Aug 17th update & photos

A Little Baseball, A Lot of Progress ⚾️💙

After everything these boys have been through, getting to share pictures of them feels like such a huge milestone in itself. And what better way to do it than with a little Cubs vs. Sox family rivalry?

Mom is a Sox fan, Dad is a Cubs fan, so naturally the boys needed matching “House Divided — I’m the Tie Breaker” shirts. The only problem? There are TWO tie breakers. 😂

For so long we have been careful about sharing their faces, and it feels really special to finally be at a place where we can start showing off these two handsome boys a little more. 💙💙

And while the pictures are cute, there is also a LOT happening behind the scenes.

💙 Colton

Colton is still our little slow-and-steady guy. His biggest job continues to be growing. We are working on getting him the nutrition and calories he needs while keeping a close eye on his weight, length, fluids, and electrolytes.

He is still doing speech therapy and working on eating by mouth when he can. He does need some feeds through his NG tube, and eventually he will most likely need a G-tube before coming home.

Respiratory-wise, he remains stable with his trach and ventilator. His lungs still need a fairly high amount of PEEP/support, so we aren’t quite ready for the home vent yet. That continues to be one of our big milestones we are waiting for. As his lungs grow and get stronger, the team will keep reevaluating when he is ready to make that transition.

His heart continues to be watched closely after his PDA closure and aortic arch issues, and his kidneys, swelling, bones, blood counts and electrolytes are all things the team continues to monitor. His potassium was running high, so his potassium supplement is currently being held.

The exciting part is that he is OFF clonidine! Another medication crossed off the list. 🙌

We are continuing all of his developmental therapies, working on feeding, playing, sitting, interacting and letting him do as many normal baby things as possible.

For Colton, there isn’t one giant thing we are waiting for right now. It is really a lot of little things — grow, get stronger, keep those lungs happy, keep eating, and eventually get onto that home vent.

Slow and steady, buddy. 💙

💙 Declan

And then there is our miracle boy, Declan.

The biggest news continues to be that HE IS EXTUBATED! 🙌😭 I can’t say this enough!!

After all of those months with a breathing tube, he is now on non-invasive NAVA, meaning there is no breathing tube down his throat. The NAVA gives him support based on what his body is asking for, and right now we are continuing to let him learn how to breathe, grow and get stronger.

That is his biggest job: keep breathing.

Sometimes he works harder than we would like, so we are giving him the support he needs while allowing him to build endurance. Getting him out of bed, holding him, playing with him and letting him be a baby are actually important parts of helping him get stronger.

His GJ tube is working well, and he continues to receive continuous feeds through the intestinal portion while his stomach is decompressed.

After everything his belly has been through, we continue to take feeding and digestion one step at a time.

His kidneys are also doing well enough that we are starting to decrease one of his diuretics, with hopes of potentially stopping it later this week. Another little step forward.

Neurology is still following him closely. He remains on seizure medications. Most of the seizure activity we have seen has only been visible on EEG, so we will continue watching and learning more.

But overall, Declan is doing something that once felt SO far away:

He is breathing without that tube.

And every day he keeps doing it is another day of practice. Another day stronger. Another day closer. 💙

Two Very Different Journeys

Their lists are still long. There are still specialists, medications, therapies, procedures, tests and plenty of unknowns ahead.

But when I look at these pictures, I don’t see the lists.

I see Colton and Declan.

Two little boys wearing ridiculous matching baseball shirts because their parents can’t agree on a Chicago baseball team. 😂

Two babies who want to be held, played with, talked to and loved.

Two brothers who have fought through more in their first months of life than most people will ever understand.

And now… two little faces we finally get to start sharing with all of you. 💙

We still don’t have home dates. We still have milestones to reach. Colton needs to grow and get closer to his home vent, and Declan needs to keep showing us that he can breathe and grow at the same time.

So for now, we keep doing what we’ve been doing: One day at a time. One milestone at a time.

And apparently… one Chicago baseball rivalry at a time. ⚾️😂

Go Sox! 🤍🖤

(Dad may disagree. 😉 but I write the posts)

Keep the prayers, good thoughts and love coming for our boys. They are working SO hard, and we are incredibly proud of them. 💙💙