Aug 6th

Today was one of those days where I found myself sitting back and thinking, Wow. Look how far these boys have come….

First up, Declan had his GJ tube procedure this morning, and he did amazing. He was only gone for about 40 minutes total, and honestly, the hardest part was transporting him down there.

They tried to sedate him, but apparently Declan had other plans and decided to fight the medicine. 😂 Typical Declan.

The procedure itself went great, everything looks exactly how it should, and he did so well that we were even able to start using his new GJ tube for feeds today.

And because apparently one big accomplishment wasn’t enough for one day… we changed his ventilation too!

Declan was switched over to NAVA today, which meant an entirely different ventilator and a different way of helping him breathe. Instead of the ventilator simply giving him predetermined breaths, this mode allows Declan to trigger the support he needs based on his own breathing.

And he did PHENOMENAL.

At first, he barely even noticed that we changed ventilators. Then we changed the way the new vent was supporting him… and again, he barely cared.

What DID make him mad was having another little tube put down his nose into his stomach — which, honestly, I don’t blame him for. 😂

But after a few hours of doing so well, we were even able to turn his support down again.

I don’t know exactly what tomorrow will bring or what changes they’ll decide to make next, but today was a really big step in the right direction. And now we are getting even more excited, and nervous, about the conversations next week surrounding extubation and finally taking that breathing tube out.

I cannot even explain how badly I want to see his entire little face.

If you’ve noticed that I haven’t really been sharing pictures of Colton’s full face lately either, there’s a reason. I want to do it together. I want to wait until we can finally show off BOTH of our boys’ beautiful faces.

Hopefully, that day is coming very, very soon. 🥹

And then there is Colton, who also had himself a pretty fantastic day.

He was playful, happy and apparently feeling a little mischievous because he decided it would be absolutely hilarious to throw up ALL OVER Mom. And when I say all over me, I mean head to toe. Enough that I actually had to go back to the room and completely change my clothes.

Meanwhile, Colton had a smirk on his face like he was incredibly proud of himself.… my mini Ryan… lord help me!

He did great with his bath and trach ties afterward and eventually wore himself out and fell asleep. I’m hoping that means he’s planning on giving everyone a nice, quiet night.

We also talked a little more about his home ventilator today. We aren’t quite there yet, but we’re continuing to move in that direction.

And our little guy is officially 5.2 kg…. about 11.5 pounds!

💙🩵

Saying that I am proud of my boys today is an understatement.

I had really good moments with both of them today. Moments where I just genuinely felt like their mom.

Getting thrown up on. Comforting them when they’re mad. Watching them play. Watching them succeed. Standing next to their beds while they do things that once felt impossible.

Sometimes I get so caught up in the medical world that surrounds us that I forget to stop and look at what they’ve actually accomplished.

And, if I’m being completely transparent, writing all of these good things still scares me.

There is still a part of me waiting for the other shoe to drop because we’ve learned over these last six months that things can change incredibly quickly. Celebrating good days hasn’t always felt safe.

But maybe the shoe doesn’t have to drop this time….. Maybe these boys really are just getting stronger.…Maybe they are gearing up to live two very big, very happy, very strong lives.

Today, I’m choosing to believe that.

And I also want to remind everyone reading this to enjoy the little moments.

If you can pick up your baby whenever you want, hug them. Hold them a little longer. Don’t rush to put them down.

Because hopefully soon, Ryan and I are going to get to pick Declan up out of his bed for the first time ever.

Even typing that makes me emotional.

And then, hopefully not too long after that, when Colton is transitioned to his home ventilator and Declan is on the respiratory support he needs, our boys will finally be able to be together.

Not across the room.

Not separated by equipment and medical needs.

Together.

I already know that will be one of the best days of my life.

Maybe I’m extra emotional tonight because today was such a good day. But after everything these boys have been through, I think we’re allowed to soak this one in.

Today was a good day.

And we are so incredibly proud. 🩵💙

Keep praying for our boys, especially for Declan as we get closer to hopefully removing that breathing tube. Pray for strong lungs, wise doctors, successful next steps, and continued boring, beautiful progress for both of them.

One day at a time. One step at a time. And today was a really good step.

Good night!