Yesterday we had a follow up with the Duke pediatric cardiologists and the maternal fetal medicine folks to check the status of the baby's heart. Things are unchanged. Her heart is still in complete heart block and they were certain it would remain that way. Some good news is that the heart is structurally fine. It appears strong and well put together. Because the electrical impulses from the top half of her heart do not communicate with the bottom half, the heart has developed two heart rates. The bottom half of the heart beats very slow. The big question in this is whether her heart can sustain this until she is big enough to be delivered and given a pacemaker. The doctors have seen this scenario go both ways. We go to Duke every week so they can monitor whether the heart appears to be struggling. The major concern is that it will not be able to keep up with her growing body. Every week they are looking for signs of enlargement or fluid around the heart. Yesterday (24 weeks gestation), she showed no signs of heart failure.
Right now, her heart seems to be keeping up. It is working incorrectly, yet effectively. If she chugs along until term (or close thereto), her prognosis with her pacemaker is good. Kids and adults live long, normal, active and athletic lives with pacemakers. Sometimes the heart rate can even improve at birth so that a pacemaker is not immediately necessary. Sometimes babies must be delivered in order to receive immediate pacemakers. This is a rare condition. Although the doctors know how to treat it, there's just not a lot of data. One thing we can say for certain, if she comes to live among us, she will be one tough nut. We can also say for certain that this is wholly and completely in the Lord's hands and we must resign control. We know that He will provide for our every need as we walk this journey with her.
There is hope in the fact that her heart is strong and she appears to be tolerating this well right now. There is hope in her prognosis if she makes it to term. We are in continual prayer. We return to Duke next Wednesday. Thank you for all of your prayers and support.
Much Love,
Anna & Drew
No comments:
Post a Comment