I don't know how to begin telling about today's cardiologist appointment other than to say that Lily does have a VSD. As I said earlier, this is basically a hole in the heart that allows blood from one chamber to enter into another chamber that it's not supposed to enter. I guess in "normal" children who have one, this hole closes by itself. In children with T-18, it doesn't and causes congestive heart failure. As scary as this sounds, the doctor has given us hope.
The cardiologist puts VSDs into one of three categories: big, moderate, and little. Lily's is big, but it acts moderate. It acts moderate for two reasons: first, it is quite high up in the chamber wall; second, tissue has already begun to form (he believes it began in utero), and he believes it has the potential to continue "growing" to close the hole.
Once again, we find ourselves not knowing--the main characteristic of the pregnancy. Boy does this little girl have something to teach us! As always, we are listening to her. We have chosen comfort care for Lily. That means we won't pursue aggressive measures to treat this VSD if it does not close on its own. Our cardiologist advocates the same measures. It was all I could do not to cry when he told us how once, when he was younger, he made a family's life miserable because he choose aggressive means for their child. There was so much regret in his voice, and to think that this man carried that burden on his shoulders was heartbreaking. As cruel as some of you may think this choice sounds, I once again feel that we were led to this doctor. We had changed our appointment from yesterday, and that meant we were to see a different doctor, the one we saw today. It was so comforting to hear him say that Lily's VSD could be a blessing from God due to the tissue and its position.
So it's very possible that new meaning has been added to my definition of "miracle." I'm constantly looking!
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I wish I could have come by today!!! Lilly knows what is going on and she is fighting hard. DOn't think that it's cruel to choose comfort care for her tiny little body. No matter what we decide to do medically God has it ALL in His hands and His timing. Just remember the day you had her, and the doctors came in and told us that she probably wouldn't live through the night. GOD IS IN CONTROL...Hope to see you soon. Lots of love.
ReplyDeleteLeeAnn Watson
I know all about the torture of deciding between comfort care & aggressive intervention. Fortunately, or unfortunately, we never had to ultimately make those decisions. God led you to this decision, He led you to this doctor, and in the end, He already has the number of Lily's days planned out, whether that be 1 more or 10,000 more.
ReplyDeleteIt IS miraculous that Lily's VSD may be closing up. Keep on fightin' little one!
You and Dave have made all the right decisions regarding Lily! God has given you the wisdom to make those decisions because you have put you trust in Him. Don't ever forget that. You have no reason to ever regret anything. God has led you on this journey since day one! Now, our prayer is that is defect will correct itself.
ReplyDeleteLove to you all!
Lisa Eaves
Lily knows that EVERY SINGLE decision you have made is out of pure love ... I am sad she has a VSD, but happy that it is acting moderate and trying to close on it's own! She truly is a miracle baby and is SO lucky to have you as her mom. Thinking of you guys and praying for you all!
ReplyDeleteLove
Laurie
Jill, I was so hoping that you would come home and say "nothing found." But I knew that was probably not likely.
ReplyDeleteUntil April we thought Annabel's was gone. We found out recently it is there and it is large. Like Lily it has tissue over it which is making it work in her favor. Congestive heart failure is not always what happens. I respect your decision very much. I think the more time you spend with Lily (the longer she is on earth with you) your meaning of comfort care will change. I have seen it happen with many families and I know my definition of comfort care has drastically changed. I am glad you like your dr. as this is so important. You will know when you are to do something for her. The Greatest Physician will let you know through Lily and your prayers. Sometimes I forget to go there and try to handle it all by myself.
So happy that you are her mommy and daddy.