“I refuse to believe that this day is already here. My baby is officially 1! It feels just like yesterday that I got to hold you for the very first time. You have come so far, baby boy. You’ve beaten leukemia, liver issues, oxygen issues, stomach surgery and open heart surgery.
In just one short year you’ve shown us all what it’s like to have true greatness and strength. I know you are going to accomplish amazing things in your life and you will prove to everyone that there is nothing scary about Down syndrome, but instead that it’s something to celebrate every day. I’m blessed and grateful every day for the miracle of you.
To start from the beginning, we had a lot of ‘bumps’ in the road while I was pregnant with Ryker. When I was 12 weeks pregnant I was told that he was going to have Down syndrome. The doctor that gave me the information was rude, to say the least. At the moment, I didn’t want to hear ‘I’m sorry,’ or that I could terminate my pregnancy. That was never a thought I would ever have.
I switched doctors, and at the 19th week mark I had it confirmed with an amniocentesis that he did indeed have Down syndrome. Now that doctor was wonderful. There was no pressure to have my pregnancy terminated. Instead, it seemed more of a welcoming feeling that I just won the jackpot with my child. And sure enough, I did.
When I was 24 weeks pregnant we found out that Ryker had duodenal atresia, meaning that he needed to have surgery on his stomach and intestines because they were not connected properly. Because of this issue, I was induced at 37 weeks pregnant. A doctor could do for him on the outside rather than on the inside.
The moments following Ryker’s birth, we got hit with a ton of bricks to say the least. Minutes after he was born they rushed him off to the NICU, which was expected. However, about 10 minutes later, two doctors came in and the only thing that registered with me was, ‘Your son either has an infection, or he has leukemia.’ My heart stopped in that moment. I didn’t know if I was ever going to be able to take my son home, or if I was going to lose him.
It turns out that Ryker was born with Transient Myeloproliferative Disorder (TMD for short). TMD is a megakaryocytic leukemia, which can be lethal or can resolve over time. He was in desperate need of a platelet and red blood cell transfusion. His white blood cells showed that he had 40,000 of them (3 times the normal amount) and 10,000 showed cancerous cells. With TMD, it also seemed to affect his liver. His bilirubin was trending upwards and we didn’t know why. When he had a liver biopsy, it showed that there was some scarring and an abnormal amount of iron in his liver. (Side note, his middle name is Stark; after Tony Stark aka Iron Man.)
The major reason he had to be born early was the duodenal atresia. When he was 7 days old they performed the surgery. It took about 4 hours total, but his stomach and intestines were now connected properly. Once he was healed (7 days later) he was able to eat for the very first time. On March 21st (World Down Syndrome Day), he was able to start eating at 5 mL’s every 3 hours. Eventually over time the feeds increased. They also noticed while doing blood work over time that he also has hypothyroidism. Giving a baby a crushed-up pill every morning with their formula isn’t the easiest thing.
While in the NICU, Ryker was on oxygen. No one knew exactly why he needed it, but his saturations were always in the 80’s without oxygen. When he finally did come home 6 weeks later, he was still on oxygen at home. He stayed on it until the end of June. The next hurdle we had to overcome were the holes in Ryker’s heart. He had a large ASD (atrial septal defect) and multiple VSD (ventricular septal defect) as well as a crooked pulmonary vein. We were told for months that he most likely wouldn’t need any intervention until he was about 2 or 3 years old, but that changed in September. They noticed that since coming off of oxygen, he developed pulmonary hypertension and the pressures in his lungs were too high for his heart. The right side of his heart was working extra hard and had become larger than the left side.
December 11th, we went to Strong Memorial Hospital where Ryker had open heart surgery. Another 3-hour surgery, but everything was fixed. The holes were closed, the crooked vein was fixed and our little boy wouldn’t need another heart surgery down the road. He took a week to recover in the hospital. It was a long road before being able to go home. Nothing is worse than seeing your child in pain and not being able to do anything. Watching him lay there helplessly and in pain, broke my heart.
This past year was difficult — he also has physical therapy, occupational therapy, aquatic therapy and soon, he will be starting speech therapy once a week. He is delayed with some milestones like crawling or standing, but can you blame him? He’s been through so much fighting for his life for this past year.
As a first-time mom, I never envisioned my life being all about doctor appointments and learning so much about the health field. I never envisioned that the words Down syndrome could mean so much. This may not have ever been in my plans, but I’m so glad that it is my journey. I will always try to raise awareness for my son and others. I will always try to let people know that yes, the health issues that may arise are scary, but a child with Down syndrome is a blessing. I really did hit the jackpot with this kiddo. I tell Ryker every day, that I am the one who is blessed to have him in my life.”
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