Red for Rycker. Down Syndrome and heart defects won’t define him.

Rycker has inspired so many lives across the world through our I Wear Red Campaign and our blog page Rycker: the ups and Downs. Red for Rycker is what we say.  Red for Rycker Down Syndrome and Heart Defects won’t define him.

We have had our #ryckersheartheroes wearing red as far as South Africa, Nepal, Germany, Greece,Brazil,London, the Philippines, Canada, from California to New York! It’s amazing how one little boy can impact so many lives! As I like to say it only takes one person to reach many hearts! He has been through so much these past few months after having so many complications after open heart surgery. He is strong. He is my thriving fighting survivor!

Here is our story from the beginning:

When I was 24 weeks pregnant we got some of the scariest news a parent could get, our son had a congenital heart defect, Atrioventricular septal defect, which is just a fancy name for 2 holes in the heart. The news didn’t stop there. After hearing the news of his heart defect, we were then told that this particular defect was related to a genetic disorder. We then saw a genetic counselor right after seeing the cardiologist. We were told that I would need an amniocentesis to check for genetic disorders.

I couldn’t understand why this was happening to us. Why would God give me this child only to make him suffer. Why us?

We had the amniocentesis done and got our preliminary results a few days after. It was May 11th a Thursday. It will be a day I will remember forever. Our genetic counselor, Michelle, called us and said I am so sorry to tell you, your son has something called Trisomy 21 or more commonly known as Down Syndrome.

The phone almost slipped from my hands. So many questions and thoughts came flooding through my mind. I thought I had done something to cause this. So I asked her that same question “how does this happen? Did I do something to cause it?” She said “ there was nothing you could have done to cause or prevent it.” She then said something that stuck with me and would eventually make everything fall into place she said “It was completely random”.

The thoughts and emotions after this call and getting our diagnosis is pretty much a blur. I do remember feeling and thinking thoughts a mother shouldn’t have. Again, why would God make my child suffer. I felt God should just take him so he wouldn’t have to go through life like this. I had known nothing about Down syndrome. I remember having a classmate or 2 with it. I thought it only happened to older women.

I was only 25 and I was healthy.

I just didn’t understand.

I honestly didn’t know much else about it. It was soon after that we met with the amazing Sheila Canon from the Down syndrome center at Children’s who answered all of our questions (2 pages full) my fiancé left that meeting feeling overwhelmed and I left feeling hopeful. It wasn’t long after getting our diagnosis and having all those emotions, that everything just clicked.

As I have said in Ryckers story on our blog as our genetic counselor said during that moment when we first found out “it was completely random!” No, it wasn’t random. God chose me to be Rycker’s mommy! He chose me to help educate people about Down syndrome and teach them not to look down upon it or sweep it under the rug. He choose me to help inspire people to want to learn about people who are different. Just because my son might look a little different doesn’t make him any less handsome. Just because my son learns in a different way doesn’t mean he isn’t smart.

Having Down syndrome doesn’t mean you have a disability but that you have an amazing ability. Our children are more like typical children than you think. Just because Rycker has Down Syndrome, it will not limit him. He will grow up knowing he has no limitations!

Fast forward to July 19th 2017. Our little boy Rycker was born at 6:24 am @ 4.9 lbs by emergency c-section after his heart kept going into deceleration. He was then taken from me immediately after he was born. I wasn’t able to see my son until a few hours later. We were then separated for 5 days. After a 16 day stay and multiple echocardiograms and tests, we were able to go home for the first time with our baby! We were told we could go home before having our open heart surgery!

Hearing those words were music to my ears!

It made me never take for granted getting to be with my baby, getting to hold my baby, getting to take my baby home. Although a lot of parents never think that is something they would ever have to worry about. I know that in an instant we can end up back in the hospital, not being able to hold him, and not being able too go home.

On January 9th, ten days before Rycker’s 6 month birthday, he went in for his first open heart surgery.

It was a day we would never forget, a day that Rycker would never remember and a day that we would always remember. It was a day of waiting, waiting for the surgery, waiting to hear an update, waiting to see our baby, waiting to hold our baby, waiting for Rycker to recover. We could have never imagined that recovery would have gone the way it did. We knew it wasn’t going to be easy, but we could have never imagined how hard it would be!

After Rycker had his original surgery we were told that they had caught something on his echocardiogram right before they were going to send us home. The echo showed that the pressures in Rycker’s heart were extremely high. We were told that Rycker would need to go in for a heart cath procedure on his heart to get an inside look as to what was going on. Rycker went into that procedure and as he came out when we were taken to the little office room where the director of cardiology sat us down, immediately it took me back to that moment when we were first told of his heart defect.

The director of cardiology proceeded to tell us that the pressures in his heart and lungs were the highest case they had ever seen in her long career.

She went on to say it there was no improvement with medications or surgical interventions that Rycker would need a heart transplant.

Immediately Jeffrey and I grabbed each other’s hands and squeezed. We soon found out that a heart transplant wouldn’t be enough that if it came to that, he would need a double lung and heart transplant. The survival rate with the double transplant is so low that we wouldn’t even consider it. We also found out that Rycker was aspirating which in itself would be deadly with him having pulmonary hypertension.

Which would lead to him getting a Gtube.

Having a child with a heart defect can be difficult. Although it can be a very unpredictable journey, it has become a journey to awareness, advocacy, and being not only a voice for my son but all heart heroes. When I found out my son had a heart defect I never could have imagined that we would be where we are today. Advocating and raising awareness for congenital heart defects and for Rycker’s story has become not only a passion but the reason why I wake up everyday. It has become my reason, my why.

Bridget started writing about their journey when Rycker was 2 months old (October), when she first started it she thought she would just be able to tell friends and family about their diagnosis and everything that led up to it. She had no idea that they would soon be telling people across the world their story! When Rycker was in the hospital after his open heart surgery, they would update everyone daily,  they found through their blog, that support would be something that would help them get through their most difficult struggles.

Rycker received almost 1,000 get well cards from all over the world! He received gifts and care packages from California, Wisconsin, Louisiana, Canada, New York, Oklahoma, Chicago, and all over the United States! She says if anything their struggles and their journey has brought so many people together and that it is truly something beautiful to see! When Rycker was in the hospital he spent a lot of days in pain and uncomfortable; the only thing that would comfort him was something called a Mamaroo. After being moved from a different unit and having so much trouble getting another Mamaroo, they knew their had to be a way they could get a Mamaroo to every heart hero in pain. Thus The Rycker Roo Project was born. Where they would donate a mamaroo to every room in the CICU (cardiac intensive care) and directly to the families and heart heroes! They are donated almost $2000 worth of Mamaroos to their local Children’s hospital. They have had Mamaroo donations pouring in and were amazed by the support they have had for this project! This is just the beginning of their projects to help others through their non-profit, they have a few other projects in mind to provide comfort and care to families after open heart surgery. They have contacted by people all over the United States to bring their Rycker Roo project to them. They plan to take Cooks Children’s hospital in Texas next. It has been the perfect start to their the Rycker’s Heart Heroes foundation.

Rycker underwent 3 surgeries in a span of 2 months and one major open heart.

Rycker will need undergo another procedure to check the pressures and to see if there has been any improvement to his Pulmonary Hypertension. We will not know whether or not he will need a transplant for at least a few more months as they will try every course of action and medication before considering it. He has just recently had an infection to his Gtube site and had to have it cauterized multiple times. We will know more on March 28th as to when exactly he will have his next heart cath procedure. This procedure although more minor than an open heart surgery,  was the worst of them all. His 1st heart catheter procedure did not go as expected, he had to be bagged for over an hour to bring him out of sedation, the longest hour of our lives. A chaplain was there by our side the whole time and at one point said “I could see the color drain from your face and feared that you might faint”. We are not looking forward to this procedure although I know it need to be done. This will be the determining factor of our next treatment, more invasive treatment. CHD is hard, it’s probably the hardest part of this whole journey. CHD has lit a passion in me that I might not have known before, although it’s hard, it is a major part of our lives, and as odd as it might sound, is just what we needed. Rycker is so very strong, stronger than some adults, at time when I feel I might not get through all I need to do is take a step back and realize how hard it must be for him, but through it all he still smiles! That’s all I need to get me through those tough days. I wish everyone could see the strength and smile that this little boy has! It would brighten up a lot of dark days just like it has mine.

I have had many people ask me would I go back and change anything and I look back on that time when the genetic counselor who gave us or diagnosis said sorry and if I could go back in time I wish she would have congratulated me. I might not have understood it then but I would one day. Down syndrome is a blessing in disguise. A hope that you didn’t know you had. A beauty that you hadn’t known existed before. Our children our more like us than they are different. They are very special in a way you hadn’t realized before. I have had another friend and mom tell me something that has stuck with me “Special moms are made for special babies”. I believe that whole heartedly but I also believe that god chooses everyday moms who need that special baby in their lives. Whether they realize it at the time or later on. I didn’t realize I needed my special Rycker actually until just recently. Not that I didn’t realize it before I just knew that he was my reason for being, my reason to have hope, and my reason to change not only myself but others outlooks on life and children like Rycker.

Bridget is a 26 year old first time mom and engaged to a supportive fiancé. She is the President and Director of the newly formed Rycker’s Heart Heroes foundation a non profit organization to help families affected by CHD. She has found during their struggles that helping others is her true passion. She is also the creator of TheBreastfeedingmommy.com an informative website and blog that provides all moms with tips, stories, and information on all things breastfeeding and mommy in general!