May 11th

Mother’s Day and my birthday both came and went inside hospital walls this year. Two days that are usually filled with family, celebration, traditions, and love looked completely different than we ever imagined. We knew this NICU journey would be hard, but some milestones hit differently when you’re living them beside monitors, ventilators, alarms, and medical rounds instead of at home.

It was harder than we expected.

There’s something emotionally exhausting about celebrating while simultaneously grieving what you thought life would look like. Trying to smile through birthday wishes while watching your babies fight through another day is complicated. Trying to feel like a mother on Mother’s Day while your sons are still in intensive care is complicated too. We survived it, but it took more out of us emotionally than I think either of us realized it would.

At the same time, the boys continue to show us just how strong they are.

This coming Wednesday feels huge for us. We’ll be having our first major family meeting with the care teams to discuss both long-term and short-term plans for the boys. We’re hoping for more clarity, more direction, and maybe a better understanding of what their futures could look like. Right now, so much of this journey still feels uncertain. Every small improvement comes with another question, another hurdle, another waiting period. We know there likely won’t be easy answers, but we’re hoping for honesty, guidance, and a clearer path forward.

Colton continues making progress in his own way. One of the biggest goals right now is weaning medications enough that he can eventually lose his central line. We are hoping that day comes soon. His FiO2 (oxyge) has mostly been staying below 50%, which is encouraging because it means the oxygen levels are getting into a less toxic range. Because of that, the team may be able to start aiming for slightly higher oxygen saturations safely. It feels strange celebrating numbers and percentages, but in the NICU those tiny changes can mean everything.

Outside of the medical side, we’re finally getting to see more of Colton’s personality. He absolutely loves his pacifier, cuddles, gentle pats, and being comforted. Those moments help us hold onto something normal in a world that often feels anything but normal. Sometimes the best part of the day is simply watching him settle with a paci and hearing the monitors stay quiet for a little while.

Declan has had a much harder stretch recently.

Pain management continues to be a struggle, and both the surgery team and NICU team have been closely involved over the last few days. His G-tube wound has mildly improved, his midline incision remain stable with a dressings in place. Declan’s belly is all put together but will take time. Weeks to months to heal. It’s wild to think…He is post exploratory laparotomy with lysis of adhesions, small bowel resection and anastomosis, liver biopsy, and gastrostomy tube placement. Hearing all of those procedures listed together still feels overwhelming because it reminds us just how much his tiny body has already endured. NO WONDER HE IS IN PAIN…. it breaks our hearts watching him. But we daily remind each other, he will never remember this… only us.

Recently his abdominal circumference increased and his white blood cell count jumped, so cultures were drawn and antibiotics were restarted as the team watches closely for infection. Every change seems to bring another layer of worry and waiting… again… he will never remember this… only us.

We also had a really scary experience trying to help keep Declan comfortable. The team tried Ativan to help with his discomfort and agitation, but he did not tolerate it well at all. It completely knocked him out. Seeing him become so unresponsive that quickly was terrifying as a parents. It’s one of those moments that sticks with you long after it’s over. Safe to say that medication is something we never want to use again for him…. Again… he will never remember this… only us.

Overall, both boys are growing, which is something we continue to hold onto. Growth is good. Progress is happening, even if it’s painfully slow at times. But the reality is we still don’t know what our timeline looks like or when we’ll finally get to bring them home. What we once thought might be weeks is now feeling like months, and mentally that has been incredibly hard to process.

The longer this journey goes, the more exhausting the emotional weight becomes. Hospital life becomes your normal, but it’s never truly comfortable. You live between hope and fear every single day. You celebrate tiny victories while preparing yourself for setbacks. Some days feel lighter, and others feel impossibly heavy.

We are hoping summer helps a little. Better weather. More sunshine. More visits from friends and family once school schedules settle down. More opportunities to feel connected to the outside world again. Sometimes even small things sitting outside for a few minutes, seeing familiar faces, feeling normal conversation can make a difficult season feel a little less isolating.

For now, we just keep showing up each day for our boys. One round at a time. One update at a time. One small victory at a time.

Thanks for all the support and love. We feel it. We might not answer or reply to all messages but we see you. We see those who are trying to help and be present. We appreciate you and will remember.

Keep these boys lifted in prayer and love.. 💙🩵

Colton getting Fussy!!

Declan knocked out and belly wrapped up. Size 2 diaper to cover him. Praying the lines in his chest come out this week! 🙏 see his GTube (Tubie) waiting to be used. Hopefully soon…