Sept 14th

It’s been a little while since our last update! We had a very busy, but very much-needed weekend. Mom and Dad finally got to spend some time together after almost two weeks apart, and Dad was able to see the boys on Saturday. Much needed family time. ❤️‍🩹❤️‍🩹

And boy, did they show off for dad! 😂 They sure like to act good when Dad is around. They also love to snuggle and sleep with him. Colton and dad are already sleeping buds. He mentioned how much bigger and better they both look. I see them every single day, so sometimes it’s hard for me to notice just how much they’re changing. It was really nice to hear it.

Colton is looking a little puffy again, so we’re working with the kidney team to adjust some of his medications and hopefully get some of that extra fluid off. If that doesn’t make much of a difference over the next couple of days, we may lower his PEEP down to 11.

I continue to ask the question: if we think the pressure is causing the puffiness, but we lower the pressure and the swelling still comes and goes, what is really causing it? So that will definitely be part of the ongoing discussion with all of his doctors. Hopefully we can get some more answers and come up with the best plan moving forward.

Colton also gave me quite the scare on Friday during a trach change. His trach kept pushing back out, and I was having trouble getting it back into his stoma. It was SCARY.

But all of that education, practice and training kicked in. Somehow, I stayed cool as a cucumber, did exactly what I needed to do, and got his trach back in. I had a nurse right there supporting me, and afterward I literally looked at her and said, “Did that just happen?!”

The best part? Colton handled it like an absolute champ. He barely reacted, bounced right back and actually looked better afterward.

We think there may have been a plug contributing to everything. I won’t get into all the nitty-gritty details, but dammit, it was scary. It was also one of those moments that made me realize: I can do this. If something happens in an emergency, I have the knowledge and training to take care of my baby. That was a pretty big moment for this mama.

Declan continues to be our little superstar. We have seen a little more bleeding around his G-tube area, which we’re keeping a close eye on. We think some of the pressure going into his belly from the vent may be contributing, so today we’re lowering his PEEP to 6. For reference, we normally breathe at a PEEP of around 5 … so he is getting really close!

Later this week, we’ll start talking about slowly lowering his vent levels as well. This time around, everyone agrees we want to take things slower and give his body plenty of time to adjust.

Slow and steady. That’s the name of the game.

Now, Declan has apparently decided that being medically stable means he gets to call the shots around here. 😂 He has been a little superstar during the day, but at night he likes to rage and party until midnight. Apparently bedtime is just a suggestion…..

We are working on getting that under control over the next few days. Nobody got him off schedule this time… this one is ALL Declan. He has simply decided he’s the boss.

Unfortunately for him, Mom disagrees. 😂

Overall, we still don’t have a date for the big H word — HOME — but we can feel ourselves getting closer and closer….. and getting more ready. I sure miss being home and with Ryan. Going on 10 months…. It is so unreal and harder and harder.

The bigger they get, the stronger they get.

The more active they get, the stronger they get.

The more they sleep, grow and develop, the closer we get.

We are getting there.

It may still be slow. It may still have bumps along the way. But when we look back at where these two tiny 1-pound babies started and look at them now, it’s pretty incredible.

Keep the prayers coming for our boys, for their doctors and nurses as they make these next decisions, and for continued strength, growth and healing.

One day at a time. Slow and steady. 🩵🩵

God is good.

Dear God,

Thank You for continuing to carry Colton and Declan through every high, low, and step forward.

Please keep strengthening their little bodies, guide their doctors and nurses in every decision, and give Mom and Dad strength and peace along the way.

Keep our boys growing, healing, and moving closer to HOME.

We trust Your timing, Your plan, and Your hands over our boys.

Amen. 🩵🩵🙏

Declan fighting mom, in his Bears gear!

Sweet Colton holding his hands as he sleeps