Oct 7th

It’s been a busy week. Lots of visitors, lots of conversations, and of course, two little boys who continue to keep everyone on their toes.

We’ve had quite the revolving door of visitors so far this week! My cousin, one of our nurses from our previous hospital, our family friend Nancy, my godmothers, and tomorrow another friend. Plus the best… dad this weekend!!!

It’s been so nice having people come visit us.

Sometimes I forget how much I miss normal conversations and familiar faces. Our world has become these hospital walls, and having people step into it means more than they probably realize.

And the boys? Well, they certainly don’t mind the extra attention. Especially Declan. That boy thinks everyone is here for him. 😂

Declan 💙

We continue to have more and more conversations about the D word…

I still can’t believe I’m writing that word…. Scared too…. Discharge.

Right now, we’re looking at hopefully getting Declan home in the month or so. There are still things we need to accomplish, but the conversations are becoming more real.

The plan is to send him home on ½ liter of oxygen. He will likely need it through the spring, maybe even longer. And that’s okay.

A few months ago, I would have been terrified by the thought of bringing a baby home on oxygen. Now? Give me the oxygen, the equipment, the monitors, and whatever else he needs. I just want my baby out of the hospital.

It’s funny how your perspective changes after eight months in the NICU.

After one of our meetings, urology came by to evaluate Declan. We’ve been hoping to get his circumcision done before discharge, but of course, nothing with these boys is ever quite that simple!

Declan was born with what’s called a congenital buried penis. Basically, the skin and surrounding tissue aren’t attached quite the way they should be, making things appear a little different. He also has some extra skin that needs to be corrected. (They boys will hate me If they read this later in life….because Colton has the same thing. It’s very common for premature baby boys.)

Because apparently this kid hasn’t had enough surgeries in his eight months of life… he comes another one…

The hope is to get his procedure done as early as next week, assuming pulmonology and cardiology are comfortable with him undergoing anesthesia.

One more thing to check off our list!

Otherwise, Declan continues to do great. He’s growing, playing, demanding attention, and reminding everyone that he is very much an eight-month-old baby. (5 month old!)

He’s also becoming quite the little grump when things don’t go his way. He wants to be held, entertained, and loved on. And if you don’t respond quickly enough, he will absolutely let you know.

I think he’s ready to have a whole house…. Or Ronald McDonald room.

Colton 💙

Our sweet Colton.

Not a whole lot has changed over the last two weeks. Which, depending on how you look at it, can be a good thing.

He’s still on the hospital ventilator through his trach, currently requiring around 35% oxygen.

His breathing has been relatively stable, although he still has moments when he wants to fight the ventilator.

Because why would Colton make anything easy?

He’s tolerating his feeds, both through his NG tube and by mouth. He’s still enjoying his bottles, and we love seeing him do normal baby things.

But we’re still waiting.

Waiting for his lungs to improve.

Waiting for him to work better with the ventilator.

Waiting for that next big step.

And the biggest question remains: When will he be ready for the home ventilator?

We still don’t know.

That’s probably the hardest part with Colton. There isn’t a date. There isn’t a timeline. There isn’t a clear answer.

We know he’s making progress. We know how far he’s come. But sometimes it’s hard to see that progress when it happens so slowly.

A few months ago, we were celebrating changes almost daily. Now we might go weeks without making a major adjustment.

But he’s comfortable. He’s growing. He’s playing. He’s smiling.

And those things matter, too.

Colton has always done things his own way, and apparently he has no plans to change that anytime soon.

The In Between 💙💙

As we get closer to bringing Declan home, I find myself experiencing so many different emotions.

I’m excited. Beyond excited.

But there’s also a part of me that is scared.

For eight months, I’ve had both of my boys in the same place. I’ve been able to walk between their rooms, hold them both, kiss them both goodnight, and know they’re just a few steps away from each other.

Soon, that might change.

One baby out of the hospital. One baby still in the hospital.

One baby who gets to experience his house, his dog, and his family.

And one baby who still needs more time.

It’s something we’ve talked about for months.

We always knew there was a very real possibility they wouldn’t come home together.

But talking about it and actually living it are two very different things.

I’ve spent nearly nine months learning how to be a mom inside a hospital. Now I’m preparing to learn how to be a mom at home while still being a NICU mom.

And I’m not quite sure what that looks like yet.

I want Declan out more than anything. But I also don’t want to leave Colton behind.

I know we’re not leaving him behind. I know he’s exactly where he needs to be. But my heart doesn’t always listen to logic.

And then there’s Ryan, our home, Riley, and the life we’ve been missing for so long.

I feel like we’ve spent this entire year living in the in between.

Between home and the hospital.

Between being together and being apart.

Between surviving and actually living.

And now we’re entering another version of it.

But maybe this one is different.

Living in Ronald McDonald with a babyz

Going home 1-2 days a week.

Maybe this is the beginning of finally getting our life back.

Not all at once. Not perfectly. And certainly not the way we imagined.

But little by little.

I keep reminding myself that we don’t need everything to happen at the same time. We just need to keep moving forward.

And we are.

Declan is getting ready to escape.

Colton continues to get stronger.

And Ryan and I are one week closer to having our entire family together.

I cannot wait for the day when our biggest problems are two crying babies, no sleep, and trying to figure out which one needs us first.

I know that day will come with its own challenges.

But after everything we’ve been through, those are the problems I cannot wait to have.

Until then, we keep going.

One day closer. One step closer. One more week of surviving the in between.

Keep praying for our boys. Especially for Colton’s lungs to continue healing and for Declan to have a safe procedure as we prepare for his next chapter.

We are getting there. Slowly. But we’re getting there….