11 years ago, we found out we were expecting and I was so excited. I was very sick throughout the whole pregnancy. In and out of the hospital. At 14 weeks, I was diagnosed with severe preeclampsia and HELLP syndrome which basically hit the major organs in the mother the only way to cure it is delivering the baby. I was admitted to the hospital at 14 weeks until my due date. At 22 1/2 weeks I was very sick and they needed to induce me. Our daughter Grace was born she was only 8 oz and was alive for 6 mins. 2 years later my husband and I went to the high-risk doctor to see if we could have another baby. I was told because it was so severe not to get pregnant because if I were I wouldn’t make it through pregnancy I would probably die. To our surprise, a year and a half later I found out I was pregnant. I called the high-risk doctor right away told them I was pregnant and I was going to die because that’s what I was told. I was so scared. Again, I started off very sick in and out of the hospital right away. I had hyperemesis, which basically is a pregnant woman throwing up multiple times. I threw up about 20-30 times a day. I lost 60 pounds at the beginning of my pregnancy. I had to have IV therapy at home for my nutrients because I couldn’t physically eat. At 20 weeks, I suffered two strokes while pregnant and I was put into the ICU. I had to learn how to walk, talk, eat again, and write. It was a very scary time, especially when you wanted to talk and couldn’t (God had a reason for this I think). Three weeks later I got very sick again, and was back in the hospital in such severe pain. That pain was my liver and kidneys failing, meaning the HELLP syndrome was back again. The only way to cure me was to deliver the baby. My doctor had my husband call my family so they could say their goodbyes to me. I was not supposed to make it out of there alive. They did an emergency C-section. Before they did the C-section, I had to have blood transfusions. They were afraid I was going to bleed out. I made it out alive!!
On August 9, 2008, our beautiful daughter Riley-jo was born at 23 weeks 4 days. Weighing only 1 lb. 2 oz. only 10 inches long. She has been a fighter since the beginning. She spent 133 days in the NICU at Helen DeVos Children’s Hospital. We had many ups and downs. Riley-jo had many surgeries while she was in the NICU. She’s had a heart procedure when she was just 2 lbs., which is called patent ductus arteriosus PDA. She also has Retinopathy of prematurity (ROP) stage 3 which is a potentially blinding disorder she had 3 different eye surgeries. Riley also had NEC which is Necrotizing enterocolitis it’s a medical condition which is seen in premature babies where portions of the bowel undergo necrosis (tissue death). She had a section of her intestines removed. Riley also had Chronic Lung disease because she was born too soon, her lungs were underdeveloped. In 2011 Riley was hospitalized at Helen DeVos Children’s Hospital for pneumonia because her lungs are so weak she went down quickly. She was put in the ICU and we almost lost her. It was a very scary time in our life seeing her again back in the hospital.
4 years ago, Riley had a MRI the results weren’t what we were hoping. We found out our daughter had “pontocerebellar hypoplasia”. Which is a fatal brain disorder. The kiddos that have this disease can’t walk, talk, or even sit up on their own. That’s not our Riley who runs, skips, and hops, so we had genetic testing done, which came back negative. The neurologist still think it’s a mutated version of that disease. So, is it fatal for her? We do not know. We just keep on loving her daily and keeping her as happy as a little girl can be!! Riley-jo is delayed in a lot of areas such as her fine motor skills and she is non-verbal (God’s reason- I knew what it was like to not being able to speak I know what my daughter is going through daily).