Monday, November 17, 2008

A small glimpse as to what it was like...

What is it like to have your baby go through open heart surgery? Well, for one thing, it sure as heck isn't easy. But you know what? Keeping the big picture in mind, we really are so lucky. We were taught a lesson about true love. Throughout this experience, I learned just how much I love my son. I can't explain it. It's like nothing else mattered to me in this life. The whole thing was just overwhelming, really. The love.

Here are some moments from the past couple of weeks that I do not think I will ever forget. Some are wonderful. Some heartbreaking. But they all stand out.

Day 1 of recovery.
The nurse told me that at this time, I believe it was 12 IVs pumping into my son's body at once. The vent next to his bed is breathing for him.

Day 4 of recovery.
The picture may not seem like it, but this was a big day for Dylan. He started to breathe against the vent when we talked to him. He was trying to open his eyes. They told us to come back in a couple of hours as they were going to try to take him off the vent.

This is what D looked like a couple of hours later. I still find this truly amazing. Just amazing.

Day 5.
On the road to being Dylan again. I thought he looked so great here.

Day 6.
I think Dylan was feeling the vibe of this day. Not only did he have to go back into the OR for another surgery, but he also must have felt his Momma's stress. See, his eyes were open this day, but he could not keep them together. They kept crossing and just looked really different to me. When I asked the doctor about this, I was told that sometimes a baby may suffer from nerve damage or even a stroke during surgery. He said that they would contact neurology to come and take a look. Yep, stress indeed.
Later on day 6.
This was a difficult moment for Dave and me. Just when it seemed like our little guy was on the mend, he came back from his hernia operation looking like this. It absolutely broke our hearts.Day 7.
He's back! I remember walking into his room in the morning and he just looked at me with this face. I felt such joy and relief. His eyes were together and were focusing. Yeah!

Day 8.
No tubes. No wires. He's free!

Day 9.

I dressed him in real clothes because we were about to be discharged! My brave little man and I were going home.


Leigh Anne said...

oh laurie. i'm so glad he's doing so well. i think he ( and you) are two of the bravest people I know!

Cleo said...

A heartfelt and beautiful post!!!. Thank you so much for sharing this experience. Your words and your pictures explained it all, they are so full of UNCONDITIONAL LOVE. Laurie, BE very proud of yourself, you are a wonderful mother, your love for Dylan and your strength helped him to overcome this challenge. You are growing so much, I recognize your wisdom. Dylan is very lucky to have such an amazing human being as his mother. I feel tremendous respect and admiration for you. Love and peace ~

Amanda said...

thank you so much for sharing these pics with us. I am so happy to see how great he is doing. You must be SO relieved!

Cathy said...

Laurie...I'm so glad to "hear" the calm in your voice. Isn't it wonderful to have that behind you?!? I knew you would be strong. You asked me how I did it. Now you just have to do what your baby needs and somehow you get the strength to do it.

Dylan is amazing and is his mama!

Hard to believe, but Lily's surgery was 8 weeks ago yoday!!!

Kimberly said...

L, I know I keep saying this, but you have and continue to amaze me! You stregnth is unmeasureable. I know exactly what you mean about nothing else mattering in the world. That day while he was in surgery, nothing had meaning to me except Dylan coming throught this, I would have given anything for him to make it through healthy and he did!!
To see Dylan like that breaks my heart, I can't imagine how you felt with all of the ups and downs you had. Now we can just love him to pieces and be thankful that his heart is corrected. I love you, give D a big kiss for me.

Derek, Kenzee and Gage! said...

I'm totally crying right now. I just wanted to say thank you for this post. It helps so much to prepare me for what I soon will be experiencing. You have done a wonderful job through it all. I admire you.

The Lehnick Family said...

Laurie...what an amazing week this had been...and such a beautiful strong little man you heart goes out to you and like all the other posts you are unbelievably strong too! Our little Brayden doesn't have any heart issues so I can't completely understand what you have just went through, but can only imagine how hard this would of been...I am so happy he is home and doing so good! Happy Recovery Dylan...what a sweetie you are...Thanks for sharing your story with us.

Lis said...

What a ride! I cannot imagine the emotions you went through. That Dylan sure is a fighter!!

Jessica said...

Hi, I don't know If I've introduced myself, I'm Jecca Dennis from babycenter. I just wanted to say I'm so glad Dylan is doing better! We've been praying for you all. Those pictures sure brought back memories.

Susan D. Davis said...

hi Laur,
this post brings tear to my eyes. I can't wait to meet Dylan in person one day. At 4 1/2 months old he has so much determination and life which I know that he got from his mom and day.
Love you,

Jeanette said...

So amazing! It is unreal that it was just over a week. Thank you for sharing this. I have been meeting with new moms of children with DS lately who's little ones are gearing up for heart surgery. This is not a path we had to go down, so I cannot speak with experience. I have been referring them to other moms in our area who have gone through this. Thank you very much for posting this. It is a window into a heartwrenching ordeal. God bless your sweet Dylan. He is a trooper! You too!

Lisa said...

God, Laurie, every one of your posts lately has me crying. Those pictures are just so moving. Dylan has been through so much, so much. And you too. What a strong boy and a strong mama. I am just so so happy that this ordeal is behind you and that you have your sweet baby home with you again. And I know that your strength will inspire other parents one day who have to face similar challenges.

Welcome home Dylan!

Amy said...

The photo journey had so many ups and downs for me, I can't imagine how you felt. He's such a wonderful little boy and I'm glad this ordeal is behind all of you. :hugs:

Kelli said...

Laurie- what an realize that love is so powerful in the face of so much darkness. I'm so happy for you and so proud of your little man. Know that there are lots of people out here praying and thinking about you even though we don't get to see you. - Kelli Woelfel

Tricia said...

The roller coaster of your journey, though different (especially because of the surprise hernia operation) brought back so much for me and brought tears to my eyes. I remember such fear and rejoicing almost on an hourly basis. Georgia od'd on morphine the day after surgery and it was one of the scariest several moments of my life. And then, what seemed like moments later she was on the mend. Such ups and downs. And ups again. That moment you could dress them in their own clothes and bring them home though!!! Magic!

theresad said...

All I can say is "wow". It is tough looking at him in those first few pics...poor little guy has gone through so much.
Keep up the great recovery Dylan!

Mary said...

Wow! what a week you have had. Thanks for keeping us posted via email,your father and your blog. So happy Dylan is home and the surgery is behind him. He is such a fighter and you have shown incredible strength. Proud of both of you!!

karen said...

Oh, what a beautifully moving post. I am so touched by Dylan's strength. I am so happy he is home with you and your family and you are free to cuddle him and hug and kiss him.

ds.mama said...

So I am about six months late on this comment but I will share it anyway!

When you mentioned Dylan's eyes not working together after his OHS, I was stunned. My daughter couldn't focus her eyes on anything. They brought in an opthamologist who told me she was blind. I was crushed. However, within days she was back to her normal self and now she does have a little CVI and nystagmus, but neither is related to surgery.

So now you have me wondering if this happens to a lot of babies...

There is nothing like walking into that recovery room, is there? I cried so hard and the nurses were trying to console me and I said, "No, you don't understand. These are happy tears because we are safe on the other side now."

Thanks for listing on DSNM.

May said...

Hi Laurie! I discovered your blog just last week. I even saw the birthday post before this one. I'm just so happy to see how healthy Dylan is right now. This post seems ages ago compared to what Dylan has accomplished.
My second baby, Lucas also has Down Syndrome. He is 9 and 1/2 months now. He had an operation 19 days ago and is doing well.
Thanks again for blogging and sharing your journey with us.

Melissa said...

Thanks for posting all these pictures. I will be sending family and friends here to prepare them for Claire's OHS.