8 months old! Sept 27th

Eight months.

It’s hard to even type those words.

Eight months ago, two tiny 1.5-pound boys entered this world far earlier than they were supposed to. And somehow, here we are. Eight months later. Still in the hospital. Still taking things one day at a time. Still waiting for the day when our whole family finally gets to go home.

But today, we celebrated.

Dad even skipped softball this morning to spend the boys’ 8-month birthday together as a family. And honestly, those simple moments mean more to us now than I ever could have understood before all of this. Just Mom, Dad and our boys together. No big celebration needed.

It has been a little while since we’ve given an update, so here is where our two stubborn little fighters are today.

Declan

Declan continues to do really well on high flow. If he keeps showing us that he is ready, I think we may make another change or two next week to slowly lower his settings.

And the word we are starting to hear more and more with Declan is something we have waited eight months to hear:

Home.

We are starting to have conversations about getting his feeds into a schedule that can work at home. Right now, he gets continuous feeds for 18 hours and then gets a six-hour break in the middle of the day.

His belly is also looking better. He still has some tissue around his G-tube site, but it isn’t nearly as angry as it has been. Most importantly, it is something that can continue to be treated outpatient.

At home.

There is that word again.

Nothing is promised and we still have work to do, but after eight months, hearing people talk about things that can be managed at home feels pretty incredible. Especially for Declan Jet, when at the beginning there was little and no hope. Only our hope and prayers and god.

Personality-wise, Declan is a complete grump.

He is also finally getting to just do baby things. He wants to be held.

He wants to be touched.

He wants attention.

He wants someone talking to him and playing with him.

And he definitely has not figured out yet that he is a twin and is supposed to share Mom and Dad’s attention with another baby.

Colton

Our sweet Colton is loving life at a PEEP of 9.

Dropping his PEEP did seem to help some of the swelling in his face and head, although we are starting to see it slowly creep back again.

We are continuing to work on it and will have more conversations tomorrow about what other options we may have.

His pressures can still get very high at times, which means he isn’t ready for a home ventilator yet.

And I want to say this part clearly because we get asked a lot:

We do not know when Colton is coming home.

His road is different from his brother’s. He is still likely a few months away, but even that is not something anyone can predict.

His doctors don’t know.

We don’t know.

Only God and Colton know.

So for now, we aren’t focusing on a date.

We are focusing on him.

And Colton is doing really well.

He continues to get stronger with PT and OT. He is starting to explore teething toys and doing more and more baby things.

He smiles. He plays. He loves attention.

But mostly, he loves snuggling with Dad.

Those two have officially become nap buddies, and I think Dad might enjoy those naps just as much as Colton does. 🤍

Eight Months

This journey is still hard.

Really, really hard.

Sometimes I think about the fact that we have been doing this for eight months and I don’t even understand how that’s possible.

And for me, it has been almost nine months.

January 9th feels like a lifetime ago.

That was the day I went into the hospital. The day my life, in so many ways, went on pause.

And while my world stopped, everyone else’s kept moving.

That is one of the hardest parts of a journey like this that I don’t think people always see.

I miss my friends.

I miss my family.

I miss my husband.

I miss my home.

I miss normal plans and normal weekends.

I miss the version of motherhood I thought I was going to have.

There is a very real grief that comes with the NICU. You can be unbelievably grateful that your children are alive and growing while also grieving everything you missed.

We didn’t get the newborn stage we imagined.

We didn’t bring our babies home from the hospital.

We didn’t spend those first sleepy weeks figuring out life with twins in our own house.

Instead, we learned ventilators and oxygen settings. We learned surgeries, procedures, medications and medical terminology we never wanted to know. We learned how to celebrate things most parents never have to think twice about.

And somehow, eight months later, this hospital life has become our normal.

There are days when I am incredibly strong.

And there are days when I am simply surviving.

But then I look at them.

Eight months old.

Five months corrected.

And they look and act like five-month-old babies.

They play.

They smile.

They get mad.

They want attention.

They snuggle.

They are learning.

And most importantly…

They are growing.

Declan is now 14 pounds.

Colton is now 13 pounds.

Both boys are around 55 cm long.

It is almost impossible to look at them now and remember just how tiny they once were.

From around 1.5 pounds and 21 cm… to this.

Our boys.

Growing.

Thriving in their own ways.

Still fighting.

Still teaching us patience every single day.

Eight months wasn’t supposed to look like this.

But eight months also means we have gotten eight months with them.

Eight months of watching two impossibly tiny babies become these funny, stubborn, opinionated little boys.

Eight months of watching prayers be answered in ways big and small.

Eight months of learning that progress doesn’t always happen in a straight line.

Eight months of learning to celebrate every single inch, ounce, lower vent setting, good therapy session, smile, snuggle and ordinary baby moment.

We still have a road ahead of us…..

For one boy, the word home is starting to become part of the conversation.

For the other, we are still patiently waiting for his lungs to tell us when he is ready.

And that’s okay.

There is no race between them.

They have been together since the very beginning, but they have always had two very different journeys.

So we will keep meeting each of them exactly where they are.

We will keep showing up.

We will keep praying.

We will keep celebrating the good days and getting through the hard ones.

And one day… whenever God and these boys decide it is time…we will walk out of this hospital. ALL TOGETHER.

Until then…

Happy 8 months, Colton and Declan. 🩵💙

You have already lived more life, fought harder and taught us more about love than I could have ever imagined.

Mom and Dad are so incredibly proud of you. One day closer to home. 🤍