Wednesday, October 12, 2011

Her Heart

Of all the issues that Juliana deals with, her heart defect is one that I haven't really worried about too much. She has a ventricular septal defect (VSD). It's considered to be on the small side at 2-3mm. There may also be a couple of other very, very tiny holes that are too small to measure. These holes are at the bottom of her heart in the muscular region which is apparently a good place to be. In the past her cardiologist has told me that heart surgery probably won't be needed because the holes are so small. Even if they do not close, her heart will grow bigger and the size will become increasingly insignificant.

Today we had a check-up to see if there had been any change in the last three or four months. Unfortunately, the VSD is still there. Everything else looked good, except that this time the doctor mentioned that Juliana has red blood flowing to her lungs. Red blood should be flowing back to the heart and blue blood should be flowing to the lungs for oxygenation. Apparently this can be considered par for the course with VSDs. This is one explanation that I found:
Blood is crossing through the VSD and going back to the lungs instead of out to the body.  This will cause the heart and lungs to be less efficient at circulating blood.  Since the heart has to work harder to get the correct amount of blood out to the body, there can be concerns with enlarged hearts or changes in growth since the heart is taking up more calories.  
And another:
When there is a lot of blood going back to the lungs it causes over circulation of the lungs and then overload of the left ventricle, as there is more blood returning from the lungs into the left atrium, into the left ventricle. This is what eventually causes heart failure - the heart can't keep up with the volume. It can also cause scarring of the blood vessels in the lungs which can lead to problems later on. That said - that's not common, because if there's that much over-circulation, surgery is normally performed to correct it.
This all sounds scary but the doctor is "cautiously optimistic" that everything with her heart will be ok. So far this seems to be the nature of Juliana's birth defects - they are there, they are obvious, they are concerning, but they can be dealt with. We will continue to see cardiology regularly (every few months) and the doctor will keep an eye on this in case it does not improve or gets worse. He also mentioned the possibility of medication but said that he is not the type who is quick to prescribe (good policy in my opinion).

It's hard to say what sort of impact the VSD may have had on Juliana. I do know that for the first two or three months of life she had a high respiratory rate - she was called "comfortably tachypnic." The VSD caused or contributed to this. I also believe that it would be quite difficult to eat if you were breathing very quickly. Add in reflux and digestive pain, and forget it - eating wasn't happening. Heart babies also tend to lack energy. While J is very energetic these days, in her first few months she slept All. The. Time. It was very concerning to me because it *was* excessive and far beyond normal newborn sleep.

While today's visit did not bring hugely bad news it was still very disappointing to me. I was hoping that the hole had decreased in size or that the doctor would want to see us less frequently. I hate to hear that there is a possible concern even if he is "cautiously optimistic" about it.

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