Tysons Miraculous Journey

Many know our long journey many are new. So I would like to explain our life since 9-11-15. Our identical twin boys were born at 27 weeks. They were not due till 12-8-15. Tyson born at 1pd 12oz and Gabriel born at 1pd 15oz. Both boys had so many tubes and wires, and both were born so early they relied on ventilators to breath. Both boys fought very hard. Unfortunately our baby Gabriel gained his wingson 10-20-15@ 40 days old. Also our other son Treys first birthday. The boys had been diagnosed with a congenital heart defect called tetralogy of fallot. Meaning they have 3-4 major defects within there hearts. Prematurity alone was and has been there biggest enemy. Since Gabriels passing Tyson has struggled on many good and bad days, more so bad. He was on a ventilator for almost the first 70 days of life. He fought long and hard to get off of it, but he finally did it. On 12-7-2015 he was transferred to Rush University in Chicago Illinois. There he received his 10th blood transfusion since birth . Then numerous test, xrays, blood work, and echocardiograms on his heart. He had injections into his premature eyes cause he whats called retinopathy and did well with it. Two days later they operated on his PDA valve which had to be surgically repaired since it never closed at birth. He did well with it also. Then upon running a test to see about placing a feeding tube , they found he had malrotated intestines. So surgery was on 12-22-15 to place a central line in him, they fixed his intestines then while inside they discovered he also had whats called mekels diverticulum it to was repaired. They attempted to place his feeding tube but they called the surgery off. Five hours of surgery was to much for his little body. On Christmas eve he was taken off the ventilator from surgery, but he was so weak and his lungs exhausted. His right lung collapsed. After days of aggressive therapy his lung finally reopened. 12-30-15 He was transferred back to rockford memorial. He has hernias that need repaired but thats not a priority. He has many episodes in a day with his oxygen level and heart rate drops VERY low sometimes dangerously low. There is nothing more heart wrenching than to see this happen and the staff at rmh all pull together to work on him to get things back to normal. See normal is far from Tyson he has a very rare chromosome disorder it has no name but 19p13.2 deletion also the 19p13.12 but its so hard to explain but in short he missing pretty much half of each of these genes. Is there anyone out There like Tyson we may never know. There is only a handful of children in the world that have any chromosome defects on the 19th chromosome. Could this be where many of his problems stem from noone knows.I have been a nurse for 14 years, always on the other side of the medical spectrum. So our journey has been very long and we know far from over he needs open heart surgery also. This is the hardest thing we have been faced with in life. We have other children that we see and spend time with as much as possible. We have missed alot of first with our 15 month old Trey. Watching sick babies including our own, is mentally and physically exhausting. We lost our home due to no income for the past months.our home is literally all packed up in storage units. Our home we have come to realize is going to be here in the Rockford area. All of his doctors and specialist are all here they have become like our second family. We have no idea what gods plans are for us and Tyson. It will be a very blessed day when most of all he can come home but we already no its a long time off. Tyson has more surgeries to come that are huge ones open heart surgery also Tyson now is going to need a tracheotomy. The cost to even stay here at the Rockford memorial hospital guest centeris hard for us to even come up withat times. We need to find a reliable vehicle for our numerous trips to see our other children, trips to Chicago. The gas is even a stressor. We personally would like to thank anyone who is gracious enough to help us on our journey. The financial strain of having a sick baby and another one we lost and would like to get him a headstone is unreal. God bless you all and this is our journey.
Belinda Nair & Lawrence Larsen
♡♡and Baby Tyson♥♥