Leaps 4 Levi

Levi was born in June of 2021. He was born at home via planned homebirth. His birth went beautifully, and the first two days after his birth were fairly peaceful. Our midwife team made a few visits to our house to check on him because his pulse oxygen level was not quite where they had hoped it would be. Also, he was fairly lethargic. Two days after he was born, we made the decision to take him to our local pediatric Emergency Department. Once we got there, the doctors did an X-ray and found a blockage in his intestines. He was then rushed by ambulance to the NICU at John’s Hopkins Children’s Hospital.

Upon his arrival at Hopkins, the NICU team ran a battery of tests to try and figure out what was going on. The doctors discovered Levi had Meconium Ileus which he had passed on his own with out any surgical intervention. While in the NICU, he was treated for a couple of infections and was on a course of strong antibiotics. After he was treated for the infections, he needed to work on his weight gain. After many days a little weight gain, the doctors performed a genetic test due to a suspicion something was wrong. Shortly thereafter, Levi was diagnosed with Cystic Fibrosis.

Cystic Fibrosis, or CF for short, is a life-shortening genetic disease. CF causes damage to the lungs, pancreas, digestive system, and other organs of the body. Normally fluid in the lungs and other organs is slippery and thin, but CF causes a thick sticky mucus in the lungs that is very difficult to cough up. The mucus that is supposed to act as a lubricant in the body actually clogs up passageways in the lungs and pancreas.

Although Levi has CF, CF does not have Levi! He is such a happy, beautiful little boy! Thanks to our wonderful CF care team and the medications that he takes daily, he is growing like a weed and has turned into such a chunk. He may not love doing his Chest PT or his Nebulizer time, but we get it in as we know how important it is for his lung health. His mom and I are so incredibly proud of him for all that he has endured and all that he will endure. We may not be able to fight CF for him, but we promise to be with him every step of the way!

We ask that you consider joining our team or donating to help fund a future for our son Levi and so many others.