Nov 3rd - prayers for Colton’s surgery

First things first, we need all the prayers for our sweet Colton tomorrow! 🙏🏻💙

Our little man is heading into surgery, and we are hoping to accomplish a few things. The biggest priorities are getting his G-tube placed and doing a bronchoscopy to take a closer look at his airway. This is a HUGE step because we are hoping to get some answers about whether he is ready to start moving forward with the home ventilator.

We are also hoping to squeeze in his circumcision, but we are still waiting to hear from urology to see if they can make it happen.

For whatever reason, that always seems to be the complicated part! 😂 But no worries if they can’t. We will get it done before discharge. Right now, the G-tube and bronchoscopy are what we really need.

I know Colton is going to do great. He’s one tough little dude (Dr Potts’s words/voice) who has already overcome more than most people will in a lifetime.

My biggest concern? The poor kid can’t eat after midnight, and his procedure isn’t until 1:30 tomorrow afternoon! 🤣

If you know Colton, you know there are three things that make this boy happy: FOOD, NAPS, and SNUGGLES.

And let me tell you, taking away his food for that long is not going to make for one happy little man. I’m already preparing myself for the attitude!

But all jokes aside, please say an extra prayer for Colton tomorrow. Pray for a smooth procedure, a quick recovery, and, most importantly, some GOOD NEWS about his airway and the possibility of moving toward the home vent.

We are so ready for that next step. 💙

And then there’s Mr. Declan… 💚

Oh, where do I even begin?

There are about a million things I could say right now, but I’m going to try really hard not to go down that rabbit hole tonight.

The simplest way to put it?

I. AM. EXHAUSTED.

This entire year has been one extreme after another. Every time I think we’ve figured out how to navigate one version of hard, life hands us a completely different one.

And this? Having Declan with me 24/7 at Ronald McDonald House while still spending our days at Lurie’s with Colton?

This is a whole new level of hard.

It’s something I prayed for. Something I dreamed about for months. Something I wanted more than anything in the world.

And yet, that doesn’t mean it’s easy.

I think that’s one of the hardest things to explain about this journey. You can be incredibly grateful for something and still be completely overwhelmed by it.

You can be living out an answered prayer and still be struggling.

Both things can be true.

One thing I know for sure is that I couldn’t do any of this without Ryan…..

He has been my motivator, my best friend, my sounding board, and my saving grace through all of this.

If there is one beautiful thing that has come out of this incredibly difficult year, it’s how much closer this journey has brought us.

We have been through things together that I never could have imagined. We’ve cried, laughed, gotten frustrated, picked each other up, and somehow kept moving forward.

I know it’s absolutely killing him that he can’t be here with us as much as he wants to be.

But someone has to keep working, keep our home running, and take care of our sweet Riley.

And I know that’s not easy for him either.

We’ve spent so much of this year living two completely different lives, trying to keep everything together while our hearts are in the same place.

I also want to give a HUGE thank-you to our friends and family who have stepped up to help with Riley. You have no idea how much that means to us.

With the holidays approaching, nursing training ramping up, and everything we still have ahead of us, the next few months are going to be a little insane. Knowing that Riley is loved and cared for takes one more worry off our plates.

So to everyone who has offered to help, taken care of her, or rearranged their own schedules for us, THANK YOU. Truly. ❤️

Now, back to my little roommate, Declan….

Let me tell you something about this child.

He is the CUTEST little thing. And thankfully he is…. He is also an absolute TERROR in the mornings.

And I mean that with every ounce of love in my body. 🤣

If you text me in the morning and I don’t answer, please don’t take it personally.

Actually, consider yourself lucky.

Because you probably don’t want to hear what I have to say during those hours anyway…..

There are a select few people who get the privilege of hearing about our morning adventures. Jamie, Jill, Nancy, Katie…. our soon-to-be nurse, Christie, Kelsey (NICU momma), and whichever poor nurses at Lurie’s happen to cross my path.

They can all confirm that mornings with Mr. Declan are NOT for the weak.

I’m pretty sure this child wakes up every morning and chooses violence….. not joking

But once we get through the morning madness… He really is doing great! He sleeps through most of the night, which I am incredibly thankful for.

Now, does he make some of the STRANGEST noises I’ve ever heard in my life while sleeping?

ABSOLUTELY. Nurse Michelle, you warned me about this, and you were not kidding!!!!

He is one funky little dude at night.

But hey, he sleeps. And at this point, I’ll take whatever wins I can get!

He absolutely LOVES bath time. He loves snuggles. He loves hanging out on Mommy’s bed.

And apparently, he also loves using Mommy’s bed as his personal bathroom. We’ve already had pee AND poop incidents….yes, the laundry has officially begun. 🤦🏼‍♀️

Welcome to motherhood, right?????

But underneath all the chaos, exhaustion, laundry, and ridiculous mornings is something I still can’t quite put into words.

Declan is WITH ME.

Every single day.

Every single night.

When I wake up, he’s there.

When I go to sleep, he’s there.

I don’t have to say goodbye to him at the end of the day. I don’t have to leave him behind in a hospital room.

After nine months of walking away from my babies every single night, I finally get to keep one of them with me.

And that is something I will never, ever take for granted.

This is what I prayed for.

This is what I dreamed about.

This is what kept me going through some of the darkest days of this journey.

Now I just need his brother here with us, too…..

And I cannot wait for that day.

Another HUGE positive update: HOME NURSING! 🙌🏻

We have been working closely with our nursing agency, and I think we are finally getting everything lined up!

We have some amazing nurses coming on board, and we are working through the schedules to make sure everyone is happy and that we have the coverage we need.

I believe we only have one more night nursing position to fill! ONE!

(everyone else who’s still interested from either Luries or CDH, you know I’ll take you in a heartbeat. And we will always need fill-ins for coverage…. So just cause we have our team filled please do not be discouraged. As I say to you over and over again reach out to Maxim!!!! We’d take any of you and you know it!!!)

After everything we’ve gone through trying to figure out what life at home will look like with two medically complex boys, this feels like such a big accomplishment.

We still have training to complete, schedules to finalize, and a whole lot of moving pieces, but we are getting there.

Now we just need to get Colton ready for that home vent so we can keep moving forward.

I am SO eager to get home.

But if I’m being completely transparent, I’m also scared. I’m scared that once we finally get home, I’m never going to leave the house.

I’m scared of how different our lives are going to look. I’m scared of trying to find some sort of balance after spending nearly an entire year in survival mode.

And I think now that Declan is finally with me, some of the postpartum emotions and anxiety that I’ve been pushing aside are starting to catch up with me.

For nine months, I’ve been running on adrenaline. Every single day has been about keeping the boys alive, making medical decisions, learning new things, and just getting through whatever was thrown at us.

There hasn’t been much time to process any of it. And now that one of my babies is finally out of the hospital, I think some of those emotions are starting to surface.

It’s hard.

Really, really hard.

But I’m not going to go too far down that rabbit hole tonight.

Because tomorrow is about Colton.

Tomorrow is about getting him through another procedure and hopefully taking another big step toward getting our family together.

And that’s where I want to put my energy right now…..

One last thing…

If you’ve texted me, called me, or reached out and I haven’t responded, please know that I’m not intentionally ignoring you.

Well, unless it’s during Declan’s morning witching hour. Then I probably am. 🤣

But seriously.

I am trying.

I am doing the absolute best I can.

Some days, even finding the energy to respond to a simple “How are you?” feels impossible.

Because the truth is, I don’t always know how to answer that question anymore.

How am I?

I’m tired.

I’m overwhelmed.

I’m grateful.

I’m happy.

I’m sad.

I’m anxious.

I’m excited.

I’m scared.

And sometimes I feel all of those things within the same hour…. Hell… the same MINUTE!

That’s why I’ve continued writing these blogs.

It’s my way of keeping everyone updated while also trying to process this crazy life we’re living.

I appreciate every single person who continues to check in, pray for our boys, and support our family. Even when I don’t have the energy to respond, please know that your messages mean something to me.

But I’d be lying if I said this was easy.

And I’d be lying if I told you I was doing great.

The best way I can describe how I’m doing right now is that I’m surviving.

And honestly?

That’s what this entire year has been.

Surviving.

Surviving the scary days.

Surviving the surgeries.

Surviving the setbacks.

Surviving the loneliness.

Surviving the exhaustion.

Surviving a life that looks absolutely nothing like the one I imagined when I found out I was pregnant with our boys.

But somehow, through all of it, we keep finding reasons to smile….

We keep finding little victories.

We keep finding strength we didn’t know we had.

And most importantly, we keep moving forward.

I look at these two boys, and I know every single hard day has been worth fighting through.

I just wish the hard days weren’t quite so hard sometimes.

So tonight, I’m going to snuggle Declan a little tighter, say an extra prayer for Colton, and remind myself that we are one day closer to having our family together.

One day at a time.

One procedure at a time.

One little victory at a time.

That’s how we’ve made it this far, and that’s how we’ll keep going.

Please keep our sweet Colton in your prayers tomorrow. Pray for his surgeons, his medical team, a smooth recovery, and some encouraging answers about his next steps.

And maybe say a little prayer for his very hungry belly, too. 😂💙

Thank you for loving our boys and continuing to walk alongside us through this incredibly long journey.

God is good. Even in the hard. ❤️‍🩹🙏🏻

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