Scott and I headed to Children's Hospital today to get Puck his second echocardiogram. The tech was nice if not a bit aloof and the meeting with Dr. W afterwards really helped to clarify what was wrong with Pucks heart. The doctor said that the two lower chambers of the heart that pumps blood to the body (left side) and to the lungs (right side) should be closed off from eachother. As we all know Puck's aren't. I was under the impression he only had two holes in his heart but the doctor confirmed today that there are literally too many holes to count (they call this a "swiss cheese" Ventricular Septal defect for obvious reasons). Apparently it wasn't evident how many holes there was when the first ultrasound was performed. The doctor then went on to explain that this was due to the pressure in the lungs still being high enough to mask what they call the "shunting" of the blood from one side to the other.
He explained that while in the womb the pressure in the lungs is equal because they are in water and aren't breathing air. A few weeks after birth the pressure in the lungs begins to drop and this is when most babies with a moderate to large VSD will begin to present with problems. The first symptom usually being rapid breathing (which is what Puck was rushed to the hospital for). The doctor explained that blood is lazy and will go where it is easiest. So instead of being pumped up through the aorta to the body, the blood is being squeezed through the holes from the bottom left chamber into the right and back through to the lungs. Essentially Pucks lungs were getting twice as much blood than they needed . This in turn makes the lungs work harder because now they are the equivalent to a wet sponge, essentially soaked in blood. So Puck was having to draw in breaths with lungs that were much heavier than normal which resulted in little to no weight gain in the first few weeks of his life (in fact he lost two ounces before they put him on the diuretics) due to all the calories he was burning in order to just draw a breath.
The diuretics drain the excess fluid off the lungs and treats his high blood pressure enough that Puck no longer has to work so hard in order to breathe. Now that he is breathing normally he is gaining about an ounce a day. And we have hope that as his heart grows the holes will close over on their own without intervention. This is really good news but the doctor cautioned our optimism by saying that Puck's lungs still have not reached their lowest possible pressure. This won't happen for another month. It is at this time that we will know for sure whether his congestive heart failure can be managed with Lasix (diuretic) alone. If it can't be, he said the first step is to add another medicine (he didn't say what). If that also failed to help Puck thrive then they would supplement my breast milk with a high calorie formula. If that failed to work then the next step would be a NG tube so he wouldn't need to expend any energy at all to eat; and if THAT failed then heart surgery would be his only option left. Usually if open heart surgery is needed it is performed between 3-6 months of age.
So that's the news. He's gaining weight for now. If he stops gaining, or begins to lose then we will have to add more medicine; and if worse comes to worse then open heart surgery will be performed in a few short months.
I hope it doesn't come to that. But if it does I have been told I can rest assured that it is the most performed and successful heart surgery done on infants. Somehow this does little to assauge my anxiety but at least I know there are lot's of options and lots of solutions.