June 10 - 3 months @ Luries

Today was one of those days that reminded us just how quickly things can change…

Before I get into the boys' updates, I realized today that we have officially been downtown at Lurie Children's for three months.

But the reality is that our hospital journey started long before that.

The boys have been hospitalized since birth, 134 days ago. And if we're counting my hospital stay, I've been living this hospital life since January 9th…. 152 days ago. (When I type that out, it doesn't even feel real.) What all have you done in the last 152 days? We have lived the nightmare of Groundhog’s Day over and over again.

That's 152 days of hospital rooms, monitors, alarms, doctors, rounds, procedures, sleepless nights, hard conversations, and learning a world we never expected to be part of. Our lives have been forever changed by this journey, and we still have a long road ahead of us.

I also want to take a moment to say thank you to everyone who has made the effort to come visit us. It may seem like a small thing, but it means more than you know. Being downtown for three months has been incredibly isolating at times.

If I'm being honest, it is really hard being down here by myself. The days can feel long, the nights can feel even longer, and there are moments when the weight of everything feels overwhelming. So to those who have checked in, sent messages, prayed, visited, brought coffee, sat with us, or simply reminded us that we aren't doing this alone….. thank you. Seriously, THANK YOU.

I know everyone has their own lives, families, jobs, and responsibilities. I truly do understand that. But I also think many people don't realize what they're missing. These boys continue to fight, grow, overcome obstacles, and surprise us every single day. It is a privilege to witness, and I am grateful for every person who has chosen to be part of their story.

Thank you for helping carry us through these last 152 days.

Now to the CRAZY UPDATE:

Yesterday, I wasn't completely honest about how the day ended because, at the time, we didn't have answers. I didn't want to share information before we understood what was happening.

The short version? It was terrifying….

Yesterday, Colton had six separate episodes where his heart rate and oxygen levels dropped dangerously low….it was far too close for comfort. Last night, they increased his sedation so he could rest safely while everyone worked to figure out what was causing these episodes.

Today, the ENT team came in and performed a scope of his airway.

And they found something huge.

His trach wasn't sitting correctly. It was hitting the back wall of his airway instead of being positioned properly down his trachea. Essentially, there was only a very small gap for air to pass through.

Watching the scope was wild. For the first time, we could actually see what was happening.

The team replaced his trach with a longer pediatric-sized Bivona trach, one typically used for babies around 6-9 months old. After placing the new trach, they scoped him again and confirmed that it was finally sitting exactly where it should be.

So now we're sitting here wondering...

Could this have been contributing to everything the last week? We don't know for sure yet, but it's entirely possible that Colton simply wasn't getting the airflow he needed because his trach wasn't positioned correctly.

Since the change, things have looked better. His oxygen needs are already starting to come back down, his blood gases are stable, and he is tolerating his feeds as they continue to increase.

We're cautiously optimistic and holding onto a lot of hope tonight.

DECLAN!!

While his brother was keeping everyone on their toes, Declan decided to give us a reason to smile.

Today, Declan got his very first milliliters of feeds!

It may not sound like much, but for a kiddo who has been working so hard to heal his belly, this is a big step forward.

Now, did he appreciate the feeding tube in his nose? Absolutely not. He made his feelings very clear and was quite angry about it. But despite his complaints, he's eating, and that's what matters.

Every feed is another step toward healing, another step toward growing stronger, and another reminder that progress doesn't always happen in giant leaps. Sometimes it happens one tiny milliliter at a time. (& a poop party, coming soon!)

Thank you all for continuing to pray, cheer them on, and carry us through these difficult days. Yesterday was scary. Today brought answers. And tonight we're holding onto hope for both of our boys and maybe some sleep for Mom.