UPDATE: Aayan passed away September 18th at 11:39pm in his fathers arms. Thanks for all the prayers and support, we are truly devastated but know he is finally at peace. If this experience has taught me anything it’s to appreciate life and every moment you get with your kids. We would have gave our lives to save our son’s. Please continue to pray for healing and understanding for us as we try to continue living life without a piece of our heart. 

Hi, my name is Devaun. I’m asking for help to support my family while me and my fiancé fight for our son’s life in the NICU. We are living any parent’s nightmare and relying on each other for strength and comfort. Our son Aayan Ali (God’s Gift) was born at 26 weeks gestation on August 11th and has given us so much joy in his 5 weeks of life. He was an overall healthy baby that just showed up too early to the party. He is at one of the best highly ranked children’s hospital in the Midwest, very sick, very swollen and on maximum life support. He has at least 30 doctors, nurses, respiratory therapist, and specialty teams at his bedside working together to save him every day. Despite being at one of the best and advanced hospitals he is undiagnosed. The doctors have never seen a healthy but extremely sick child like him. Every blood test, culture, ultrasound, x-ray, virus and bacteria test has come back negative. He was suspected to have NEC, but showing not enough signs to confirm. Our beautiful baby boy went from spitting up a little and no pooping to the sickest baby in the whole unit in a matter or 3 days. Swollen past recognition. He was rushed to the new NICU on Sunday and by Wednesday they were telling us there is nothing else they can do and to say goodbye. The most heartbreaking words you could ever hear as a parent. My fiancé took it extremely hard where I couldn’t fully grieve the situation because I had to lift her up from her lowest point. We cried and begged God to spare our son. We were at a complete loss. But something told us it was not the end. We asked the doctors to do the surgical procedure that checks sick babies for dead intestinal tissue. They were against it, they said he wouldn’t survive, they said it wouldn’t help. We didn’t care our son’s life was worth more than every risk. They did the surgery while me and his mother waited outside his room preparing for the worst. He survived the surgery and was stable! A miracle! The doctors inserted a drain for the fluids and left his stomach contents on the outside of his body to try and alleviate the pressure on his organs in an attempt to give them the space to jump start again. Each day since the surgery has been a different focus and shows that our son is stronger than we could have ever imagined. We were concerned that his kidneys have failed as he hadn’t produced any urine in 4 days. Then, urine and poop! Slowly he has improved on things like his breathing, heart rate, organ function, his size has decreased significantly as he’s lost a lot of the fluid that put an extra 3 pounds on his body in less than a week! He is not out of the woods as he is struggling with his blood pressure being too low daily which is critical in maintaining his heart and organs. We are haunted by constant monitor alarms and beeping, obsessing and critical of every little number as we look forward to him finally making his turn towards full recovery. Medically, they aren’t willing to recognize his improvements as significant, but these are all things they said he wouldn’t be able to do so me and his mother make sure we tell him we’re proud of him, how strong his is, we are here to support him and to keep being strong and fighting hard. We constantly speak life into our son because they seem to have no faith in him. We have completely devoted our lives to him living in the hospitals and staying at his bedside 24/7 regardless of how intimidating, gut wrenching, disheartening, and scary it is to do. This is a hard financial burden on us as we are not working and have almost completely blocked out everything outside of his hospital room. We are asking for support whether monetary or in the form of prayers to continue to fight and advocate for our son’s healing. We are having a tough time keeping up with bills, our transportation is gone and we rely on Lyfts and Ubers to go home and check on our teenage twins and 10 year old daughter. My father in law has moved into our home to take care of them while we stay with our son. He has been our ONLY support during this tough time so we are humbling ourselves and asking for any help we can get in any form! I wouldn’t wish this on the worst person to endure. Thank you for taking time to read our story, pray for Aayan, and leaving any kind words of support. We are grateful even if this helps someone else cope with their NICU baby’s journey because things could always be worse! We would love to update anyone interested in how Aayan is doing daily via private messages also! #RileyChildrensHospital #PreemieLivesMatter #MicroPreemieStrong #PrayersForHealing #SendingLoveToAllNICUParentsandBabies #GodBlessYouAll