Rycker: the ups and Downs
”The innocence and wander in a child’s eye when seeing something for the very first time, is magic in a moms mind”
-Bridget Anne Rohm (founder)
”The innocence and wander in a child’s eye when seeing something for the very first time, is magic in a moms mind”
-Bridget Anne Rohm (founder)
click below to Read more!
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.
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!
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.
On January 9th, ten days before Rycker’s 6 month birthday, he went in for his first open heart surgery.
It was a day the 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. 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.
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 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.
His aspiration issues would lead to him getting a Gtube. Another surgery, another few hours waiting, waiting to hear an update, waiting to see my baby after surgery, would he have the same reaction as he did when he had the procedure on his heart just 3 weeks before? Luckily Rycker didn’t have any reaction and was extubated immediately after surgery, instead of giving him a lot of sedation that time they used a block like an epidural.
We were finally discharged February 27th only to return for 5 days for feeding issues. Rycker has been home since March 2nd. We will have to go back again in 4 weeks for that dreaded procedure on his heart which I am not looking forward to what so ever. In the mean time I am doing everything to keep my mind off of it.
One of those things is the Rycker Roo Project, which you can read more about here.
We will be donating 21 mamaroos to the cardiac units at Children’s hospital. Just click the links above to find out how you can help or if you have a heart hero you would like to sign up for The Rycker Roo Project
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!
A harpist came in to play Rycker’s favorite song on his 6 month birthday, shortly after we found out he had the severe pulmonary hypertension and would possibly need a heart transplant. Please share the video above to spread the beauty and Rycker’s story.
You can follow Rycker’s daily journey and recovery on his Facebook blog page
Rycker: the ups and Downs #ryckersheartheroes
If you would like to donate to Rycker and family you can do so on the Rycker’s Heart Heroes fundraising page below.
Rycker’s Heart Heroes Fundraising Page
Show your support for Rycker by getting your own #Ryckerheartheroes t-shirt or other Rycker merchandise below!
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Read more about The Rycker Roo Project here
Read I am Mom, I am Me, An Ode To all Heart Moms By Bridget Rohm here
^^ they said he wouldn’t laugh like the others, they said he would be behind on his milestones, they said he wouldn’t be like typical babies, they let Down syndrome the diagnosis define him. Rycker is Rycker, not Down syndrome! He continues to prove the doctors wrong and anyone who didn’t believe in him. This was Rycker at 2 1/2 months old laughing, smiling and holding his head up!
the first time i got to hold you, The first time i saw you!
The first moment I saw you my sweet boy, my heart stopped beating and in that moment all the worry and fear that I had felt after receiving your diagnosis, ceased to exist. No matter how much I tried to prepare myself for all the worst outcomes and how much I tried to educate myself on what it would be like to have a child with special needs,Trisomy 21(Down Syndrome), and congenital heart defects. Nothing could have prepared me for how much I would love you and how nothing else seemed to matter after meeting you for the first time. No matter how much I tried to prepare myself, it was all erased in that moment that I first saw your face. Those beautiful eyes and those pouty lips, to those perfectly manicured long fingernails, and that dimple in your chin. Everything about you was shear perfection. I was never taught to judge someone by their looks but boy of boy I couldn’t help but judge the beauty of everything about you. Everytime I look at you my heart skips a beat and my breathing gets a little heavier and my knees a little weaker. Oh and that smile! That smile is what gives me the strength I need to get through. That smile is like a bright and sunny day when it’s raining and completely gray. Just the way you smile with everything going on and the way nothing phases you gives me the inspiration and motivation I need to carry me forward. I remember when you were first born not being able to hold you for 5 days. As soon as I was able to hold you a few days after surgery it immediately brought me back to that moment when I held you for the first time. When I got to squeeze your tiny little body for the first time. I can say since then you have for sure have grown! Not only have you grown in size but you have grown on me and my heart. Rycker you saved mommy’s life when I was in a state of depression and personal struggles. You gave me all the reason I needed to bring myself back from rock bottom. You saved me. You made my heart full. You made our life complete. Now it’s times for me to help save you. To mend your heart, make it full and make it complete. You are my thriving fighting survivor, my hero, my fighter. As I have said before not only have you made an impact and inspired so many lives across the world, but you continue to inspire me everyday! You are the reason I share our story and give me the passion to help others who are struggling or need encouragement. I can’t wait to hold you in my arms when we are home someday soon. I ask that all of you hold your littles just a bit longer than usual. I ask that you snuggle your littles more today. You give them a few extra kisses and give them more hugs and one for Rycker. I know it’s something that is barely ever given a second thought, but it’s something that shouldn’t be taken for granted. So please do that in honor of Rycker today and hopefully one day soon I will get to hold my son at home like we should be doing.
Rycker : the ups and Downs
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