June 19th morning… last few days. 😢❤️‍🩹💔

It's been a few days since our last update, and honestly, I think part of me was afraid to write one.

The last few days had been good. Really good.

Both boys were eating, pooping, playing, and staying busy. They were active, alert, and giving us glimpses of what life might look like someday outside these hospital walls. After everything we've been through, those kinds of days feel priceless……..

Tuesday

We got wonderful news that Declan's blood cultures came back negative! Such a huge relief. The plan was to replace his central line the following day and continue his feeds. If everything continued to go well, we were hoping to start increasing them again.

Colton was preparing for his PEEP study scheduled for Wednesday morning. He spent the day being absolutely adorable, playing with his toys and showing off his personality. Sometimes it's easy to get lost in all the medical terminology and forget that he's just a baby who wants to play.

Wednesday

Declan had his new central line placed successfully.

Colton completed his PEEP study and ended up needing yet another trach upgrade. Somehow our little guy keeps needing bigger sizes! For now, his settings are staying the same while the team continues to evaluate next steps.

For Ryan and me, Wednesday also meant something we haven't done much of lately: we got to be Mom and Dad instead of nurses, care coordinators, and medical researchers. I went home and saw Garth Brooks together. It was a much-needed night out and a chance to breathe for a few hours.

Thursday

The day started much like the others, busy, active, and full of little victories.

But by the afternoon, things changed.

Declan had a strange episode involving his eyes. No one was quite sure what we were seeing, so the team decided to play it safe and hook him up to EEG monitoring, the same seizure monitoring machine Colton had been on just a week earlier.

Around 11:00 PM, we got our answer.

The EEG captured an actual seizure.

The team quickly gave him anti-seizure medication, and thankfully he has not had another episode since. We are continuing to watch him closely.

To add to everything else, his new central line has also been having issues, so the plan is to replace it again…. Today.

Honestly, this is why I was hesitant to post an update.

Every time we seem to get a few good days strung together, something happens. I kept thinking maybe if I didn't say anything, I wouldn't jinx it. But that's not how any of this works.

Here we are facing another hurdle. Last week it was Colton. over the weekend it was Declan…This week it's Declan again… poor buddy.

Please keep praying for our boys.

Pray that the seizure medication continues to work. Pray for answers. Pray that the new line placement goes smoothly. Pray that there are no more surprises waiting around the corner.

Most of all, pray that these boys can finally focus on the one thing they've been fighting so hard to do for nearly five months: heal, grow, and come home.

This journey is hard. So much harder than I ever imagined.

Today, this mama's heart is hurting.

As I write this, tears are running down my face because I'm tired. I'm scared. And I'm so desperately ready for a season where the biggest thing we have to worry about is what outfit the boys are wearing that day.

But this morning we'll get up, walk back into the hospital, hold our boys, and keep going.

Because that's what they've taught us to do.

One day at a time.