Sept 4th

The last few days have brought a lot of emotions…some really beautiful ones, some scary ones, and a whole lot of reminders that this journey can change direction so quickly.

Starting with our little rockstar, Declan. 💙

If you read our last update, you know we took a pretty huge leap and moved Declan all the way down to 1 liter of oxygen.

And I am so happy to say… he has done SO well.

He continues to surprise us. He’s comfortable, he’s happy, he’s playing, and he’s proving once again just how far he has come.

He has even gotten to spend a little more time around his brother lately.

Does he care?

Absolutely not. 😂

After seven months apart, Declan still seems completely unimpressed by the fact that he has an identical twin brother. Meanwhile, Mom is over here desperately waiting for the adorable twin moments.

Someday, right?

For now, though, our biggest job with Declan is actually making sure he doesn’t do too much. He needs rest. His little body has worked incredibly hard to get here, and even though he is doing amazing, we have to remember that this is still a huge respiratory change for him.

The expectation right now is that Declan will likely still go home on 1 liter of oxygen, and honestly, I am perfectly okay with that.

Especially heading into cold and flu season, having that extra respiratory support at home gives us another little layer of security. After everything his lungs have been through, if 1 liter helps him stay comfortable, safe and growing stronger, then 1 liter it is.

But Thursday brought a milestone that I don’t think I will ever forget….

Declan went to his very first playgroup. 🥹

I’m not sure I can completely explain what that did to my heart.

We walked into a room with other babies. We sang songs. We danced. We played. We snuggled. We had one-on-one time together.

And for a little while, I wasn’t thinking about ventilators or oxygen or surgeries or seizures or numbers on monitors. I wasn’t thinking about how many days we’ve been here.

I wasn’t thinking about what comes next.

I was just a mom with her baby.

And he got to just be a baby.

That probably sounds like such a simple thing to anyone who hasn’t lived this life, but it felt enormous to me.

One of the hardest things about the NICU is that sometimes it feels like your babies don’t really get to be babies. Their lives revolve around cares, medications, procedures, respiratory support, feeding schedules, therapy and alarms.

Thursday, for a little while, none of that mattered.

I watched my little boy in a playgroup.

I watched him experience something normal.

And it felt completely surreal.

I was so proud of him. And if I’m being completely truthful, there was also a piece of my heart hurting because Colton couldn’t be there with us.

I wanted both of my boys there.

But I know his day will come, too.

One day, Colton will get to go to playgroup.

One day, we will get to experience those normal little baby things with him, too.

And right now, Colton is the one who needs our extra prayers. 🩵

For the last few months, so much of our attention has understandably been focused on Declan. And don’t get me wrong…. Declan still has a road ahead of him.

But right now, Colton is struggling.

His breathing continues to be difficult, and we are still trying to understand exactly what is going on with his puffiness. We have been able to get some of the swelling down, which is encouraging, but he still doesn’t quite look like our Colton.

That hurts my heart more than I can explain.

I just want his little face back.

We have also been trying to lower some of his respiratory pressure to see if that helps. We’ve been working on that over the last couple of days, but today was hard…

He had several episodes.

I was there for one of them, and then after I left, he had a few more.

There is something incredibly helpless about watching your child struggle to breathe & turn blue….

After everything we’ve been through, you would think maybe I would be used to these moments.

I’m not. Idon’t think I ever will be.

I wish there was something I could physically do besides stand there, love him, advocate for him, ask questions, watch the monitors and trust the people caring for him.

I came home for a little bit this weekend.

This is normally one of our weekends where Ryan and I disappear down to the farm for the holiday, disconnect from everything and spend some time in the middle of nowhere.

Ryan was able to head down there and get ready for hunting, but obviously this year looks a little different.

I couldn’t bring myself to go that far away.

So instead, I came home for the night and day to spend some time with my little girl, Riley.

I also have a new kind of mom project waiting for me at home… getting Declan’s stroller and car seat ready. Just typing that feels crazy…..

Now that he can actually move around the hospital and go to things like playgroup, I want him to be able to use his things.

His stroller.

His car seat.

Normal baby things.

Ryan put togegher the double stroller… so thankful to come home and have it ready. 🥰🥰

Pulling them out now feels emotional in a way I never expected. They’re not just baby gear anymore. They represent movement. Progress. A tiny little glimpse of the world outside his hospital room.

Maybe even a glimpse of what’s eventually coming.

Of course, I already miss the boys terribly.

Being away from them never really gets easier.

My brain stays at the hospital even when my body isn’t there.

So I’m going to try to soak up some Riley time, get Declan’s things ready, let Dad have a little bit of his normal weekend, and trust the incredible people watching over our boys.

So tonight, I’m holding onto those little pieces of normal while also praying hard for the boy who needs us a little more right now.

Keep fighting, Colton.

Mommy and Daddy are so incredibly proud of both of you.

And someday, I hope all four of us get to disappear down to that farm together for a holiday weekend. Just our family, together, in the middle of nowhere….. Until then, we keep going.

Please keep the prayers coming.

Tonight I Pray for continued strength for Declan. I Pray especially hard for Colton’s lungs and breathing. Additional wisdom for their doctors and nurses. For patience and strength. And I pray that little by little, day by day, we continue moving closer to the day when our entire family is finally under one roof…. At home

Thank you for continuing to follow our boys, love them, pray for them and walk beside us through this journey.

And if somehow our story has helped strengthen your faith along the way, just know that hearing that has strengthened ours, too.

Keep the prayers coming, and as always, thank you. 💙🩵🙏