Both boys had a really good weekend. It almost feels scary to even say that out loud, knowing how quickly things can change, but we’re choosing to hold onto and celebrate the small wins right now. Colton has had a bit of an up-and-down stretch with some of his medications as the team works on weaning him off certain pain meds and his heparin. Overall, he’s been doing well and spending a lot of time resting, which is exactly what his little body needs. Declan has had less blee

Sharing a little update on the boys tonight. Overall, things feel steady, and we’re so grateful for that. Colton Colton had a stable night and is staying steady on his breathing support, needing about 60–70% oxygen right now. He’s continuing to tolerate his small feeds along with his IV nutrition. He finally pooped!! One looked like a massive Slug larger than his arm and then little pebbles you would find at the bottom of a river. This boy is something else. The nurses, docto

Our almost 2 month old boys are growing. It’s been a day of both encouragement and continued challenges. Colton: We saw some real progress with Colton the last few days. After adjusting his breathing tube and ventilator, his lungs responded well and his oxygen needs have improved. One scan looked really encouraging, though a follow-up showed a new area they’re keeping a close eye on. Because of some changes over the past few days, the team restarted antibiotics just to be saf

Good morning everyone 🤍 Big update day over here. We have a new doctor leading the team—she’s a soft-spoken, experienced woman who immediately gave us a sense of calm. The kind of doctor who doesn’t need to say much because you can tell she truly knows what she’s doing. We feel really good about her and the plan moving forward. Colton: Today is a big step. Around noon, they’ll begin slowly weaning his sedation to start testing his lungs and see how he does. The team has a 5–

It’s been a few days since we last updated on the boys. Overall, things had been very stable and calm. They were both resting comfortably, and it felt like a low-key, steady weekend, which was something we really needed. Early Sunday morning, things picked up a bit. Declan has had an increase in blood from his ostomy. The team is watching closely, but right now it’s unclear exactly where it’s coming from. They’re continuing to monitor and work through what could be causing it

It was a steady day overall. Both boys continue to be closely monitored. Colton : Colton remains stable on paralysis, and they’ve been able to slightly wean some of his support. He is still not eating and is receiving nutrition through his IV. His belly looked a little concerning this morning, so they did an X-ray, which showed less bowel gas than expected. Labs showed some low electrolytes and low platelets, so those are being watched closely. Declan: Declan remains stable a

It’s been a heavy day, but through it all we’ve felt carried by the care, attention, and expertise of the doctors and nurses surrounding our boys. We’re leaning hard into trusting them, and we’re so grateful for how closely Colton and Declan are being watched every step of the way. Colton: Colton had a tougher night and day. He needed more oxygen and was struggling to keep his levels where they needed to be. The team stepped in quickly by adjusting his sedation and starting p

Both boys made it through their PDA closure procedures. It’s been a full, emotional couple of days with a lot of ups and downs, but we’re so proud of how hard they’re both fighting. Colton Colton had his PDA closed successfully and overall tolerated the procedure well. They did find a large clot in a major vein (IVC), so that’s something the team is watching closely. His blood pressures were a bit unstable after, but medications have helped and he’s responding. He needed bloo

What a day!!!!!! (Understatement….) Both boys are recovering. They wouldn’t be a Lehr boy without a story… and wow, do they each have their own. We’ll share more in future updates when we can articulate all that happened. One thing we can say, at this hospital, they don’t play around. The level of care, urgency, and attention they’ve received today has been incredible, and we are so grateful for every single person who helped get our boys through their surgeries. There had

This has been a very heavy week for our family. First and foremost, we had to say goodbye to our first baby boy, Rusty, on Saturday March 14th. Our hearts are shattered and our eyes have been full of tears since. Rusty was our first baby, our best friend, and a piece of our family that can never be replaced. The house and our hearts, feel very different without him. He was the best dog ever….. 😭 Earlier this week we also made the move from Winfield to Chicago so the boys cou

Big update: A lot of big changes for our family in the past 24 hours. The boys have been moved down to Lurie Children’s Hospital downtown Chicago, and Mom has settled into the Ronald McDonald House nearby so she can stay close to them. While change can be scary, we truly believe this move is for the better. The boys are exactly where they need to be, surrounded by an incredible team that specializes in caring for little fighters like them. Rest assured they have already been

Colton is doing well today, but he really needs his rest. We’re trying to disturb him as little as possible and only move him during his cares. He definitely lets us know when he’s unhappy, especially if he has a dirty diaper! He also gets pretty upset when he has secretions in his mouth. He hasn’t quite learned how to push them out on his own yet, so he tends to just hold them there and needs help clearing them. Tomorrow is an important day for Colton. He will be having ano

Yesterday: Only a few small updates today as we are letting the boys rest. This week has been especially rough on Colton, so quiet days are exactly what he needs. Declan is trying out a new accessory and now has a little bag on his belly. This will help the team see how much discharge and poop is coming out. This is promising news. We still won’t know for sure what his quality of life and long-term outcome will look like until they go back in, but we have all the faith in the

It’s been a roller coaster of a week, so why not let Friday be just as up and down. Thank you for all the prayers over the last few weeks, especially the last couple of days. The boys have really felt every single one of them, so keep them coming. God is good and prayers are working, We have hope and faith in our babies! Declan had another good day. His wound looks amazing, and we are very eager to see what the surgery team will say in the upcoming weeks. The longer we can go

Big update. We need a lot of prayers for Colton tonight and tomorrow. Our Colton is controlling everything right now. Early this morning he wasn’t feeling well and threw up and he threw up so much that he actually threw up his breathing tube. They had to re-intubate him. Later this morning he decided he was not having the MRI that was scheduled for today. He clamped down and stopped breathing, and they had to pull out his tube again and bag him to help him breathe. Then… he d

It’s always a ride with these boys. When things often get calm, there is always another bump, loop or turn. We’re keeping the doctors on their toes, digging back into the textbooks and collaborating with the team at Lurie’s. Let’s start with Declan, since he’s been more stable and semi status quo. Declan had his drain tube removed from his belly yesterday and he looks so good. He’s finally getting to try new positions and spend time on his sides, he especially loves facing h

Today’s update on our brave boys. Colton : The surgery team came in today to drain the bump on his wrist and take a culture. There was quite a bit of pus, but he did so good. It was fast and smooth and Mom even got to watch her tough little guy handle it like a champ. He’s had a busy day and is on oxygen to help him out. We’re really hoping he gets some good, deep rest tonight. Our little man needs it. He keeps fighting, even on the hard days. Declan : Declan is having a pre

The boys are doing well… not much to update. Which is a good but scary feeling. Hope we can have many more days like this. 🙏🙏 Declan gets a little break, no platelets today! He will most likely need them again tomorrow, but we are so thankful he gets a rest day. We think his wound is getting smaller… or maybe he’s just getting bigger (which we love to see). He still needs a few more weeks to keep growing and growing. We are still unsure about his liver since it hasn’t real

Kylie was home for most of the day for our baby shower. We felt so incredibly loved and supported. It was overwhelming in the best way. Thank you to everyone who showed up, sent messages, and continues to carry us through this season. Kylie made it back to the boys around 6pm and they clearly missed her. They were both so good… so good they both peed on her. NICU initiation complete….. Colton still has a little bump on his left wrist. We’re not sure where it came from, so we’

Late post. Kylie went home for the afternoon and night. Walking out while the monitors were ringing was not easy at all… but home was needed. The boys had the best nurses, people who love them and people we trust, and they’ll have wonderful ones again today. Gives us peace. Both boys had calm days. Declan got more blood and a new IV. He is absolutely showing his personality. He is feisty. If his diaper is wet or he wants to be moved, he will let us know. That boy can turn his