Friday, February 6, 2009

Update On Cardiologist Appointment

We met with the Pediatric Cardiologist today and while it's not terrible news it is what I thought and was kind of hoping it was not: a complete AV Canal Defect. It's not that this is the worst case scenario- at least I don't think it is, it's just that this is the type of defect that requires surgery and I was hoping for one that could possibly close on it's own. So our little Bennett will be having open heart surgery between 2-6 months of age as it looks right now. They like to wait for the baby to gain a little weight and for something in the heart to develop- forgot what it is called- before they do surgery. We will be going to CHOP (Children's Hospital of Philadelphia) which is one of the best in the country so I am happy about that. We will also be getting a second opinion at CHOP (the cardiologist suggested it today) I guess before he is born. The cardiologist was wonderful though and was very encouraging and he said Bennett's heart looks wonderful other than this defect- apparently many others things can be present and cause complications but Bennett does not have those. He also said with this type of defect only one surgery is required and babies are usually in the hospital for less than a week.

On a better note, we also did a growth scan and everything else looked good! He's growing at the rate he's supposed to and no other issues were seen. We got some cute pictures and I've posted them below!

Now they still don't have a lot of fat on them at this stage, for those of you not familiar with 3D ultrasound pics, so he's still a little skeletal looking!

So I know many of you have kiddos that have had this same type of defect and I'd love to hear your stories or any advice you can give! So be prepared, I'm sure I will be bugging you with questions as we get closer to his birth!:)


  1. I'm so glad you have some answers. I think this will make it a lot easier to enjoy your baby once he is born. My friend McKenna's daughter had this defect ... I'm going to send her your way. ;)

  2. Hey Adrienne,
    Thanks for the update. Im not sure if you remember, but Dylan also had an AV canal defect, so please, "bug" away!! Honestly, I would be honored to help in any way that I can.
    I absolutely love the u/s pics! He looks so great! : )

  3. Hi Adrienne...Like Dylan, Lily too had a complete AV Canal defect. If you would like to read the journal I kept during her surgery and after you can look at my Caring Bridge site (this was before I learned of blogger) The site is Her surgery was on September 22nd. I posted a lot during that time.

    As Laurie said, ask away...both of us really enjoy helping out moms who are about to go through what we've been through.

    Lovin' the u/s pics...I wish we would have done that! Take care!!!

  4. Adrienne - while it may not have been the news you were hoping for I'm happy to hear the appointment went smoothly.

    While we don't have any AV "experience" I highly recommend contacting Amy - Matthew's mom (Charlie's dear friend, they were born two weeks apart.) Matthew had the AV canal defect. She is a wonderful resource not only as a mom, but she is a PA, and her husband is a doctor.

    Check out their blog at:


  5. I am going to go ahead and say the same as Cathy & Laurie - we are here to help and to reassure... you will be in wonderful hands and will be amazed after Bennett recovers from his surgery what a difference it will make in his life and in yours! If you want to check out our blog postings from Whitney's surgery, here is a link to the first posting about her open-heart surgery:

    Also, I think Laurie had a great "summary" posting about Dylan's open-heart surgery... here is the link to that post:

    Try not to get freaked out by all of the machines and tubes going into our babies - it is scary, no doubt, but we all made it through just fine and all of the tubes/wires/etc... are there to help them get better faster!

    We are there for you, especially when it comes time for Bennett's surgery!

    By the way - I love the 3d ultrasound pictures, he looks adorable and I can't wait to see him when he was born!!! :)

  6. I agree with the others. Heart surgery really is NOT as bad as you think it will be. It is hard to see your baby all hooked up, but he'll be so young, he won't remember a thing. He will be at the best hospital in the country!

    Benjamin did not have this defect; he had a VSD and an ASD. But his defects, like an AV Canal defect, were a one-time deal. They're fixed. They're not valve issues where he would have to have additional surgeries as he grows. For that I am very grateful.

    You're doing really, really well. Please don't feel like you have to have it all figured out or that you have to be okay with this by the time he's born. Take your time to feel what you need to.


  7. Adrienne, I am so happy to hear that everything else is looking wonderful! He already looks like he is going to be a cutie, those pictures are awesome!! I have told you before, and will tell you again... I am here for you for each and every tiny question you may have! I know the defect is different than what Gage had, but I still would love to help you out!

    You are sooo amazingly strong! I am so impressed by you. Again, I'm always here!

  8. Well Adrienne...I know this "news" wasn't what you wanted to hear...but after reading all of the other families such positive experiences with heart surgery...I know Bennett is going to be just fine...He is already so cute on his ultrasound pics...we had 3D/4D done as well...amazing...Please ask as many questions as you need to...I can't answer any heart questions, but please know I am here for you in any other way.
    Having a prenatal diagnosis is tough at times...but know you are going to be so knowledgable in time for his delivery...
    Glad everything else looked great and he is continuing to grow right on target.

  9. Thanks for sharing your story with us. Bennett is adorable - I love the 3D pictures. We're here for support, questions, prayers . . . whatever you need! You sound like you have a wonderful attitude right now - you're right that the fact that it only takes ONE surgery to FIX his heart is good news. It can be hard to see it that way sometimes, though. Let us know if you need anything, and we're proud of you for being so strong and brave for your precious little boy.

  10. Adrienne: I love all the support you are getting from so many other moms who have gone through the same things you are. What a wonderful group of strong women! While Bennett's heart diagnosis is not quite what you hoped for, I felt relief - only one surgery & it's done. And, I just know he will do great. And, I loved the pics.....he looks adorable. Of course, I shouldn't be surprised....after all, he IS a Donovan!
    Love, Aunt Molly

  11. It is amazing the things they can do now with surgery. Both my older daughters were born with DS and AVCanal defects. My oldest is 18 years old. After her surgery at 6 months they told me she would need another surgery on her mitral valve. They also told me that because of her hypertension that she would be struggling to live when she turned 18. AT 18 she has really NEVER been healthier. I wish I would of left my worries in Gods hand back then.

    Our story is posted on another blog, it is a little out of order because it was taken off different post of mine over the years.

    Prayers for your family and the amazing new baby you will soon have.

  12. Adrienne: I love all the support you are getting from so many other moms who have gone through the same things you are. What a wonderful group of strong women! While Bennett's heart diagnosis is not quite what you hoped for, I felt relief - only one surgery & it's done. And, I just know he will do great. And, I loved the pics.....he looks adorable. Of course, I shouldn't be surprised....after all, he IS a Donovan!
    Love, Aunt Molly

  13. First of all, congratulations on your new little one to be- his prebirth photos are gorgeous, love those photo ops. Wasn't an option when we had our 3 kiddos...I came across your blog from Bethany's and just had to throw my 2 cents in about heart surgery. Our son also had a full av canal defect that was repaired at 3 months old...I've written a few different posts on our blog about the process in hindsight. Dom had his repair done at 3 months, was released on day 5 post-op, and really has done so well...from what was a scary beginning to now- Dom's 4 1/2, attending preschool, loves terrorizing his sisters and our cats, and is just a typical little 4 yr old boy...swing by our blog if you get a chance and check out some of our chaos caused by a family of can seem scary, but the outcome is so worth the anxiety for surgery day. It's a wonderful feeling to say your wee one's heart is fixed...

  14. Adge~Your strength and faith are overwhelming and awesome! I don't have much experience to offer but I will join the group of shoulders you will always have to lean on for support if you need it. The new ultrasound pictures are beautiful, and I can't wait to even more when he's born. I'm so glad that it is only one surgery that he will have to endure and I have no doubt he will thrive and be a happy little boy! God Bless little Bennett and thank you for sharing everything along the way. Hugs to you.

  15. A new "face"... my name is Carin and I found your journey through Bethany's blog. I am so excited for your family... adding Bennett to your family is going to be amazing. It's what everyone says it is going to be -- and more! My daughter, Rylee, was born with DS and an AV Canal 5 years ago... I can see there are tons of people out there for advice and support, so I'll just add my name to that list! I don't have a blog yet (I know... I'm like 1 of 5 in the world with no blog!) However, during Rylee's 1st year, I created a Caring Bridge website for her, and believe it or not, it still exists! So, if you want to check it out you can. (If you go to journal history you can start at the bottom and work your way up the entries.) Last year I started a website with some family pictures -- if you just want to see some pictures of a little girl who's more alike others than different, you can! It's Welcome to an incredible world... you are so lucky!!

  16. Hi Mike, Adrienne, Ainsley and Harper,

    Congratulations on your pregnancy.

    Firstly you girls are going to make great big sisters, Bennett is very lucky!

    I know that facing the thought of heart surgery is really scary for you all and I'm not going to tell you it will be easy because it won't, but you will get through it together.

    Bennett is a lucky boy to be coming into such a great family. I look forward to hearing more about your journey together in the future. In the meantime, if we can be of any help, please do get in touch.

    Penny Green
    Down's Heart Group

  17. Bennett is soo cute! Our daugher, Ainsley, also has DS and had an AV Canal Defect. Her surgery happened when she was 3 months old. She was a total rockstar and was out of the hospital in 5 days! Feel free to ask any questions--I wish I'd had someone to ask about all this stuff before Ainsley went through it. God answered so many prayers for our little girl and I know that He has a wonderful plan for Bennett, too! Hugs & blessings!!


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