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…
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…
My jaw dropped the first time I saw the feeding tube supplies delivered to my front door. And then I learned it was only box 1 of 2. Tube feeding at home is a great option that allows more people to live their lives more fully and freely. For those…
At first, I was freaked out by the idea of having to feed my daughter through a tube. I knew nothing about tube feeding, it was all so foreign and scary. And that’s just it. It was all new and different and I was uneducated about feeding tubes. It’s easy…
NG tubes – love ‘em or hate ‘em – sometimes they are essential for a baby. If you have an NG tubie baby, you likely have or soon will run into a clogged tube. They are thin so it is not uncommon for the tube to clog on occasion. You…
I first learned how to tape an NG tube from pediatric cardiac nurses while we were inpatient after our daughter’s first open-heart surgery. Due to several factors related to her Congenital Heart Defects (CHD), she was reliant on an NG (nasogastric) tube for sustenance for her first 8 months. During…
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…
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…