Last week doctors discovered 2 holes in Claira's heart. One is in the upper chamber, ASD, and does not present any real danger to her heart. The other is in the lower chamber, VSD (ventricular septal defect), and is a cause for concern to the doctors. Click here to read more about VSD. In fact it has caused her to go into congestive heart failure. She's taking two medications to help with this. One is a lasik that is going to help reduce the fluid around her heart and lungs and the other (Digoxin) is to help her heart work better in spite of the holes.
If the hole is small enough it usually doesn't require surgery as it will close on its own within 2 to 3 years. Claira's holes are slightly larger and may never close on their own. That in itself is not necessarily a problem, because they may shrink to a small enough size that she will be able to live a normal, healthy life. What is a problem is her weight.
Claira started life at 9 pounds ... my biggest baby... and 2 1/2 months later is only a pound heavier. (This pic is at 1 month ... I miss those cheeks!) At a minimum she should weigh almost 12 pounds right now. We can't seem to get her to eat more than 2.5 ounces at each feeding. I'm pumping about 4 to 5 times a day so that we can fortify the milk with formula. Typically formula or breast milk has 20 calories. The mixture she's getting is 24 calories. If her weight does not come up she will require surgery. She'll sleep up to 10 hours at night if I let her. I believe that' mostly due to how tired she is from her little body working so hard to perform at a "normal" level.
I've been very frustrated with our family doctor and have felt that my different concerns were falling on deaf ears. Sunday I had to call the on-call cardiologist because she had just thrown up everything she ate as well as the medicine. I was worried I would need to give her more. He was wonderful to talk to and was shocked that her doctor wasn't doing anything to find out more on her lack of weight gain! We now have an appointment with a pediatrician in Tulsa that the cardiologist hand-picked. I'm thrilled and anxious to get started on tests that will help get us closer to a healthier baby! She's been throwing everything up after her first bottle every d
ay this week.
The good thing about this little sweetheart is that she's so happy and alert. She loves to be talked to ... as you can see in the pic. Her color is still good. At this point our biggest struggle is waiting. Waiting to see if she gains weight and waiting to see if the holes start to close on their own.
If the hole is small enough it usually doesn't require surgery as it will close on its own within 2 to 3 years. Claira's holes are slightly larger and may never close on their own. That in itself is not necessarily a problem, because they may shrink to a small enough size that she will be able to live a normal, healthy life. What is a problem is her weight.
Claira started life at 9 pounds ... my biggest baby... and 2 1/2 months later is only a pound heavier. (This pic is at 1 month ... I miss those cheeks!) At a minimum she should weigh almost 12 pounds right now. We can't seem to get her to eat more than 2.5 ounces at each feeding. I'm pumping about 4 to 5 times a day so that we can fortify the milk with formula. Typically formula or breast milk has 20 calories. The mixture she's getting is 24 calories. If her weight does not come up she will require surgery. She'll sleep up to 10 hours at night if I let her. I believe that' mostly due to how tired she is from her little body working so hard to perform at a "normal" level.I've been very frustrated with our family doctor and have felt that my different concerns were falling on deaf ears. Sunday I had to call the on-call cardiologist because she had just thrown up everything she ate as well as the medicine. I was worried I would need to give her more. He was wonderful to talk to and was shocked that her doctor wasn't doing anything to find out more on her lack of weight gain! We now have an appointment with a pediatrician in Tulsa that the cardiologist hand-picked. I'm thrilled and anxious to get started on tests that will help get us closer to a healthier baby! She's been throwing everything up after her first bottle every d
ay this week.The good thing about this little sweetheart is that she's so happy and alert. She loves to be talked to ... as you can see in the pic. Her color is still good. At this point our biggest struggle is waiting. Waiting to see if she gains weight and waiting to see if the holes start to close on their own.
2 comments:
Love the photo's! Just checking to see if it allows comments.
Tom and Susan,
Jesse and I are always here for you, just let us know what your needs are. The kids are in good hands after school, don't worry about them, and meals will be coming for the next 2-3 weeks Monday-Thursday. Just take care of that little one.
Miriah
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