Many of the parents we work with tell us that they have, at times, struggled with their mental health. Our new free webinar on looking after your mental health as a heart parent will include practical tips, advice and discussion with mental health experts. We aim to give you a toolkit for looking after your mental health, to help you throughout your journey as a heart parent. ❤️ Everyone is welcome to join us on Wednesday 22nd May at 8pm. Sign up now via the link in our bio. Our new family support webinar series is generously funded by @globals_make_some_noise. #mentalhealthawarenessweek2024 #mentalhealth #heartparents #heartmum #heartdad #chd #congenitalheartdefects
📢Save the date! 📢 We are extending our support services for heart parents with a new series of webinars. These free events will include useful information and resources, as well as presentations from expert panelists and plenty of discussion. Please save the date for our first webinar, Looking After Your Mental Health on Wednesday 22nd May at 8pm (tickets will be available soon). Our panelists will be Abbie Mitchell, Peer Support Facilitator and heart mum, and Kate Wigham, Mental Wellbeing Manager at the University of Loughborough. We hope to see you there. In the meantime, if you have any questions about looking after your mental health for our panelists, please write them in the comments or DM us. With thanks to @globals_make_some_noise for very generously funding our Heart to Heart support work. 💖 #mentalhealthawarenessweek2024 #hearttoheart #mentalhealth #heartmum #heartdad #heartparents
3km kid free run/walk this arvo to ease into the weekend 🏃♀️ #mumswhorun #run #walk #excercise #kidfree #3km #neighbourhoodruns #healthyheart #heartmum #hearthealth
Alison Fenlon has several heart issues, including DCM, but her experience points towards the importance of quality care and a healthcare team you trust. She said "My treatment has been fabulous – I can't fault it" and "Everyone has been wonderful all the way along from when they first realised there was an issue with my heart. I can't speak highly enough of them." Read more using the link in our bio to click "Alison's 'Fabulous' Treatment" or visit: expressandstar.com/news/health/2024/05/06/my-heart-was-dead-in-17-places--a-hospital-rehabilitation-programme-has-helped-me-recover/ 🏷 #dilatedcardiomyopathy #dcm #heartfailure #cardiomyopathy #heartdisease #cradiology #cardiologist #heartwarrior #heartmum #hearthealth
Two laps of the Gooseponds to get my 5kms up today 🏃♀️ #gooseponds #5kms #walking #morningwalk #letsgo #heartmum #healthyheart
Have A H’art Framed Limited Print £9.99 https://shopheartheroes.uk/products/have-a-hart-framed-limited-print Created by a Heart Mum- Add a touch of artistic inspiration to your space with our “Have A H’art” Framed Limited Print. Each uniquely numbered. #HeartArt #LimitedPrint #HeartMum #WallArt #UniquePrint
Sending so much love to all bereaved mothers - today and everyday. 💕💕 We want you to know that you are not alone. There is a community here to support you. 🤗 We run virtual bereavement support sessions and have a private Facebook group for bereaved heart parents. Please DM us for details of how you can join. On our website, bereaved heart parents tell us their thoughts and stories. Plus, we have provided a list of support services (link in bio, go to 'Bereavement'). Please don't hesitate to get in contact - we are here to support you. ❤ #bereavedmothersday #internationalbereavedmothersday #heartmum #mother #foreverinourhearts #gonetoosoon
Morning 3km walk to start our long weekend off on the right foot! Rain & shine today while getting our bodies moving!! #walk #run #exercisewithkids #mornings #longweekend #heartmum #healthyhearts
❤️ Mother's Day is around the corner and we're looking for stories about Heart Mums! ❤️ Want to show appreciation to someone in your life who is a mother of someone with CHD? Or want to share how being a mother of someone with CHD has changed you and your views about motherhood? Come shout out your story with us at: https://forms.gle/WYNmFn8ypDxhMyvq6! We'll be sure to highlight your story during Mother's Day Week 💌 #chd #chdawareness #heartmum #heartmama #mothersday #mothersday2024
Just absolutely in love with my new tattoo for Brody's heart. This incorporates his birth defects atrial septal defect, ventricular septal defect, truncus arteriosus and interrupted aortic arch with his birth month flowers. I will wear your heart on my sleeve my boy ♥️ Can't thank Rona enough for making it absolutely perfect and for being so chill, you've absolutely smashed it Rona, look at those poinsettia leaves. ❤️ My amazing little sister for actually drawing the original design and making it as close as we can to being realistic for Brody's heart defects with it looking beautiful ♥️ #1in100 #heartmum #hearttattoo #truncusarteriosus #interruptedaorticarch #atrialseptaldefect #ventricularseptaldefect #heartwarrior #myson
What they don’t tell you about surgery recovery ❤️🩹 I try to play a very active role in the CHD community and enjoy talking to other families and sharing tips, traumas and triumphs ❤️ but over the last two years I’ve noticed there are many things us heart parents we’re not made aware of. I want to start off by saying that medical professionals do their best to inform us of the most important information and I understand that some details are left out because of various reasons such as: 1. Not wanting to overwhelm us with too much information or 2. The info not being applicable to all children in recovery That being said… it can be incredibly shocking when these very common things do happen to our children 😣 it’s scary to not know what to expect so I have created this post to hopefully share some information that you may not be aware of ✨ Always make sure you ask questions to your child’s care team! Using our medical planner to record your thoughts 💭 and questions ❓and their answers is a great way to ensure you never forget 🧠 Did you know these things may happen to your child prior to their surgery?? Let me know in the comments and poll ⬇️⬇️
Woohoo! 🥳 Tomorrow is My Scar Buddy launch day!! 🎉🎉 I just wanted to take a moment to let you know I’ll be going through all the finer details of Ted, and the launch in my stories later today! 🙏 Make sure you go and check them out if you were hoping to order in our launch tomorrow evening! Remember we only have 7!! That’s it! And we have more than 7 people on the waitlist! So… make sure you’re ready at 7pm tomorrow night so you don’t miss out on our first release! 🤎 #myscarbuddy #openheartsurgery #heartwarrior #heartkid #chd #chdawareness #chdwarrior #heartmama #heartmum #nicumum
Hiked up The Leap yesterday and as usual that view is worth the pain that is coming in the next few days for these unfit muscles 💪⛰️ #theleap #hike #thoseviewsthough #magic #themusclesarestartingtoburn #doms #heartmum #heartmummy #fitness
Two weeks until my yearly heart check up & my first run for 2024. Checking out a new track in our new town and find this 🤣🤣 Bye bye brown snakes on the bush track - watch out for Mr Crocodile through the wetlands 🐊 #run #heartmum #chf #runningmums #letsgo #timetogetfitagain #preppingforparkrun #healthyheart
As a heart parent, it can be difficult and overwhelming to cope with congenital heart disease (CHD), but here are some tips, from other heart parents, on things you can do to show yourself some kindness: 💤 Eat well and get as much sleep as the situation allows 💬 Be honest and talk about how you feel 👭 It can be hard to ask for and accept help, but nobody can do it all. Let those around you help carry some of the load. And of course there are our peer support groups and Facebook parents group for support and comfort when things get tough. ❤️ #chd #chdawareness #chdandme #heartmum #heartdad #heartparents #heart #hearts #congenitalheartdefects #congenitalheartdisease
Another new t-shirt design now available in our Etsy shop. I love someone with CHD. It comes in a variety of sizes and colours Let me know what you think? #heartwarrior #chdawareness #chd #heartparents #chd #chdwarrior #heartsurgery #heartmum #heartdad #heartbaby #chdbaby #heartdefect #congenitalheartdefect #congenitalheartdisease
Our next drop-in session for heart parents with children over 2 years old is this Tuesday (26th) at 8pm. It's a great chance for heart parents to meet, talk through shared concerns, and get some support. 💕 To sign up, DM us or email [email protected] #chd #chdawareness #congenitalheartdisease #congenitalheartdefects #heartparents #heartmum #heartdad #support #supportgroup
I'm trying something new today 💙❤️ I wanted to put a design I've created onto a t-shirt and this is the result. If this is successful, then I will create more as I have some for heart dads and also for heart warriors themselves. Let me know what you think in the comments. This t-shirt is available to buy in our Etsy shop now. #chdparent #chd #chdawareness #heartparent #heartwarrior #heartmum #heartmama #congenitalheartdefect #congenitalheartdisease #heartsurgery #heartbaby #chdbaby
My baby's one kidney saved her life (this story discusses open heart surgery and contains post surgery images). "Mila is the strongest most inspiring heart warrior, I am so thankful for her everyday. I am grateful we found out about her heart defect antenatally; I cant imagine what would have happened if Mila had two kidneys and her congenital heart disease was never picked up on. Heart parents- be kind to yourselves and lean on your support systems whenever you feel like you need them." - Danielle Mila was diagnosed with renal agenesis at Danielle's 20-week scan. Further checks also led to the diagnosis of a heart defect, coarctation of the aorta. Danielle shares their emotional story (link in bio, go to 'Your Stories'). #chd #chdawareness #congenitalheartdefects #heart #hearts #tinyhearts #heartmum #heartdad
LIVE NOW! Surprise weekend away! Come chat! Www.Youtube.Com/c/archeradventures #surpriseholiday #birthdaysurprise #hlhs #chd #hypoplasticleftheartsyndrome #congenitalheartdefect #halfaheart #teenwithhlhs #hlhsteen #heartmum #teenmum #holiday #smallyoutuber #vlog
Do you have a child with HRHS or are an adult living with HRHS in the UK? I would love to feature your story in my new upcoming book which will be released in the near future. If you are interested, please feel free to drop me a message. I’m happy to answer any questions you may have too. It would be great if you could share this post to help me reach HRHS families. ❤️ Look forward to hearing from you all soon. KTx
"Our little boy Jasper was born on 5th October and had surgery to repair his coarctation two weeks later. The surgery went really well and he is doing amazingly now. The parent-to-be online support group helped us so much in preparing for and dealing with his surgery. The whole experience would have been even harder without it, and we can’t thank the group facilitator Abbie, and Tiny Tickers enough. " - Kat If you are expecting a baby with congenital heart disease (CHD) we encourage you to join our next heart parent-to-be online support group, starting on Thursday at 8pm. Simply DM us or email [email protected] to sign up. The group is facilitated by heart mum, Abbie, and is an opportunity to connect with others, talk through shared concerns and prepare for the road ahead. #heartparent #heartmum #heartdad #parenttobe #chd #congenitalheartdefects #heart #hearts
A very gentle Mother's day to all Mother's. Whether you choose to celebrate or not, you are all amazing Mother's. Take today to be kind to yourselves. My DM's are always open if you just need to talk to someone, as I know today can be hard. #babyloss #babylossuk #weseeamum #mothersday #heartmum #chdawareness #chdparent #heartparent #bereavedmother #babylossawareness
Cherish every moment and memory with you. I have a completely different outlook on life now since this amazing little boy came into our life ✨ #motherhood #realmotherhood #rawmotherhood #mummydiaries #mummybloggeruk #mummylife #mummyof4 #twounderthree #motherhoodclub #mumboss #boymumlife #heartmum #heartmom #chdwarrior
Do you have a Heart Mama? Celebrate her fabulousness with a pacedandproud T-shirt or Hoodie for Mother’s Day. Printed in the UK on organic cotton, our designs aim to raise a smile and awareness of life after heart surgery or with a pacemaker. We have Free postage in the UK today and over the weekend too. Link in bio. #heartmama #heartmum #pacemaker #heartsurgery #pacemakerlife #mothersday #motheringsunday #chd #heartpatient
FREEPOST in the UK tomorrow and over the weekend, on all our lovely hoodies and T-shirts for Heart Hero’s and Pacey People - just in time for Mother’s Day #pacemaker #teenwithpacemaker #youngpacemaker #hearthero #heartwarrior #mothersday #hearthero #heartmama #heartmum #heartmums #hearttshirt # heartsurgery #pacey #paceypeople #heartpatient
We know that parents of babies and young children with congenital heart disease (CHD) find much comfort and hope in reading stories of adults and teens living with CHD. 💕❤️ We are fortunate to have a collection of these stories on our website, which you can read by going to the 'Your Stories' section and clicking on the tag 'Stories of hope: adults/teens with CHD.' (Link in bio, go to 'Your Stories'). If you are an adult with CHD and you would like to share your story, please DM us. We'd love to share it! #chd #chdawareness #congenitalheartdefects #heart #hearts #congenitalheartdisease #heartmum #heartdad #heartparent
It’s usually the kids that take a comforter with them to hospital but I asked my mum to make me one this time 😂 Me & bunny have handed our little man over for his cath.. it’s not OHS but it’s still just as hard handing over your baby and watching them be put to sleep. 😢🤍 #chdwarrior #chdawareness #heartmum #manchestermum #comforter #handknitted #handknittedcomforter #babyboy #mumof4
THANKFUL THURSDAY.. 🙏🏽 When we were admitted to hospital back in December and spent a month there everyone was extremely concerned about baby’s heart function, this was also very unexpected and there were no clear reason why things had gone downhill. Yesterday we had our first echo since being discharged.. I can’t lie I get extremely nervous every single time I have to step foot in a hospital now so I was not looking forward to this appointment at all. Also every echo we had whilst in hospital his heart function remained the same with little to no improvement. Yesterday we got the amazing news that babies heart is functioning like a normal heart again and his consultant was very happy with everything that he saw! I have never been happier! This journey is such a rollercoaster and nobody can prepare you for what is to come but right now I am going to enjoy this high for as long as possible 🎢🎉❤️ #babyboy #manchestermum #mumof4 #heartwarrior #heartmum #chdwarrior #chdawareness #chdjourney #thankfulthursday #mumlife #motherhoodnetwork #motherhoodjourney
Girly sleepover the other weekend for my daughter = any excuse to buy things with hearts on!! My little heart warrior makes me so proud every single day it still amazes me how strong these little babies are 💪🏽❤️ #manchestermum #mumlife #chdawareness #chdwarrior #heartmonth #heartmum #mumof4
Heart Month Challenge 2024 Day 19: Fear This is another topic I don't really know how to address. As a mother of a medically complex child, I don't know if there's a greater fear than losing her. From the beginning, there was the fear of her not making it through pregnancy, the fear of what her quality of life would be, the fear of me not being able to take the best care of her, the fear of all the heart surgeries she'll need to go through. Then, once she was born, the fear became more intense. With each oxygen saturation monitoring, the fear when the number would drop too low. I became a pro at putting the sats probe on her little feet and wrist and knew how to get the best readings that I would teach her nurses. The low numbers resulted in A&E trips, being blue-lighted by the ambulance, and hospital stays requiring oxygen support. There was the fear that would keep me up at night to monitor her heart rate and breathing. The fear when she would cough or sniffle. The fear that her prophylactic antibiotics and additional immunisations wouldn't be sufficient to fight off all the bacteria. Any small thing at that point could turn into something life-threatening for her. And this wasn't my imagination, we were told to be extra careful by her cardiac team. We were advised to keep visitors to a minimum. And we set extremely high hygiene standards for our household and anyone that was to come into contact with Lilygrace. Then, there was the fear when I knew that her heart needed open heart surgery and asked for her team to move the CT scan and surgery discussion earlier. But they waited and Lilygrace's oxygen saturation dropped too low that she needed to go to hospital to be on oxygen support. And while she was in the hospital, she caught two viruses that delayed her surgery even more. We can't even describe the fear and heartache we felt when Lilygrace went into the operation theatre for her open heart surgery. And in the days post-surgery when her condition would fluctuate and even after she came home, there were so many details to be mindful of when taking care of her. There is fear, but many times, deep down, there is also peace. (CONTINUED IN COMMENTS)
Heart Month Challenge 2024 Day 16: Heart uncle & aunties (Part 2) Nardia: "Lilygrace, the sweetest and strongest girl I know. I know it’s not over yet, and there is more you are yet to overcome, but always remember God made you you like you always sing “God made me” and you are a little warrior. And always remember God gives his strongest soldiers hard battles because he knows they will always overcome." Nardia has recently come to stay with us more often, helping around the house and with Lilygrace as I work on my Etsy shop. Lilygrace loves being with her, and we're so happy for Lilygrace to be meeting more of her (many) aunties! We appreciate you so much for always travelling long distances to be with us, even to celebrate Lilygrace's first birthday ❤️ Charity: We haven't been able to see her much as she lives quite far from us. She's been continually praying for Lilygrace, and she came to help us out when Lilygrace was at her most vulnerable state, just before her open heart surgery in December 2022, and needed to be on oxygen at home. I was also suffering from an eye condition, so her help was so timely and we are so thankful ❤️ We hope to see her and Lilygrace's cousin more often! Thank you all for being there for us and being the best heart uncle and aunties! We love you so much 😘 #heartmonth #support #family #heartuncle #heartauntie #heartwarrior #heartbaby #heartmum #heartdad #heartfamily #chd #chdawareness #chdadvocate #chdbaby #heterotaxy
Heart Month Challenge 2024 Day 15: Support We've received a lot of support from our immediate family, our church family and the Heterotaxy Connection Support Group on Facebook. By being involved in heart month this year (for the first time), I experienced how supportive and encouraging the online heart community is. We created a WhatsApp group before Lilygrace was born to send updates and prayer requests. We are so thankful to everyone who has been praying for us. It's supplied us, carried us, and upheld us on the most challenging days. We truly realise we are members in the Body of Christ and we need the petition of other members. We would have collapsed along the way if it was not for the prayers. There has also been a lot of practical support which has been so needed and appreciated from family and friends who: • Personally message us after receiving Lilygrace's updates. We are always so cherished by the messages. • Have shared with us the medical/health challenges they've been through with their baby/child, and gave us advice, encouraged us and/or prayed with us. • Cooked meals for us or ordered food for us 🍛🍔 Some of them came a long distance to drop the food for us. The food nourished our bodies and cherished our souls on some of the most exhausting days in hospital or at home. • Offered to come and clean our home while we were in hospital with Lilygrace. I still tear up everytime I think of this. • Came from near and far to see us in hospital even though they knew they couldn't see Lilygrace. Jon and I needed visiting too. • Came to see Jon or I even after Lilygrace had come home from hospital, take us out separately for walks/meals, just so we could take a break and have someone to talk to. • Regularly send messages or call to check on us and/or pray with us. • Sent gifts to cherish us. • Are careful and considerate when they are around Lilygrace. • Visited us in our home 🏡 Jon and I often remember all the support and shepherding. It kept us going on some of the most difficult days. And when we felt alone on this journey at times, we were reminded that we're loved and cared for by so many 🥰 Thank you ❤️
Heart Month Challenge 2024 Day 14: Love According to the Heart Month Challenge calendar, today was supposed to be on "hope". But as it's Valentine's Day, I thought it was appropriate to switch it around with "love". 14 February will forever be more than just Valentine's Day to us as it's also the last day of CHD awareness week. Lilygrace has shown Jon and I a love we never knew was possible. From the time we found out we were pregnant, to the first ultrasound scan, to finding out her diagnosis, to her birth, to these 19 months of her life, our love for her has only grown over time. Her having Heterotaxy and complex CHD does not alter our love for her one bit. Actually it most likely increased our love for her. It definitely has made us cherish every day we get to have with her. We will always love her no matter what happens. And we know that the source of our love is God Himself. He is the God of love and has poured out this love into our hearts. Loving Lilygrace has caused us to realise how much God the Father must love us, His children. Despite our lowly condition, He still loves us to the uttermost. It's this love that continues to draw us to follow Him all the days of our lives. This photo was taken last October when we went to our first wedding as a family of 3. The wedding testified the love of the newly wed couple and the love of God. It was beautiful. Sending love to everyone who is on this journey with us and all the other heart families out there. You are loved ❤️ #heartmonth #valentinesday #love #heartwarrior #heartbaby #heartmum #heartdad #heartfamily #chd #chdawareness #chdadvocate #chdbaby #heterotaxy #godislove
Happy Valentine’s Day from me and my boy ❤️ 2024, 2023, 2022… ❤️💋❤️ Valentine’s Day has a much bigger heart meaning for us now, February is also heart month and the day before Valentines last year, despite never having any symptoms at all, Luke got diagnosed with CHD which required open heart surgery, in all that has happened I feel truly grateful we are the lucky ones and his recovery has truly blown us away, we were able to move on with our lives but that is not the case for everyone ❤️🩹 We owe our sons life to @greatormondst and the incredible support of @tinytickers , so on Valentine’s Day today if you are able to spare what you might spend on a card or a box of chocolate’s to instead help fund heart research in children it would really mean the world to us ❤️ Happy Valentines! 💋 #chd #chdawareness #chdwarrior #heartmonth #heartmom #heartmum #openheart #openheartsurgery #gratitude #valentinesbaby #greatormondstreet #heartbaby #chdsurvivor
Heart Month Challenge 2024 Day 13: Nurses We've met so many amazing nurses on this journey so far, they are truly a gift from God. There are too many to thank. I wish I wrote down all their names and took photos of Lilygrace with them. We've had two cardiac specialist nurses, one who was there for the fetal echo scans/support and another one who has been Lilygrace's assigned nurse since she was born. We would not have made it this far without them. From the detailed explanations, to giving us emotional support, to communicating with the consultants/surgeons on our behalf, to following up on all kinds of requests. Especially in those early days, she would get calls often as there was always something unexpected that would come up. Even though the calls are much less frequent now, everytime I call her, she always asks how Lilygrace is and is always happy to do her best to help, even if my request should be someone else's responsibility. It takes something special to be a paediatric cardiac nurse. They need to love the little ones, and their parents! They need to be gentle and fine enough to care for these vulnerable babies, but also be strong enough to witness and be a support for some of the toughest and most heartbreaking situations a child and their parents can go through. I will always remember the nurses who went above and beyond to make sure that Lilygrace and I were as comfortable as we could be in hospital. The nurses who offered to hold and feed Lilygrace so I could eat and take a break. The nurses who reassured me that I was doing the best I could and gave me hugs when I needed them the most. The nurses who would update us in detail what happened when we couldn't be by Lilygrace's bedside. The nurses who would make sure to pass on our preferences and requests to the next nurse on shift. The nurses who weren't just trying to get things done but tailored their care according to each patient's need with empathy. I just want to say a huge THANK YOU to all the nurses out there pouring out their whole being on caring for their patients. You mean so much to us parents/family members. You are the light in our dark tunnel ✨
💜Sometimes others describe what I do so much better! The final paragraph is what I’m all about - showing exhausted, desperate and heart mamas that there is divine order to your challenges and therefore there is hope... and how you can unravel the ball of wool! ................................................ “I have been looking for years for a hands-on-book or videos which SHOW me what to do in situations that are similar to mine when it comes to parenting my beautiful but challenging children. This is the first time I have found someone who can speak directly to my situation, give me advice that is practical, applicable and works. I have always been aware that I cannot change my children or any other external factor in my life, all I can control is me. And so that is where this course lead me, to understand myself; to see my past and present energy actually affect my children daily and they reflect what I need to focus on, daily. Heidi is truthful, honest and compassionate in her skill of helping mums see how everything we know is back to front and upside down. Now, the world makes more sense to me, and for the first time I feel empowered to be a parent. They say there is no instruction book for parenting, for me, this course has come very close to it!” - TNW participant 2023. ......................................... 💜SIGN UP : by Feb 22nd. We start Feb 26th. 🔗 on my bio Any questions - be in touch or sign up for your FREE CHAT at the website below, amazing women! Time is running out to book in 🤗
Heart Month Challenge 2024 Day 12: Doctors Lilygrace has been under the care of many doctors, from the time she was in the womb till today. Doctors were present during the fetal scans, delivery, every day of her hospital admissions, her surgeries, all the A&E visits and GP visits. Even the calls we made to 111. We will never be able to express our gratitude towards all of them, for the care they've shown towards Lilygrace and us. Dr Bautista has been the most outstanding to us, being Lilygrace's cardiology consultant from the beginning, saving her life by carrying out her cardiac catheterisation at 4 days old, then seeing us at almost every follow up. And now he continues to support us in our request for a second opinion from another hospital, and for further testing and imaging. He always tells us he wants the best for Lilygrace and is always patient to explain things to make sure we fully understand. Dr Hoschtitzky is the surgeon who performed the open heart surgery on Lilygrace before she turned 6 months old. He carried out the Bidirectional Glenn Procedure, right pulmonary angioplasty and removed the PDA stent. It was tricky and it is incredible what he did. He was operating on her for around 7 hours, longer than expected. His expertise, calm nature and willingness to explain everything to us, reassured us on those most scary days. He saved Lilygrace's life. Lilygrace has been thriving and flourishing since recovering from that surgery. Thank you to all the doctors who have shown compassion, empathy and care towards Lilygrace. Those who didn't just treat Lilygrace as another patient to check off the list, but took the time to get to know her, spoke to her and comforted her when she was distressed. Not all doctors do. It makes this journey more bearable and gives us parents hope and comfort. Thank you to all the doctors who cared for us as first time parents and medical parents, encouraging us and offering advice on how to care for Lilygrace in the hospital. And didn't dismiss our questions or look down on our lack of a medical background. We are so thankful the Lord for all of you ❤️ Never forget the difference you make in so many families' lives.
Gracie has chickenpox 🤒 We’ve had a very clingy Gracie today and we didn’t get much sleep last night. Calpol, calamine lotion and an oat bath have been our saviours. Fingers crossed for a better night tonight 🤞🏼 #chickenpox #congenitalheartdefect #congenitalheartdisease #chdawareness #rightaorticarch #singlekidney #onekidney #onekidneyclub #onekidneygirl #heartmum #heartfamily #heartbaby
Heart Month Challenge 2024 Day 10: Heart Mum Most people never expect to become a heart mum. I definitely didn't. Jon and I don't have congenital heart disease running in either family. Neither of us have a medical degree. When we got Lilygrace's diagnosis, I was heartbroken, but I was also doubting my ability to be able to look after such a special child. I didn't feel qualified to look after her. How do I navigate this motherhood that's so different to how I imagined it to be? Honestly, being a heart mum is the hardest thing I've ever had to do in my life. And probably will be for the rest of my life. But Lilygrace is so worth it. All the sleepless nights at home and in hospital. All the extra care she needs. All the limitations it's brought to our life. Because we know that God has a special plan for her, for us as a family. He is working all things together for good, to those who love God, to those who are called according to His purpose. (Romans 8:28) As a planner and perfectionist, the uncertainties on this journey is a huge challenge for me. The constant changes, the unexpected situations, have been used by the Lord to touch my disposition. I've had to surrender and submit to the Lord, give everything fully to Him and trust in Him. And again and again, wait on His timing and His way. As an introvert, I have never been someone who likes to bother people. But the Lord gave Lilygrace to us, and it's caused me to go against my self, to open to the Body of Christ, for prayers and practical help. It's made me speak up and advocate for the best care and treatment for Lilygrace. And for CHD. As someone who has high standards and expectations, being a heart mum has made me more empathetic towards others and loving especially towards medical or special needs children. The Lord has broadened my heart. I'm learning to be a better listener without judgment and criticism. Moreover I've learnt to cherish and be thankful for the normal and small things in life. To not take anything for granted. (Continued in the comments)
7th - 14th February is Heart Week ❤️ Maximus Ragnar was born with Hypertrophied Right Ventricle Apex and Mild Apical RVH Truncation. He's defined all the odds from the moments you hear at your 20 week scan we are very sorry his heart condition is too severe, we think it's best too terminate. Waiting the longest week of my life waiting too see the Heart consultants at Birmingham. The longest day of my life finding out about his condition and what the future holds for him. Making plans on a safe delivery for him, ready to be whisked away to neonatal. But this little soldier doesn't do anything by half's, born at home, rushed to the hospital spent a few hours in neonatal and smashed it. Heart appointments do not get easier, the anxiety you face worried that he's going to need surgery. Every illness he catches is a risk on how he's going to cope, is he going to need to be admitted to hospital. Explaining his heart condition to medical professionals who dont understand his conditions. Making sure the health plan is up to date at school and all members of staff know what to do in an emergency. Dreading everytime the school rings worrying its his heart. "Sometimes real superheroes live in the hearts of small children, fighting big battles" Maximus Ragnar my heart warrior ❤️ . . #mumlifestyle #instagood #intags #mumlife #beautiful #mumlifeuk #family #mumlifebalance #singlemumlife #busymumlife #ukmumma #heartmum #chd #heartawarenessweek #mindfulness #mindsetiseverything #healing #love #motivation #life #inspiration #peace #happiness #positivevibes #positivity #healthylifestyle #gratitude #spiritualjourney #mumoffive #mumlifeuk #positivemindset
It’s been months since I posted an update on Gracie.. 9 months in fact! 🤦🏼♀️ Gracie is now 3️⃣ and is the most articulate, strong willed, independent, loving little girl 💕 She is always on the go and never sits still. She is continuing to show no symptoms of the Right Aortic Arch and is perfectly fine with her single kidney. She has been discharged from the cardiac team in Leeds but will continue to be seen for a kidney check up once a year. Swipe for a few snaps and clips of my crazy girl 🥰 #congenitalheartdefect #congenitalheartdisease #chdawareness #rightaorticarch #singlekidney #onekidney #onekidneyclub #onekidneygirl #heartmum #heartfamily #heartbaby
⚠️TW⚠️ I laid my son on an operating table and kissed him as he was being taken away. I handed him to a surgeon knowing they would stop his heart, and prayed with all I had it would beat again. I have learnt more than I ever thought I could, I have cried more than I ever thought was possible, and celebrated victories I never thought of. I have walked a road I never knew existed. I will walk this road forever. I am a heart mum. 🫀 ♥️♥️♥️♥️♥️♥️♥️♥️ February is heart month 🫀 .. but for our family it’s March, April, May, June, July, August, September, October, November, December and January. ALWAYS super grateful for those wonderful superhero surgeons and our little miracle. ❤️🩹♥️✨ #downsyndrome #morealikethandifferent #differentnotless #t21 #trisomy21 #upsyndrome #downsyndromemama #disabilityawareness #disabilities #disabilityinclusion #inclusion #inclusionmatters #diversity #extrachromosome #extrachromiehomie #extrachromosomeextracute #sen #congenitalheartdefect #heartmonth #proud #blessed #lucky #boymama #toddler #toddlermom #chd #heartwarrior #heartmum #openheartsurgery #avsd
Heart Month Challenge 2024 Day 3: Echo/EKG/X-rays Lilygrace has had countless Echos, ECGs (same as EKGs) and X-rays done. The echos started in the womb. I had multiple fetal echo scans following her scan and diagnosis at 20 weeks pregnant. There were times that I wished it was all a nightmare and my baby's heart would be okay at the next fetal echo scan. But deep down, I knew God made Lilygrace very special. The day she was born, she immediately had an echo done when she got to the Royal Brompton Hospital (as pictured). I couldn't be there, so I'm so glad Jon took photos and videos. Sometimes the diagnosis in utero can be different to the diagnosis after birth. For Lilygrace it was the same. After Lilygrace's first heart procedure, the regular follow ups began. We headed to the hospital every month for her to be checked by the cardiology team. Most of the time Lilygrace was not happy to have the echo done and Jon and I had to find all sorts of ways to distract her or keep her calm. In the 2nd photo the cardiologist brought Lilygrace a fibre-optic sensory light. A few times the only thing that could keep her calm and still is if I breastfed her while they tried to scan her chest. You can try picturing how awkward that was for me. But whatever it took to check our baby's heart, I did it. ECGs (same as EKG) and X-rays are tricky as she has to stay perfectly still for a few seconds. I was always close to her and holding her hand if possible. After her last follow up at the Brompton in August 2023, we were anxious and relieved at the same time when the consultant told us that Lilygrace could go back for a follow up in one year's time. We thought: one year?! Despite hospital trips being mentally and physically exhausting, we got used to Lilygrace needing echos and ECGs done frequently. What if something happened to her heart in this year? I had so much anxiety that I had to keep casting it to the Lord and learning to put all my trust in His love and care for Lilygrace. "Trust in Jehovah with all your heart, / And do not rely on your own understanding; In all your ways acknowledge Him, / And He will make your paths straight." (Proverbs 3:5-6) Recovery Version
Today we wear red for Lilygrace, for all the heart warriors, for those gone too soon and to raise awareness for all heart diseases, including congenital heart disease (CHD). CHD is the most common birth defect affecting about 1 in 100 babies. We hope to increase awareness and funding for CHD research, which will ultimately lead to better outcomes and quality of life for those born with CHD, like our daughter. Apparel from our shop https://liliumgiftco.etsy.com #wearred #wearredday #chd #congenitalheartdefect #congenitalheartdisease #chdawareness #heartdisease #chdadvocate #heartwarrior #heartmum #heartdad #heartparents
Today we wear red for Lilygrace, for all the heart warriors, for those gone too soon and to raise awareness for all heart diseases, including congenital heart disease (CHD). CHD is the most common birth defect affecting about 1 in 100 babies. We hope to increase awareness and funding for CHD research, which will ultimately lead to better outcomes and quality of life for those born with CHD, like our daughter. Apparel from our shop @lilium.gift.co #wearred #wearredday #chd #congenitalheartdefect #congenitalheartdisease #chdawareness #heartdisease #chdadvocate #heartwarrior #heartmum #heartdad #heartparents
#heartmum #chdmum #chdwarrior #lovemyboy #chdjourney #chdfamily
Post a day every day for heart month ❤️ Let’s see if I can do this 😩😣 Isla Rae born 28.06.22 🤍 Taken straight away to ICU had an echo scan to be told she has TOF and she was had prostaglandin keeping the duct open to stop any blocking off oxygen this is what was keeping her alive , her cardiologist said she will go for her surgery this weekend you will be transferred over to Liverpool , the thoughts were all coming at once couldn’t sleep couldn’t enjoy just cuddling our daughter for the first time because it was filled with worry. Day 2 Isla went under for a CT scan to have a more in depth look at her heart again she was taken away for hours until finally we had her back , we was told they have found more ways her heart will supply blood flow/oxygen if the duct closes so they took the chance of letting the duct close and watching how Isla will respond to this , of course she was a fighter , now it was a waiting game of seeing how her body would hold up and if we could keep the transfer/surgery at a later date. #TOF #tetrogyoffallot #chd #heartmonth #heartmum #medicalmum
Heart Month Challenge 2024 Day 2: Diagnosis (Part 1) At my 20-week scan on Friday 18 February 2022, the sonographer saw something wrong with our baby's heart but was not certain what it was. A fetal echocardiogram was then booked for the following Monday. We knew that day that God had given us a special little girl. But we didn't know then how special she was going to be. That felt like one of the longest weekends for us, but it was also the weekend God spoke to us a timely word through a conference on the topic "The Grace of God in the Economy of God". On Monday 21 February, after a long and unbearable fetal echo scan, we got taken into a room with a tissue box on the table. The cardiologist started drawing our baby's heart and told us her diagnosis - very complex, with the main diagnosis being right atrial isomerism, complete atrioventricular septal defect (AVSD) and pulmonary atresia. Several arteries and veins were also routed abnormally. The full diagnosis listed more than 10 abnormalities. • Right atrial isomerism means that our baby has 2 right atria, 2 right lungs, a right sided stomach, a midline liver (which became left sided after birth) and no spleen. • Complete AVSD means she has a big hole in the middle of the four chambers of her heart, and she only has one set of valves instead of two. • Pulmonary atresia means that her pulmonary valve is blocked/obstructed and there was no way for the oxygen-rich blood to flow from her heart to her lungs once she was born and the Patent ductus arteriosus (PDA) closed. We had never heard of any of these terms before. It was a lot to grasp. The cardiologist told us that what our baby has is rare and there would be many challenges ahead. She said baby would need to immediately be on medication after she's born to keep her PDA from closing and require surgery within a few days of being born otherwise she would not survive. There was a considerable mortality rate before 1 year old. She told us that baby would need several heart surgeries, and even then there's a probability she may not make it past the first few years of her life. If she does, she will need lifelong cardiac care. (Part 2 in the next post)
Heart Month Challenge 2024 Day 1: Date of Birth Lilygrace was born at 13:36 on the 2nd of July 2022, weighing 2.88kg. As we received Lilygrace's diagnosis during my pregnancy, there was a birth plan in place. Unlike most mums, I didn't get to choose my birth plan. Yet we are extremely thankful to the Lord that Lilygrace's serious heart condition was detected during pregnancy, as we would have most likely lost her if it wasn't. The doctors told us that Lilygrace had to be induced around 39 weeks as waiting till 40 weeks would put her at a greater risk. By the time 39 weeks came, there was no bed available in the NICU in the hospital I was giving birth in or in the PICU at the Royal Brompton Hospital - the specialist heart hospital Lilygrace was going to be transferred to for her first heart procedure. So we waited one day, then another. It was an anxiety-filling time. All we could do was pray. We trusted that the Lord's timing was best and He was sovereignly operating behind the scenes for baby girl's arrival. As we were going to bed on the 1st of July 2022, we got a call to head to hospital. I was going to be induced! It was an extremely exhausting and intense process, but Jon was there to give me the best support and the Lord brought us through. We were so relieved that Lilygrace's heart rate didn't drop at all and she was stable. I got to hold her for just a few seconds before she was rushed off to NICU to be put on IV Prostaglandin to keep her alive. Then the ambulance blue-lighted Jon and Lilygrace to the Royal Brompton Hospital. I lost a lot of blood so I ended up needing to recover and not being able to see Lilygrace for 2 days. I remember crying every time Jon sent me a photo or video of her. That was one of the hardest times of my life. I do remember the day I got to go see her and hold her for the first time. There was joy but much heartache, seeing her with the ng tube and monitors on her, and she wasn't allowed to feed yet. There was fear for what she had to face next. She was so small yet so strong. And we loved her so much already. #heartmonth #birthstory #inducedbirth #chd #chdawareness #littleheartwarrior #heartmum #heartdad
LILYGRACE'S HEART JOURNEY 🫀 Hello everyone! This is our now almost 19 month old daughter Lilygrace. We've not posted for a long time and it's taken us so long to share her with everyone on Instagram as a lot has been going on, especially in the first year of her life. We have just been enjoying a few months of some sort of normalcy. Lilygrace was diagnosed with the rare Heterotaxy syndrome - right atrial isomerism (we will explain in a later post what this means), complete atrioventricular septal defect, pulmonary atresia, right aortic arch (unobstructed) and more. Her full diagnosis is very complex. It was a great shock and it took us time to process the diagnosis. But we had hope and faith that our baby girl would be a heart warrior through the challenges that were ahead and God would grace us through each trial. I had a planned induction and after birth Lilygrace was immediately put on IV medication to keep her alive until she had her first cardiac catheterisation done at 4 days old. We had a very challenging first few months with Lilygrace being in and out of hospital and her oxygen saturation dropping too low when she was sick. We had a lot of appointments with cardiology, dieticians, immunology, community nurses, and health visitors. Lilygrace had her first open heart surgery just before she turned 6 months old. Currently she is growing and developing amazingly. She has met all her developmental milestones and exceeded some. And she is an expressive, clever and happy little girl 😊 We are so thankful for all the support, care and prayers we've received on this journey so far. And we appreciate it even more as we navigate the next steps. Lilygrace needs at least one more open heart surgery and we're currently seeking second opinions from hospitals in the US and UK for her next open heart surgery. (Continued in the comments)
Last week, our Communications Officer, Louise, and her adorable 17-month old daughter, Emi @emistgajourney, shared their incredible story with @dailymail. ❤️❤️ Emi's heart condition, transposition of the great arteries, was detected by sonographers at the 12-week scan, when her heart was the size of a grain of rice! The early detection meant that Emi received the care she needed to survive from that point onwards. As you can see, she's now thriving! ❤️ Unfortunately, the article incorrectly states that Emi was the youngest patient to have the balloon septostomy procedure. Two hours old is the earliest point at which the procedure can be performed, but it is not uncommon for TGA babies to have this procedure so soon after birth. #chd #chdawareness #congenitalheartdefects #tga #transpositionofthegreatarteries #heart #hearts #heartbaby #heartmum #heartparent #tinytickers #tinyhearts
Posted a lil mini vlog yesturday with this gorgeous baby alpaca, watch and find out why it became such a short vlog 😂 #alpaca #babyalpaca #cria #heartmum #archeradventures #vlog
Are you a heart parent-to-be? 🤰 We invite you to join our next support group - an excellent opportunity to meet other heart parents-to-be. This group will run online every Thursday evening for six weeks, beginning this Thursday at 8pm. This group aims to support and prepare heart parents-to-be. We will be supporting each other from diagnosis and appointments right through to birth and discussing what you might expect when your baby is in hospital/undergoing treatment. It also provides a chance to talk through some of the practicalities of preparing for a baby with CHD. Please email [email protected] or DM us to sign up. ❤️ #chd #chdawareness #familysupport #heartparenttobe #heartparent #heartmum #heartdad #congenitalheartdefects
I am absolutely over the moon 🌙!!!!! My proof for 'The Voice of Heart Families'has come!!! (The line in the middle is only on there because it is a proof) The contents look perfect and I cannot wait for everyone to read it and get a copy! Keep your eyes out for Feb 1st!!! The link will be in the bio when released !! #bookcover #bookproof #bookstagram #bookstagrammer #CHD #chdawareness #heartwarriorsbook #heartmum #booksbooksbooks #nonfiction #indieauthor
Custom heart mama mug with your heart warrior's birth year and name ☕❤️ We also have one for heart dads too! Head to our shop to check them out! #custommug #mummug #mumgift #heartmum #heartmama #heartmom #heartparent #chdaware #chdawareness #chdadvocacy #chdbaby #chdgift #chdbattle #heartmonth #heartdisease
Here's our red heart mama sweatshirt for those who will be wearing red for heart month! ❤️ It also comes in 9 other colours. Shop using the link in our bio. #chd #chdaware #chdawareness #chdadvocacy #chdapparel #chdwarrior #chdgift #heartmama #heartmum #heartparent #heartmom #heartfamily #heartwarriormama #heartdisease #heartmonth #wearred #mumsweatshirt #mumgift
Our very first personalised Heart Mama sweatshirt ❤️ What year was your heart warrior born in? https://liliumgiftco.etsy.com/listing/1655150737 #chd #chdaware #chdawareness #chdwarrior #chdadvocacy #chdapparel #chdgift #chdwarrior #chdbaby #heartmama #heartmom #heartmum #heartparent #heartfamily
December you have been so magical ✨ We have had the best Christmas yet! Now we have a little time left as a family of 4 before we turn into a family of 5 I need to make list I still have so much to do before baby arrives and it's Maisie & Teddy's birthday soon 🫣 Hope you all had a wonderful Christmas & New Year 🎄✨❤️ #mumtobe #hampshireblogger #portsmouthblogger #babydue2024 #babyannouncement #babytips #thirdtrimester #mumlife #pregnantuk #pregnancyjourney #tgaheartwarrior #heartmum #gestationaldiabetes #csectionmama
Sophia Hope, 6 weeks old today. When I was pregnant, we were told that Sophia had a complex heart condition. We were told the worst case scenario but chose to commit Sophia to God and prayed that he would grow and protect her. Before she was born, we prepared to be in hospital for 3-6 months as she had her first surgery and awaited her second surgery. Sophia has far exceeded all our expectations and we are thrilled to have her at home this Christmas. She is a joy to love and is a wonderful answer to prayer! She still has a long road ahead but we are so thankful to God for how far she has already come 💛 #heartkids #heartmum
🤍It’s so important to look after yourself when caring for someone with medical needs, after all, “you can’t fill from an empty cup!” So fill up your cup by utilising the tools in the self-care section of The Medical Planner! 🤍 Get your Medical Planner now for only $25 and if you like, share and tag a friend I’ll DM you a code for free shipping!!! #chd #congenitalheartdefect #heartmama #heartwarrior #fighter #selfcare #organise #planner #medical #medicalplanner
Vlogmas is in FULL SWING NOW! I’m ALMOSSSSSTTT ALL CAUGHT UP! Haha! It’s been a busy month for sure! And it’s been a breath of fresh air getting back to our more causal vlogging roots! Been so much travel since we came out of shielding, boy has life changed from those two years to the last two! I’m already getting excited for the new year and all our new plans! And the day I never thought i’d get to see, my daughter turning 14 years old! (Take that doctors 😝) anyways, is there anything you’d like to see vlogmas style? We have a couple of down days before the next BIG ADVENTURE! (Coming to a digital device near you, December 19th 😂) #vlogmas #hlhs #heartmum #chd
My pride and joys 💫 I can’t believe within hours of this all my kids were struck down with a sickness bug 🦠 it’s been a wild 24hours and thankfully everyone seems to be over the worst of it. #mumlife #mumsofinstagram #mumssupportingmums #mybabies #twinmum #twinmomlife #twingirls #heartmum #lovesofmylife #christmas #festive #joysofwinter
For me this was a hard thing to allow myself to do. I felt that if I expressed any negative feeling or emotion that meant giving up on my child, my faith, my positivity. I thought why should I grieve when others have it worse. Reality is there is room for both emotions. Allowing yourself to grieve allows those parts to heal. You can grieve the expected experience and still appreciate each moment. You can see the blessings, be excited for others and be not okay for a moment. That being said please seek help if the grief is overwhelming. Whaike you may feel alone or feel like you have to be the strong one, aren’t alone in those feelings. Prioritize your feelings, mental health in whatever journey you are on. #medicalmom #medmom #medmum #heartmom #heartmum #hospitalbaby #hospital life #mentalhealth #grief #griefjouney #grieving
My 30th birthday vlog goes live at 8pm on www.youtube.com/c/archeradventures ! #30 #30thbirthday #birthdayvlog #heartmum #openingpresents #whatigotformybirthday
Haven't updated in a while. Jackson is nearly 4 and all his check ups have been fine, they've actually extended them to every 9 months. Orla is nearly 2 and such a happy wee girl. #heartmum #heartwarrior #son #daughter #life #singlemum
Are you a heart parent-to-be? 🤰 We invite you to join our next support group - an excellent opportunity to meet other heart parents-to-be. This group will run online every Thursday evening for six weeks, beginning Thursday 23rd November. This group aims to support and prepare heart parents-to-be. We will be supporting each other from diagnosis and appointments right through to birth and discussing what you might expect when your baby is in hospital/undergoing treatment. It also provides a chance to talk through some of the practicalities of preparing for a baby with CHD. Please note we also run a general CHD support group for all heart parents. The date of the next session is to be confirmed, but please visit our website if you want to sign up. ❤ Follow the link in our bio for more information and to sign up now. #chd #chdawareness #congenitalheartdefect #congenitalheartdisease #familysupport #chdsupport #chdcharity #parentstobe #parentstobegroup #virtualsupportgroup #mumtobe #dadtobe #heartmum #heartdad #heartparents
🍀 Schließe ab mit dem was war, sei glücklich mit dem was ist und offen für das was kommt. Das Leben ist schön, von einfach war nie die Rede.... 🍀 . #missing #momoftwo #juni2019 #juli2019 #noteasy #missyou #two #twins #sternchen #sternenkinder #lost #lostmybabys #heartmum