Last month, shortly after celebrating the fact that Dylan had finally passed her newborn hearing screens, we were told that the heart murmur they had heard at her 1-month exam was still present at her 2-month and we were referred to a cardiologist (so we could "close the book on this"). In high school, I was sent to a cardiologist for what turned out to be an innocent murmur, and- positive that's what Dylan's was too- I didn't bother to worry.
Only, at the cardiologist, we (or rather, I, as I figured it was nothing and went without support) learned that Dylan's murmur was not innocent but in fact a heart defect called a VSD (Ventricular Septal Defect), which is a hole between the ventricles.
If you look on this picture that her doctor made for me while she was explaining everything (which was genius, by the way. I never would've remembered everything she was telling me, especially considering I was dealing with yet another diagnosis...) you can see the location of her hole, where the red arrow is going from the left ventricle into the right.
Nothing can really prepare you for the moment that someone tells you there's something wrong with your kid. It's like everything comes crashing down but, at the same time, you feel numb. In some sort of dream. There's a loud static static in your ears and your heart somehow feels way too big for your body. It pounds. You nod. You pretend to understand everything that's being told to you, accept pamphlets and instructions and referrals.
This is the second time I've been in a room and received a diagnosis for one of my children: The first time, at Boston Children's when they told us that Ollie had Hemimegalencephaly, I can remember feeling completely terrified and at the same time like it wasn't really happening.
This time was similar, but because this condition is much more common than Ollie's, the doctor had many more answers for me. Much of it was good news: Dylan doesn't show many of the symptoms of this defect (such as feeding trouble, irritability, heavy/troubled breathing, and even- in some cases- failure to thrive).Also, while her hole is not considered small (hers is 3-4 mm), it is not large either. Her doctor told me that in most cases, the hole closes up on its own without surgery, and usually in up to 24 months.
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| Dylan did awesome through the EKG and ultrasound, and didn't even cry when the nurse removed all of those stickies! |
So, until that hole does close up, it is our job to keep this little girl healthy, as any cough or cold will make her lungs work harder and a fever will put a bit more strain on her heart. Easier said than done with two school-age kids in the house, but I'll do my very best.
Also, because her heart & lungs are working a bit harder, Dylan burns more calories and therefore has a more difficult time gaining weight. When we saw the Cardiologist last month, she weighed 9 pounds, 6 oz. and I was given instructions to just help her gain weight. She was also put on a low-dose diuretic to help wring fluid from her lungs.
Two weeks ago, we went for a weight-check at our pediatrician's office and she weighed-in at 9 pounds, 15.5 ounces, which brought her down below the 5th percentile. She's still moving away from her curve, so it was suggested that we try formula. So far, she has been refusing it, but I still try everyday.
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| Just look at that spike! |
So because we're maintaining her weight and she's still doing well, I'm feeling very positive. Much better than when she was originally diagnosed last month, that's for sure. We deal with Ollie's condition day by day and we will do the same for Dylan. Maybe in a year or two there will be nothing left to deal with at all!
And so, I'll end there for now, because I have to go feed this little girl! Speaking of- have any of you ever made Lactation Cookies? I made a batch yesterday and they made my stomach feel like I ate pop rocks (the Brewer's yeast?) Also, no verdict on any increased production yet... But I'll let you know!
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