Fact Friday – Heart Surgery

(WARNING: The images below are from after Cody’s heart surgery and contain images that may be hard to view.)
I have been wanting to share this experience all month. But because it was the hardest thing I have ever had to go through in my life, I procrastinated writing this post. It has actually taken me all day to write this post. I keep stopping and coming back to it because the words are just hard to write.

Just like with other “Fact Friday” stories, my reason for sharing things that are so personal is because I want others who may be in our situation to realize that they are not alone. That others have gone through it. That others are here to listen or lend a shoulder when they need it most. And I mean that with all my heart. Even if you just know me through the blog and not personally, I welcome your emails or comments if you have questions or just need someone to talk that has been through what you are going/about to go through.

This was done for us at the support group at Rady’s Children’s Hospital for parents of children with congenital heart defects. We attended meetings while I was pregnant, after Cody was born and after Cody’s surgery. It helped to prepare us, support us and then in turn we were able to provide support as well.

The hardest thing I have EVER had to do in my life was hand Cody over to the nurse prior to his surgery for Tetralogy of Fallot correction. Cody had just turned 5 months old and I remember exactly how I felt that early morning when we went to the hospital. I cannot think of it without crying. (Yes, I am crying now!)

My husband, father-in-law and I took turns holding Cody while waiting in the pre-op room. I do not think any of us wanted to stop holding him and pass him on to the other. I know I didn’t.
When the nurse walked up to us and told us that they were ready to take Cody to surgery, I remember not wanting to hand him over. I started crying…bawling. I remember another mother telling me that it would be hard to hand him over to the nurse, but I didn’t realize it would be REALLY hard.
She walked away with Cody in her arms and I just sat there and cried for what seemed like forever. When I finally stopped crying, I looked up to find all the other patients and families gone.

Apparently, I cried for about half an hour.

It was time to sit in the PICU waiting room and wait for the cardiac surgeon to call us to tell us the surgery was done. The surgery time was expected to be 8-10 hours. When the surgeon, Dr. Lamberti, called 6 hours later, we got really worried. We thought the worst. There was no way the surgery could be completed already. We were ecstatic to be wrong. His surgery was successfully completed in 6 hours! We then had to wait another hour to see him so they can move him to the ICU.

When they finally called us in to see him they forewarned us that he would be connected to numerous wires and tubes and it may be hard for us to see him that way. I was 100% sure in my mind that they were wrong. I was anxious to see my baby!

Boy was I wrong!!! We walked in to find our 5 month old BABY attached to an unbelievable amount of wires connected to everything from his head to his foot and everywhere in between. My tears started flowing again. I couldn’t breathe. I was scared. They told me it was okay to touch him, but I couldn’t. I was scared to touch my own baby!



Words cannot describe the way I felt. I couldn’t believe our baby was laying there looking like that and there was not anything we could do to take any of his pain, discomfort, whatever he was experiencing away from him.

No one told me that your heart would leap out of your chest when you saw your child for the first time after surgery. No one warned me that the tears would be like a river flowing and that there was no way to voluntarily stop them. No one told me that you could not do the one thing that you felt would make everything better in your heart – hold him.

We weren’t allowed to stay with him the first night and that was hard to walk away from him. We knew he was in great hands, but he wasn’t in OURS. I called the ICU about every 2 hours to see how he was doing. I am so glad that the staff was patient with me. They made everything more bearable.
The day after his surgery, we brought DJ (3 years old) to see him. It just amazes me that he was not scared by the wires, the blood, the hospital room. He just wanted to kiss his baby! He didn’t ask questions. It was as if he didn’t see anything but just his baby.



Cody has always been a daddy’s boy since the beginning and you can just see his adoration in his eyes for his daddy. He actually wanted nothing to do with me for a few days. It broke my heart, but I was the one who handed him over for surgery. I could not blame him for being angry with me.



My husband and I spent the next couple of nights taking turns sleeping in the hospital. We spent our entire days at the hospital with him. DJ enjoyed being there with his brother. The staff included him in activities and he loved it. He also did not like being away from his baby so he wanted to spend as much time as he could at the hospital.

Cody constantly reminded us of just how strong of a little guy he is. While in the hospital, they had to keep his arms in braces (the pink thing on his arm in the image above) to prevent his arms from bending because he kept pulling his wires and tubes off. They eventually tied his hands down, but he not only figured out how to escape from the ties, but he also would bring his feet up to his torso and face to pull things off with his toes. GO CODY! :)

Within 3 days, Cody was removed from most of his wires and we were able to carry him once again!!!! It was a great feeling!



See how upset he was with me? He cried each time I held him.



 

On the 5th day, we were able to bring him home!!!! This is my favorite image from his homecoming. I remember staring at this picture after I downloaded it because I could see so much in his eyes and expression. I saw peace, but pain (his chest was so tender and laying on his stomach evoked cries of pain). I saw relief, yet sadness.  His hands in prayer portrayed the emotional roller coaster of the last year waiting for surgery to happen and be over with!



Now, at 2 months shy of 4 years old, Cody is rambunctious, full of life, happy and other than a murmur that makes his heart sound like a freight train, his heart is healthy!!! He has annual visits to the cardiologist for EKGs and echocardiograms, but that is the extent of our heart concerns.