Monday, October 20, 2008


When Dylan was in the NICU, Dave and I were constantly being told conflicting information as to whether or not Dylan would be getting an echocardiogram. One day we would go in and be told that it was not necessary. By that afternoon we would be told that he'd definitely be getting one as they were detecting a slight heart murmur. The next day, same thing. Yes he'll get one, no he won't. And the next and the next.

Finally, on one of his last days in the NICU, they did give him an echo. And I happened to be sitting right there with him when they showed up to do it. I was able to watch the whole thing and it was amazing. I was not nervous, though, as I had been reassured that everything was probably just fine. Well guess what? Everything was not fine. In fact, they found that Dylan did indeed have an AV canal defect and would require open heart surgery.

When the cardiologist came over to explain everything to me, I swear he could not have sounded any less concerned if he tried. He said that Dylan had a hole in his heart that would not close on its own. He said that his heart would need to be "corrected". He then took out a pen and drew two hearts on the back of a pamphlet I had received about Down syndrome while in the NICU. He showed me what a normal heart looked like and then what Dylan's heart looked like. While he was talking I obviously should have been listening, but instead found myself thinking about how calm and unphased he appeared to be by all of this. He was so completely mellow and...almost bored by having to explain all of this to me.

At the time it bothered me. I remember thinking, how does this doctor not care? Why isn't he worried? Why is he acting like this is not a big deal?

What's funny is that now, every time I am feeling especially anxious about Dylan's surgery, I think about that cardiologist. I think about his tone, his confidence, even his boredom. I think about how he used the word "corrected". I like the use of that word because it is much less scary for me to think of Dylan's surgery in that way. I think about how they almost didn't even do an echo because Dylan appeared to be doing so well. He was and still is strong and healthy! All of these things bring me down and make me feel comfortable and safe.

Now when I think about the interaction with the cardiologist, I believe that his calm tone did not mean that he didn't care. I believe it meant that he has seen this all before. He has done this same thing many many times. This is not shocking. This is not new. These doctors know what they are doing and it's going to be OK.

I have to believe that.


Kimberly said...

You should believe that, because it is true, what Dylan has is very common in children with Ds. Be positive! :)

Cleo said...

Laurie, I have faith that Dylan is going to do great ~ and the surgery is going to be successful. =)

Lisa said...

Laurie, i so know what you mean about all the conflicting info from different doctors and nurses in the NICU - we experienced that too, and it was very frustrating.

I LOVE the way you are now translating that cardio's manner and attitude, and I think you are absolutely right about it. I'm so glad that it's giving you comfort and confidence about Dylan's upcoming surgery.

I believe with all my heart that Dylan is going to be better than okay . . . but I also believe that you are allowed to have whatever feelings you're having - fear, sorrow, whatever. I think you're doing an amazing job of allowing yourself to feel those emotions without getting completely lost in them.

It's all going to be okay Laurie. (((Hugs)))

Cathy said...

Good way to look at it! I kind of felt the same way about Lily's cardiologist. He even made the comment "Many parents of kids with heart defects would like to be in your position." At the time I thought...what the I realize that he meant if you have to have a heart defect...Lily's was a "good one", easily corrected.

Thinking of you and your entire family!

Jen said...

It IS going to be okay. Dylan is strong and healthy and has everything on his side. And those doctors? It's just another day at the office for them.

Evan had (has?) an A/V Canal, and it was corrected. And the people at the hospital paid very little attention to us while we were there, because in the scheme of heart issues, it's small potatoes to them. Easily corrected, few complications, etc. Yes, Evan was in the PCICU for a few days, but he was like a skinned knee compared to some other kids who were there.

You will get through this.

Lis said...

I believe that as well hon

The Boltz Family said...

Yes! It is routine for them, and yes, they do care. I remember the cardiologists telling me that Jack would have a routine surgery, and I reminded them that while it was routine for them, it was not routine for us, and they became sensitive to that.

j*e*n said...

My daughter, Ainsley, was also born with DS and an AV Canal defect. Her corrective surgery happened when she was 3-mo. old. It was like we brought home a different baby. She had been very pale, but she turned a cute shade of perfect-baby-pink. We will pray for you & your family as Dylan has his surgery and recovery. God has a plan for you--and it is a good one!!