Child's Birth Year
2019

State/Province/Territory
Missouri

NICU Hospital for my journey
University of Kansas Hospital

My NICU Graduate's Journey
Lucas was born at 27 weeks after mom’s water broke Unexpectedly at 17 weeks. At 20 weeks, he was also diagnosed with tetralogy of fallot congenital heart defect. He was born at 2 lbs. and was just a true miracle! He had his first brain surgery at a month after a brain bleed led to hydrocephalus. The brain bleed came back and he had his second brain surgery at just 2 months old. At 4 months old after having episodes when he ate when we threw up everything, heart rate would drop and oxygen drop, he underwent a fundoplication that tied his stomach and a gtube was inserted. After 5 long months in the NICU, we went home just in time for Covid! lol After our own isolation, in June 2020, Lucas underwent his first repair for tetralogy of fallot and it was hard as only parents, no other support allowed. They told us to plan for 3 weeks, but Lucas decided he needed to see his brother and grandma, so he got out in one week!

In spring of 2021, Lucas started having infantile spasms, a very serious form of epilepsy that can only be under control with medicine that has horrible medication and requires hospitalization. After trips to mayo clinic and lots of doctors, we found the right med for Lucas and he endured daily shots that made him feel horrible, but controlled his seizures. We keep monitoring, but Lucas is strong as he is with every obstacle. Doctors and specialists told us multiple times to let him go and he would have no quality of life , never even smile. Lucas is the happiest strongest little boy and brings joy to everyone he meets. He finds ways to communicate his love even though he is nonverbal. He can feel our love and how special people think he is, these ramps would help Lucas hopefully be more independent and help is physically get him into house! Lucas He loves music, Barney the dinosaur and his older brother Landon most of all! He works so hard daily in all of his therapy to make any progress we can, his favorite are horse and aquatic therapy! He also loves being around other kids and thrives at his little school where he works with the most amazing teachers and therapists daily!Lucas is our angel on earth and I feel like sometimes when I see him just smiling in the air, he has a direct line to God and just knows so much more than we do!

Lucas is an amazing little boy that fights cerebral palsy and epilepsy with his tenacious and infectious personality! Lucas loves equine and aquatic therapy

What makes you proud of you NICU graduate?
Everything! This boy is a warrior and the strongest and sweetest kiddo around, I am so honored to be his mama! He brings light wherever he goes and is such a change maker already in this world!

Weight at Birth (lbs. or Grams)
2 lbs 5 oz

Weeks Gestation
26 Weeks

Time spent in the NICU (Specify Day, Month, or Year)
5 Months