Congenital Heart Disease
Bonding with my third baby was not the same
After restlessly waiting 9 long months, panting through labor and pushing through delivery, the moment finally arrives. The nurses grandly present your gorgeous newborn baby to you to hold and meet for the very first time and you feel like you’re going to explode with love. It’s a nice story,…
Lines and Tubes and Beeps, oh My!: A Baby After Open Heart Surgery
Lions and tigers and bears, oh my! What’s the equally alarming, open heart surgery version? Lines and tubes and beeps, oh my! We’re discussing the various wires, tubes, lines, machines, beeps, and more that you might see in the cardiac intensive care unit attached to your baby after open heart…
I’m not ready, but I have to be because I am a Heart Mom
We’re getting closer. I try to stick to the nuts and bolts, but my heart and soul so easily weep. I have to hand you over again soon, too soon. And I have to trust and let you go because I am a Heart Mom. I never anticipated joining the…
25 Items for a CHD Hospital Care Package for Parents
Parents gazing over their newborn baby in a hospital bassinet seems like a perfectly normal, typical scenario. Parents wide-eyed in fear looking over their newborn baby covered in wires and tubes in the cardiac intensive care unit…not so normal or typical. Yet this was our reality and is the reality…
What to Say to a Heart Warrior Mom, and What Not to Say
“Well she’s actually safer inside.” They would freeze in discomfort clearly unsure what to say next. “She needs open heart surgery around 4-6 months old.” I would explain to another person. Next, I would erupt in a nervous giggle not wanting to make them uncomfortable, also unsure what to say…
Meet Your Baby’s CHD Medical Team, Part 1: Home Edition
Taking care of a baby with critical CHD is a team effort. A team effort at home. And a collaborative team effort of providers in the medical space. In this post, come along with me to meet some of your CHD child’s medical team. I’ll take you through a list…
How to Support Parents When Their Baby Needs Open Heart Surgery
Your friend, sibling, or neighbor is starting to prep for their baby’s open heart surgery. You want to help but don’t know how. You don’t want to bother them when they’re already dealing with so much. While I haven’t stood in these shoes exactly. I have been on the other…
National Zipper Day Heart Warrior Incisions and Inspiration
National Zipper Day is not one I ever thought I would choose to celebrate. National Ice Cream Day, National Pizza Day, National Beach Day, sure, all of the above! Then again, I never thought my daughter would be born with critical congenital heart defects and require open heart surgery twice…
Open Heart Surgery Scars: Your Baby’s Surprise Warrior Wounds
When you think about open heart surgery scars you may quickly think of a scar running down the middle of the patient’s chest. Before my daughter was born, I knew she would need open heart surgery as a baby. Of course, I was more worried about her heart repair, but…
How much does open heart surgery cost?: The Million Dollar Baby
Many people are curious about the cost of open heart surgery. I know I was and still am. Unfortunately, like all healthcare things in the United States, it is not so straightforward. For an extremely anecdotal reference, the hospital billed our insurance $162,241.02 for my daughter’s second open-heart surgery hospital…
Heart Month 2024: Headway and Hope for CHD Awareness
Hasta luego Heart Month and hello greater CHD Awareness! Is Heart Month ever actually over? Not likely if you’re a CHD family, you may be all about the hearts and CHD awareness all year long. And I’m here for it. I wanted to take some time to reflect on Heart…
What to Expect at a Pediatric Cardiology Appointment for CHD
As the parent of a heart warrior, you quickly learn what to expect at a pediatric cardiology appointment. It becomes routine. In the beginning, however, everything is new. If your child is newly diagnosed with CHD or even heading to the pediatric cardiologist to confirm or rule out a Congenital…
A Valentine’s Letter to a New Heart Mama
Heart mama life is not for the faint of heart. Pun intended. If you’re a heart mom, you’ve likely heard, “How do you do it?” And “I can’t even imagine.” Or maybe “I couldn’t do what you’re doing.” But you can, and they could, and so could she. Because when…
Support CHD Small Businesses: Shop with Heart, Spread Awareness
This Heart Month, join our efforts to raise Congenital Heart Defect (CHD) Awareness and shop CHD small businesses. Once you become a heart mom or heart dad, heart aunt, or heart grandma, it feels natural to want to tell everyone about your family’s warrior and spread CHD Awareness. An easy…
Clothes & Things for your Heart Warrior: Get Ready for Heart Month
If you’re a heart mom like me, you likely struggle to resist buying up everything with hearts. So I wanted to share with you some of my favorites and latest finds to honor and support your heart warrior. Heart Month is almost upon us and it’s time to call attention…
Essential Guide to CHD Awareness Month
CHD. What is CHD? Are you ready?? It’s almost CHD Awareness Month! I’m covering loads of CHD basics below. Use this guide to help yourself, your family and your friends understand everything they might not yet know about CHD. Help us raise CHD awareness and join the fight for all those…
What is a heart warrior?
Shortly after my baby was diagnosed with a Congenital Heart Defect (CHD), I was thrust into a new world with all different terminology, like, heart warrior. If your child is diagnosed with CHD, you start to look at hearts differently and notice them everywhere. Everything heart takes on a whole…
Christmas in the hospital: When it’s not the most wonderful time of the year
Monitors alarming, machines beeping, and lights flashing are not the delightful Christmas sounds and sights I anticipate annually. They don’t ring quite like jingle bells or twinkle like lights on an evergreen tree. Christmas in the hospital is not something anyone puts on their wish list. Yet, we found ourselves…
A real-life nightmare with our 1-day-old newborn
We arrived at the front desk frantic… “our newborn baby was brought here by ambulance, where is she?!” The hospital lobby was eerily quiet since it was Saturday and the holiday season. Such a contrast to the cacophony symphony raging through my head. It took forever to get us checked…
Becoming a heart mom: Birth edition
December 17, 2021, the day I became a mom of three, the day my heart warrior arrived, was the best and worst day of my life. This is a day I’ll never forget. Without a doubt, it was the most emotionally charged day of my life. Things did not go…
What questions to ask about your baby’s heart surgery
Trying to pick a surgeon to perform open-heart surgery on your baby is a heavy decision. How do you decide? It feels like an impossible reality, and I lost so much sleep over it. Nevertheless, if you’re faced with this, it’s one of the most important decisions you’ll ever make. If this…
CHD books for your heart warrior and heart family
After the shock wears off, and you gain acceptance of your child’s CHD diagnosis, you might want to learn anything and everything you can about congenital heart disease and defects. Check out these CHD books for your heart warrior and family to help everyone gain a better understanding of Congenital…
How do you decide?
A heavy decision How do you decide? How do you decide…? How do you decide who to let slice open your infant’s chest? How do you decide who to let mar their perfectly soft skin? How do you decide who to trust to stop their beating heart? How do you…
Becoming a heart mom: Pregnancy edition
September 10, 2021, the day I became a heart mom, 25 weeks into my pregnancy, is etched in my brain forever. “There’s something not quite right with your baby’s heart” are words no mom-to-be is prepared to hear. No time is a good time to find out your baby has…
The day my life changed: my baby’s AV canal defect diagnosis
Only a little before my third trimester, a high-risk doctor handed me his business card and wrote the AV canal defect diagnosis on the back. He had discovered a large hole in the center, of my baby’s heart, which he suspected to be an AV (atrioventricular) canal defect. From the…
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