Oct 1st

It’s been a few days since our last update…

actually, somehow it’s been the entire week.

It has been a hectic one, but in a different way than so many of our weeks before. Both boys have been busy, playful, demanding, and doing their absolute best to drive their nurses crazy.

Basically, they are acting more and more like babies & we love it.

One of the biggest changes this week was that we temporarily moved over to the CCU/PICU side of the floor because of construction in our regular rooms. At first, it was just another move in what feels like a very long list of moves throughout this journey. But it ended up giving me a completely different perspective.

We had actual private rooms. A TV. Our own bathrooms. More space. More privacy. And, thankfully, we had primary nurses with us all week, which made everything feel even more comfortable and familiar.

For a few days, it honestly felt like we were in our own little world.

But the biggest thing I took away from being in those rooms was something I didn’t expect:

My boys don’t look as critically ill as they once did.

That sounds like such a simple statement, but it hit me hard.

For eight months, I have looked at them through the eyes of the NICU. Monitors, ventilators, oxygen, tubes, alarms, procedures, surgeries, emergencies and constant medical conversations have become our normal.

Then suddenly, I was looking at them in a more traditional hospital room.

They were on the floor playing. They were interacting with us. They were watching TV.

They were getting annoyed when they didn’t get enough attention. They were smiling, playing, sleeping in my arms and just being babies.

Especially Declan.

That boy is a BIG BOY now.

It gave me a glimpse of them outside of the world we have lived in for so long. We still have medical hurdles ahead of us… especially with Colton, but for the first time in a while, I could really see how different they are from those tiny, critically ill babies we once stared at through an isolette.

A Little Bit of Normal

We also got to do something this week that felt incredibly normal: watch sports together.

Monday night, we watched the Bears game. I watched the first half with Declan and then moved over and watched the second half with Colton.

Both of them eventually fell asleep in my arms.

I know that probably sounds like such a small thing, but after everything we have been through, sitting in a hospital room watching football while holding my sleeping sons felt pretty special.

We’ve also been watching the Sox playoff games together. Apparently, after eight months in the hospital, it is officially time to start teaching these boys what teams they are supposed to cheer for. Dad may have some opinions about that one. 😂

These are the moments I have waited for.

Not surgeries. Not rounds. Not lab results.

Just sports on TV and my babies asleep in my arms.

Colton

Our stubborn little fighter continues to make progress.

Colton is now down to a PEEP of 8, which is another step in the right direction. Over the last couple of days, he has also been much more comfortable and much more in sync with his ventilator. That is really important for him because getting his breathing more comfortable and coordinated is part of figuring out what his longer-term respiratory plan will look like.

His peak pressures are still running high at times, into the 50s…so we still have work to do.

We are celebrating the lower PEEP, but we also know that PEEP is only one piece of the puzzle. Colton continues to remind us that he will do things on his own timeline.

His blood pressure and urine output have been good, and he is tolerating his full feeds. He is still taking some feeds by bottle, which he absolutely loves, with the majority going through his NG tube.

We are also continuing to deal with the swelling in his head and face. One thing I have noticed is that it improves throughout the day when he is sitting upright and tends to be worse after he has been lying flat sleeping. We continue to keep an eye on it, but overall he has been happy, playful and comfortable.

And a PEEP of 8 feels pretty darn good considering where we started.

Declan

Then there is Mr. Declan, who seems increasingly determined to convince everyone that he is ready to run the place himself.

He is currently on 3 liters of oxygen through his nasal cannula and is comfortable on it.

His blood pressure and urine output are good, and he continues to tolerate his GJ feeds. We have now moved into a much more home-friendly feeding schedule where he gets continuous feeds for 18 hours and then has six hours off every afternoon.

That six-hour break is huge for us because it gives him time during the day to be disconnected, play, move around and just be a baby.

We are still working through some issues with his G-tube site and drainage. When we tried clamping the G-port, it caused more leaking around his abdominal wound, so surgery is helping us figure out the best plan moving forward. Right now, the most realistic plan may simply be allowing it to drain into a diaper.

Is it glamorous? Absolutely not.

Is it something we can manage at home? Absolutely.

And those are the conversations that matter right now.

Because discharge planning has officially begun for Declan.

I still almost hesitate when I type words like that because we have learned over and over again not to get ahead of ourselves. Things can change quickly around here.

But the conversations are happening.

Home feeding schedules.

Home oxygen.

What we can manage outpatient.

What his G-tube care will look like.

What our daily routine could look like.

They are no longer just talking about keeping Declan stable.

They are starting to talk about how we take care of him at home.

This week wasn’t filled with some giant milestone or dramatic announcement.

Instead, it gave me perspective.

I looked around those private hospital rooms and saw two little boys who have spent their entire lives fighting.

I saw Declan on three liters of oxygen instead of a ventilator.

I saw Colton sitting at a PEEP of 8 after months of needing so much more support.

I saw toys on the floor.

I saw nurses laughing because my boys were keeping them busy.

I saw football on the television.

I saw two babies sleeping in their mom’s arms.

For so long, our goal was simply to keep them alive.

Then it became getting them through the next surgery, the next infection, the next respiratory setback, the next scary scan or the next impossible day.

Now, little by little, some of the conversations are changing.

Especially for Declan, we are talking about home.

Colton still has more work ahead of him, and we know his road will look different. We aren’t rushing him. He has already shown us countless times that he will get where he needs to go when he is ready.

But this week gave me something I desperately needed.

A chance to look at my boys outside of the NICU lens.

Not as diagnoses.

Not as ventilator settings.

Not as numbers on a monitor.

Just as Colton and Declan.

Two eight-month-old brothers who love attention, drive their nurses crazy, watch sports, play on the floor, fall asleep in our arms and continue to show us just how incredibly far they have come.

We still have a road ahead of us…..

But for the first time, that road is starting to feel like it might actually lead home.