The last almost seven days have honestly been really good. After everything we’ve been through, it finally felt like we could exhale a little. Then today reminded us just how quickly things can change. Today also happens to be the 4th of July, and while it’s hard to fully celebrate with everything going on, we’re still happy and grateful to be together. All 4 of us. Ryan and I stepped away from the hospital for a couple of hours, and while we were gone, everything shifted. Co

The last few days have been filled with something we haven’t experienced in a long time… momentum. Not the big, dramatic kind. The quiet kind. No major setbacks. No emergency changes. No unexpected phone calls that make your heart stop. Just steady progress. For the first time in weeks, there was actually a moment where I didn’t know what to do. I picked up a book, thinking maybe I’d finally have a chance to read a few pages. A few minutes later, Colton had other plans and lo

It has been a few days since our last update, and what a whirlwind they’ve been. First things first… our boys are officially five months old. 💙💙 Like most babies, they had their own opinions about milestone pictures. Colton cooperated long enough for us to get a few adorable photos, but Declan decided he wasn’t interested in opening his eyes for the camera. Maybe next month. Declan This week has been a difficult one for our little fighter. As I mentioned in our last post, D

The Boys Update Colton Colton has had a very busy few days, full of new adventures! He had his very first bath in a real bathtub, got a new swing in his room, and has been working so hard on learning to drink from a bottle. His personal best is almost 60 mL (2 ounces), and we’re so proud of him! He’s also been working with PT and OT, learning how to use his muscles, hold toys, grab his pacifier, and build his strength. It’s hard work, and when he gets tired, everyone definite

Colton Update Colton continues to keep us on our toes. He's our wild child, our little mini Ryan, and I have a feeling he's going to give us plenty of gray hairs one day. Yesterday, his central line was removed, which is a big step forward. He's maintaining stable respiratory function on the ventilator, and while he still has occasional moments where he and the ventilator aren't quite in sync, overall he's doing well. His blood pressure and urine output remain stable, and he'

If you've followed our journey, you know a lot of the updates focus on medical milestones, procedures, test results, and the ups and downs of NICU life. But today, I wanted to talk about something even more important: Ryan and the boys. Ryan has spent the last several months learning a version of fatherhood neither of us expected. Instead of bringing his sons home, he's learned ventilators, feeding tubes, medical terminology, and how to parent through incubator walls and hosp

(Sappy Father’s Day post coming tonight…) Colton & Declan Update…. Sorry it’s been a few days. This week brought a mix of answers, challenges, and many reminders of how resilient these boys are. Declan Declan had an MRI this week after experiencing seizures. The doctors believe the seizures were likely related to the staph infection he has been fighting and concern for meningitis. The MRI showed some areas of brain injury that can be seen in babies born extremely premature, a

It's been a few days since our last update, and honestly, I think part of me was afraid to write one. The last few days had been good. Really good. Both boys were eating, pooping, playing, and staying busy. They were active, alert, and giving us glimpses of what life might look like someday outside these hospital walls. After everything we've been through, those kinds of days feel priceless…….. Tuesday We got wonderful news that Declan's blood cultures came back negative! Suc

Today was a good day, and for the first time in a while… scared to even write this as everytime I do 24 Hours later something changes. 🫣 Declan Update The big news is that Declan got to eat again today! The team started him on a gentle formula that should be easier on his belly. For now, we're holding off on breastmilk while we rule out any potential allergies or sensitivities. Given all the belly issues he's had, the doctors want to make sure dairy or anything else isn't c

Sorry for the delayed update. The last couple of days have been busy, and we've been taking things one day at a time with the boys. Colton- Let's start with the easier update. He continues to do really well and is absolutely living his best life right now. He spent time flirting with his auntie on Friday, holding her hand, and soaking up every bit of attention he could get. He has also continued working on bottle feeding and is now taking 10 mLs from a bottle three times a da

First off, sorry this update is a day late! Last night I made the drive home so I could be there for Colton's state inspection at our house this morning. Yesterday was a really fun and wild day. I would definitely call it an extra green day. Let's start with Mr. Declan. Declan has officially been eating for over 24 hours and, most importantly, he has been pooping! This exciting milestone turned into what can only be described as a full-blown Poop Party. Doctors, nurses, and s

Today was one of those days that reminded us just how quickly things can change… Before I get into the boys' updates, I realized today that we have officially been downtown at Lurie Children's for three months. But the reality is that our hospital journey started long before that. The boys have been hospitalized since birth, 134 days ago. And if we're counting my hospital stay, I've been living this hospital life since January 9th…. 152 days ago. (When I type that out, it doe

Today was a wild and busy day for both boys, but overall it was a good one. Declan had a pretty green, calm day. We were able to switch him over to gravity on him belly juices, and if all goes well overnight, we're hoping to start feeding him tomorrow. Everything depends on how he tolerates things tonight, but we're feeling hopeful. He did have a few fussy moments today. This boy is angry! He wants food, and he wants that tube out. Otherwise, he's doing really well. He loves

Today was thankfully a quieter day, and after the roller coaster we've been on lately, we'll take quiet. Colton The biggest update for Colton is that the team has decided to hold off on the MRI for right now. Since he has been doing better clinically, they don't want to risk disturbing his trach site while it's still healing. The goal is to give that area every opportunity to heal completely before putting him through anything unnecessary. His cultures continue to provide mor

Today was a much better day, and for that, we are incredibly grateful. First, thank you to everyone who has continued to pray for our boys. Please keep those prayers coming. While we still have a few unanswered questions, Colton had a much more encouraging day. We learned that Colton has a UTI, which may be the cause of some of the issues we've been seeing recently. Early next week, he will have additional testing to make sure there is no infection affecting his brain and to

Today was a red day. We'll start with Declan because he had the much easier day of the two. Declan had his lower GI study today, and everything went well. We are still waiting for the surgery team to officially review the results before making any decisions about feeding. The study showed a small bubble between his upper and lower intestines, so the team just wants to make sure they are comfortable with everything before moving forward. Other than that, Declan had a good day.

Today was an overall green day, but a very busy one. Starting with Colton…he’s been a little fussy, which is understandable. He still has quite a bit of swelling and, yes, we’re back to the pooping struggles again. We kind of expected this with all of the pain medications, but here we are. His face is still pretty swollen as his body works on getting rid of the excess fluid. Today we noticed a small issue with the healing around his trach stoma, but after the surgery team cam

Today was one of those days that reminds us how far the boys have come. Both Colton and Declan had great “green” days filled with smiles, laughs, and positive updates. Colton is still resting and has quite a bit of swelling in his face, but that's all expected and will continue to improve with time. One of the highlights of the day was that I got to pick him up, hold him for over an hour, and then help put him back in bed. I also got to learn how to do trach ties for the firs

Mondays are always busy, but today was one of the first Mondays I would call an overall green day. One of our APNs was talking about how her kids sometimes have a blue day at school when a green day just isn't enough to describe how good things are. And honestly? Today felt like a true blue day. Let's start with Colton. He is starting to wake up and move around. Seeing his little eyes peek open is unbelievable. After four months, seeing his whole face without all the tubes ha

Boys Update – Sunday This weekend was exactly what Mom and Dad needed. We were able to catch our breath a little, recharge, and spend time with our boys. As we head into a big week, we're feeling hopeful and excited for what's ahead. 💙 Colton Colton is doing really well. He's spent the weekend resting and recovering, and we've already seen some of his swelling start to go down. One thing we were watching closely was his urine output. We were a little worried at first, but wi