Monday, March 8, 2010

Three in 30 Years of Surgery

That is what our surgeon told us was his experience with surgery on babies with Truncus Arteriosus complicated by a valve that is both a leaking and stenoic. She is in the rare category of rare.

Today when the surgeon used the word "stenoic" he referred to the single artery (the turncus) being narrow at the valve. As I understand it stenosis can mean either stiffening or narrowing, so apparently in her case it is narrow not "stiff" as I thought previously. In any event, the stenosis causes the heart to have to work harder to gain enough velocity to push the blood through, and her heart muscle is therefore thickening over time, as would be expected. The leaking valve, well, that is obviously not good either and also strains the heart. So, again, it was stressed, as soon as her lungs are ready, they want to induce and get her stable and then into surgery. She is more at risk now than during surgery, even as far as she has come.


A Surgeon for Gwen!
Today, yes, we met our surgeon - and honestly - I am in awe of answered prayer about how it came about.

The first part was basically clear guidance in helping us make our choice. At our first appointment of the day the sonogopher said something that indicated she assumed we were going with Dr. Spray as our surgeon. I told her we still had to choose and she indicated, that in our case, she really would go with him. So, that was all we needed as we really trusted her assessment of everything. We would request Dr. Spray even as he might be "hard to get".

But, as it turned out, we didn't have to choose. In fact, when I met with my nurse coordinator after the fetal echo, she was sure we had already expressed our wishes when we were here a month ago. According to her, Dr. Spray was our surgeon. We got the guy they explained everyone wants but is hard to get because he travels so much - who they essentially told us not to bother asking for because he is often out of town or booked because he is requested so often. It was so out of my hands I couldn't believe it - I didn't have to do a thing and we are set and Dr. Spray is not leaving town anytime soon. And after meeting him today we are assured that Gwen will be in the best hands. Praise God.


A Clearer Time Frame for Gwen's Arrival Date: Sometime Between Monday the 15th and Friday the 19th.
The Amnio is scheduled for Thursday at 1:00. This means she can be born, if I understand things correctly as early as next Monday! If her lungs are not mature the will use steroids to bump up their development and induce no later than 37 weeks.

The goal is to get her into surgery within a day or two of being born. Of course, that is IF she is stable. It is really impossible to predict, based on her less than optimal valve, how her heart will handle things once the lungs become part of her circulation. There is always the chance that she will need surgery immediately - we pray this will not be the case. There is also a chance that she will need more than a day or two to be stabilized and strong enough for surgery. We pray also, that this will not be the case.

One Last Technical Detail - The Valve Replacements
We learned today that she will in fact NOT have artificial valves used for either artery, but instead they will use a "homograft" - non-living, human donor valves. We are still hoping and praying that her native valve will surprise us all and be "fixable" and usable as the aortic valve, as that is the best case scenario. However, if they must use a homograft, we were pleased to learn she would not require blood-thinners as would and artificial valve (see earlier post). The bad news with a homograft on the aorta however, is that she would need more frequent surgeries to replace it as she grows.

8 comments:

  1. Laura, it sounds like a great update. Amazing how Dr. Spray has been chosen for you all, Gwen is definitely in God's hands. Enjoy these few days in the city before it all kicks into high gear. It will be stressful but when things are that way time tends to fly which I guess is a good thing. Great news about the homografts, Gabe is on his second and doing so well and I can't imagine having a young child on blood thinners, so I'm happy to hear Gwenyth won't need them! Enough for now, get lots of rest!

    Becca Chester

    ReplyDelete
  2. You are in my thoughts and prayers. I love you!

    Aunt Sarah

    ReplyDelete
  3. Laura, I am glad to hear Dr. Spray will be your surgeon. We found him to be extremely compassionate and competent. He put us at ease and we never looked back. I thought of you all day yesterday and will continue to do so each day for the next several weeks/months. It is exciting to hear that Gwenyth will likely be born by the time we're at CHOP next week (3/19) for testing. We'll be praying for you, Gwen and your family. Heart hugs!

    ReplyDelete
  4. Thank God for answered prayer! Sue and I are still praying over the Ob/gyn situation. Can't wait to see how the Lord will answer that prayer!

    ReplyDelete
  5. Praise God! It's awesome to know that little Gwen will be in the most capable hands! We're praying that her valve would be fixable, and that His Hands would be on her delivery and surgery. {{HUG}}

    Brooke

    ReplyDelete
  6. Laura,
    Praise the Lord for He is in control...every step of the way. Thanks for being so great about the updates, we'll keep praying for you all. I'm sure Lillian will do great too, just needs some time to adjust. Lots of love and hugs to you all!

    ReplyDelete
  7. Praying for Gwen and all her specific needs. What a wonderful family God has blessed her with.

    I also have such wonderful memories of the Ronald McDonald house from when I was younger and my sister was so sick. You will be so close for anytime you want to be near Gwen, night or day instead of traveling back and forth.

    And as far as Dr Spray....that is just amazing!! God has your little one in the palm of His hands for sure.

    Hannah Bonfiglio

    ReplyDelete
  8. So glad to read such positive updates! (I gave up facebook for lent, so I'm also very glad you're continuing to update the blog!)

    If there's anything I can do for you from Harrisonburg, please let me know!!

    *hug*

    Erin

    ReplyDelete