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. 

Top 10 Things I Have Learned From Cody

1. Keep trying – if you keep trying, you will eventually get the outcome you want
2. Don’t give in to expectations – if Cody only lived up to the expectations people have of him they would never see his true potential. I love that he can prove people wrong!
3. Keep smiling – even when he was laying in a hospital bed connected to a ventilator, he never stopped smiling. Even when he is sleeping I catch him laughing and smiling while dreaming. I want his dreams. :)
4. Never hold a grudge – the boy can’t stay angry for the life of him. He can be super mad at me one minute, but as soon as I smile at him, he forgets all about his anger.
5. Be able to laugh at yourself – when he falls, he is the first to laugh. If he bumps his head, he is the first to laugh. I think being able to laugh at myself and things I do reminds me to not be serious about a lot of different things.
6. Make friends everywhere you go – Cody is like a friend magnet. Adults and kids love to talk to Cody and he is always open to chatting with them as well. Not that I’m NOT talkative, but it is a reminder that you can never have enough friends.
7. Don’t forget to be silly – Every day items turn into a hat or a toy. He can crack himself up for half an hour with a basket or a silly dance. I try to be silly with him and his brother as much as I can.
8. Show your love often – Cody has an endless supply of hugs, kisses and “i lub yous” to give away. Hug someone and it can make their day. :)
9. Be there for someone – If ever anyone in the house is upset or in trouble (aka the puppy or his brother), Cody is the first one by their side to comfort them or stand up for them. (He is also likes to help scold them, but that is after he has comforted them).
10. Enjoy life – Cody can turn anything he does into something fun and enjoyable. I think us adults need to do that more often!!!

Did You Know?

I think one of the first questions I get asked when people find out Cody has Down Syndrome is “did you know?”. I always tell them yes, but I do not tell them that I think I knew before I really knew.

Yes, I found out on December 28, 2005 at about 22 weeks pregnant that Cody had Down Syndrome, but I think I new that before even the medical tests confirmed it.

I used to drop off and pick up my cousins’ kids from school. And almost daily before and after school with the crowd of parents filtering in and out of the school there was one baby boy that always stood out to me. I was not sure what drew me to him, but whenever I would see him pass by in his mother’s arms I would just watch him and think he was beautiful and that I just felt drawn to him. So much so that I would mention him to my husband and cousins and that I had to introduce myself to his mother so I could say hi to him.

That little 10 month old had Down Syndrome.

During a Thanksgiving visit to my folks’ house I picked a book out from my mom’s collection (something I always did when I visited). The book was The Memory Keeper’s Daughter by Kim Edwards.

I did not get very far in the book. When I got to the part of his shame over his newborn daughter’s Down Syndrome I stopped reading. It bothered me…A LOT. I figured it was because I was pregnant and overly sensitive.

The following month I went to my monthly doctor’s appointment and took the recommended AFP test and thought nothing more of it.

Within days, my doctor had called to say that he wanted me to do further testing because the test came back with a 2% chance for Down Syndrome. 2% meant that there was a 98% chance that he did not have Down Syndrome.

I had an amniocentesis done and again, thought nothing of it. There was only a 2% chance, right? The amnio and any chance of Down Syndrome were the furthest thing from our minds. We never discussed it because we honestly did not think they would find anything.

On December 28th I received the call from my doctor. You know something is wrong when the first thing the doctor tells you is “I have some important news to tell you. You may want to sit down if you are not already.” My first thought (because I am silly like that) was “REALLY? People say that in real life and not just in movies and TV shows????” Then he gave me the news. Our son has Down Syndrome, more specifically Trisomy 21. My husband had a look of wonder as he watched me sitting on the steps holding the phone in my hand and bawling. I did not know how to tell him. So I just said it out loud…and we cried.

I cried. I cried for days. I mourned the idea of a “normal” child. I wondered why.

One of the first options they give you after telling you your child has Down Syndrome is that you have the option to terminate. My husband had told me that “the easiest decision to make is the one when the baby is not born yet, but how do you know if that is the right decision?”

I would have never been able to live with myself if I terminated for a vain reason. Down Syndrome is a condition, not a death sentence.

As a mother with a child already I knew my life was great with DJ. I did not want to NOT know how great life would be with Cody.

Welcome!

Welcome to our blog where we will share the experiences, learnings, trials and triumphs of raising a child with Down Sydrome.

I would love to hear feedback and encourage questions. My goal is that through this blog I can help build not just awareness, but meet other families with children with Down Syndrome so that we can, in turn, learn from their experiences.

Happy Reading!

(P.S. If you follow my other blog, you may have already seen some of the first few posts that will be posted here. I am pulling from my "Fact Friday" segment to this blog. I promise new content will be posted, too!)