“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…
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…
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…
My baby can eat while sleeping, what’s your baby’s superpower? Tube feeding comes with many challenges. We have to have fun with it wherever there is an opportunity! Feeding your baby with a tube is likely not how you imagined your baby’s feeding journey. Me either. Due to medical challenges,…
Five months into our tube feeding journey, we switched to continuous, which brought some much-needed relief overnight as we were running on empty. Continuous feeds are just as you might imagine, feeding continuously – nonstop. My daughter was in interstage awaiting her second open heart surgery. We were struggling with…
What would you say if I said a feeding pump hanger is one of the most useful baby feeding accessories? That is if you have a tubie baby. Honestly, I wouldn’t have survived this journey without it. For her first 8 months, my daughter had to primarily feed through an…
When awaiting your baby’s arrival, you might think of bows, hats, and tiny clothes to dress and accessorize your baby, not patterned medical tape. Life doesn’t always happen how we plan it though. Sometimes unexpected things happen. I did not anticipate and plan for my daughter to tube feed. You…
To set the scene for you: my daughter’s second open-heart surgery was canceled, she was interstage in heart failure, losing weight and we needed to buy more time. After conferencing with several doctors, we decided to try an NJ tube. For the previous 6 months, we fed her through an…
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…
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…