Levi Kristopher Pernot

First post: Nov 25, 2021 Latest post: Feb 9, 2023
October 31st changed our lives forever! Trevor and I were blessed to welcome a tiny human to our family. We were overcome with love and joy to be able to bring Levi Kristopher into this world. Some of you may be reading this and have never known we were even expecting. Please know it was not our intention to withhold this news from any of you. However, our journey started much earlier. We have a challenging story and our journey is unique- as so many of yours are as well. We refrained putting any information on social media as both of us understand the pain and discomfort that is felt when friends, family and acquaintances have something you so desperately desire. Infertility, miscarriage, pregnancy loss and infant death are devastating and more common than anyone would expect. What we didn't know is that our journey with Levi had only just begun. 

On November 5th, Levi was diagnosed with a rare congenital birth defect that only affects 1 in 30,000 children. Levi has Pierre Robin Syndrome / Sequence. It is characterized by a trifecta- a small lower jaw, a u-shaped cleft pallet, and a tongue that rolls to back of the mouth. The combination of the small lower jaw and improper placed tongue have made caring for Levi extra challenging as his air way is compromised. This leads us to today! 

We are currently writing to you from the American Family Children's Hospital Neonatal Intensive Care Unit. We made the difficult decision to be admitted after our appointment yesterday with hopes that we can celebrate Christmas with all of our family and friends from home. Levi's journey is far from over but we are incredibly grateful for the team caring for Levi during this phase of his treatment. Tomorrow will be a big day for Levi as we start the procedure to correct his tongue and jaw with mandibular extraction surgery. 

We don't have all the answers yet and will update everyone as frequently as we can. We also don't exactly know what our needs are and how we can be supported but know that your kind words and messages do not go unnoticed and are greatly appreciated. Please hug your family and friends a little tighter and cherish every moment.

Give grace and be kind! With Love- Trevor, Danielle and Levi