Sept 21st

It’s been a few days since our last update because we took some much-needed time this weekend to just enjoy being together as a family. 💙

Saturday morning was actually a pretty big step for our family… we got our family car! Three rows with plenty of room for the boys, all of their things, and eventually the additional nursing help we’ll have with us. It feels a little surreal to buy a vehicle specifically thinking about

bringing our boys home, but we absolutely love it.

After getting the car, we headed into the city to see the boys. And no, we did not take the new car. 😂 Ryan drove for once….

Saturday was such a great day. Lots of laughter, lots of snuggles with Dad, and just a lot of happiness. For whatever reason, these boys are always on their BEST behavior when Dad is around. They are calm as cucumbers and love to show off for him.

Brian and Nancy were there too, so it was a fun day of all of us being together and, of course, the boys getting completely spoiled.

But don’t let that fool you… these boys are still VERY stubborn. 😂

Declan 💙

Let’s start with Declan this time.

Declan is WILD.

For a little boy who was always so calm and patient through everything he has been through, he has officially found his wild side and his personality is coming out more and more every day.

He loves to play. He loves to scream. He loves to laugh. He loved to scream. He loves to smile. He loved to scream. He loves to cry.… did I mention he screams? 😂

He is one very vocal little boy, and honestly, we wouldn’t have it any other way.

He also very much wants to be held and snuggled. If he hears me, smells me, or simply knows I’m somewhere in the room, he wants Mom to pick him up.

As much as I might jokingly complain about it, the truth is that these are the moments I waited so long for.

I finally get to hold my baby.

I get to snuggle him. I get to cradle him. I get to dance with him. I get to have him fall asleep in my arms.

Those moments are something I truly treasure.

Now, after sitting there for hours, sometimes Mom really does need to pee. 😂 Or move around. Or check on his brother who is squeaking away in the other room. But even then, I know how lucky I am to finally have these moments with him.

Medically, Declan is doing really well. He is currently on high-flow oxygen at a level of 4.

He is still working a little harder to breathe than we would like, so the plan is to give him a few quieter days to rest and see how he does.

We’re not overly worried. He just needs some time and rest, something we have learned over and over again that these boys need.

Luckily, resting in Mom’s arms happens to be one of his favorite activities.

If only Dad could be here every day, because remember… when Dad is here, Declan suddenly becomes a perfect little angel. Cool as a cucumber. 😂

Overall, Declan is doing fantastic, and we are eager to see where these next few weeks take him.

Mr. Colton 💙

WOW.

Just wait until you see the pictures below.

We are finally starting to see the puffiness come down in Colton’s face, and it feels so good to see more and more of our sweet boy again.

He is playing, drinking his bottles, loving his snuggles, and of course enjoying his naps with Dad.

But we also had a BIG respiratory milestone today.

Over the past few weeks, we have slowly been able to lower Colton’s PEEP from 14, to 13, to 12, to 11…and as of today…

COLTON IS DOWN TO A PEEP OF 9! 🙌🏻

For those wondering what PEEP means, here is the simplest way I can explain it:

PEEP is the amount of pressure the ventilator keeps in Colton’s lungs at the end of each breath to help keep his tiny airways and lungs open.

Because Colton has severe BPD and tracheomalacia, he has needed higher PEEP to basically act like a little “stent” of air pressure, helping keep everything open so he can breathe.

So when his PEEP was 14, his ventilator needed to provide quite a bit of pressure to support him.

Getting all the way down to 9 means his body and airways are needing less pressure to stay open.

And that is a HUGE step toward our ultimate goal: getting Colton onto a home ventilator.

There are still steps between here and there, but every number we can safely lower gets us closer. And honestly nine is something I never thought we would hit before the age of two. I thought that we would get on the home vent even at a peep of 12. So getting even lower, it’s just that many steps ahead. There’s still a journey and he could always go back up. But he’s making progress which is telling us that his lungs are growing and getting healthier.

We’re also hopeful that needing less pressure may help with some of the pressure and puffiness we have been seeing in his head and face.

Surgery is still planning to come take a look at his trach and airway with a scope to see if there is anything they can do to help. But now that he has made it all the way down to a PEEP of 9, there is also a possibility that they may look and decide they don’t need to do anything at all.

That is what we are hoping for.

Overall, Colton is doing really well.

And I have to say, there is just something about this little boy.

He is such a sweet little soul. The way he looks at you with those eyes just melts you. He has the gentlest little personality, and I already find myself wondering what he is going to be like when he grows up.

I have a feeling he is going to be the one helping everyone, loving everyone, and happily being everyone’s little sidekick.

This boy sure melts my heart.

And now that so much of the puffiness is finally coming down and we can really see his little face again, something else is happening…

Our identical twins are starting to look more and more alike. 🥹💙💙

After everything these boys have been through, it is pretty incredible to watch their personalities come alive and to finally have days where we can simply hold them, play with them, laugh with them and enjoy being their mom and dad.

We still have a road ahead of us, but we are moving forward.

Please continue to pray for our boys.

Dear God,

Thank You for another weekend together and for the simple moments that once felt so far away… holding our babies, hearing their laughter, watching them play, and letting them fall asleep in our arms.

Thank You for Declan’s big personality and for the strength he continues to show. Give his lungs rest, make each breath easier, and help his body grow stronger every day.

Thank You for the progress we are seeing in Colton. Please continue to heal his lungs and airway, allow him to thrive on less support, and guide us closer and closer to the day he can transition to his home ventilator.

Please continue to protect both of our boys.

Give their doctors wisdom, their nurses patience and love, and give Ryan and me the strength to keep walking this road beside them.

We know Your timing is greater than ours, even when the waiting feels endless.

Keep moving our boys forward, one tiny step at a time, until the day we finally get to bring them home.

Amen. 💙💙

Colton Ryan

Declan & Daddy snuggles