Sept 6th

As I always say, this journey is a roller coaster.

And here we go again.

Last week felt like such a high. Declan made the huge jump to low flow. He was able to get out of his room, go to his very first playgroup, and experience a little bit of freedom. Colton was making progress too, although I asked everyone to keep praying for him.

And we still need those prayers.

Because this weekend reminded us very quickly that in the NICU, everything can be great… until it isn’t.

Friday started out great. Then, later in the afternoon and evening, Colton had a few episodes. One of them was significant enough that we had to bag him again. 😢😢

That is something you never want to see or hear.

We believe it may have had something to do with lowering his PEEP and some of his pressures, but at this point, I honestly don’t know exactly why it happened. And sometimes that is one of the hardest parts of this journey, not always having an answer.

Thankfully, Saturday was much quieter for Colton…had a very low-key, relaxing day, which was exactly what he needed. Things stayed calm enough that we were actually able to lower his PEEP again.

And as of today, Sunday, he is doing really well.

He has been sleeping HARD. His heart rate has been some of the best I have seen in a very long time. His breathing looks beautiful. He is starting to drink more from his bottle again. And one of my favorite things…his little face continues to look better and better.

So overall, Colton is doing much better.

But that is this roller coaster….

One minute your stomach is in your throat, and the next minute you are climbing back up again.

Then there is Declan….

After his incredible week, he had a pretty rough Saturday and Sunday morning.

Personally, I think our little overachiever has simply been doing too much.

He has been so excited to be awake, play, look around, get out of his room, and experience everything that he hasn’t been taking the naps his body desperately needs. Everyone is so excited for him and his progress that naturally we want to keep moving forward.

But his body reminded us that he is still the one in charge.

Declan is now back on NAVA, which is giving him additional oxygen and ventilation support. We essentially put him back to where he was last weekend.

So yes, technically, it is a step backward.

But hopefully it is just the step backward he needs so his body can rest before we start moving forward again.

The plan now is to go slowly. We will reduce his support carefully and see how far he can comfortably get without pushing him too hard.

He has also been in quite a bit of pain, and we have a feeling a lot of it is coming from his belly. His G-tube site is very angry right now, and there continues to be a lot of back-and-forth about exactly what needs to be done and what the next step should be.

There has just been A LOT of change for him over the last week.

And I think we need to slow down….

Everyone is excited. I am excited. We see glimpses of what life can look like for him and we want more of it. We want to move forward.

But he still needs rest.

And that is something I have to remind everyone, including myself.

These are still really sick babies.

They are still in an ICU for babies. That is literally what the NICU is.

They cannot move at the pace of a healthy baby at home. They cannot be expected to do everything a healthy baby their age might be doing. Their bodies have been through more in seven months than most people will experience in a lifetime.

They should still be sleeping more than they are awake. And over this past week, both boys have been awake more than they have been sleeping throughout the day.

Part of me wonders if that is my fault. Maybe I have been so excited to finally play with them, hold them, get them out of their rooms, and experience some “normal” baby things that I have pushed a little too much too.

So this week, Mom is becoming the nap police.

We are slowing down.

We are resting.

We are letting their bodies lead.

And if that means fewer adventures for a little while, that’s okay. There will be plenty of time for adventures later. Gosh I’ve waited this long…. What’s a few weeks…

😢😢

I will admit, though, I feel a little defeated tonight.

I went home for ONE day, and it felt like everything crashed and burned while I was gone.

That feeling is hard.

But I also know that isn’t really what happened.

What actually happened is that I left my boys with an incredible team. They saw the hard moments. They handled the hard moments. They took care of my babies when they needed it most, and by the time I came back, I was already seeing progress in both boys.

I didn’t have to see their hardest moments this weekend….

And maybe I didn’t need to.

Their team carried them through it.

For that, I am incredibly grateful.

But I am also tired.

So, so tired.

I am tired of the roller coaster.

I am tired of wondering what tomorrow is going to bring.

I am tired of celebrating something huge and immediately wondering when the next setback is coming.

I am tired of hospital rooms, monitors, alarms, ventilators, oxygen, rounds, numbers, settings, tubes, and plans that can change within hours.

I just want to be home.

I want to wake up under the same roof as my husband and my boys.

I want our family together.

I want normal mornings and messy afternoons. I want bottles, naps, toys, snuggles, bath time, and bedtime without monitors surrounding us.

I want to be home with two happy, healthy babies.

I know we aren’t there yet.

So for now, we keep riding the roller coaster.

We celebrate the highs.

We survive the drops.

We slow down when their bodies tell us to slow down.

And tomorrow, we get up and do it all over again.

Please keep praying for both of our boys.

Pray for Colton’s lungs and that he continues to tolerate his changes without any more scary episodes.

Pray for Declan’s belly, his G-tube site, his pain, and that this extra respiratory support gives his body exactly the rest it needs.

Pray for wisdom for their care team to know when to push and, maybe even more importantly, when to stop and let them rest.

We just have to keep holding on.

Keep the prayers coming.

God bless. 💙🩵

A little prayer tonight…

Dear God, please wrap Your arms around Declan and Colton tonight. Give their little bodies the rest they need and the strength to keep healing. Calm Colton’s lungs, ease Declan’s pain, and guide every decision their care team makes.

Help me trust You in the setbacks just as much as I praise You in the victories. When I am tired, carry me. When I am scared, remind me that You are here. And when this roller coaster feels like too much, give our family the strength to hold on just a little longer.

Please keep moving our boys toward the day we have prayed for over and over again…the day we finally get to bring them home.

Amen. 💙🩵🙏