#hlhs

MOST RECENT

Smiles for momma 😍 Journal update is up and ready for reading. It’s a doozy 🙃

Change of plans. We moved it to the big tv! Let’s get this show going! I’m ready to listen to some music. #chdwarrior #hlhs #chd #chdawareness #1in100 #ilovecountrymusic #countrymusiclover #knixcountry #iheartradio

If you need me I’ll be right here all night watching the #iheartfestival! Hoping Mommy and Daddy let me stay up until 10:30 to watch @jasonaldean. #hlhs #chdwarrior #1in100 #knixcountry #countrymusicrocks #countrymusicfan

*LINK IN BIO*
You'd like to help us?? As some of you knows it Charlie is waiting for a new heart, and that implies us to sacrifice everything, our jobs & our normal lifes... So if you're feeling that you can help, please click on the link in my bio and share it and invite your friends and family to do so ❤️❤️
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#unispourcharlie
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#hlhs #hypoplasticleftheartsyndrome #hlhswarrior #heartwarrior #chd #chdawareness #instababy #daddysgirl #hearttransplant #organdonor #hypoplasieducoeurgauche #instagram #instahelp #hospital #picu #intensivecare #halfaheartnothalfalife #myheartkid #2yo #babygirl #crowfunding #help #share #donation #facebook

Have u ever seen a kid smiling after heart surgery. Had to put on some oxygen to give Tyrese a little boost but he's happy watching his cartoons 😘😘😘 #hlhs #haveaheart4tyrese #hypoplasticleftheartsyndrome

Tyrese earlier today fresh out of catherization surgery. Still under anesthesia. Everything went great. #hlhs #hypoplasticleftheartsyndrome #haveaheart4tyrese

I have never seen a kid so happy after surgery. Tyrese needed a little boost with some oxygen but he's chilling and happy watching his cartoons. I believe in God and i believe in miracles. My little guy is blessed!! 😘😘😘 #hlhs #haveaheart4tyrese #hypoplasticleftheartsyndrome #friday

He did it!! He got through his first week of Kindergarten and did great. We have been shadowing Camilo in his classroom this week and it was amazing to see how well Camilo has adapted. We didn’t realize how emotional this week would be for us. We knew we’d be overjoyed, we knew there would be some tears but didn’t realize that we would feel a rush of emotions like we did. We couldn’t help to think back of the day that Camilo got diagnosed with HLHS, half a heart. They tell you the good and they tell you the bad. They tell you things like, he may not make it to birth, he may not survive his first week, he may not make it to his first birthday and he may not make it to Kindergarten. It’s a tough pill to swallow and you NEVER forget those words. It isn’t until you see your kiddo holding his pencil, while sitting in his chair, in a Kindergarten classroom that you really want to just scream with joy, cry tears of happiness, and exhale with a huge breath that he did it!! Such a huge milestone in so many ways. We are so incredibly grateful for this week. We are so incredibly thankful that we were able to see Camilo’s joy this week. His smile, his happiness, that’s truly all that matters! God is great! All Glory to him! We love you sweet boy! #gocamilogo #hlhs #halfaheart #kindergarten

Our God is greater! Harper is responding very well to the antibiotics she has been on for almost three days. She got a PICC line put in today, so that the infected central line could come out. <—that was not an easy feat. From the time they removed the central line, they put in two IVs to last her until the PICC line could be placed. The one in her head went bad 2 hours early and her hand IV was painful but still worked enough to get the sedation she needed for PICC placement. Thank you Jesus for holding her veins together to do what they needed to. Since then she has eaten two 90ml bottles all by mouth, which is awesome! She has no more fever, her head IV was removed and as soon as she proves she will eat well, they will take out her hand IV which is giving her fluids. She has been smiling and giving the nurses all the love they deserve, except the OT ladies lol she’s not a fan. Caring bridge update will be up later tonight when I have a little more time to explain the past two days. God is so good, not because of any certain outcome but because within this time of struggle He has shown up in so many ways, it’s impossible to deny he is the orchestrator 💛

Esses olhinhos tem um poder enorme sobre mim... É amor demais! #vamosmeuguerreiro #coraçãovalente #shce #hlhs #hipoplasia #meiocoracao #omilagrejaestaacontecendo ❤️

Sometimes you wake up ready to have a “normal” day and the biggest thing you pump yourself up for is your workout. Today was not one of those days. This morning I woke up my normally early riser to find his face completely swollen. He was born with half a heart and is our miracle baby so my immediate reaction was fear and panic. After a visit to the ER and meeting with his cardiologists, we determined that it’s not cardiac related (thank you Jesus!) but possibly viral or an allergic reaction. Working out and eating right are important but some days you have to skip the workout and eat #starbucks because you spend all day at the hospital. I’m so thankful it wasn’t more serious. #reallife #momlife #mommystrong #motivation #thankful #blessed #mamassweetboy #hlhs #twinmom

Love me a good sunrise or sunset. The beauty and perfection of Gods design. and yet I question Him.... why?! Today was so hard. As the sun sets on today I’m looking for renewed hope and promise In tomorrow’s sunrise ........
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#momblog #bloggerlife #heartmom #heartblogger #hlhs #hlhsbaby #hlhswarrior #hlhsawareness #sunset #depression #highriskpregnancy #pregnancy #pregnant #pregnancyblog #pregnancyblogger #chd

Do you know what happens after your baby dies? I didn't either, until I lived through it.

Over on my blog you can read Charlie's story, the 142 days he was earth bound, the day he died, what happened immediately afterwards.

Tomorrow I will be publishing his funeral and the weeks after.

Link to the blog in my bio or via www.lifeasmrsjones.com

#charliesstory #charlie #death #babydeath #mybabydied #askmehisname #mystory #CHD #chduk #hlhs #hypoplasticleftheartsyndrome

"...Oturupta boş bos eleştirenlere işine geldiği gibi davrananlara sabahtan akşama kadar namaz kılıpta vicdan ahlak yoksullarına gelsin bu yazı.siradisi annelerin sıradışı çocukların hayatları bunlar.

Lütfen bu yazıyı okumak için birkaç dakinızı ayırın.......sevaptır....
Kanser hastalığından çok bahsediliyor.Medyada heryerde duyuluyor.Ama doğumsal Kalp hastası çocuklardan çok az haber alıyoruz.Ancak öldüklerinde vah vah neler olmuş diye haber yapılıyor.
Oysa ki siz hiç doğduğunda öpmeye bile kıyamadığımız bebeğinizi koklayamadan,dokunamadan 10 saatlik ameliyata verdiniz mi? Vücudu ikiye bölünüp, sogutulup,kalbi sonra yeniden çalıştırıldı mı? Günlerce göğsü yarık yoğun bakımda yattı mı?Siz hiç bebeğinizin kalbini atarken göğsü yarık bir şekilde gördünüz mü???
Tam düzeldi,servise çıkacak derken,yeniden, yeniden açık kalp ameliyatına girdi mi hiç?
Anjiyolar...Açık kalp ameliyatları...İlaçlar...terapiler...
Kaçıncı ameliyatını oldu yavrun? Bizim ki yakında 3. Açık kalp ameliyatını olacak demenin ne demek olduğunu düşündünüz mü hiç?Kalp nakli...Tıp ne durumda?...Bebeğim,çocuğum yaşayacak mı?
O minnacık yavrular kısacık hayatlarında bizlerin dayanamayacağı acıları yaşıyorlar. Hayata tutunup savaşıyorlar!
Bugün hatırlayalım,Hatırlatalım.Etrafımızda hastanelerde,evlerinde savaşan çocukları düşünelim.Belkide onlar için ne yapabiliriz diye düşünelim!!!
Örneğin Satürasyonu sürekli ölçülmesi gerekirken,yokluk yüzünden makinayı alamayan aileleri destekleyelim.Yavrusu İstanbul’da ameliyat olmuş, biz nerede kalacağız diye kara kara düşünen aile gelsin aklımıza...Sahi, bu apandisit ameliyatı değil,1-2 gün değil,aylarca kalmaları gerekebilir İstanbul’da...iş, güç,çoluk çocuk hepsi memlekette. Siz anne baba sokakta,çocuğunuz hastanede,sadece İstanbul’da tedavisi olan hastanede!!! Aslında her gün kendimizi bir çok konuda sorgulamamız lazım; başkaları adına yaptıklarımız da elimizden gelenin en iyisini yapabildik mi? Kendimize uygulamadığımız bir şeyi diğer insanlara yaptık mı? Acaba kaçımız bu soruları kendimize soruyoruz? İlla başımıza mı gelmesi gerekiyor, onları anlayabilmemiz için..."(devami yorumda)

Gonna be a sad day soon when we have to cut this dudes hair but for a good cause. Gotta get little guys head reshaped with a helmet from months of laying on it in the hospital misshaping that noggin.

Today I had my heart cath and overall it went well. My Fontan pressures were 13-14 which was a little higher than last time but is acceptable. I also had a collateral vein that was trying to create more blood flow to the pulmonary artery so they plugged it. Which may or may not been creating my heart rate to be higher because when I came back from my cath my heart rate went back to its normal rate. Otherwise the Stents they put in my heart last time were clear and have good blood flow! They wouldn’t let Ellie up on the stretcher with me because they wanted my sheets to be clean and sterile for when I went back into the operating room plus when I came back I had pressure bandages on. Ellie didn’t really know how to handle not being up on the stretcher with me because usually when we come to the hospital she always is. It was so sad because she would just look at me not understanding why. I wasn’t awake immediately when I came back to the room but my mom said she was panting and pacing back and forth until the brought me back to the room. I the she was a little nervous being away from me for that long because she’s always with me. My cath was only going to be an hour but ended up being 3 because they had to make more than one incision. They had a hard time threading up. I wasn’t awake right when I got back into the room but Ellie was panting and pawing at the stretcher to make sure I was okay. When I finally woke up she put her front paws up and I reached out to get a puppy kiss. She is so amazing 🐾💕🏥 #ServiceDog #HeartCath #CHD #HLHS

Wood Opal is literally petrified wood and it is full of richness and depth. Inventory is limited so get yours before they are gone. 🌳 🌲

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