Nov 1st - Big weekend! Declan is out of NICU!!

6 days ago

10 min read

(This is a long one)

One Boy Out of the NICU, One Still Fighting, and a Whole New Chapter 💙💙

After nine LONG months, one of our boys is officially out of the NICU! 💙

I still can’t believe I’m typing those words.

After everything Declan has been through, every setback, every surgery, every scary moment, every prayer, and every single day spent wondering what tomorrow would bring… our sweet boy has finally taken this HUGE step forward.

And while this isn’t exactly the traditional homecoming most people imagine, it’s OUR version of homecoming, and we couldn’t be happier.

We spent our first two days at home so Declan could attend his first pediatrician appointment, and then we packed everything back up and headed to Chicago. For now, Declan and I will be living at the Ronald McDonald House while we continue spending our days at Lurie Children’s with Colton.

Because even though one of our boys is out of the hospital, our family isn’t done with this journey yet. And right now, being together and close to Colton is exactly where we need to be.

Welcome to Our New Normal 💙

I’m not going to sugarcoat it. These last few days have been A LOT.

For nine months, we’ve been surrounded by some of the most incredible nurses, doctors, respiratory therapists, and medical professionals. We’ve watched, learned, asked a million questions, and slowly become comfortable with things we never imagined we’d have to know how to do.

Medications. Feeding pumps. GJ tubes. Oxygen. Medical equipment. Schedules. So many little details that have become part of our everyday lives.

Thankfully, I had the opportunity to learn and practice everything while Declan was still in the hospital. And I felt pretty confident in what I was doing.

But let me tell you something…

Knowing how to do everything in the hospital and actually doing it on your own outside the hospital are TWO completely different worlds. 🤯

Suddenly, there’s no nurse right outside the door. No one keeping track of the schedule for you. No one coming in to help with the little things.

It’s us.

And while we absolutely know what we’re doing, figuring out how to manage all of it while also being Mom and Dad is a whole new experience.

The medications, the feeding schedule, the equipment, the appointments, the packing, the unpacking, and somehow finding time to sleep in between it all.

We’re learning.

And the biggest thing I’ve realized?

ROUTINE. ROUTINE. ROUTINE.

Routine is going to be everything for us.

Not just for managing all of Declan’s medical needs, but for Declan himself. This little boy has spent his entire life in a hospital. Everything he’s ever known has been scheduled, monitored, and surrounded by familiar sounds and people.

Now his entire world has changed.

And as much as we’re adjusting to him, he’s adjusting to us.

We can’t expect everything to be perfect after only a few days. We know that. But WOW, have these last few nights kicked our butts! 😂

Thursday night was our very first night at home with Declan.

Our first time ever having one of our babies sleep under the same roof as us without nurses surrounding him.

And it was ROUGH.

Every little noise he made had us wondering what was going on. We had to learn his sounds, his movements, his little quirks, and what was normal for him.

For nine months, we’ve known him in the NICU.

Now we’re getting to know him as our baby outside of the hospital.

And he was getting to know us, too.

Friday night? AMAZING.

He slept most of the night, was pretty easygoing, and we thought maybe, just maybe, we were getting the hang of this whole thing.

Then came Saturday night. 😂… dude…

We moved back down to the Ronald McDonald House in Chicago, got everything situated, and prepared for another night.

Thankfully, we had daylight saving time on our side and gained an extra hour.

Pretty sure we still only managed about four hours of sleep TOTAL. 🤣

Mr. Declan was not having it.

He kept waking up, seeming scared and unsure of his surroundings. Another new place. Another new bed. Another change to everything he’s ever known.

We also think he might be teething, so that could certainly be adding to the fun!

But when I really think about it, how could we expect anything different?

This little boy has spent nine months in a hospital. He’s never experienced a normal home environment, sleeping without the constant activity of the NICU, or waking up somewhere completely unfamiliar.

It’s a lot for him, too.

And while we’re exhausted, we’re also trying to give ourselves some grace.

We’re only a few days into this.

We don’t have to have it all figured out yet.

We’ll find our rhythm. We’ll establish our routine. We’ll learn what works and what doesn’t.

One day, one night, and probably a whole lot of coffee at a time. ☕️😂

Back Together With Colton 💙💙

One of the absolute best parts of these last couple of days has been getting back into the hospital to spend our days with Colton.

Our plan for the next few weeks is to spend our days at Lurie with Colton and then head back to the Ronald McDonald House at night with Declan.

It’s definitely going to take some adjusting.

Managing Declan’s medical needs while making sure we’re still present for Colton is going to require a lot of planning, patience, and flexibility.

But we’re doing it.

And honestly, after everything we’ve been through, just being able to have Declan with us while continuing to be there for his brother means more than I can put into words.

We’re still navigating two very different journeys with two very different boys.

One is learning life outside the NICU.

The other is continuing to fight and work toward his own next milestones.

And Mom and Dad are somewhere in the middle, trying to figure out how to balance it all.

It’s not easy. It won’t always be pretty. And I’m sure there will be plenty more sleepless nights.

And How Is Our Colton Doing? 💙

Of course, we can’t forget about our other little fighter!

Colton is doing GREAT! 💙

He had a pretty relaxing weekend, filled with lots of naps and snuggles, especially with Dad. Because let’s be honest, those two have their napping routine down to a science! 😂

It’s been so nice having Declan back in the room with his brother during the day. Although, I’m not entirely convinced Colton realizes his brother is actually there yet!

There were a few moments this evening when BOTH boys decided to start crying at the exact same time.

Were they communicating with each other? Were they having some sort of twin moment?

Or were they just both being stubborn during their witching hour?

I’m going to go with the last one. 😂

Either way, it was a little glimpse into what life with TWO boys is going to look like, and I couldn’t help but laugh. We have our hands full, that’s for sure!

But overall, Colton is doing really well, and we’re so proud of the progress he’s continuing to make.

We do have another big week ahead of us.

Colton is scheduled for surgery this week. He’ll be getting his G-tube placed, having his circumcision, and undergoing a bronchoscopy

so the team can get a better look at his airway.

We’re hopeful that the bronchoscopy will give us some more answers and help the team determine the next steps in his respiratory journey.

As always, there’s a lot that goes into these procedures, especially for a little guy like Colton who has already been through so much.

But we have an incredible medical team surrounding him, and we’re hopeful this will be another important step forward.

So we’re asking for some extra prayers for our sweet Colton this week. 🙏🏻💙 Prayers for a safe and successful procedure, for clear answers, for his medical team, and for continued progress.

I’ll share another update as we get closer to his surgery date and know more about the plan.

For now, we’re soaking up the snuggles, enjoying having both boys together during the day, and celebrating every little bit of progress.

Watching Declan BLOSSOM 🥹💙

Now, can we talk about how AMAZING Declan is doing?!

Because despite the exhaustion, the learning curve, and the chaos of these last few days, we are SO incredibly happy with how he’s doing.

People have told us over and over that babies absolutely blossom once they get out of the NICU.

And let me tell you…

THEY ARE 100% RIGHT.

This boy is UNBELIEVABLE.

Watching him experience the world outside the hospital has been something I can’t even describe.

He’s so curious. So alert. So full of personality.

Sure, he’s been a little fussy in the mornings as we work through our new schedule, but overall, he’s doing incredibly well.

And sometimes I just sit there and look at him in complete disbelief.

Because if you saw Declan today, you would NEVER know what this little boy has been through.

You wouldn’t know about the surgeries.

The infections.

The ventilator.

The dialysis.

The countless procedures.

The days we weren’t sure what the future would look like.

The moments when things were so incredibly scary that all we could do was pray.

You would just see this beautiful, happy, curious little boy who is finally getting the chance to experience life outside four hospital walls.

And that is something I will NEVER take for granted.

Nine months ago, we were fighting for his life.

Today, we’re losing sleep because he’s waking up in a new environment, possibly teething, and trying to figure out this whole being-home thing.

And you know what? I’ll take those sleepless nights a million times over.

Because there was a time when we prayed just to get to this point.

How You Can Help Us Through This Next Chapter 💙

One thing we’ve been asked a lot lately is, “What can we do to help?”

And honestly, sometimes that’s a hard question to answer because we’re still figuring out what we need ourselves.

Unfortunately, after having these last four days together as a family, Ryan has to return to work.

It’s been SO nice having him with us, especially as we’ve navigated these first few days with Declan outside the hospital.

Now we’re going back to our routine of Ryan working and being home during the week, while I’m in Chicago with the boys. We’ll be back to seeing each other on the weekends.

That’s another adjustment we’re going to have to make. And while I know we’ll figure it out, I’m definitely going to miss having him here.

We’ve been a team through every single part of this journey, and these last few days have reminded me just how much easier everything feels when we’re together.

So if you’re looking for a way to help, checking in on Ryan or lending a hand with things around the house would mean so much.

But beyond that?

Just keep showing up for us.

Send the text. Check in every now and then. Ask how we’re doing. Let us know you’re thinking about us.

I know it might seem like something so small, but I promise you, it means more than you realize.

We’ve been living this life for over nine months now, and while we’re finally celebrating some incredible milestones, our journey is far from over.

Sometimes the biggest support isn’t doing anything at all. It’s simply reminding us that we haven’t been forgotten while the rest of the world keeps moving.

And if you’re someone who really feels the need to DO something, gift cards would honestly be the biggest help right now.

One thing I’m quickly learning is that having a baby with you in the city makes even the simplest things a little more complicated. 😂

I can’t just run into a restaurant, grab dinner on my way back, or easily pop out for food like I used to. And while we’re incredibly grateful for the Ronald McDonald House, the meal situation can sometimes be hit or miss.

Between spending our days with Colton, taking care of Declan, managing medications, feeds, and trying to establish some kind of routine, figuring out what I’m going to eat has quickly become another thing on the never-ending list.

So gift cards for food, delivery, or coffee would be incredibly helpful.

Especially coffee. LOTS AND LOTS OF COFFEE. ☕️😂 Because at this rate, I’m pretty sure caffeine and prayers are going to be what gets me through the next few weeks!

But please know, none of this is expected. We don’t need gifts or grand gestures.

We just need our people.

The people who continue to check in. The people who understand that even though Declan is out of the NICU, our lives haven’t suddenly gone back to normal. The people who remember that Colton is still there, fighting his own battles, and that we’re still trying to navigate a life split between Chicago and home.

We’re beyond grateful for everyone who has continued to walk alongside us.

And more than anything, we just ask that you keep loving on our boys, praying for our family, and checking in when you can.

That will always mean more than anything money could buy. 💙

God Is So Damn Good. 🙏🏻💙

I don’t think I’ll ever fully be able to explain what it feels like to watch your child overcome so much.

To watch a baby who started life at just over a pound grow into this incredible little human.

To go from watching machines breathe for him to watching him experience a world beyond the NICU.

To finally be the one responsible for his care, not because he’s critically ill in a hospital, but because he’s OUR baby and he’s finally ready for this next chapter.

It’s overwhelming.

It’s exhausting.

It’s emotional.

And it is absolutely beautiful.

We’re not at the finish line yet. We still have a long road ahead with Colton, and we’re going to continue taking this journey one day at a time.

But for right now, we’re celebrating this enormous victory.

We’re celebrating Declan.

We’re celebrating the little things that most families probably never think twice about.

And we’re learning to embrace this new chapter, even when it comes with four hours of sleep and a million alarms reminding us it’s time for another medication. 😂

To everyone who has prayed for our boys, followed their journey, checked in on us, and continued to support our family through these incredibly long nine months, THANK YOU.

And to the incredible medical team who spent nine months helping us get Declan to this point, there will never be enough words to express our gratitude. A special shout out to Corinne, who hasn’t had the boys since they were very little. To be able to be the one to discharge Declan. It really felt like a good full circle.

You all helped give us this moment.

One boy out of the NICU. One boy still fighting his way there. And two very proud, very exhausted parents who couldn’t be more grateful.

We’re figuring it out as we go.

We’re building our routine.

We’re learning our new normal.

And we’re soaking up every single second of watching Declan blossom while continuing to cheer on his brother.

God is so damn good. 💙🙏🏻

One day at a time. One milestone at a time.

The Lehr twins continue to amaze us. 💙💙