#heartiversary

[teenmomcentral]

Happy 1 Year Heartiversary to my little warrior!💝🎉

I can’t believe it’s been 1 year since the craziest time of our lives. It all seems like a blur now, I remember last Christmas I was so scared I was going to not have my baby and just grateful that she got to experience her first. I was a wreck to say the least. This day has me very emotional because she really fought her way to be here, it was a hell of a fight too. I love you more than life my baby and I want you to always know from these photos how strong you are🙏🏻 Maya has not be in the hospital once since having this surgery you can really see the difference and how much it’s helped her from then to now.

And to the parents going through this or going to go through this, there’s a light at the end of the tunnel. They are resilient! They can get through the worst of times and be the happiest of kids! Maya is the happiest little baby with the biggest smile on her face all the time, she still terrorizes her sisters, she’s feisty and does everything any other child would! Hopefully for other parents of CHD babies you can take something away from us and give you some hope in whatever hard situations you’re in. I know I needed to see the positive with other stories and I found some in some other mothers posts of their children thriving. Maya is now one of those thriving children 🤍

[nursehanna]

Today is my six year heartiversary. Been in normal sinus 99% of the time over the last two years, thank goodness. Glad the pacemaker is there for the 1% of the time. Here’s to many more years! (at Missouri Baptist Medical Center) https://www.instagram.com/p/CAiB4zUjq22/?igshid=ywdi1y2wig14

[ihearticie]

I’m reflective today. I don’t want to make Icie’s Heartiversery about me and my anxiety. On this day last year Icie was strong. She showed us her willingness to fight and her strength to do so. I’m sure As the years go by she will hold more of the reins over this day than me. But for now it really is just a traumatizing day for me. All day long I have been saying to myself “this time last year” and whatever coincides with the time comes to mind. It was horrible. This time last year my baby’s heart stopped its natural god given beat. I hate that I’m so overwhelmed by today that I can’t see the true beauty in it. I do know with out her surgery she would fail to thrive. Her surgeon was amazing. She healed with really no complications besides a blood clot. It was only 8 days where some babies spend months in recovery. I should be grateful and just shut my mouth, but the anxiety overrides my ability to do so. I’m a very emotional person. I think a lot and love hard. Thinking about my emotions a year ago is all to easy for me. But within my storm of anxiety ridden memories, Icie is there fighting. She was steadily healing and constantly fighting. We were there for her but really her strength is what carried Carl and me through. She didn’t have a choice, if she did I’m sure she would say “uh ya I’m good on all that” but she didn’t. So she fought. She fought against odds and she won. I’ve kissed her and told her I love her even more than I normally do in a day. I’ve also hugged her extra long.

Happy Heartiversery Icie. A year ago today you had to fight with everything in you and you emerged victorious. You are strong. You are thriving. You are beautiful with your zipper scar. You are everything to me, to us. We love you sweet wormy. This day is yours.

[rivertownridersrc]

We were able to ride out and spend some time with Brady for his Heartiversary today!! Nothing quite like putting a big smile on a little kids face. https://www.instagram.com/p/CBbzzNkhagA/?igshid=la7wo3a4zt9f

[spiritbath]

Every year Jim Bolton celebrates his “Heartiversary.” Read this to find out why... https://spiritbath.com/heartiversary/ https://www.instagram.com/p/B7qkKXsHqI2/?igshid=n1nqrny0a6jx

[mmhope]

Happy 1st "Heartiversary" Mark . For much more years, beats and bike ride miles 🚴🏻#DonateLife #DonaVida #HeartTransplant #LatePost #TransplantFamily #Grateful #DonateLifeAmbassadors

[iowamedia]

Nevada Toddler Celebrates ‘Heart-iversary’

NEVADA, Iowa — A family in Nevada is marking a special milestone.  This weekend, the Bartleson’s will celebrate their 20-month old daughter’s “Heartiversary”.  It’s the one year anniversary of her second chance at life.

“We don’t take any single day for granted,” said Kelli Bartleson.

The little things in life like eating at the kitchen table and playing in the backyard mean the most to her…

[treatmentmedicine-blog]

New Post has been published on Alliance of good doctors. Alliance of good knowledge.

New Post has been published on http://bit.ly/2yLdPeE

Mom honors son’s medical journey with a three-year “heartiversary” post babble cataract surgery procedure in india

[raphaelasher]

Heartiversary

Today is Raphael’s “heartiversary,” the anniversary of his first open heart surgery. Over the last few days I’ve been remembering the events of this time last year. On the 18th, Lyndsay’s water broke and we went to the hospital six weeks early. 12 hours later, Raphael was born. And then time gets muddled. His oxygen level was low so they took him to the NICU and we were taken to a room. A cardiologist would be coming by soon. Tired as I was, I didn’t understand what a cardiologist had to do with low oxygen. We took a nap. The nurse came in and turned the light on. She said the cardiologist would like to speak to us. He had a piece of paper and he sketched a “normal” heart next to a heart with truncus arteriosus. Our son would need surgery. And later he would need more surgeries. CHOA in Atlanta would be notified. A team would come to transport our son the next morning. We could meet him there. We tried to sleep. We watched the transport team put Raphael into a portable neonatal intensive care unit. We drove home to collect some clothes and food. We drove to Atlanta.

The next two days seemed like weeks. We spent an uncomfortable night in the hospital at CHOA. They would try to let our son grow a bit. It might take weeks. We tried to ask questions. We tried to contact family and friends. We tried to spend as much time with Raphael as we could. We met other families going through similar circumstances. We met families whose circumstances were much worse. At some point the cardiologist told us that the surgery might be sooner; maybe later in the week. We slept at my sister’s house. We went back to the hospital. They said the surgery would be the next day.

A year ago today we waited for a phone call every hour or so. The surgery team would update us as the surgery progressed. The double aortic arch was repaired. The ventricular septal defect was patched. His single aortic trunk was repaired and was now the major artery that carried blood to his body, and a 9mm conduit with a valve was attached as his new pulmonary artery. The surgery team lead by Dr. Bahaaldin Alsoufi was amazing and Raphael survived.

Over the next few weeks Raphael underwent a minor surgery to close his chest and struggled with a partially collapsed lung before he was finally weaned off a number of medications. We were transferred to the Step-Down unit where we would learn more about administering his medications and inserting and removing his feeding tube. We went home, after some breathing issues returned to Step-Down for a few more days, then we were finally released. With the generous help of Raphael’s Savta, Lyndsay and I managed to get some sleep over the next couple of months, and with the generous financial support of many, we were able to stay home for much of the spring and summer to care for Raphael. We weaned him off of 7 of the 8 medications he was on (he’ll always be on aspirin), took him off the feeding tube in late spring, and we moved him from high calorie to normal baby food in the early fall. All this time, the visits to doctor’s and specialists became fewer. From 3-4 visits a week in the early spring, to 2-3 a month now.

About a week ago we saw his cardiologist and his echocardiogram showed that as his heart has grown, his replaced conduit has narrowed, allowing his heart to function at about 60%. On January 9th, at the weekly heart catheter meeting at CHOA, the surgery and cardiology team will discuss what the next step in his care will be.

Meanwhile…

He’s turning into an awesome little human. He’s cruising along the couch and will be walking any day now. He enjoys throwing spaghetti across the room and taking his toys apart and putting them back together again. And his favorite thing is our daily walk around the apartment complex lake where he alternatively shouts “tree” and “truck” (clearly, we live in the South). We still don’t take him out much as it’s dangerous for him to be around sick people, but we all went to the aquarium for his birthday and while he enjoyed the fish, he really loved all the lights that were set up for the holidays. And once a week we take him to a music class where he occasionally leads all the other babies on excursions to explore the walls of the music room.

Still meanwhile…

We try to say that he’s basically a normal kid, but the caveat is there for a reason. Between not knowing when his next surgery or heart catheter will be, the complications that could arise during those procedures and the numerous complications that could arise at any point, it’s a wonder that Lyndsay and I have even a bit of sanity left. Add to that both of us maintaining our careers without the aid of day care (but with the aid of a part-time nanny and weekly help from Raphael’s nanna), and we often feel like we’re teetering on the edge. But, like most families with a CCHD kiddo, we’re doing our best to make it. Raphael spends most of his time smiling and despite being 6-weeks early and spending his first month confined to a hospital bed, he’s developmentally right where he should be for a 1-year old. And as a family, we still manage to be kind and loving to each other, to recognize when someone needs to eat or take a nap (clearly not just talking about Raphael here), and to provide the care and comfort that we all need. It’s been a tough year, but we’re growing stronger each day. Thank you for reading and for your continued support. And for those of you who haven’t met Raphael in person yet, he’s excited to sit down and share a meal with you, provided you bring a tarp.

[ihearticie]

I keep forgetting to share this beautiful necklace Icie’s Aunt B got her. Aunt B gave this to her when she came to visit in June. It’s the sweetest most delicate diamond heart necklace and it will look so beautiful on Icie once she is old enough to wear it. I fear she would rip it right off and break it if I gave it to her now, but she is so lucky to have such a beautiful piece waiting for her. What a better time to share it than on her 2 year Heartiversary ❤️

[ihearticie]

Thursday, August 22, 2019

2 Year Heartiversary

❤️Happy Heartiversary Icie! 2 years ago today you had surgery to repair your special heart. I wasn’t able to look further than the minutes ahead on that day, so I couldn’t imagine what you would be doing two years from then. Now, you would rather put your cape on a stool and stand on it than wear it yourself. You say you are “dressing the stool up” and that is fine with me. I love you so much. You will always be a source of strength for me and it all began on this day in 2017 when you fought one of the hardest battles imaginable at only 4 months old. I love you sugaiee, Happy Heartiversary ❤️ #Heartiversary #chd #tof #dorv #persistantleftsuperiorvenacava #bicuspidaorticvalve #1in100 #2years #heartherocape #loml #ihearticie