will always have a special place in my heart. #angelbaby #cutestangelever #giannajune #choa #cicu #chd #picsfromheaven #hypoplasticleftheartsyndrome

Ohhh Plz Anything to Take this shitty sickness away. The body aches are horrendous 😷😷😷
THRIVE U'VE DONE IT AGAIN!!!
REST WILL PUT ME TO SLEEP!!!
NIGH NIGHT PEEPS I MUST GO SLEEP DIS CRAP OFF 💯💯💯
HAVE A TERRIFIC TUESDAY PEEPS
😘😘😘
#selfie #weekday #hot #sleepfollow #holiday #nap #azulik #life #treehouse #heaven #relax #vacation #beautiful #amazing #tulum #paradise #sun #mexico #repost #sleepi #hlhs #chdwarrior #hypoplasticleftheartsyndrome #photooftheday #mommydaughter #jj #twins #lashes #eyes #natrualhair

💥💥💥BIG UPDATE!! 💥💥💥
I got a phone call today that LIAM IS READY TO GO HOME!!!! He is down to HALF A LITER of oxygen! His goal was one liter!!! He proved to us that he can get his sats up. He knew surgery was in the back of these docs heads and Liam said "nope!". He ranges from 70's-80's now! Which is his goal 🤗 they are still trying to wean some of his medications down. They are weaning his methadone every Monday and Thursday. And he seems to be tolerating it well. They stopped the oxycodone and replaced it with Valium and just upped his dosage on that and he seems very happy with how much he is getting. He is no longer in pain which is amazing considering he's been in constant pain for months now. We practiced using the binky yesterday. Before surgery; Liam LOVED his bink. He became so attached to it. He doesn't know how to suck but he is seems happy with it sitting in his mouth 😂 he is also getting better with focusing and recognizing our voices. He has a long way to go developmentally but once he is home I guarantee he will catch back up! The doc told me Liam has maybe 2-3 weeks left in the hospital and THEN WE ARE OUTTA THERE!!!! I cannot believe it. I have waited for this moment for such a long time. Time to start getting our home ready for him again ❤️🏡 #LiamStrong #WeAreComingHome #chdmom #chdsurvivor #chdwarrior #chdawareness #hypoplasticleftheartsyndrome #hlhsawareness #hlhssurvivor #hlhswarrior #1in100 #halfaheart #heartwarrior #heartbaby #heartmom #heartparents

I rode in that wagon and played in that garden growing up! I was going to write something meaningful and deep, but the pictures do that for me, I think. #hypoplasticleftheartsyndrome #heartwarrior #hlhs #averymae #grammyandgramps #wagonridesinthegarden

I can't get enough of her!!! I'm so obsessed with my baby. She's such a good little nugget ❤️😍😍😍 #superzola 🦄 #hlhs #chdwarrior #hypoplasticleftheartsyndrome

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Emma loves our Cream Chunky baby blanket! 💕

#معلومة#كيف أعطي طفلي الدواء عن طريق الفم؟
يأتي العديد من الأدوية التي تعطى عن طريق الفم بنكهات لطيفة، ويتناولها بعض الأطفال من دون مشاكل. مع ذلك، يشعل البعض الآخر حرباً عليها!
كوني عملية جداً عند إعطاء طفلك الدواء عبر الفم، الأمر الذي قد يكون مؤلماً لكلاكما. لكن قد يصنع المعجزات احتضان طفلك وطمأنته عند إعطائه الدواء. إليك ما يجب القيام به:
اغسلي يديك قبل أن تبدئي.
رجّي زجاجة الدواء قبل فتحها.
قيسي الكمية الصحيحة للدواء باستخدام حقنة لإعطاء الدواء عن طريق الفم. لا تستخدمي ملعقة من المطبخ لقياس الدواء لأنها قد تعطيك الجرعة الخاطئة.
احملي طفلك بشكل عمودي على ثنية ذراعك. برفق ضعي طرف الحقنة التي تستخدميها لإعطاء الدواء عن طريق الفم داخل فمه.
ركزي على المنطقة ما بين لثة طفلك والجهة الداخلية من خده لأن هذه الوضعية تمنعه من تقيؤ الدواء أو بصقه.
اضغطي مكبس الحقنة شيئاً فشيئاً ليضخ كميات صغيرة من الدواء عند جانب فم طفلك.
اسمحي لطفلك بالابتلاع قبل الاستمرار في دفع المكبس.
أعطي طفلك حليبه (لبنه) المعتاد أو القليل من الماء بعد ذلك لإنزال الدواء.
عند الانتهاء، اغسلي الحقنة بالماء الدافئ والصابون 💕💕👶🏻 #طرق_مفيدة#علاج_الأطفال #مواليد #أطفال#مميز #مرضى_القلب #ضمور_البطين_الايسر #ضمور_القلب #متلازمة_ضمور_البطين_الأيسر #hlhs #heart #hlhsheartwarrior #hypoplasticftheartsyndrome #hypoplasticleftheartsyndrome

#من_الإرشيف رانيا في بعد #عملية#النورود بعد الجراحة يخلو الصدر مفتوح عشان لاسمح الله حدثت مضاعفات او احتاج الطفل لتدخل جراحي مايرجعون يفتحون الصدر وبعد ماتعدي المرحلة الحرجة يقفلون الجرح 💔 الحمدلله دائماً وأبداً 🌺💕👶🏻 #hlhs #hlhsheartwarrior #hypoplasticleftheartsyndrome #hypoplasticftheartsyndrome #heart #norod #مواليد #مرضى_القلب #متلازمة_ضمور_البطين_الأيسر #ضمور_القلب #ضمور_البطين_الايسر

Anyone else a visual learner? When it comes to learning #congenitalheartdefect Cincinnati Children's has a very cool free app to help visualize the defects. It also explains the defects, the surgeries to fix it, and what the repairs look like once complete! This image is of #hypoplasticleftheartsyndrome ... the app is called Heartpedia if anyone's interested 🙋🏼
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#nicu #neonatology #chd #chdawareness #physicianassistant #pa #paeducation #paschool #pastudent #medstudent #medschool #medicaleducation #meded #physician #neonatologist #cardiology #pediatriccardiology #pediatrician #residency

أب فقد ابنته الوحيده و تم التبرع بقلبها لشخص آخر
هو الان امام هذا الشخص الذي يحمل قلب ابنته انظر كيف شعوره و هو يسمع قلب ابنته ينبض في جسد آخر رغم موتها
سبحان الله
#hlhs #hlhsheartwarrior #hypoplasticleftheartsyndrome #hypoplasticftheartsyndrome #heart #متلازمة_ضمور_البطين_الأيسر #ضمور_القلب #ضمور_البطين_الايسر #فيديو #مؤثر#تبرع_لتنقذ_حياة #تبرع_بالأعضاء #زراعة_القلب #تشوهات_الجنين#مواليد#حوامل

@Regrann from @benola_cpi - The scar on her chest/stomach tells just a little of what this angel has been through in short life but her smile is that of pure joy at being alive. God bless you and your parents Cortney!🙏🏾🙌🏾😁
@Regrann from @cortneyeats - I can't get enough of her!!! I'm so obsessed with my baby. She's such a good little nugget ❤️😍😍😍 #superzola 🦄 #hlhs #chdwarrior #hypoplasticleftheartsyndrome - #specialchild #specialones #specialneeds #specialneedsmom #specialneedsparenting #cute #beautiful #awesome #awesomegod #godisgood #blessher #differentisbeautiful - #regrann

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