Sept 22nd - momma is tired

Today was a rough one. Not rough in the sense that anything really bad happened… thank God, but just one of those days that tested Mom, the nurses, and everyone going back and forth all day long. It was BUSY.

Let’s start with our easier child today…

Colton. 😂

Colton is doing great! He is still hanging out at a PEEP of 9. They did add a few extra breaths, so at times he gets a little additional pressure, but overall he is handling everything really well.

Possibly Thursday, we are going to take him down for a CT and bronchoscopy/scope so everyone can get a really good look at what is going on with his airway. Pediatric surgery will also be involved so they can determine whether he needs an additional surgery or whether we are good to keep moving forward without it.

With him already down to a PEEP of 9, I am feeling hopeful that we can avoid another surgery, but we want to cross every T and dot every I before making that decision.

Once we get through the scope, we can hopefully start putting together the plan to transition him toward the home ventilator in the next couple of weeks/month. 🙏🏻 A lot of that will depend on his pressures and what he continues to show us.

I learned a much better way to understand all of this today from the pediatric surgeon. The PEEP is essentially the pressure helping keep his lungs and airway open. If his airway is the problem, that is something surgery may potentially help. The bigger challenge for getting onto the home vent is the pressure Colton himself needs to push air out. His lung tissue is still damaged from being born so prematurely, and unfortunately there isn’t a quick fix for that. His lungs need to continue to grow and heal as he grows.

The good news is…. they are getting better. We can see that in his numbers. We just need them to get a little better still.

Which brings us back to the phrase we have heard approximately 10 million times during this NICU journey:

He just needs time to grow.

We are also working on another one of his ventilator measurements (flow trigger) that needs to eventually get to 1. He had been around .4 and today we moved up to .6, which is actually a HUGE step in the right direction!

There have been a lot of changes for Colton lately, so now his job is simple: REST. Especially with his scope coming up, the next few days are going to be quiet, restful days for him.

And then there is Declan……

Ohhhhh, Declan Jet….

This boy absolutely kicked our booty today. 😂

What. A. Morning.

Declan was NOT happy. No matter what Alyssa (Declan’s GF/his fav nurse) and I did, we could not get this child comfortable. We tried

everything.

We gave him some Tylenol.

We even bumped his oxygen up from 4 liters to 6 liters just to give him a little extra support while we tried to figure out what was bothering him.

We couldn’t tell if he was sick.

He doesn’t seem to have a cold.

He is just ANGRY.

Then, because apparently his morning wasn’t already dramatic enough, the team for the trial he is participating in came in and needed to do a bunch of things with him.

Declan was having NONE OF IT.

He screamed bloody murder for basically the entire 30 minutes.

Finally …. FINALLY…. Alyssa and I got him settled and asleep.

We looked at each other like, please, nobody touch this child.

And then…

“Hi! We’re here to do his echo!”

Of course you are.

Alyssa and I just wanted the poor kid to SLEEP. He screamed and punched and screamed the entire time….. broken our hearts.

Finally he got a nap…but his day wasn’t over…..

Then at 6:00 tonight, BOTH boys got their six-month vaccines. I was preparing myself for complete chaos after the day we had, but honestly, they both did really well! They each cried for a brief moment and then settled down.

Mom may have been more nervous about it than they were.

Now we wait and see how tonight goes. We have Tylenol and Motrin ready if they need it, lots of snuggles available, and hopefully two very sleepy boys.

Today wasn’t a bad day.

It was just a LONG day.

A day of doctors, nurses, respiratory changes, testing, crying, comforting, vaccines, questions, learning, and Mom trying to keep up with all of it.

I am hopeful tomorrow is a little quieter. (We don’t like to use that word in the NICU)

But for tonight…

Lord, help us. 😂🙏🏻

Tonight’s Prayer

Lord, thank You for carrying us through another long day. Thank You that even in the chaos, our boys are still moving forward.

Please continue healing Colton’s lungs and airway and guide his doctors as they prepare for his scope. Let the answers be exactly what we have been praying for and bring him another step closer to his home ventilator and eventually HOME.

Please give Declan comfort tonight. Calm his little body, help him rest, and let him wake up tomorrow feeling more like himself.

Protect both boys after their vaccines and give them a peaceful, uneventful night.

And Lord, give Mom and Dad the strength for another day. When we are tired, overwhelmed, and running on empty, remind us how far You have already carried these boys… and us.

One day at a time. One step at a time. One prayer at a time.

Amen. 🩵🩵

Angry Declan Jet

Sleepy Colton Ryan