Oct 26th

Oct 26

5 min read

Another Monday, Another Curveball…

Well, Monday. You sure know how to show up and remind us that nothing about this journey is ever going to be easy.

I wish I had a more exciting update to share today, but instead, we are starting another week with a few unexpected bumps in the road.

Nothing we can’t handle, but that doesn’t mean the disappointment doesn’t sting a little.

Let’s start with Mr. Declan.

Over the weekend, Declan and I were both battling what I can only describe as one nasty cold. Rhinovirus officially took us both down.

I spent the majority of the weekend away from the boys, trying to recover and, more importantly, protect Colton. On Saturday, when I did make it over to the hospital, I only spent time with Declan since we were already sharing the same lovely symptoms.

And let me tell you, this cold is NO JOKE.

There were moments when I could barely breathe through my nose. Sleeping flat was nearly impossible. And all I could think about was my poor little Declan.

Imagine having the worst head cold you’ve ever experienced. Your nose is wont stop running, you can’t breathe comfortably, and all you want to do is prop yourself up on a few pillows. Now imagine being a baby who doesn’t have that option. Who has to lie flat on his back and just figure it out.

It absolutely breaks my heart….

And just when we thought we were getting through the worst of it, Declan spiked a fever last night.

So, first thing this morning, we were back to what we know all too well. Tests, labs, cultures, and trying to figure out what else might be going on.

He is still very much fighting rhinovirus, but his white blood cell count was also elevated, which has everyone concerned that there may be another infection brewing. We drew blood cultures, and so far, nothing has come back positive. However, some of his initial urine results are pointing toward a possible UTI.

So, antibiotics have been started while we wait for more answers.

This poor baby….

Every single time it feels like Declan is finally cruising along, something comes out of nowhere and knocks him right back down.

And this time? It’s the common cold.

Something that most of us would complain about for a few days, take some medicine for, and move on from. But for a baby who has already fought through so much, even something as simple as rhinovirus can be a pretty big deal.

It is so incredibly frustrating to watch.

I just want my happy, busy, snuggly little boy back to feeling like himself.

And then there’s my sweet Colton. 💙

Oh, how I miss that boy.

I haven’t been able to touch or snuggle him since Wednesday. WEDNESDAY!!!!!

For a mom who spends nearly every single day loving on her babies, that feels like an eternity.

But you know who doesn’t seem to mind one bit? Colton…..

Because for the last three days, he’s had DAD!

And let me tell you, those two have been living their best lives.

With me being sick and trying to keep my germs far away from Colton, Ryan has been spending his days with him. Today, he spent the entire day learning more of the ins and outs of Colton’s care, getting comfortable with his routines, and, of course, sneaking in all the snuggles.

And I absolutely LOVE that.

I love seeing Ryan get that one-on-one time with Colton. I love watching their bond grow. And I love knowing that Colton is getting all the love and attention he deserves while Mom is temporarily out of commission.

But can I admit something?

I’m JEALOUS! 😂

Every time another picture comes through of the two of them cuddled up together, my heart melts and breaks just a tiny bit at the same time.

I want those snuggles!

Although, I suppose this is exactly how Ryan feels every day when I’m sending him pictures of me and the boys while he’s working.

So maybe it’s Dad’s turn.

And honestly, watching him learn more and more about Colton’s care is such a beautiful thing. There is so much involved in caring for our sweet boy, and every day Ryan gets more comfortable and confident.

I’m proud of him.

But I’d still like my baby back, please…..

Finding the Good in Another Hard Monday

Here’s the thing.

Am I disappointed today? Absolutely!!!!

Am I tired of the setbacks, the waiting, and the constant feeling that every time we take two steps forward, something pulls us back? You bet.

But when I really stop and look at where we are today compared to where we started nine months ago, I have to remind myself of something.

Things are actually pretty good.

Think about that for a second.

We are sitting here talking about a common cold, a possible UTI, and getting comfortable with a home ventilator.

Nine months ago, our conversations were so different.

We were fighting for survival. We were facing one terrifying complication after another. There were days when we didn’t know what tomorrow would bring.

And now?

We have two little boys who have fought their way through more than most people will ever experience in a lifetime.

Nothing right now is super critical. Nobody is in an immediate life-or-death battle. We are dealing with things that, while frustrating and exhausting, are manageable.

And that is something I refuse to take for granted.

We are waiting for Declan to kick this nasty virus, figure out this possible infection, and get back to being our happy little guy.

And we are waiting for Colton to continue making progress toward his home ventilator.

That’s where we are.

We are moving forward.

Just at Colton and Declan’s pace.

Which, if you’ve been following along, you know is VERY, VERY, VERY slow……. 🐢🐢

These boys have never once cared about anyone else’s timeline. They have been writing their own story since January 27, and apparently, they have absolutely no intention of changing that now.

And as much as I wish I could speed things up, I know better.

They’ll get there.

They always find a way.

And one last thing…

Tomorrow, our boys turn NINE MONTHS OLD.

NINE. WHOLE. MONTHS.

I honestly cannot wrap my head around that.

Nine months of fighting. Nine months of learning. Nine months of loving these two little humans more than I ever thought possible.

Nine months of living a life I never could have imagined.

There is so much I want to say about that milestone, but I’ll save it for tomorrow.

For tonight, I’m just going to be thankful.

Thankful that Declan is being watched so closely.