Saturday, September 27, 2008

Two holes and a surgery date

At our consultation appointment with Dylan's surgeon yesterday, we were told that he has 2 large holes in his heart. I don't understand why we were never told this.

When Dylan was in the NICU as a tiny baby, we were told that he had a hole in his heart. At his appointment with the cardiologist last week we were told that he has a very large hole. Based on what the surgeon said yesterday, he now has 2 very large holes. What is going on here?

As Dave and I were driving home from the appointment yesterday...or rather attempting to drive home in the rain, in Friday afternoon Boston traffic, with 2 very tired and hungry babies, I looked out the window and started to cry. I found that I simply could not wrap my head around all of this information. My son is having open heart surgery. He has 2 very large holes in his heart, one of which we didn't know about? He will be on a heart/lung bypass machine. He will be on narcotics. On a ventilator. Sedated. He will be in the intensive care unit again. Yes, there is a very high success rate - they told us 95% - but I am scared. This is all very real now.

Please don't misunderstand me - I am very hopeful. Ok, extremely hopeful, but scared nonetheless.

Dylan's surgery is scheduled for November 4. Will you please keep us in your thoughts?

Thank you. Much love to everyone who supports us!


Karly said...

You guys are in my thoughts. {hugs}

Lis said...

I love you sweetie, all of you.

Cleo said...

Thank you so much for the update!!!. Dylan is going to have a surgery that is going to repair his heart, please think of this as the procedure that will provide him with exactly what he needs, it is all for his own good, everything involved in this process will help Dylan to have a healthy and happy life. Laurie, please have faith that everything with Dylan’s surgery is going to go well and Dylan is going to be OK ~. You are going to do a great job during this time, as always, and you are going to be OK too. Stay strong, calm and positive. Dylan and you are in my thoughts.

Aaron and Amy said...

The AV canal defect is a very complex one. I was so grateful for my medical training when we were going through all this! It IS one giant hole in the heart - right in the middle. But, medically they break it down into 3 components, because it affects 3 different parts of the heart and requires 3 different "repairs." The two holes your doctor mentioned were probably:

1. the "VSD" component - or the portion of the big hole that involves the bottom chambers of the heart.

2. the "ASD" component - or the portion of the hole that involves the top chambers of the heart.

The 3rd part of the defect is the part that involves the valves in the middle of the heart.

Doctors break it down like this because some kids only have an ASD, or only a VSD. But, the combination of all 3 components is what they call the "complete AV canal" or "complete Atrioventricular Septal Defect" - because it it involves the "septum" (wall) between the Atrium (top chambers) AND the Ventricles (bottom chambers).

But, in reality, it IS one big hole. Dylan probably doesn't have anything new - they are just explaining it differently. We have some pretty good pictures of the "heart stuff" on our blog. The information on your link to AV canal info is good, but the pictures are a little complex. Take a look at:

I can't tell you how many times I broke down in tears over the thought of handing my baby over to the surgeons! The thought of them putting him on the bypass machine and all of it was just too much! He looked so happy - I couldn't bear to put him though the procedure! But, if I could have looked into the future and seen our family now . . . it was worth it. And, he did SO well with everything. Only 3 days after the surgery, we had a brand-new boy - one who was more active than he'd ever been, and eating better than ever. I am so grateful for the surgeon and his skills in repairing this. It's amazing that this complicated defect can be repaired at all! The surgeon saved my baby's life - literally gave me my child. Focus on that. Focus on how much better EVERYTHING will be once this is behind you. Focus on that the surgery is HEALING.

Hang in there! This is such a tough time - we are thinking of you and you are in our prayers.


Lisa said...

(((((Laurie & Dylan))))) What else can I say?

c1ndy said...

glad you have a date. we will all be thinking of you. xx

Kimberly said...

It was so good to see you guys last night! you are doing great and so will Dylan. All of this is very complicated to understand, I know you are having a hard time and that is understandable!
Thanks 'Aaron and Amy', you helped me understand that better :)
I love you Laur!

Andi said...

All of you are always in my thoughts. I love you.

Amanda said...

Hi, I hopped over to your site from Jennifer's - I don't really have anything useful to say or any information for you, but I wanted you to know I think you are a GREAT mom and will be thinking of you and sending all the good vibes I can towards you and your family for that cutie Dylan's surgery.

heather said...

Morgan had an AV canal repair when she was 4 months old and is doing great -- 6 years later. She isn't on any medications and has an annual exam with the cardiologist just to make sure everything is still going well. It was a very scary time for us but she did well and it was so nice to not have to worry about her heart anymore and be able to focus on her and Down syndrome. Before that everything was focused on her heart failure and struggle to gain weight. Good luck and you and Dylan are in our thoughts and prayers!