Labor Day!

This weekend was supposed to look a little different.

It was Labor Day weekend. We had big plans to “eat hot dogs and barbecue.” 😂 You know… normal holiday weekend things.

Instead, we had a very quiet, very restful weekend inside the hospital. And honestly, that is exactly what the boys needed.

Was it what I had hoped for? No. Once again, I think I let myself get my hopes up about what the weekend might look like, only to feel a little disappointed when reality had other plans.

I missed having Ryan here beside me to help me through some of those harder moments. He was absolutely there from a distance, but there are just some days when you want your person physically sitting next to you.

Thankfully, I was reminded over and over again this weekend that I wasn’t alone. We had an incredible group of nurses on days and nights.

Charge nurses checked in. Nurses from down the hall stopped by. Respiratory therapists, therapists, doctors and so many others made sure the boys were okay..and made sure I was okay, too.

That warmed my heart more than I can explain.

It really does take a village.

And this weekend, our village showed up.

I think one thing has become very clear over the last several days: both boys have been doing a little too much.

They have been awake, playing, working, doing therapies, sitting up, getting held and showing us all these amazing new things they can do.

But I have to keep reminding myself of something I wrote in the last blog:

They are still sick.

As much as they look like two happy, chunky little babies who want to play all day, their bodies are still working incredibly hard. At their developmental age, they should still be sleeping around 75–80% of the day.

They need sleep.

They need quiet.

They need boring days.

And sometimes boring is exactly what healing looks like.

So we’re going to work through it. We’re going to slow things down, protect their rest and let their little bodies tell us what they can handle. I created a schedule for both the boys to follow moving forward.

Maybe the boys just decided to tag-team us this weekend and get it all out of their systems at once.

Because despite the rough parts of the weekend, there is still so much good happening.

Colton 💙

Colton is doing phenomenal on a PEEP of 12.

He is tolerating his cares, baths, getting in and out of his chair, sitting up, eating, pooping…you name it without having episodes.

Even his electrolytes are looking good from everything we’ve seen and heard.

Right now, I don’t need anything exciting from him.

I don’t need giant changes.

I just want him to keep doing exactly what he’s doing.

Grow. Rest. Eat. Play a little. Sleep a lot. Keep those beautiful eyes open when he’s awake. And show us that his body is comfortable right where it is.

We’ll see how he continues to do this week before making any big moves. And part of me wouldn’t mind giving him even more time to simply rest and grow. Especially what all happened the last few days.

Declan 🩵

Declan is also looking much better.

Yes, he is back on more ventilation support right now, but here’s the important part:

He looks better than the last time he needed this level of support.

And that matters. I have no doubt we’ll start making changes again. We’re just going to do things much more slowly and give his body plenty of time to recover in between.

If we make a change, the next day might need to be a sleep-all-day kind of day.

Hopefully this week we’ll also get some more answers about Declan’s belly so we can figure out our next steps there and eventually start working forward with his respiratory support again.

Slowly.

One thing at a time.

Their timeline…. Not mine.

And don’t worry, the weekend wasn’t all serious.

There were still plenty of giggles.

There was playing.

There were smiles.

And apparently both boys have decided they are learning how to kiss. 🥹

Don’t worry….they’re only actually kissing Mama.

They might make kissy faces at their nurses, but the real kisses belong to Mommy.

And that’s going to stay that way until they’re at least 21.…. Maybe 25. We’ll discuss it later. 😂

More than anything, I walked away from this weekend feeling incredibly grateful.

The nurses who cared for the boys on days and nights treated them like they were their own.

They fought for them. They loved them. They were honest with me. They listened. And they were there for me during the moments when I needed someone.

The charge nurses, doctors, respiratory therapists, therapists and everyone else who checked in made me feel loved.

After more than seven months of this journey, there are still moments when I realize just how many people are standing beside these two little boys.

It really does take a village—and ours is pretty incredible.

So here we are. It’s Monday, but tomorrow feels like the beginning of a brand-new week for us.

I’m ready to see what these boys can do.

For Declan, I’m praying for answers about his belly, lots of restorative sleep, and slow, successful steps forward with his breathing.

For Colton, I’m praying he continues to grow and thrive where he is, that we can make tiny movements when he’s ready, and that he keeps showing us those beautiful eyes.

And for both of them?

Rest.

Lots and lots and lots of rest.

We’ve learned plenty of times throughout this journey that progress doesn’t always mean doing more.

Sometimes progress means doing less.

Sometimes healing looks like sleeping all day.

Sometimes the biggest step forward is simply giving their little bodies time to catch up.

So that’s the plan.

Rest. Grow. Heal.

And then we’ll try again. 💙🩵

Keep the prayers coming. We still need every single one of them.

God bless.

P.S. Enjoy some photos from our very exciting Labor Day weekend—which consisted of approximately zero hot dogs and a whole lot of hospital snuggles. 😂🇺🇸