03/03/2026
This isn’t the update we were hoping to share. Jax is still struggling and not tolerating his feeds. After exhausting multiple formulas and medications and seeing no improvement, we met with Gl and the next steps are hard but necessary.
On Monday, Jax will undergo an upper GI study, followed by another procedure that requires him to be placed back on the ventilator. Anyone who has followed our journey knows how much of a battle that is and how incredibly hard it is on his little body every single time.
During this procedure, they will place a GJ tube (like they attempted before), but this time it will be done with a scope. They will also be injecting Botox into his pyloric sphincter to help relax the muscle, as tightness there can make it difficult for him to digest his feeds.
It breaks my heart that he has to endure yet another procedure, but we are holding onto hope that this will finally be the answer-helping him tolerate feeds, gain weight, and grow stronger. He is currently back down to the same weight he was when we were admitted on January 6th, which is devastating to see after all he’s been through.
Please keep Jax in your prayers. Pray for steady hands, no complications, and for his little body to handle all of this with strength and grace. We are so grateful for the love and support surrounding us during this incredibly difficult time.💙🙏 the donation link is in the bio Please consider donating, sharing our story, and lifting our baby boy up in your prayers. Thank you from the bottom of our hearts.
