Ventricular Septal Defect

When Lilly was first born, the pediatrician that came to check her out the next day heard a murmur. The murmur seemed to be gone a few days later so we weren’t worried.

At Lilly’s 2 month appointment, her pediatrician heard the murmur again so, we were referred to a pediatric cardiologist to look into it further. The nurse that took Lilly and I back performed an EKG and then the doctor later performed an ultrasound.

Seeing Lilly get the EKG and ultrasound was insane. She’s just so little 😦 I could barely see her under all those wires, and I just kept thinking about how I didn’t have my first ultrasound until I was 19. I am incredibly protective over Lilly and a big part of me wanted to yell at the doctor to just leave her alone and to stop touching her. A bigger part of me, however, wanted him to do everything he could to find the problem. Luckily, the doctor was able to give me the results right then and there.

Lilly has a Ventricular Septal Defect – a hole in her heart between her right and left ventricles. The hole is 4-5mm which is considered medium-large and is allowing too much blood to pass between both sides. I was 1,000% expecting the cardiologist to tell me everything was fine (“what murmur?”) and it was almost an out-of-body feeling when I heard that my baby actually has something wrong with her. Because the hole isn’t small, Lilly’s been experiencing symptoms such as trouble eating and breathing. Eating is already exercise for babies, but her heart and lungs are having to work even harder which tires her out a lot. She needs to take frequent breaks while eating and can’t get much in her belly at one time. Because of this, she hasn’t been gaining a lot of weight and she’s on the low end of the growth curve right now. As far as Lilly’s breathing, it is very fast since her lungs are having to work so hard. I feel terrible for my baby; I don’t like that she’s having to work so hard to survive 😦 The one good thing I’m holding onto is, the cardiologist assured me this defect is not life-threatening.

Now that we know what’s wrong with Lilly, it’s time to fix it. She is on a medication right now called Furosemide that is basically supposed to help her heart get stronger so she doesn’t have to work so hard to eat. We need her to gain more weight. The doctor told me that this medication is essentially buying time; we’re going to see if her heart will close the hole on its own. If this medication doesn’t work well, there is a stronger one we can try, and if the stronger medication doesn’t work then we’ll need to fix the hole through surgery. The doctor said Lilly has a 40% chance of needing surgery and I’m trying not to freak out about it yet.

As soon as I got home from the appointment, I starting feverishly researching VSD and the surgery. This type of hole is apparently common which was a relief and it seems like most people turn out completely fine. There are two ways that the surgery is performed, one of which is relatively easy with a small catheter they pass through the groin up to the heart to fix it. I’m hoping that if Lilly does need surgery, she won’t need her chest cut open.

So, here’s where we are. Mommy and daddy are worried, but it sounds like Lilly is going to be just fine no matter how this all plays out. My little angel is going to be just fine πŸ™‚

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