Aug 11th - big update

I’m not even sure where to start this update.

There are so many emotions, and I’m not sure I have the words for all of them yet. I am grateful. I am emotional. I am incredibly proud. And I am very, very tired.

But most of all, I just keep looking at these two boys and thinking… how did we get here?

Colton 🤍

Not much has changed with our sweet Colton and right now, that’s okay.

We lovingly call him our slow grower. He is doing well, but we are basically in a holding pattern while we wait for him to get bigger and stronger. Once he grows enough, we can start working toward transitioning him to a home ventilator.

Until then, his job is pretty simple: grow, grow, grow.

He continues to do great with all of his therapies. He is drinking from a bottle, becoming more interactive every day, and absolutely loves being held.

And let me tell you, this boy is a GOOD snuggler.

So for Colton, we wait. We grow. We snuggle. And we keep moving forward, even if the progress right now looks a little quieter.

Declan… Our Miracle Baby 💙

I still can’t believe I get to type this…

DECLAN IS OFFICIALLY EXTUBATED!!!!

After everything this little boy has been through, seeing his entire face without that breathing tube is something I don’t think I will ever be able to put into words.

Our miracle baby continues to do amazing things.

We are still watching him very closely because extubation was a HUGE step, but it’s only the beginning of this next chapter. Now Declan has to show us that he can breathe and continue to grow at the same time.

Breathing takes a lot of energy and burns a lot of calories, especially for a baby whose lungs have been through as much as his have.

Right now, he is on NAVA support. The easiest way I can explain it is that Declan is doing the breathing, and the machine is there to help give him what he can’t quite do on his own yet. Sometimes he needs very little help, and other times he needs a little more.

Today, we moved his support up a level just to give him some extra help when he needs it. And that’s okay.

We aren’t rushing him.

We aren’t asking him to do everything overnight.

We are letting Declan lead the way.

And overall? He is doing AMAZING.

He is happy. He is smiley. He is adorable. He is loving life. And seeing his little face without that breathing tube is something I could stare at forever.

I could probably write for hours about how I’m feeling right now, and somehow I still don’t think I could explain it.

The stress and lack of sleep are definitely starting to catch up with me. Even when I sleep, it doesn’t really feel like sleep. My brain never completely shuts off.

And now that BOTH boys are awake, active, interactive and very capable of letting everyone know when they are unhappy….I feel like I’m constantly going back and forth between them.

Colton needs Mom.

Declan needs Mom.

Back and forth. Back and forth.

But what an incredible problem to have. I dreamed of these moments….

After everything we’ve been through, I will take two crying, demanding, snuggly little boys any day.

Right now, we are keeping most of the pictures of Declan’s beautiful tube-free face close to home. This moment feels incredibly special and a little fragile, and I think we just need a few days to soak it in as a family. Text us directly if you want to see some.

But I promise… I’ll share soon. 🩵💙

For now, please keep praying.

Pray that Declan continues to breathe, grow and get stronger.

Pray that Colton keeps packing on those pounds so we can get him onto his home vent.

We have learned not to look too far ahead.

Today, we are simply grateful.

One boy growing.

One boy breathing without a tube.

Two miracle babies.

And two very grateful parents.

God is so good….. goodnight!