Jasiah's Story (Jefferson)
My name is Aliya Thompson and I’m going to share with you Jasiah’s story in the NICU of OSF. Part of me procrastinated to write this because writing this means re-living it. The other part of me just didn’t know where to start.
It all started with the positive pregnancy test; I conceived Christmas of 2014. I had a normal pregnancy for the most part, besides the nausea and normal symptoms pregnancy causes. When it came time to find out the gender his dad and I had already picked out names. We both really wanted a boy, and that’s exactly what we got! In the same day of getting the good news, we also had bad news. The doctor’s had told us what they found in the sonograms and explained that Jasiah would be in the children’s hospital right after birth. Telling us that our son had gastroschisis, an early development issue in his abdomen where it didn’t finish growing, leaving his intestines on the outside of his belly while he continued to grow. I was also told that I would be having a planned c section for safe delivery. They planned on surgery 3 weeks early; I would give birth at 37 weeks to prevent his intestines from getting inflamed and infected from sitting in my fluids too long. It was a lot to take in at the time, I was 19 years young and emotionally alone during this time, his dad and I separated while I was 3 months along. I was scared and didn’t exactly know how to process things just yet.
I was then considered a high-risk pregnancy not because of his birth defect and being early delivery but also because I was recently diagnosed 2 years prior to this with ITP. It is a blood clotting disorder that will lay dormant in my system forever. So, I was seeing more than one doctor after this, getting my blood taken every week, checking my levels all the time. Considering all that the pregnancy went pretty smooth, without complications. Just a lot of emotion and fear.
The day came to finally meet my boy, preparing myself up to this point I woke up that morning still scared out of my mind! Praying that everything would be okay. We prepped for surgery at 6 a.m. and at 8:28 a.m. I heard his cry for the first time.. getting a quick glimpse of his precious face they then rushed him to the NICU and his father followed. Born on 9/11/2015 weighing at 6 lbs. and 18in long he was just perfect. I on the other hand, had to be sewed up and put in recovery for 24 hours… I did not get to go see Jasiah right away. When I finally did it hurt so bad, to see him in the condition he was in. Having a c section really hurt for weeks. I couldn’t cry, I couldn’t laugh, it hurt to cough or sneeze. It took me awhile to be able to walk without pain but after a few days I set up camp in my boy’s room on the cot, and I never left.
As I got to meet the team of nurses up there, I grew more comfortable knowing what great hands my son was in. They walked around with monitors on their necks so that if anything was wrong, they would know! I also got to meet with the surgical team every morning for updates and what their plan was to help Jasiah. Every day, they came in and pushed little by little his intestines back in. Siah laid in his bed on his back most of the time in the beginning, on pain medicine, with a halo hanging above him holding his intestines in a bag. A week went by and they had finally successfully pushed his intestines back in and it was time for a final surgery to sew him up. Surgery was successful. He was on oxygen, he also had tubes going down his throat and that was to indicate when his intestines actually started to work so I could finally feed him through a bottle. Because he was on tubes and always was connected to wires we couldn’t hold him right away, I couldn’t feed him right away. While we waited for his intestines to work, he was already being fed nutrition through a tube they put in his main artery in his neck. Meanwhile, through a few complications we waited and waited, I was pumping my breast milk and freezing it so when the time came he could still be a normal baby and have his mothers breast milk. Even though this wasn’t a normal delivery or a normal pregnancy, I tried to make it as normal as possible. I did my laundry at OSF, I ate 3 meals a day there, I took my showers there. Day in and day out I never left his side. There were nights I fell asleep over his crib holding his binky in his mouth so he would sleep. The tubes down his throat didn’t allow him to keep the binky in his mouth and I spent a lot of long nights not sleeping and propping his binky with a small beanie bag. In between pumping breast milk and making sure he was asleep and recovering from surgery, I look back today and still don’t know how I got through these nights.
The day came that we finally got the okay to feed him his first bottle of breast milk!! From here on out it was a waiting game, watching his progress and seeing how he developed with milk, making sure he had bowel movements. After a month of progress, finally off oxygen and tubes were out, he got his hospital pictures done. Shortly after those pictures we were doing his car seat test. The 38 long days we spent in the NICU felt like forever, but when I look back now it was a small part of our lives that made us both strong for life. Even though Jasiah doesn’t know what a fighter he was, I do. I always remind him that the scars he has are battle scars. I remind him that he is a soldier who fought so hard and survived! As little as he was, man he was strong. On some days I think he was stronger than me and strong for the both of us. Now that he is 7, he can understand things a bit better and when we talk about his belly button I tell him he has an “outie” and there are other kids across the world that went through the same battle and have a similar bellybutton as him. His story made him one of a kind, his surviving fight made him Jasiah Abel Amiri Jackson. And surviving this crazy condition, it made sense to give him that middle name, Abel.
Jasiah lives a normal, regular little boy’s life. He loves basketball, he is competitive with games and anything else boys get into. He bounces off the walls when he’s tired, and sneak’s snacks without asking. He is also a big brother to 3 other kiddos on his dad’s side. Jasiah is an angel sent from above in my book, this boy is my miracle and my angel, and I couldn’t thank OSF children’s hospital enough for the miracle they helped with. Without them and from the man above, he wouldn’t of had a normal life. Everyday his scars remind me of that, and forever they will.
Thank you for choosing Jasiah to represent the Miracle child this year for Jefferson Elementary.