Our appointment went well yesterday with the cardiologist. We are still looking at a ventricular defect in Luke's heart (the right one being deficient and the left being functional). The great news about that is the left ventricle in a normal heart should be the dominant one and actually does most of the work. A much scarier scenario would be if the left were deficient.
Dr. Stefanelli starts by telling us that what he's seeing is very, very rare. Like 1 in 10,000,000 rare. Of the 400 diagrams of heart defects they have, he doesn't have one that specifically matches our case. He had to find the closest one and then draw what's different about Luke's heart. The crazy and good part is that the rarity in our case is a positive. A lot of this kind of defect has the aorta and pulmonary artery reversed. In our case, the aorta and PA are in the right spot (the aorta pumping to and from the left ventricle). So, even though this is extremely rare, he made it clear that we shouldn't equate that with complexity or severity. It's actually a bonus in our case, simply because we may not have some of the other complications that go along with the aorta and PA in the wrong places.
So, some things we learned:
- If no other complications arise between now and Luke being born, Luke will be able to wait six months for his first surgery. And his second would be at 3 years. That is definitely what we are praying for right now, that he would be able to wait and only have 2 surgeries. The first surgery is about a six day stay in the hospital and the second at 3 years is about a 9 day stay for recovery and to watch him. I can't imagine trying to keep a 3 year old resting for nine days!!! We're so thankful we'll be at Children's hospital. Dr. Stefanelli said he used to send patients with this kind of defect to have their surgery at Stanford, but he's found children's to be as good, if not better, and much closer!
- There are 3 things he's watching for as Luke's heart grows even more and right now they all look really positive (one thing is an obstruction of the aorta and another is the diameter size of the aorta compared to the diameter of the pulmonary artery — they should be fairly similar in size. If not, they have to basically band the aorta to balance out blood and oxygen flow). If for some reason, these complications arise (and we may not know until Luke is born) he would have to have a surgical fix at about a week old. The Dr. assured us this is a simple and easy procedure with less than 1% risk, but we hate the thought of having to put him in surgery that early. And even though it's a standard procedure, the time in the hospital will be longer, just because he's a newborn. Please pray that he would not have to have that first surgery! In the coming weeks, Dr. Stefanelli will have a fairly good idea if that one will be necessary, but he won't know for sure until Luke is born and they can actually get pictures of his heart (not through me). We are feeling positive, tho, that everything looked really good as of yesterday.
- The other good news we got yesterday is that Luke's heart rhythm is perfect, he's growing great, and there is no sign of fluid or stress on his heart. That's great news because he's doing well and there's no expectation that we would have to deliver him early. He still feels confident that Luke will be able to be delivered naturally, that he'll be able to breast-feed and that this is an isolated problem, with no linkage to anything developmental or chromosomal. Again, positive news!
So, bottom line is that we have a very special kid entering our lives! We'll be able to tell him he's 1 in a million and mean it! We are so thankful for this doctor's office and feel like we're in such good hands.
Dr. Stefanelli already has a surgeon in mind for us up at Children's, so we'll get to meet him before the birth.
What a journey we're on, one that will keep us dependent on the Lord and on our knees. But God is faithful to His promises and we have seen that so clearly these past 2 months. We have felt peace and strength when we least expected it, and He is continuing to unite Rog and I as husband and wife to take on the awesome task of raising this little boy.
