Levi
At our routine anatomy scan, we learned Levi had a lower urinary tract obstruction (LUTO), which was preventing his urine from leaving his body. As a result, his bladder backed up into his kidneys, causing major kidney damage. After a consultation with the fetal therapy team at Johns Hopkins, we decided to participate in the RAFT trial, which involved serial amnioinfusions to replace the amniotic fluid around Levi so he could continue to grow and develop his lungs. My husband Zack and I temporarily moved to Baltimore to be close to the hospital for the trial and Levi’s neonatal intensive care unit (NICU) stay.
After almost four months in the NICU, we were finally discharged! Bringing Levi home was terrifying. He was our first child, so we had all the usual newborn nerves, along with all the medical bells and whistles that come with him. We wouldn’t have been, or continue to be, as successful as we have been without his pediatric nephrology team. They have continued to make themselves available day and night whenever something comes up.
A few months ago, something scary happened at home, and the promptness of Levi’s team made it much less frightening. We also recently ran into an issue with one of his formula supply companies, and one of his nutritionists met with me to call them, resolve the issue and provide extra formula so I didn’t have to worry.
Getting admitted is never fun but knowing we would see familiar faces from nurses to coordinators to social workers made the hospital stays a little easier on all of us. It was not uncommon for members of his team to give me their cell phone numbers in case of emergency, which adds an extra layer of comfort.
Levi is on dialysis at night while he sleeps here at home and is thriving. We are working towards growing big and strong so he can receive a kidney transplant. Despite everything he’s been through, he is such a happy boy! He loves playing with his dog, Meadow, and going on walks outside. " Johns Hopkins Children’s Center has gone above and beyond not only for Levi, but for me and Zack as his parents as well. I truly don’t know what we would do without Johns Hopkins Children’ Center.” – Levi’s Mom
