“It was the night of November 26th. My appetite had been crazy that whole week, my breasts swollen, and my stomach a little nauseous. I just had a gut feeling I was pregnant. After picking my fiancé up from work, I knew the first thing we had to do before going home was to pick up a pregnancy test. I got home and went straight to the bathroom. We then waited what seemed like the longest 4 minutes of my life. We saw one line and soon another, I was pregnant! I knew right then and there it was a boy! So many thoughts ran through my head. Most of all, shock and excitement since I had been told previously that I would have trouble getting pregnant after the loss of my first baby. I just knew he was special, I even said those exact words to my fiancé Jeffrey.
Shortly after finding I was pregnant, Jeffrey lost his job and we soon lost our apartment. Basically living out of car, paying out of pocket for doctor appointments because we couldn’t afford health insurance and not knowing where to turn next or where we would be when our baby was born. After trying like heck to get healthcare in Florida I knew the only thing to do was to come back to my hometown of Pittsburgh, Pennsylvania. Plus we had family there. I moved up first and Jeffrey shortly followed suit. We had no idea where we were going to live, we just knew that we couldn’t do this alone and that it would be best to be close to family. After about 2 weeks of staying with friends, Jeffrey soon arrived and we started looking for a place to live. We had spent all of our savings moving up here staying in hotels. We were basically out of money and struggling badly. It was March and I was about 5 or 6 months pregnant. We knew we had to find a place to live and we had to find one fast. We were living out of our car and not knowing where our next meal would come from.
Jeffrey soon found a job started working his butt off to provide for us, so we would have a place to live by the time the baby got here .We were hoping to find a place near Jeffrey’s mom who has dementia and is in a nursing home. We were struggling to find a place that was affordable, and at that point we weren’t even sure if we would have enough money to stay in a hotel let alone have enough for first month’s deposit. By the grace of God, we were put in contact with a priest in our area. He not only paid for a week in a hotel but got us in contact with someone who could help us with a deposit on an apartment and first month’s rent. The same day we got the keys to our apartment was the same day we got the most life altering news regarding our pregnancy and our baby.
I had started my prenatal care a month earlier. We were on our way to our first growth ultrasound. We brought a DVD disc so we could have this special moment forever. Right away she confirmed what I had known from the beginning — that we were having a little boy! I was so happy, we already had a name picked out. This was our little Rycker. About halfway through the tech left the room. When she came back she said we needed to schedule a fetal echocardiogram, that the lining around the heart needed a more in-depth look. It was supposed to be a joyous day, a day we got to hear our healthy baby’s heartbeat, and find out how big our baby was! She also mentioned his limbs were a little shorter than normal, which at the time we thought nothing of because of Jeffrey and I’s small stature. After we left I couldn’t help but start researching. I found all sorts of things on the internet, and all that did was just make me worry more.
We had the fetal echo scheduled after a brief stint in the hospital with a kidney infection. The day of the echo we were so worried and anxious to find out what was really going on. The tech took about 30-45 minutes looking at the heart from all angles. When she was done she said the doctor would be in to take more pictures and speak with us. I tried to keep strong for my fiancé. The doctor came in and started taking picture after picture, for what seemed like an eternity. I knew at that point something was really wrong. I couldn’t help but start shaking. After she was all done she said she needed to speak with us in another room. Again, my heart dropped.
She sat us down and told us our little baby boy had 2 holes in his heart known as Atrioventricular septal defect (AVSD). As if it couldn’t get any worse, she said it also looks to be that there is a blockage on one side of the heart that would need immediate open heart surgery as soon as he was born. Jeffrey and I just looked at each other with tears in our eyes. I remember seeing a tissue box and basically just grabbing it and not being able to stop pulling tissues out of it. I knew after that day that I would never be able to look at a tissue box the same way ever again. She then proceeded to tell us that we would have to meet with genetics right after, because that particular defect usually was related to a genetic disorder. It was just bad news after bad news, I honestly felt that it would never end. I wasn’t sure how to cope with one thing only to be bombarded with another. I was just scared, at this point I didn’t really know what to feel. We then met with Michele from genetics. She told me that I would need an amniocentesis (when they stick a very large needle into your belly to draw fluid from the amniotic sac). That the particular heart defect Rycker had, a lot of the time was related to Down syndrome. It was the last straw, I thought at the time it really just couldn’t get any worse. So many thoughts a mother shouldn’t have ran through my head. I thought if God could give me this baby, why would he make him suffer like this? After I got back to my hospital room I cried uncontrollably for an hour straight. The only good news we got that day was that we had gotten the apartment we wanted. I was extremely happy, but I felt our new chapter was now going to be even harder than the previous chapter of struggles and unknowns. It was supposed to be a happy time in my life, now for it to only be tainted by even more despair and uncertainty.
It was a few days later, May 11th, when we got the call from our genetic counselor, Michelle. She said, ‘I am so sorry to tell you, your son has something called Trisomy 21, 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. 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: ‘It was completely random.’
The thoughts and emotions after this call and getting our diagnosis is pretty much a blur. 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 two 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, that we met with the amazing Sheila Canon from the Down Syndrome Center at Children’s Hospital in Pittsburgh, who answered all of our questions (2 pages full). Jeffrey 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, our genetic counselor told us ‘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 chose 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 19, 2017. Our little boy Rycker was born at 6:24 a.m., 4 pounds, 9 ounces by emergency C-section after his heart kept going into deceleration with every contraction. 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 when he was transported to a Children’s hospital that could handle his condition and prepare him for his surgery. It was the hardest thing I could have gone through as a mother. If it wasn’t for the extreme amount of pain I was going through 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 the room and 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. Despite all the worries if he knew I was his mommy, I felt a love that I had never felt so strong. He knew I was his mommy and I knew in that moment this was my son, my perfect little boy. But I suddenly became struck with an utter despair and depression of the reality that was ours — here was my perfect boy, and boy was he perfect – and he has so many health issues. I suddenly felt sad for myself 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 or getting to take my baby home. Our reality is that in an instant, we can end up back in the hospital, not being able to hold him, and not being able to go home. This is our life now and as perfect as our life and he was, I know that it is fragile too.
Those 5 months we were home were some of our best months so far, even though we had some struggles, one of them being our breastfeeding relationship, they were fantastic! At 2 months old I decided it was time to tell our story. It would be the beginning of our first blog. ‘Rycker: the ups and Downs.’ At the time I had no idea how much support we would have and how it would one day grow. Rycker’s story would inspire thousands of lives across the world! We blogged about everything in those early months. Rycker’s first smile, Rycker’s first laugh, our breastfeeding journey. After being told Rycker might never breastfeed, after 3 months of exclusively pumping and not breastfeeding, I was more determined than ever to prove the doctor’s wrong! After we got the go ahead from our cardiologist, we started putting Rycker to breast every chance we got! There were days Rycker would scream his little head off, there were days I would scream MY head off! We stuck with it though, and after about a month, a terrible latch, many tears, trial and error, Rycker breastfed for the first time uninterrupted for 15 minutes on October 22, 2017, a few months before his open heart surgery. That along with many other triumphs and tribulations, smiles and tears, has been shared on Rycker: the ups and Downs, a name at the time I didn’t realize would be so fitting.
On January 9th, ten days before Rycker’s 6-month birthday, he went in for his first open heart surgery.
It was a day that we would never forget, a day that Rycker would never remember, thankfully. 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! It was very intense. 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. As he came out, 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 I saw when we found out, that tissue box 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 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 if 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. 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. Rycker has pulmonary hypertension. His aspiration issues would lead to him getting a feeding tube (G-tube), his 3rd surgery in less than 3 months.
Rycker has since had many issues since returning home. Just when I thought we were in the clear, things would soon take a devastating turn.
On April 9, Rycker went into a Pulmonary Hypertension crises and full cardiac arrest. Rycker turned blue and went limp in my arms. I can remember the seconds like it was yesterday. He started to cry uncontrollably, which was very unlike him. He was such a happy baby. I remember hearing that screeching cry almost as if he were in pain, it almost chokes me up as I write about it. I am taken right back to those terrifying few minutes. He kept crying. I tried to hold him in my arms and console him, I knew something was very wrong. He then started to turn blue, and I remember his big eyes staring up at me – they were like an endless pit of blackness. He was scared, and I couldn’t do anything to help. That’s when he stopped breathing and his body went completely limp in my arms. I knew immediately if I didn’t act, I would never see my son’s smile again. After nudging on my baby’s chest to wake up and having no response, I immediately started doing compressions. After what felt like forever, my son soon started wailing. I never thought I would be so happy to hear the sounds of a screaming baby. By the time Jeffrey and the police got to the house, my son was still blue, but crying. We were then rushed to Children’s hospital. I can say without a doubt if it wasn’t for a CPR class I had taken when he was in the NICU, my son wouldn’t be here. I have made it my mission to let others know the importance of CPR.
The day after his cardiac arrest I decided to tell of the event that almost took my son’s life on our Facebook page. That post would soon reach almost 100,000 people, and is still being shared today! We have received messages from people all over the country wanting to take a CPR class. We decided after a few instructors reached out to us that we would have an event through our foundation, The Rycker’s Heart Heroes Foundation, to teach CPR. I feel that CPR should be mandatory for parents to learn before ever leaving a hospital with a baby. It’s a simple 30-minute class that everyone should learn. You never know when you might have to use it. No parent should ever have to see their child like that and hold their child’s lifeless body in their arms. I have since had some issues with PTSD and have struggled with being by myself around my son.
Rycker has since endured another Heart Cath procedure which only left us with more unanswered questions. He will need to undergo further testing and studies to find out why he has been having these episodes. He has had a total of 4 more minor episodes since the first cardiac arrest. All we can do now is pray, pray that we receive answers. He is on 6 different medications, along with oxygen and his feeding tube in his stomach. Through it all he remains strong, and no matter what obstacles are thrown in his path, he still has a smile on his face and a light in his eyes.
During our over 2 months in the cardiac units at Children’s Hospital, we saw the need of so many other families. If it wasn’t for the support of the #Ryckersheartheroes and our Gofundme page we would have never made it through! Having a child in the hospital can be very costly and stressful. We decided to start our foundation, The Rycker’s Heart Heroes Foundation, to help families affected by CHD (Congenital Heart Disease). It’s our mission to provide support, give hope, and raise awareness to and for families affected by CHD. One of our major projects is The Rycker Roo project to give Mamaroos (a robotic infant swing that moves with the same motions as a mom) to Children’s hospitals and to families in need when they are discharged from the hospital. We have provided over $3,000 worth of Mamaroos to Children’s hospitals and families.
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 we would be where we are today, advocating and raising awareness for congenital heart defects. Rycker’s story has become not only a passion but the reason why I wake up every day. It has become my reason, my why!
I have had many people ask me, ‘Would I go back and change anything?’ I look back on that time when the genetic counselor gave us our diagnosis and 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 you didn’t know you had. A beauty that you hadn’t known existed. A friend told me something that has stuck with me: ‘Special moms are made for special babies.’ I believe that whole heartedly. Rycker is destined for greatness and he makes me feel like I might be too. He wakes up with a smile on his face every day. 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 and can only wish to have half the strength he has. I can only hope he will one day look up to me as I look up to him.”
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