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A blog about our busy family with two amazing kids, one of whom happens to have Down syndrome!

Friday, November 18, 2011

Day at U of M

I promised more about Lauren's heart condition, so here we go!

Lauren has what is called an AV canal defect or AVSD or atrioventricular septal defect. What it means is that she has a hole in her heart. Imagine the heart as a box. Draw a horizontal line and a verticle line, creating 4 small boxes. The small boxes represent the 4 chambers of the heart. Imagine a hole right at the center of the four boxes, where all the corners meet. This is where the hole is in Lauren's heart.

She will require open heart surgery between the ages of 4 and 6 months, earlier if her symptoms dictate. Symptoms of heart failure will start to appear at around 4 weeks old, most likely. "Heart failure" is kind of a misnomer in this situation. In reality, her heart will be working very hard to make sure that in spite of the hole in the center, blood is pumped into the body and the lungs. This results in the majority of her calories to be spent by her heart trying to pump blood to her body and lungs. Her symptoms will most likely be feeding issues. Since the majority of her energy will be spent on pumping blood, not a lot of energy will be left over for eating. So according to the surgeon, she'll probably be slow to grow until after her surgery.

We met with the surgeon who will be performing Lauren's heart repair. He was a great guy, explained and ton and answered a lot of questions. He also immediately asked if we had a name picked out and referred to her as Lauren, instead of "the heart" or "the baby" the whole time. I really appreciated that he right away was calling her by name, rather than seeing her as another surgery on the books.

He said he does this particular surgery a couple of times a month and actually has one scheduled for Monday (let's all pray for the doctor, the baby and his/her family)! It's a common heart defect in people with Down syndrome. One of my questions was if the fact that our Lauren has Down syndrome would affect her recovery in a negative way. The surgeon said he actually finds the opposite! He said in his experience kids with Down syndrome tend to have an easier recovery than typical kids with this type of surgery. We're looking at 10-14 days in the hospital for her surgery and recovery.

He reviewed our last echo of Lauren's heart and says that he doesn't anticipate needing to do it any earlier than 4 months old. That really is great news because the heart valves of newborn babies are like tissue paper. We want to be able to give them enough to time to become stronger before her surgery.

We feel very grateful to be located so close to one of the top pediatric cardiology programs in country. Lots of families end up traveling for surgery and we're very blessed that we don't need to leave our "comfort zone" (at least geographically) for our baby to have open heart surgery. I'm sure it's tough enough without being away from home.

The good news: I had another fetal echo today as well to look at Lauren's heart. Everything has stayed the same! Her valve leakage is definitely on the mild side and has been for the past 2 echos. Now I don't need to go back for another echo until January! I'll still have monthly growth scans, but really, who doesn't love another chance to take a peek at their baby?!

Thank you all again for your prayers and support. It means more to me than you'll probably ever know.

7 comments:

  1. You are such a great mom, Jackie. I really hope you know how much I love and respect you as a sister, friend, other half, and as a mom. You were meant for Lauren just as much as she was meant for us! When she's in the hospital, we'll just tell her she is at Disney World ;)

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  2. I am praying for your family, but I gotta tell you that God is working in your family and it is evident. God bless and call if you need anything, even a babysitter. I mean that.

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  3. Just found your blog! My Ben had open heart surgery at 4 months old and now he is a thriving 10 month old. Surgery was scary but his development really blossomed after the surgery. He had his first smile on the day we left the hospital. Congratulations on Lauren's upcoming arrival! She will be the light of your life!

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  4. Laura, I'm so glad to hear that your Ben is doing so great! We can't wait to meet our little girl and are hoping the next 12 weeks fly by!

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  5. more love and prayers your way from our corner of the world

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  6. My son also had OHS at 5 months, and is now a happy healthy 1 year old. Good luck with the surgery, and everything leading up to it. We will keep Lauren and your family in our prayers.

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