Sept 17th

Not much has truly changed this week, and honestly, sometimes that’s a good thing. We are still taking things day by day and letting the boys grow, rest, and continue moving forward at their own pace.

We’re still working on Colton’s puffiness, in his face and head. At times it seems like it isn’t quite as tight, but he is still holding onto quite a bit of fluid. We’re going to continue working with surgery and a few other teams to see if there are any other options we can try.

We also repeated the ultrasound of his head, and I just found out that everything came back stable m… which means no changes, and in this case, no changes are good news. We had talked about doing an MRI, but since everything is stable, it is no longer urgent. We’ll still plan to do one at some point before we go home.

Otherwise, Colton has been doing really well. He LOVES his bottles, has been playful and loving, and also sleeps a lot. But sleep means growing, and growing is exactly what we need him to do right now. 🩵

Declan, on the other hand, has been feeling his clonidine wean. Clonidine is a medication that has helped keep him comfortable and calm, and because he has been on it for quite some time, his body has to slowly adjust as we decrease it.

He has definitely been a little feistier through the process and mostly just wants to be held.

More specifically… he wants MOM. 🥰 If he hears my voice or realizes I’m nearby, he will make sure everyone knows that he wants me.

As frustrating as that can be sometimes, it is also one of the best feelings in the entire world. If someone would have told me three months ago that Declan would be screaming because he knew his mom was nearby and wanted me to hold him, I probably would have told them they were crazy. I never would have believed it. Those little moments give me so much hope for the future.

We’re still working toward that future, even though there aren’t any real plans in sight just yet. Hopefully over the next few days we can continue weaning some of Declan’s respiratory support, and maybe over the next few weeks he can work his way off of it again. Slow and steady.

Today Grandma Cindy came to visit the boys, and it was so sweet seeing how much they already love her. She even got a chance to hold Declan! That officially means our parents have now gotten to hold the babies. 🥹 See the pictures below because they absolutely melted our hearts.

Overall, the boys are doing really well. Nothing huge or exciting to report…. just slow, steady progress, which we will gladly take.

And one BIG little milestone…

Both boys are officially over 13 pounds!! 🩵🩵

Woo hoo! Keep growing, boys. One day at a time. Daddy & Mommy love you so much.

Dear God,

Thank You for another week of growth, stability, and little moments that remind us just how far our boys have come. Please continue to place Your healing hands over Colton and Declan.

Help Colton’s body release the extra fluid and continue to grow stronger each day. Give Declan comfort as his body adjusts to his medication wean, and give him strength as he continues working toward less respiratory support.

Please guide their doctors, nurses, and entire care team as they make decisions for our boys.

Give Ryan and me patience and strength through the slow days and remind us that even when progress feels small, You are still working.

Keep our boys safe, help them grow, and continue leading us closer to the day we can finally bring them home.

Amen. 🩵🩵