Aug 5th

A Week Full of Big Steps

This week brought some exciting progress for both of our boys. As always, we celebrate every victory while remembering they’re still in the NICU, still on life support, and still have a long road ahead. But this week definitely gave us more reasons to smile. God is good!!

💙 Colton

Colton continues to amaze us.

He’s doing well on his trach. He’s tolerating his feeds, continuing to take bottles, and even had his electrolyte supplements restarted to help with some of the puffiness he’s still experiencing. His blood pressure and urine output continue to look good, and he’s handling his clonidine & potassium like a champ. (Finally keeping the levels he needs)

He had a minor setback this week as we tried to change his peep down from 13 to 11, it was successful at first, but after a full day of the lower peep, he started to struggle. We had ENT come in and we did another scope and noticed he had Malaysia still impacting his Trach. So we’re starting him on new medicine and we went back to 13 for his peep. We will recheck again on Tuesday and see how things look.

The biggest thing with Colton right now is… he’s just becoming more and more like a baby.

He loves snuggles, his swing, baths, talking to everyone around him, and keeping all of his nurses on their toes.

We’re still working toward the home ventilator, but every day he gets a little stronger and a little closer.

💚 Declan

Declan had the biggest changes this week.

After lots of conversations with his medical team, we’ve decided to move forward with placing a GJ tube. This will replace the feeding tube that’s currently going through his nose.

While it may sound like just another procedure, it’s actually a really important step.

Removing the tube from his nose opens up his entire face, giving the respiratory team many more options to help support his breathing if needed. Instead of having only one option after extubation, they’ll have multiple ways to help him succeed before needing to re-intubate.

His GJ tube placement is scheduled for tomorrow. Meaning next week will be a BIG step forward and he will get to try to breath on his own. PLEASE keep the prayers coming!!! 🙏🙏

Overall, he’s tolerating his feeds well, his sedation continues to be weaned, and he’s remained stable on the ventilator. We continue working toward the ultimate goal of getting that breathing tube out when he’s truly ready.

This week reminded us that progress isn’t always loud.

Sometimes progress looks like changing a feeding tube.

Sometimes it looks like another medication.

Sometimes it looks like simply staying stable.

Those little steps are what eventually become giant leaps.

We’re incredibly thankful for the doctors, nurses, therapists, and everyone walking alongside us. And as always, we’re thankful for every single prayer, message, and person cheering our boys on.

Please continue praying for:

• A smooth GJ tube procedure for Declan.

• Wisdom for his medical team as they continue planning toward extubation.

• Continued growth and strength for both boys.

• Protection from setbacks.

• Peace for Ryan and me as we continue making difficult decisions.

  
  

Thank you for loving our boys so fiercely.

One day at a time. One prayer at a time. One miracle at a time.

God is still writing their story, and we’re so grateful you continue following along with us. 💙🩵

One of my favorite parts of the day. I get to be a normal mom and hold my baby boy. 🩵

Declan Jet