Rycker's story: A day in the life

Below is Rycker's story originally written in January 2018 (This is about a 5 minute read)
​Rycker has inspired so many lives across the world through our I Wear Red Campaign and our blog page Rycker: the ups and Downs. 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. We couldn’t understand why this was happening to us. Why would god give us 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 we will always remember. 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 our hands. So many questions and thoughts came flooding through our 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 us 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 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 woman. 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, 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.

The original picture i recieved the day i found out about his heart defect. Drawn by our pediatric cardiologist.

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 Ryckers 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 learn 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!

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​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 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. It was the hardest thing I couldn’t have went through as a mother. If it wasn’t for the extreme amount of pain I was and being completely doped up on the pain medication, I would have broken down emotionally and mentally to the point of no return. When I was finally discharged I immediately went to be by his side. I felt undeniably enamored by his perfection but also completely distraught by all the machines, the tubes, the constant sound of beeping, and numerous people crowding my so called bonding time that we were supposed to have. I felt that the nurses knew him better than I did. Did he even know I was his mom? How was he supposed to tell with so many people caring for him? That moment I first got to hold him was unlike any other feeling I had ever experienced between all the worries if he knew I was his mommy I felt a love that I had never felt so strong, I suddenly become struck with an utter despair and depression of the reality that was ours. Here was my perfect boy, who had so many health issues.I suddenly felt sad for myself that I was ever worried about all of it but I also felt sad that he wouldn’t lead a healthy life like all other typical babies, that he would endure more surgeries than most adults ever would. 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.

Rycker's heart surgeon. Right before we got the news.

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. That tissue box, the same tissue box that I saw when we found out, that tissue box that I would never look at the same again after that moment, and here it was again, in that same little room with that same round table. It was a different hospital but in that moment it was all the same, I already knew in that moment that we were right back in that life changing moment of devastation, of despair, of depression, that felt like it would never end. Something was wrong with Rycker, he was really sick, and now there was no denying it. 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. All I wanted to do is cover my ears like a little girl and say”lalalala”. I wanted to drown out her voice and just go back in time again. 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 the pulmonary hypertension. Even through the tears we knew we had to stay strong , be positive and put a smile on our faces for our son. Who we would soon find out could not be extubated after the surgery.

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That procedure was the worst yet, although it wasn’t an open heart surgery it was still a procedure on the heart, and it ended up having the most complications. Rycker had to be intubated and sedated for 6 hours after that surgery. (Picturedbelow) Seeing my child like was even worse than after his open heart surgery. Atleast he had been extubated shortly after that first surgery. When the doctors tried to extubate Rycker after this procedure, he ended up being so overly sedated that they needed to give him Narcan, the drug that police and EMT across the United States to reverse overdoses of opiates. Here was my 10 lb baby needing to be given Narcan because they had oversedated him. I couldn’t believe it, They had to work on Rycker for over an hour, I know this because I recorded everything in case something happened to my baby. That video was over an hour long. They had to be bag and give him adrenaline and give him Narcan (an opiate reversal drug used in overdose cases) just to bring him back.

​The chaplain was with us and said my face turned so pail that I looked like I was going to faint. I felt like I was. We are not looking forward to that procedure again. I honestly have considered not even doing it because of all that happened after the last one. If he wasn’t so sick and if the tests showed any improvement, I would forego it all together. After the initial stress of that incident I immediately thought back to what the doctor had just told us only hours before.
Why again was all of this happening. I knew Rycker was sick, I guess I just tried not to see how sick he really was, and for the most part he seemed to be hiding it too, he was still his happy self, with his infectious smile and contagious laughter.

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​Rycker would have another surgery about 2 weeks after to have a feeding tube (Gtrbe) placed into his stomach remained in the CICU and Heart unit for another month after the surgery until they stabilized him on a strong medication for his pulmonary Hypertention. There were a lot of ups and downs especially with the aspiration and feeding. Literally a day or two after he came out of those surgeries he would have a smile on his face and be giggling as if nothing happened!

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!
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. He is destined for greatness and he makes me feel like I might be too. He wakes up with a smile on his face everyday, through everything he still smiles. Usually people look up to someone famous, an athlete, someone in history. I look up to my son, I admire him, I can only wish to have half the strength he has. I can only hope that he will one day look up to me as I look up to him!

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UPDATE JABUARY 2023

Rycker would go on to have another 5 surgeries and procedures in the following years with months spent in and out of Children’s Hospital. He was also diagnosed with Autism as well. Which made it exponentially harder being that he is non-verbal now only saaying a few words and using signs. After being in and out of the hospital he was only able to do very minimal therapies to help him develop in that key year or two. He has been in Occupational,Physical,Speech and feeding therapies for the last 3 years. We have had some regressions with feeding on and off.  We are taking it very slow currently. Other than that we are doing great. Rycker’s been in Pre-school for the past few years, so with that and the therapies we literally have 2-3 appointments Monday-Friday so we have a full schedule on top of working and running the charity. He will be going to Kindergarten next year and we can’t wait to have our little grade schooler! As far as surgeries go he will need to have another heart cath procedure and possibly another repair on his heart. But we are taking everything day by day and we are so absolutely blessed and thankful for our Rycker Roo! I can’t forget to mention how grateful we are to all the people who have supported us throughout the years on this journey of ups and downs!
If you would like to \follow Rycker’s personal blog page click the link below

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Rycker Roo: the ups and Downs