Today was Seb’s Leavers Assembly. The students gave a funny, emotional and incredibly entertaining performance of their 5 years at Langley First School. Smiles, tears and lots of wonderful memories.
Our little boy is growing up! #CHDwarrior #HeartHero
Today we’d like to introduce you to one of our Heart Heroes, Ian. This morning Ian will undergo his fourth and hopefully last open heart surgery. Good luck Ian!! #hearthero #chd
Wow. Elias was bathed, weighed, fed, burped, changed in to pajamas, cuddled by his parents and now he's cozily asleep. Bottles are made for tomorrow, mommy has pumped and dad is happily snoring. All before 11pm on a school night... is this real life?! #14weeks #hearthero
A note from Jessica: Over the last week I've had the chance to spend time with families, doctors, nurses and administrators at two great pediatric heart centers. When I sit with them I feel the passion bubble up and ooze out of me for this community of families. This passion lives in me, because I have lived this story. I see the passion the love in the eyes of the people across the table from me. I hear about what it's like to not only be in the hospital, but also what it's like to go home and try to live a "normal" life that includes all kinds of emotional, physical and spiritual challenges. I hear moms talk bout the exhaustion of this marathon. I hear providers say they want to do more and to do better when all the while they are tired and burning the candle at both ends.
What I don't think people realize is that when you have a child with a complex heart (especially), though any child with a sick heart, you do live in a constant tension of living in the joy of the moment. Because you know what a gift it is, and waiting for the other shoe to drop. It's an emotional balance beam that you try to walk across and not fall off of.
I don't have all the answers, but I'm convinced more and more that meeting families where they are at, listening and then placing in their path tools and support that they can use is SO important. It's not just important, we must do it. That is what I'm all about, that is what this foundation is all about. Filling in gaps, creating change and support that meets families where they are at. Can we do it all? No. But we can do somethings. And in the mean time we can keep talking about it and invite others to join in. Thank you to all of you who share this passion and feel this fire to come alongside families and make a difference that matters. #loveisall
#changetheworld #inspiration #charity #giveback #heartstrong #athankfulheart #babysweetheart #futurehearts #heart #chd #doitwithyourheart #congenitalHeartDisease #congenitalheartdefect #1in100 #chdwarrior #developmentaldisabilities #nothingdownaboutit #openheartsurgery #heartwarrior #happybaby #myhero #hearthero #heartsurvivor #kindnessmatters #chdaware #theluckyfew
Took a big step in partnering with @american_heart
today, shooting a video to raise awareness for the organization, Heartbeat Strength, and the Central Ohio Heart Walk. I got to share my story in detail, explain why I’m so passionate about inspiring people to live a healthy lifestyle (body, mind, and soul), and got to promote a movement that I truly believe in. I wouldn’t be alive if it weren’t for the research their organization funds. Forever grateful for the work they do and the purpose that motivates them. Definitely more to come!
Check out my story for some behind the scenes details of what was going down! Can’t wait to see how it turns out. You better believe I’ll be sharing it with y’all! ❤️
Special thanks to @kinopicz
for the production of the entire project. Had a freaking blast! 🤙🏼
CENTRAL OHIO HEART WALK
August 25, 2018
Downtown Columbus, Ohio
Only 3 hours in heart clinic today- a new record!🙌🏼 Cash did the best he’s ever done- he stayed still and was a total champ (for the most part, see photo #4
for a little grouchiness during downtime). We get to go another year before the next heart check- and she is getting in touch with his pulmonologist about a possible diaphragm ultrasound study if he gets another lung infx- to look into seeing how much the paralysis is affecting his ability to move things up and out of his chest when he’s ill. Overall it was a great visit and we feel relieved and blessed his little ticker is doing so well❤️❤️❤️❤️ #mylittlelove #hearthero #chd
"Catherine and Brad Clinkscales went in on Catherine’s 30th birthday for her 20-week ultrasound to find out if they were having a boy or a girl. 'I thought finding out the sex of our baby would be the best birthday present ever'..."⠀
Check out Cain's full story at buff.ly/2MmpcgV
Little-bitty, quick personal post and thank you. I really try to avoid personal posts as I know my followers are here for the vintage, but we interrupt the broadcast today for an important message. 😉 I want to say thank you to all of you for browsing, following, and the purchases that happen here, as they go straight to supporting the past and on-going care for #myheartwarriorNorah
. She just had her one year Heartiversary on July 10th 🎉🎉❤🎉🎉 and that was, and always will be, a day worth celebrating -- and a day that calls for lots and lots of cake! 🍰🍰
Finn is this week's Heart Walk Hero. Finn turned 1 in June and is his family's little miracle and the reason they walk in the First Coast Heart Walk! Finn went through open heart surgery at 11 days old due to a congenital heart defect. While still in utero, Finn was diagnosed with d- TGA (dextro-Transposition of the Great Arteries) after an initial abnormal nuchal fold scan and a consequential fetal echocardiogram. His special heart was continually monitored throughout the rest of the pregnancy. Finn spent a little under two weeks in the NICU before his arterial switch operation. It was 2 weeks more before his mom and dad could take him home. Finn is a strong little boy and a trooper each time he goes to his cardiology appointments. Think a small donation can’t make a difference? Think again. Your dollars save babies’ lives through groundbreaking pediatric heart research. Get started here: www.firstcoastheartwalk.org or click the link in our bio to register #iHeartScience #FinnisWhy
#CHD #babiesofinsta #ResearchisWhy #research #pediatrics #CHDsurvivor #survivor #baies #baby #hearthealth #heartsurvivor #hearthero #firstcoastheartwalk #jaxheartwalk #jaxfitness #jaxfit #jacksonville #jaxlife #jaxmoms #jaxmomsblog
Feliz de charro y a caballo! 🐎 .
Life is so much better when you are laughing
Un poco borrosa la foto 🤷🏻♀️
Cabe agregar que ya casi no me queda mi traje de charro, se me sale la panza 🙊
**Update!!** Yesterday we saw Cardiology and everything looks good. We are weaning his sildentafil ( pulmonary hypertension medicine) and increasing his enalopril (blood pressure medicine) just to balance it all out as we make these changes. He officially HATES his heart echocardiograms (ultrasound of heart) now. He screamed and fought the entire time. Today we saw Developmental Pediatrics. Looks like his problem solving skills are at a 15 month old level, his communication skills are at an 11 month old, and he had poor muscle tone, and pain and tightness in his hips. They swabbed his cheeks and sent it off for genetic testing. They also referred him to rehab medicine , they evaluate kids with muscle tone issues and come up with either exercises and or supportive equipment and braces that will help him. They mentioned a hair trainer again, which is a walker that kids use to assist them in walking. Looks like he is 7% in height and 58% in weight.
#CHD #tubie #HeartWarrior #HeartBaby #CHDSucks #HeartHero
Last year Project Heart funded the first phase of a vital project in the world of CHD. This year, for our birthday, we're trying to fund the second phase of that project - animal trials! This stent is going to have a remarkable impact on the lives with CHD warriors born with single ventricle defects. Help us reach our goal of $25k by giving today!⠀
This is the journey of a heart family. We are honored to know, love and support Miss Penny and her family. This family is so courageous and full of love. They inspire us!
“Today is 10 continuous months that our sweet girl, Penny has been in the hospital. This admission (5 months at Boston Children’s, & 5 months at Colorado Children’s) has had more ups & downs than we could have possibly foreseen, with some days so heart wrenching, that I didn’t know if maybe they would end up being our little warrior’s last. But this little firecracker is a true miracle; I am forever humbled to call myself her mother.
When Jeff & I left for Boston Children’s last September with Penny & the boys, we honestly didn’t know how we were going to afford what we knew we had to do. But I don’t think we are unique in deciding that we had to do whatever we thought was best for our child, even if it meant financial ruin for our family.
As we continued on with this new chapter of our lives, which was filled with uncertainty, family & friends stepped forward to help. People gave to us financially, as well as through prayers, good thoughts, & donating their time. My in laws moved into our house (from Eastern South Dakota) to watch our boys, & help in any way they could. Friends, & family have taken time away from their own busy lives, to visit, show support, prepare meals, & take care of our home in our absence. Entire churches of people we have never met have prayed for our daughter’s health. Friends of friends have started fundraisers in Penny’s honor, & others have dropped to one knee, & prayed continuously on particularly grim days. Old friends from high school have reached out to help, & one even invited our family to her home near Boston for Christmas Eve. We have received care packages, cards, checks, & emails from people filled with encouraging words. Your words have personally helped me through some of the darkest hours of my life! Fundraisers run by kind hearted people, whose foundations have chosen our family to support, continue to lend a helping hand. And we continue to make new supporting friends along the way...(Continued in comments)
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.
Thank you so much, everybody for all of your prayers and well wishes!
Khalil’s surgery went great! .
They replaced his pulmonary valve and patched up a few small holes that they found. .
He took a while to come off of the ventilator because he was so sleepy, but he felt a lot better when that was out.
He rested most of the night. He has a lot of pain and is nauseous, but hopefully it will stay under control today and he can start to wake up and try to eat/drink a little. .
Thank you all again! I appreciate every one of you and your messages! ❤️❤️❤️❤️.
#heartmom #hearthero #chdsurvivor #chdwarrior #tofwarrior #tetralogyoffallot #chdaware #chdawareness
Thursday 12th July marked 1 year to the day that our #HeartHero
Sam had his first open heart surgery, look at him now! ❤️ In the words of Sam’s Mam, Emma on his incredible journey... “After arriving at the Freeman Hospital in June 2017, Sam was diagnosed with dilated cardiomyopathy.
He was fitted with an LVAD in July that year and put on the transplant list.
Sam received his gift of life in October and returned home in time to watch the fireworks with his siblings.
He has needed a number of blood transfusions post transplant; the most recent ended up being an overnight stay and he went straight to school the following morning to compete in his school's sports day.
Today marks 1 year to the day that Sam had his first open heart surgery to fit his VAD. Now he has had his new heart for 9 months and today he completed a 1 mile run around a nearby park with other local schools. He hopes to take part in the Great North Run when he is older.” We love to hear stories of our amazing #HeartHeroes
and how they’re getting on, thank you so much for sharing this with us Emma!
#GoSam #HeartTransplant #HeartHero
This isn’t the best quality photo but it is life and our reality at the moment.. my mom captured this moment at home on Friday evening, the first time I was reunited with EDee and Sammy since we went to the hospital with Charlie on Monday evening. I can’t tell you how sad I was to be without them all those days and how good it felt to be with them again. It literally feels like my heart is in half because no matter where I am (at home with the big kids and away from Charlie or at the hospital with him and away from E & S) I feel sad and guilty and stressed that I’m not in the other place. I know that they are well taken care of but it still hurts to not see them for so many days, to feel like I am missing in their lives and to have our family separated again after being together for three weeks at home. Tomorrow Charlie will have a cardiac catheterization to take a closer look at his heart and vessels in order to figure out what is causing the dips in his oxygen levels. It was something we were really hoping to avoid but at this point we are desperate for answers, a resolution, and just want to get him back home again so we are relieved that this will hopefully be the next step in accomplishing those things. I have been trying to keep my story updated with the day to day details and more info and will continue to do so as much as possible. ❤️#motherhoodunplugged #candidchildhood
A Podcast About Connecting! LINK IN THE BIO 🔥
AN INNOCENT TRIGGER ////////// I received a phone call from the cardiology social worker this past Thursday to go over some California surgery details (ie. medical transfer logistics that are currently being arranged), and she proceeded to casually ask me how I was holding up and managing with all this stress. I initially vented a few frustrations and some points of anger, bitterness + resentment that I’ve recently been dealing with over the past few months.... but over the years I have learned to build certain boundaries to ensure I don’t spread myself too thin emotionally – so I confidently stated that for the most part, Nick and I are doing fine and handling the building stress as best we can. •
However, when the call ended and I got back into my car to drive home (as I was out running a few errands), I just completely lost it on Deerfoot (a major road that runs through Calgary). While we’re so thrilled about this upcoming surgery and it’s potential results, it also comes with so many risks and we’re understandably scared too.
Plus I’m just utterly exhausted at this point. Like, we’ve already endured one heck of a “heart journey” already.... and I feel like we’re having to do it all over again and are starting back at square 1 (except we know what hospital life is truly like....added a sibling to the mix and are dealing with a whole new hospital that’s extremely far from home). I guess that’s where my current anger, bitterness + resentment is stemming from lately (with a GOOD dose of anticipatory grief mixed right in there), and it’s been just mentally taxing to say the least. Not to mention the amount of advocating that’s been done for this whole endeavour. Our social worker, along with our trach + cardiac team have all made comments over the past several months about how much work, research and organizing I’ve done to make this happen and recognize how overwhelming it can all be for a single person.
[CONTINUED BELOW IN THE COMMENTS]
Last night we hosted An Evening With Tom Zuba @bostonchildrens.
Tom is the author of Permission to Mourn: A New Way To Do Grief. He shared his experience of living with the deaths of his wife and two of his three children from three separate medical instances. We are so thankful to the families and medical staff who joined us. Check out Tom’s book on Amazon and follow him on Facebook. Tom’s second book comes out this month.
Can I get an amen for waterproof casts? 🙌 Yay!! Iver got his switched out today and we're all so excited about it! So excited for him to splash to his hearts desire! 💦
Speaking of his heart, he's always been blessed with scars you can barely even see. With his next open heart surgery coming up soon, I can't help but wonder if the next scar will be really noticeable. My hope is that his self confidence is always as high as it is now (oh how wonderful it would be if all of us had the self confidence of a 2yo!) and he would rock his scars with pride! 💝
#ivernathanielw #zipperclubmember #brokenwrist