Wednesday, November 4, 2009

Dylan's Heart

Exactly one year ago, at 8:30 in the morning, we handed our 4 month old baby over to his cardiovascular surgical team. Dylan was about to undergo open heart surgery.


What was meant to be a complete AV canal repair, wound up being quite a bit more complicated than everyone had anticipated. Once the surgery had begun, an additional, and extremely rare defect called an A.P Window was discovered. And thus it began. The journey of how our broken hearts were repaired.

Here is an update I wrote the day after his surgery:

Dylan's surgery began at about 8:30a.m yesterday. At around 11a.m, the Physician's Assistant came to update us as to how the surgery was progressing. She told us that the surgery was going to be a bit more complicated than they had anticipated. They had found an additional defect called an A.P Window which they did not know about until the surgery had begun. We later found out that they had never before seen an A.P window with an AV canal defect before. Never ever. Ever.


We were updated again at around 2pm and were told that the A.P Window had been closed and they were now going to begin the AV canal defect repair. She told us that because Dylan had been on the heart/lung bypass machine for so long, as well as having to be put on cardiac arrest, they were concerned that his recovery was going to be quite difficult. We were told that he was going to be sick for longer than they had originally anticipated.

At around 3:45pm we were told that the AV canal had been repaired and that he was now off the heart/lung bypass machine. She said that there was still a bit that needed to be done before we would be able to see him.


The surgeon, a genius to be sure, but yet a man of few words, came out to talk to us a couple of hours later and told us that Dylan was doing "Ok" but that his lungs were "not good".


We sat with that information for a couple more hours until the cardiologist came to talk to us. She was much more optimistic. She was exactly what we needed. We were then able to see Dylan. It was amazing...he is amazing.






I went on to write this:


My head definitely hurts, but I am telling you, my heart is so full of love for this kid. He has absolutely, positively, 100% blown me away. He is so courageous and so strong. As I was leaving today, the Physician's Assistant said, "Don't worry about Dylan. He's leading the way and I'm pretty sure he knows exactly what he's doing".


Yes, that was it. That was when my thinking began to change. When my feelings began to change. That was when my fears about Down syndrome began to fade, and my love for Dylan began to evolve into something far stronger than what I had thought possible.



My son was fighting for his life. His life that was worth living. And I was realizing that there was nothing more that I could possibly hope for, than to be a part of it. Nothing else mattered.



Dylan began to recover. His heart began to heal. And all the while, my heart was recovering and healing as well. As it turns out, mine was also in need of repair. See, after hearing my baby's diagnosis of Down syndrome, my heart broke. Not completely in two, but indeed, it was hurt. And just as Dylan's heart wasn't working properly, wasn't working to it's fullest potential, neither was mine. It needed perspective. I needed perspective.



His heart and mine. Healing together.


It has been one year since the surgery. Dylan's heart is still not perfect. If you were to look closely enough on an echocardiogram, you would see that there is still a very small hole and a mildly leaky valve. If you were to listen carefully to his heart with a stethoscope, you may hear a murmur. In Dylan's daily life, however, these issues are virtually unnoticeable. And over time, his heart is expected to heal completely. And mine? My once damaged heart? I think if you were to look very closely, or if you were to listen hard enough, you may notice that mine is also not perfect. I'd guess that a few small cracks still remain, however most days you would never know it. And I am confident that, as time goes on, like Dylan's, my heart will also make a full recovery.

For now, our major repairs are done and we are lucky. I have been given the gift of perspective and Dylan - the gift of life. And because of this, we have both found love.


Happy Heart Day, Dylan. And thank you. We are incredibly proud of you.

25 comments:

Amanda said...

OK, I am totally crying over here! Happy Heart Day, Dylan! You are amazing!

Cathy said...

Happy Heart Day sweet, strong, amazing little boy...and mama too!!

I remember this day a year ago so very well. Lily was still in the recovery process from her surgery. The feelings that I knew you were going through were still so close to the surface in me. I couldn't check your blog often enough.

Your words are eloquent Laurie...I'm so thankful that both you and Dylan's hearts have been healed!

Sharon said...

I remember this day very well, too. Even though we had just met, you and Dylan were in my thoughts so much on this day last year and the days following. Happy Heart Day tp both of you! What an amazing year it has been.

Anne and Whitney: Up, Down and All Around said...

great post!!!!!! happy one year anniversary from the repair of your broken hearts!!!!! :)

Lisa said...

♥ Happy Heart Day ♥

Kimberly said...

Wow, I will never forget that day. Thinking of my baby girl coming, I honestly don't know how you did it Laurie, you are so amazing. That was the hardest day of all of our lives. Dylan is such a blessing and I love him so much. He is so strong and brave. Wow I need a tissue!

Sharon said...

Laurie, your writing here is amazing.

Mara said...

Happy Heart Day dylan !!! Thank you so much for leading the way and making it so much easier for us to handle. We cant wait for our heart day : )

Wendy P said...

Beautiful post, Laurie. And Happy Heart Day, Dylan!!!

Adrienne said...

Wonderful post Laurie! So glad you and Dylan have a happy and healthy heart!!

Rachel Smith said...

Happy Heart Day guys! I remember a year ago being so grateful to you for posting all the photos and telling your stories. We were thinking about Aubrey's and the thoughts were so scary for us, not really knowing what to expect. You calmed some fears for us, and when we saw Aubrey after surgery, all hooked up, it was somehow less scary having shared Dylan's experience already.

What a great year you've had. All our heart babies are always in our hearts and prayers. Continued blessings.

Tausha said...

Wow, those pictures make my heart hurt. He is so beautiful. Words can't describe how beautiful he is, I just want to kiss him like I do Sam. Happy Heart Day!!

Monica Crumley said...

Beautiful post. The gift of perspective and a healed heart are wonderful gifts from Dylan to you. I'm sure he will continue to give you "gifts" along the way. The pics are difficult to think that the little guy had so much going on inside that needed healing, but the after photos I'm sure make it all worth it. He is precious!

Kim Rees said...

Oh Laurie you are making me cry! Today is also the anniversary of Liliana's first open heart surgery. I love how you said that your heart also needed repair. It is so true! Like you I too had so many doubts and fears about Down syndrome that through all of Lily's surgeries just seemed to melt away because like you I realized just how much I love my little girl. Thank you so much for this fantastic post! It really puts everything into perspective. God Bless You and God Bless little Dylan! Today is definitely a celebration of life and love! Happy Heart Day Dylan! You are not alone.

Hector and Jennifer Varanini Sanchez said...

Tears, tears, tears!!! Oh Laurie, such a beautiful post. I'm so happy to have found you and Dylan on this blog. Happy Heart Day!!!!

Tim and Kelli said...

What a great post and perspective. Those pictures, uh, I can't imagine walking in and seeing my baby fight like he did. He IS a very strong boy and I'm glad I have been given the opportunity to know your family through this blog world.

kangfamily said...

What a beautiful post...Happy Heart Day!

Stellarchild said...

Gorgeous post my friend. Happy Heart Day Dylan. You amaze me more time and time again. What a perfect blessing you are. Laurie...you need to write a book. I'm serious.

Lis said...

Simply awesome. I so remember those days and getting texts and pictures. Love you all

Loren Stow said...

Happy Heart Day Dylan!
What a beautiful post - and what a beautiful boy!

DownTownDan said...

Oh wow - this is an extremely powerful and touching post. It's such a strong comparison - his heart and yours. So honest and well thought out. I love it.

Anonymous said...

It's been a few days since i have been on .you should be a writer.The best post ever.
Congratulations,Auntie.

Sasha said...

This is an amazingly beautiful post. Happy Heart Day Dylan. "Wow" is all I can say.

c1ndy said...

Hi Laurie, Think of you often- do try to check in on your blog too, but I'm slack about commenting. This is so beautifully written. I wonder if you could get Dylan's story pubished. Lots of Love xx

Melissa said...

Thank you for the beautiful post! I was going through your old posts because Anne and Whitney's mom said you had some pictures posted from Dylan's OHS. I'm glad I stumbled on this post first. I'm trying to prepare for Claire's OHS and this was exactly the post I needed!