For those of you I have talked directly to, for those of you who follow me on facebook, and for those of you who just don't know, here is an update on Holly... from the beginning.
The day after Holly was born the doctor was doing her usual check up - ensuring that everything was in tip top shape to send her home with us. While listening to her heart, the doctor heard a murmur. She told us this is quite common, that many babies have this murmur and that it usually clears itself up. To be on the safe side, the doctor asked us to stay another night. We did. Upon a second evaluation the next day, the murmur was still heard and, again, to be on the safe side we were sent to St. V's to have an echo-cardiogram performed. So we packed up our hospital room, drove an hour to our appointment, sat there for two hours while over 200 pictures of Holly's heart were taken. Then finally we were on our way to home a family of five.
A few hours later the cardiologist called.
Holly had a PDA, patent ductus arteriosus. Basically it is a hole in the heart that helps with blood circulation before babies are born. Every baby that is born has this hole. In most cases, it closes a few minutes after birth. Sometimes a few hours. Occassionally a few days or weeks or even months. By the time the cardiologist called he was certain that the hole had all but closed and was not a concern. However the echo picked up something else. Holly also has a condition called Pulmonary Valve Stenosis - a narrowing of the pulmonary valve which means the heart has to work harder at pumping blood to the pulmonary artery (which takes blood to the lungs).
On a scale of 0 (meaning there is no problem) to 70 (requires immediate surgery to fix the narrowed valve), Holly was a 35. The cardiologist explained that she was in no immediate danger and that this condition has three scenarios. 1. It gets better. 2. It stays the same. 3. It gets worse.
So what do we need to do for Holly?
Wait. Wait three months, repeat the echo and go from there.
So three months later we head back down to St. V's and repeated the echo.
Once again he called back that very day to let us know that the stenosis has not changed and that we will need to wait another three months and have the echo repeated again. However the echo reveled that the PDA, the hole, had not closed yet. Still common but now will be on the doctors watch list.
Another three months later we make the drive to the hospital and repeat the echo.
This time there was a change when the cardiologist called. As far as numbers go, Holly was still at the 35 midline stage however the valve has begun to thicken. He wasn't entirely sure why, it is something we'd have to wait and see what is going on at the next echo. And we learned that the PDA still had not closed. Still semi-common but again we'd have to wait and see what the next echo has to say. But a decision to do something would have to be made if it doesn't close soon.
So we waited another 5 months and repeated the echo... again.
This time when the echo was performed Holly needed to be sedated. She was getting too big, moving to much, didn't have enough patience while the 30 minute procedure was performed. And WOW. I can tell you that putting medicine up a child's nose is NOT an easy task. She fought with every last ounce of energy she had.
As expected, the cardiologist called us that night. Problem one. The PDA was still open. At this point in time, this hole needs to be closed. It is not a life threatening hole but with the extra blood flow from this hole she will tire more easily as essentially her lungs would have too much blood in them. He explained that a coil would be place in the hole to help pull it shut. Its a simple out patient surgery. No worries.
Problem two. The valve, which had begun to thicken before, was thickening even more. This potentially could be from the extra work it does due to the extra blood flow from the PDA. The only way to know the cause of the problem is to first fix the PDA. Again he explained that it is not life threatening but that we should get this done ASAP. As in May or June. However, the first consult day the surgeon had was July 16th. We'd just have to wait it out.
Finally the big day came -the meeting with the surgeon. Even through Holly's blood curdling screams the surgeon was able to hear the murmur which was so pronounced he said it sounded like a washing machine in her chest. A simple coil fix would not be an option. He showed us a picture of a plug (to me it looked like a sewing machine bobbin) that he would place in the hole and hold it there until enough blood had flowed through a mesh part in the middle that would then being to clot and hold the plug in place and he can let go. At that point in time he will evaluate the pulmonary valve. If he feels that the thickening was caused by too much blood flow, he will then take a balloon into the valve and blow it up to stretch the valve to a more normal size and our days of echos and cardiologists will be over. If he feels there is another underlying issue for the narrowing of the valve, then he'll leave it alone and we'll continue our wait and see game.
Now what do we have to do? Well... we have to wait. I called to schedule the surgery that same day but they did not have the anesthesia's schedule. I gave them the dates that did not work for us for August and September and now the ball is in their court. I sit and wait for them to call me back.
But its a good thing we have all this waiting time on our hands. It gives us a chance to file financial paperwork, apply for the many help options out there and wait to hear back.
Until then, life continues as normal.