Friday, January 20, 2012

First appointment with the cardiologists.

        The cardiologists confirmed Will's diagnosis today after our echocardiogram. While I was very much hoping for them to tell me it was a mistake, we were fully prepared for this situation.
        All things considered, most of the things I heard today were good. First, she explained what exactly was wrong with William's heart. In layman's terms, his left ventricle is almost nonexistent, and his aorta was very small.
        However, the rest of his heart looks very strong and everything else looks normal. His right ventricle in particular was beating very well, and looked perfectly developed, which is a VERY positive sign. She pointed out a hole that leads into the right ventricle, which was very big. She said this is really great, because often the hole can be small or closed, but his looked to be the perfect size.
        Fortunately, because of this, he is a good candidate for the reconstructive surgeries (this is excellent news.. I won't even go into the other options.) They said they are confident the Norwood will be a success, as he has no additional risk factors. There was no hesitation there, and this was a big relief to me. One of the doctors estimated an 85% success rate (the highest we have heard so far), and said they do an average of 2 Norwood procedures a month.
       They gave a lot of details about the procedures, and what will happen right after he is born. Also, a timeline of the procedures was reviewed. We knew a lot of this information already from the research we had done, and all of it matched up.
       Otherwise, Will is measuring at 15 oz, right in the 50% percentile. So he is growing very well, and everything else is looking healthy. He was much sleepier (and therefore more cooperative) this time. But he did give us a cute wave, and a few good kicks.
      On a personal note, the doctors relieved a lot of my worries. For one thing, they saw no reason why I wouldn't be able to hold him (after he is hooked up to his IVs and other things), before he was transported to Children's.
      They also said that while he is at Children's, he will have a private room in the NICU, and Jared and I will be able to stay with him 24/7... sans the surgery. They have pull out couches for us to sleep on. He will also be allowed to have visitors (pack your bags!) at any time. These were two of my biggest concerns.
       Another bit of good news for us, is that I will be able to remain in Nashville much longer than anticipated. I will even get to go back to Dr. Felix for basic check-ups, as long as I am in contact with the high-risk OBs in Cincinnati.
       At the end of the appointment, the doctor said she was sorry to have given us bad news. I told her that we already had received the bad news. She actually had given mostly good news. It is so amazing at how our perspectives have changed in these past few weeks. Who knew that I could consider a heart surgery good news... or a private room for a month in the NICU. It is what it is, though, and I do consider all of the things I heard today very comforting.
       We want to thank everyone for the continued thoughts and prayers. I realize in times like these it can be difficult for all parties, because nobody know what to say (that includes us). Just knowing that Will has so many supporters means a lot to us. I have saved every card he has received, and I can't wait to show him some day how important he is to the world, and how many people care so much about him. I hope that you all know how important you are to us, as well. Thank you.


  1. So happy to hear you received comforting news today. It sounds like you and baby Will are in really good hands. We will all continue our prayers, thoughts, love and support for all of you. Please know you can call me anytime, even if it's to talk about nothing in particular. Lots of love to all of you!

  2. It's good that his weight is so high. HLHS babies do better when they weigh more. Lauren weighed 7 lbs 11 oz and we think it really helped her out! As long as they don't have other complications HLHS babies are doing very well these days. I have heard percentages as high as 95% success to age 5 for uncomplicated HLHS babies. It would be nice if the success rates were more updated, though, for older ages.