The Boy’s Got Heart!

(This was originally posted on MRS Photography as one of the Cody and Down Syndrome Fact Friday posts.)

I was overwhelmed with the support and love for Cody that everyone shared after I shared  “Did You Know?”. You all had me in tears. THANK YOU for the love!

It is interesting to find out that many of my friends that have children with Down Syndrome did not know their baby had DS until shortly after they were born. I often wonder if I would have reacted differently if I didn’t know about Cody’s diagnosis until after he was born. I know without a doubt that he would have been LOVED just as he is now. That would not have been different at all.

Another question I am asked is how I coped with knowing he had Down Syndrome during the 4 months of waiting for him to arrive. In all honestly, the Down Syndrome was far from our minds.

One week after finding out Cody had Down Syndrome we found out something that was hard to comprehend. Our son had a heart defect. (Almost 50% of children with Down Syndrome have heart defects.) It hardly seemed fair that our unborn child already had issues with his heart.

Cody had (I am SO happy to be able to say that word – HAD) a condition called Tetralogy of Fallot. He also had an ASD (a hole in the septum – the wall between the upper chambers of the heart). Sometimes I hate that I know all this terminology because all this happened to Cody, but other times I like it because I have always wanted to be a nurse. ;)

After finding out about his heart defect, the remainder of the pregnancy was focused on keeping Cody as healthy as can be while in utero. That included monthly pediatric cardiology appointments for cardioechograms on his heart and visits with a pediatric heart surgeon. The world of medical technology amazes me. Although it was comical being the only adult in the pediatric cardiology waiting room awaiting an appointment, it was comforting that they could track Cody’s progress while he was still securely protected inside me.

Because we were so focused on the heart defect, we “forgot” about the Down Syndrome.

I think the most stressful part about it was waiting for him to arrive and wondering if he would be okay.

I LOVE that he was born at Mary Birch Woman’s Hospital and that they had a “secret” (okay, it’s not really secret, but I just like the mystery of the way that sounds and have always referred to it that way!) passage way to San Diego Children’s Hospital. They prepared us that after the c-section he would highly likely require surgery immediately after birth and that he and his dad would take this passage to Children’s Hospital for the surgery while I (probably impatiently and nervously) recovered at Mary Birch.

That’s the part that scared me the most – not knowing what was going to happen at birth and the high probability of him needing surgery after birth.  Would the Ductus Arteriosus close as it is supposed to and he will get blood to his lungs? Will he scream and yell after birth to tell us he is okay? Will his heart have to work overtime due to the birth and cause him to have even more issues?

On May 4th (he was supposed to be born May 5th for my mom’s birthday present, but my doctor was off to celebrate Cinco de Mayo instead! LOL), Cody was born….

…and he screamed…

…and he fought…

…and true to my feisty Cody, he pulled his oxygen mask off his face and smacked the nurse….

….and did NOT need surgery!

He came out with his arms swinging, legs kicking and a warrior cry that filled the room! His cry was the most beautiful thing I had ever heard.

After 4 months of waiting for that cry, I finally heard it. It was the cry that told me everything was going to be okay.

The cry that told me “look at me, mom! I’m fighting! I’m not going to let them take me to surgery just yet. I haven’t even met you!”

I love that the hospitals were prepared. The cardiologist was waiting to be paged, the ICU staff was on hand, the team to take him to surgery was on hand. What I love even more is that we didn’t need them. Cody didn’t need them. (He didn’t need them for another 5 months.)

In this moment, I knew my little guy was a fighter.