Yesterday marked a significant milestone in the life of our little warrior, Elijah. After weeks of medical challenges and intensive care, Elijah began a crucial phase in his healing process — fistula refeeding. This procedure involves gently reintroducing what’s collected from his ileostomy bag back into the unused portion of his bowel. The goal is to help his bowel wake up, grow stronger, and prepare for his eventual reattachment surgery. It’s a slow, careful process designed to help Elijah’s body learn to digest food again, support his healing, and even protect his liver.
While this step forward is vital, it hasn’t been without its challenges. Yesterday was largely trial and error. For a baby as small as Elijah, working with a stoma, a fistula, and an incision wound all at once isn’t easy. The ostomy bag has to be carefully placed, and with Elijah’s tiny body, there’s very little room to work. We spent most of the day troubleshooting how to make it all work. His ostomy bag is nearly as big as he is, but after lots of adjustments, we think we’ve got a solid plan in place for now. Of course, as Elijah grows, we know we’ll have to make further changes, but for now, we’re moving in the right direction.
Adding another layer of complexity to the process, Elijah is hot-natured like both of us. Combine that with the plastic bag, sensors not sticking properly, and a bed that heats and cools based on the temperature sensors (to help regulate his body temperature), and it was a recipe for Elijah to get overheated. One key thing we learned during this experience is that babies as small as Elijah don’t usually spike a fever when they’re sick; instead, they often drop their body temperature. This helped us realize that Elijah’s temperature issue was environmental and not a sign of illness. Once we adjusted him to room temperature air, he cooled down, and we were able to get him comfortable again.
Another major win came later in the day when Dr. lowered Elijah’s CPAP PEEP (positive end-expiratory pressure) to its lowest setting of 5. 🙌🏻 This is a big step forward, as his next phase will be transitioning to a high-flow nose cannula, and eventually, he’ll be able to breathe room air on his own without any assistance. Even more exciting, Elijah is tolerating his feedings so well that we no longer need his PICC line or any IVs. This is a huge achievement, and we couldn’t be prouder of him.
As of today, Elijah weighs 2 pounds 11.5 ounces. He is now 31 weeks and 1 day corrected, although he’s technically 5 weeks and 2 days old. The weekend doctor, in a moment of affection, dubbed him “Hulk Baby,” because when Elijah gets mad, he’s really mad. It’s actually a good sign, as doctors prefer to see babies with a little fight in them. It usually means they’re tougher, and we’ve certainly seen that in Elijah. The last picture we received even captured his “angry side,” though I normally crop out his bag for privacy—today, I didn’t. It’s real life for us right now.
Yesterday, I had the honor of holding Elijah, and today, it was Dad’s turn. Elijah made sure to leave Dad a little surprise on his chest — a reminder of just how special our days together are. We’ve both officially been christened as parents in the most memorable way! 😅
We are so incredibly thankful for every bit of progress, every problem-solving nurse, and every patient doctor who has been a part of Elijah’s journey. We’re also immensely grateful for the endless prayers and support from our community that continue to carry our little boy forward. One day at a time, we’re learning to take each step as it comes, celebrating the small victories and remaining hopeful for the future.
Elijah’s journey is far from over, but today, we are filled with gratitude for how far he’s come. Every milestone, no matter how small, is a victory. We are incredibly proud of our son and can’t wait to see what the future holds for him.
Thank you to everyone who has been part of this journey, supporting us, praying for us, and lifting Elijah up with love and hope. Your strength and encouragement mean the world to us. 💙
