This update feels a little different than the last one. The last time we wrote, we were in the middle of one of the scariest moments of our lives with Declan’s surgery. Since then, the weekend has given us something we’ve been desperate for….time. Time to breathe, time to sit beside our boys, and time for their little bodies to rest and start healing. Over the weekend, both boys mostly rested. Mom and dad stayed right at their bedsides, helping in any way we could, soaking in

Let’s try this update again. It will be LONG. A lot has happened. We are still bedside with our little man. First and foremost, thank you. Thank you for the prayers, the messages, the support, we have felt every bit of it carrying us through these last few days. Even if we can’t answer or reply back. We see you. Declan went into surgery on Wednesday, January 29th. The surgery itself went incredibly smooth, truly better than we could have hoped for. We were so relieved when it

It’s been a rough start for Declan. He’s currently in acute kidney failure, so the team quickly moved to place an arterial line and begin dialysis. This is expected to be temporary, as they believe this can be corrected, but he needs help removing excess fluid from his body right now. We’ll continue to share updates as we learn more. Colton is doing well—keeping mom busy and right by his bedside. The roller coaster continues… more to come.

Good morning. Declan has been resting through the night. He did need a few oxygen adjustments, and we’re keeping a close eye on his output as he’s not peeing quite as much as he should, so the team is giving him more fluids to help support that. On the positive side, his blood levels have come up, which has helped improve his blood pressure… both really encouraging signs. His stomach is still a bit puffy, which we expect for the next few days, but it’s something we’re watchin

Late Night Update Declan is still working to stabilize his levels, and it’s been a long night with doctors and nurses in and out of the room. Things have calmed down some, and we’re starting to see movement in the right direction, but we’re not out of the woods yet. He still needs help keeping his blood levels up, so transfusions are ongoing. His platelets are a bit low as well, and it sounds like another round may be coming. His blood pressure has been a little inconsistent

First and foremost, thank you all so much for your prayers. We have felt them every step of the way today. Surgery is over, and everything went incredibly smooth truly better than we could have ever expected. He is out of surgery and will be recovering over the next few days. For a moment we thought he was having internal bleeding. Thankfully There was no need for any additional surgery at this time, which we are so grateful for. Right now, the team is on high alert as tonigh

Today is a big day for our sweet Declan. His surgery is scheduled for 9:40am, which means it could begin anytime after that. As we head into this, we’re asking for all the prayers you can send his way. There are still a lot of unknowns going into surgery. The team will decide whether they’re able to reconnect everything or if Declan will need a surgical ostomy for now. While he has essentially created his own ostomy, and it’s been working incredibly well, it’s not a long-term

Yesterday was a really good day for the boys, one of those days that gives you a little extra breath and reminds you how far they’ve come. Colton got his new breathing tube, this time with a cuff at the bottom. The hope is that it will help manage the leaks better so he doesn’t have to work so hard just to breathe. We truly feel like so much of his energy has been going toward that, and it’s made it harder for him to gain weight the way we know he can. But if there’s one thin

It’s hard to believe we’re already here, three months into this journey with our boys. They did it. They just keep growing. They are amazing. Declan hit my goal of 5 pounds this past week, and Colton is right behind him, just shy of it. To think that they are now 5 pounds when they entered this world at just 1.4 pounds feels nothing short of incredible. In the moments early on when everything felt so fragile and uncertain, this milestone felt so far away. And now, here they a

It’s been a very eventful few days for Colton and Declan. The boys officially moved up a floor, and now they both have window rooms overlooking Oak Street beach and the lake. It truly feels like we’re moving up in the world. From a dark NICU room during the CDH days, to another dim space at Lurie’s, and now finally into brighter rooms that feel full of light and possibility, it feels like a step toward a bigger future. For now, they’re still in separate rooms, and we’re hopin

The boys had a really good day today. They’re both growing, becoming more alert, and starting to show more personality and playfulness. Those moments make the long days feel a little lighter and go by much faster. Colton had a strong night and handled his morning like a champ. He had his eye exam and stayed calm through the whole thing. The results were better than we feared last week…not perfect, but encouraging. We’ll continue with weekly checks to monitor his progress as h

Both boys are doing well. It was a low-key weekend, and Dad came visit, which was really nice. Colton had a great week. He’s been playing with his pacifier and has started using it to calm himself down, which is the cutest thing to watch when he really gets going. He’s had lots of poops, lots of little giggles, and is making more eye contact. He just seems more and more engaged every day. Declan, on the other hand, had a bit of a tougher weekend. He had an episode Saturday ni

Sorry it’s been a couple of days since our last update. We’ve been sitting on pins and needles waiting to learn more about Declan’s surgery. This journey has truly been a roller coaster, and this week brought another big bump in the ride. Both boys are continuing to grow and overall are doing well, but they’ve definitely had their moments. The week started off rough. Within the first five minutes of walking in one morning, Colton had a major episode. His heart rate dropped in

This weekend was an overall good one for the boys. They both were fussy because of the vaccinations that they got on Thursday and Friday, but have since relaxed. Dad was back in town, and it meant so much to have that extra time together. These moments feel even more special right now. He got one on one time. Colton has been doing really well overall. He’s had some very big diapers lately… and let’s just say, they are beyond stinky 😅 But we’ll take it as a good sign that thi

Today was a big day for both boys — vaccination day. They each had their shots and were a little crabby afterward, but nothing too out of the ordinary. We’ll be keeping a close eye on them over the next 12 hours to see how they do. One more round tomorrow and then they’ll be done for now. Colton was extra clingy today and definitely wanted all of mom’s attention. He wasn’t feeling his best after the vaccines, so he made sure I knew it, constantly wanting me to touch him and b

It’s been a few days of consistency, and we are loving every bit of that. After so many ups and downs, steady days feel like such a gift. Dad was in town for a few days, and the boys and I soaked up every second of it. Those moments together mean everything right now. Both boys are continuing to eat and make progress. Declan is moving at his own small and steady pace, now up to about 4–5 mLs a day. We are so proud of him for continuing to push forward. Colton is officially at

Easter weekend was such a special one for our family. Dad stayed with the boys while I went home for a bit to spend some much-needed time with Riley (and soak in a little bit of normal life). It meant a lot to have that balance, even if just for a moment. On Easter, Grandpa Moravec and Grandma Cindy came to visit the boys. It was such a sweet visit, and both boys did amazing, truly on their best behavior the whole time. Dad is staying in town with them for part of the week, a

Today was such a good day for both of our boys. Colton did amazing. He got his oxygen down to 50% and was so comfortable that we decided it was finally time to put him in clothes. We spent about an hour with him, changing his bedding, getting him dressed, and just being with him and he handled it all so well. Seeing him like that… he looks so big and so grown-up. It’s one of those moments we will hold onto forever. Declan had a really great day too. He made it down to 21% ox

Today had a little bit of everything…stress, laughter, and small wins that we’re holding onto tightly. Colton has been pretty backed up since Friday, and the team was preparing to do a pretty uncomfortable “clean-out” that we were all dreading. We knew he wouldn’t like it one bit, and honestly, neither would we. It’s so hard watching him go through these things. But in true Colton fashion… he pulled an April Fools’ Day trick on all of us. Right before they started, he pooped

Overall, today feels like a steady day and right now, we’ll take steady every single time. Colton Colton continues to stay stable on his current breathing support. His oxygen needs are still a bit higher and fluctuate, but he’s holding his own. He’s continuing treatment for his infection, and we’re grateful he’s tolerating everything well so far. His eye exam today showed no signs of concern, which is such a relief, and we’ll check again next week. He’s also continuing to slo