Yesterday morning we made the drive once again to Austin to see Dr McCoy, Abbi’s pediatric cardiologist. It had been three weeks since our first visit with her, and it was time for our follow up ultrasound. The drive usually takes about an hour and 15 minutes with the best of driving conditions, but given that our appointment was at 10:00 in the morning, we got stuck smack dab in the middle of rush hour traffic.
This is obviously not the view of I-35 in Austin from inside my vehicle, but it may as well have been. Luckily, my terrible “lead foot” driving had gotten us to the city with enough time to spare that we weren’t late for our appointment, but not much! We walked into the office with just enough time for me to sign in and pee before they called us back.
We walked to the room with the ultrasound machine, and Matthew helped himself to the chair at the end of the exam table while I climbed up on top of it, trying desperately to maintain some semblance of gracefulness…
I grunted and groaned like a wounded wildebeest as I hauled my big ass up and onto the table, and then huffed and puffed as I tried (failing yet again) to get into a somewhat comfortable position. We started the scan out on my back, which was terribly uncomfortable since my uterus is now big enough to compress the arteries in my legs, making me a bit light headed and a tad nauseous. But within a half hour or so she had me roll first to my right side (more huffing and puffing), and then to my left side which of the three, was the most comfortable position. We finished the scan once more with me on my back; the whole scan took about an hour I would say.
As I sat up and cleaned the ultrasound gel off my belly (and my shirt), Dr McCoy retired to her office to make the official measurements she needed of the images she’d obtained from the scan. I dragged myself off the exam table with my loving husband’s help, and waddled to the potty to pee while she was gone. We then took a seat on the love seat provided and anxiously awaited her return.
Fortunately, we didn’t have to wait too terribly long. Dr McCoy came back in with a blank sheet of paper and a pen. I assumed that it was to draw us yet another diagram of our daughter’s heart defects, as to make them easier for us to understand. She sat down and before she ever started to speak — she started to draw.
She explained that everything she had seen three weeks earlier, she had also seen today. She had been able to double check and confirm her diagnosis; Abbi does indeed have a DORV (Double Outlet Right Ventricle), a VSD (Ventricular Septal Defect – a hole in the ‘wall’ that separates the left from the right ventricle), and pulmonary stenosis (a narrowing of the pulmonary artery valve); the pulmonary artery is also moderately smaller than it should be. She also explained that she had not seen any worsening of these conditions, and that Abbi’s heart had indeed grown in the three weeks between visits! Finally, some good news! This might just work out for the best after all!!
At our last visit, Dr McCoy mentioned that she was a bit concerned that the mitral valve (the valve that separates the upper and lower halves of the left ventricle) might be too small to be functional, but (like usual) Abbi’s terrible positioning had made it hard to see the mitral valve clearly enough to get a good measurement. Due to this, she spent a great deal of time scanning the mitral valve at yesterday’s visit. I was not surprised a bit when she told me that once again, Abbi had decided not to play ball, and had been in a terrible position. She was able to determine however, that although it was still mild to moderately smaller than normal, she believes that it IS big enough to be functional!!
She then tells us that even though it is big enough to be functional, there are some abnormalities within the valve itself that may prevent it from functioning properly.
Evidently, the valve isn’t opening all the way. While in utero, babies are only having to circulate about 10% of their oxygenated blood from their lungs to their hearts since the vast majority of it comes from me via the umbilical cord. At this point, Abbi’s mitral valve is working well enough to circulate the 10% that’s flowing through there. That’s not the issue. The issue arises after birth when the umbilical cord is cut, she begins to breathe air through her own lungs, and will have to circulate 100% of the oxygen rich blood through that valve. Dr McCoy isn’t sure that the mitral valve can handle that kind of pay load.
While she can see that the valve itself is abnormal, she STILL couldn’t see well enough (due to Miss Priss being difficult and not moving her tiny butt into a better position), to be able to give a firm diagnosis on which abnormality we’re dealing with. So basically, she can see that it is an abnormal valve, but she can’t get a good enough look at it to be able to give us a reason as to why it’s abnormal, ya know?
So can they fix it?
Maybe. Some issues with the valves they can repair, some they can’t. And unfortunately because we can’t get a good enough look at it to know just exactly what’s wrong with it, we have no idea whether or not the valve is salvageable.
A few hours after she’s born, Abbi will get her first real echocardiogram. Yes, she’s had several while she’s been inside my belly, but it’s different; while she’s in utero, the doctors have to use the ultrasound probe to look through my belly, through her bones, and into her heart. Once she’s born they’ll be able to get a MUCH better view of what’s really going on inside her heart, since they will only be looking through her chest instead of both of ours.
So what happens if the valve can’t be repaired? There is a procedure (she told us what it was called but to be honest, I can’t for the life of me remember what it was) that can be performed that would essentially re-route Abbi’s entire heart to work off the right ventricle. It’s a much more massive procedure that would place many more restrictions on her life as she gets older (there would undoubtedly be athletic-type things that she wouldn’t be able to take part in). Dr McCoy hasn’t really gone into a lot of detail about the procedure (ie, the surgery, recovery time, restrictions, etc), mainly because until we know exactly what we’re dealing with in regards to the mitral valve, there isn’t really a reason to do so. When we asked her what the odds were in her professional opinion that we would be facing something like that, and she told us that in her opinion they were close to 50/50.
And like everything else, we won’t know anything more until after she’s born. Everything is riding on what the echocardiogram Abbi will get a few hours after birth will tell us. Whether or not the mitral valve will work well enough, how well she’s able to keep her O² saturation up, and how soon she’ll need to be transferred to Dell Children’s Hospital for her first surgical procedure — all of this is riding on how she does AFTER birth. I feel like I’m driving blindly on the road towards the birth of my little girl and there’s nothing that I know for sure. Nothing concrete. Nothing is known, everything at this point is still unknown.