December was not the month we hoped for. We wanted so much for the boys to have Christmas together at home—to wake up in their own beds, to experience the magic of the season side by side, and to finally have a holiday that felt simple and whole. Instead, we found ourselves back in the hospital, spending Christmas surrounded by monitors, IV pumps, and fluorescent lights.
Frankie was admitted over the holiday, and once again everything shifted into survival mode. I took him to the Emergency Department at the children’s hospital on the Saturday before Christmas, thinking he had an obstruction. That was ruled out, but his electrolytes still needed work and he was clearly third spacing.
While Frankie was hospitalized, Henry stayed with my mom for ten days. Though he couldn’t be with his brother or with me, he was surrounded by love and care, and he handled the separation with quiet strength.
During this hospitalization, we finally got answers that helped explain just how much Frankie’s body has been carrying. A scope confirmed severe gastritis, and he was diagnosed with an ileus, worsened by the scope procedure and anesthesia. His stomach lining is profoundly inflamed and injured, and seeing the images made it impossible to deny how long his GI system has been under stress. What we once hoped was slow progress turned out to be his body quietly struggling to keep up.
Frankie also went into this admission with shingles—something we never expected, especially since he has never had chickenpox and has only received the live vaccine. It was another clear sign that his system has been pushed far beyond what a little body should have to endure, likely triggered by the prolonged stress his body has been under as his team pushed him to tolerate enteral feeds.
For the past six months, we worked relentlessly to feed Frankie enterally. We wanted so badly for his gut to adapt. In hindsight, it’s become clear that continuing to push feeds—despite the best intentions and careful monitoring—likely did more harm than good. His stomach simply wasn’t ready, and instead of healing, it was being asked to do more than it could tolerate.
As of now, Frankie is fully reliant on TPN to meet his nutritional needs while his stomach heals. This isn’t a failure. It’s a necessary pause. TPN allows his GI tract to rest completely while still giving his body everything it needs to grow, recover, and stay strong.
Christmas itself was quiet.
There were no big celebrations or carefully planned traditions—just presence. Sitting beside Frankie’s bed. Whispering reassurance. Watching monitors. One of the most meaningful moments came when one of Frankie’s favorite NICU nurses stopped by to see him. The instant he recognized her, his whole face lit up. For a moment, the hospital faded into the background.
December also brought big transitions once we made it home. Starting in January, I returned to work four days a week in the office, with one day remote, and Henry started daycare three days a week. At home, my mom has been an absolute anchor—here with Frankie and the nurses during the day and staying overnight much more often again. Our private duty nursing was reduced from 24 hours to 18 hours, which means I’m up overnight doing Frankie’s cares every other night. It’s exhausting in a way that only parents of medically complex children truly understand. We’re still actively working with insurance and the PDN agency to optimize coverage and find something more sustainable. It’s ongoing, frustrating, and time-consuming.
And yet, in the middle of all this, Frankie is actually doing so much better than he was before the hospitalization. After several days of intermittent suctioning through an Anderson, his belly finally relaxed. For the first time in a long time, his tummy is soft, calm, and comfortable. It confirmed that stepping back, allowing true rest and decompression, was exactly what he needed.
Although Christmas itself looked different, the boys still had a beautiful celebration—just postponed. We celebrated on New Year’s Day, reunited at home, and Henry and Frankie absolutely loved every minute of it. After days apart, seeing them together again—sharing space, laughter, and joy—felt especially meaningful. The house was filled with curiosity and light as they opened the many gifts so many of you sent.
One of the most meaningful acts of love came when one of my dearest friends brought us an entire Christmas dinner on New Year’s Day. Every dish was prepared with care, and for a few hours, it felt like the holidays gently found us anyway. That kindness carried us more than words can say.
As we move into the new year, we’re asking for prayers—for wisdom, clarity, and collaboration as we continue working closely with Frankie’s GI team. Our hope is to heal deep inflammation and injured mucosa, and in time, to find a safe, thoughtful path back to enteral nutrition and a reduced reliance on TPN.
Frankie is not a textbook case. His complexity doesn’t fit neatly into protocols or algorithms, and navigating his care often requires patience, creativity, and discernment. We’re praying for guidance that goes beyond the standard playbook—for insight to know how to move forward in ways that truly serve Frankie’s best interest, while also holding space for Henry’s need for stability, closeness, and healing after a hard separation.
Thank you for walking with us, supporting us, and holding our sweet boys in your prayers. 💙
