March 15th - been a hard week

This has been a very heavy week for our family.

First and foremost, we had to say goodbye to our first baby boy, Rusty, on Saturday March 14th. Our hearts are shattered and our eyes have been full of tears since. Rusty was our first baby, our best friend, and a piece of our family that can never be replaced. The house and our hearts, feel very different without him. He was the best dog ever….. 😭

Earlier this week we also made the move from Winfield to Chicago so the boys could receive care at Ann & Robert H. Lurie Children’s Hospital. The transport itself was successful, but it came with a lot of fear. Watching your tiny babies take their first “car ride” in an ambulance without mom and dad beside them is something we never imagined we would experience. Thankfully, the transport team and the staff at Lurie’s were incredible and everything went as smoothly as it possibly could have.

Once we arrived, the reality of a large children’s hospital hit us quickly. The number of doctors, specialists, and teams involved was overwhelming at first. Everyone needs to learn the boys’ stories and see things firsthand, which means a constant flow of people in and out of the rooms. There have been many ups and downs, a lot of questions, and a lot of tears and anxiety along the way.

This weekend, both boys are finally getting some much-needed “quiet time” and rest. Mom and dad needed to step away to say goodbye to Rusty, so we are very grateful the boys were able to have a calmer couple of days while the teams here continue to watch over them closely.

But in the middle of such a difficult week, we are also seeing progress.

Colton

He is 2 lbs 10 oz, still working toward that 3 lb mark. He finally completed his MRI of his wrist (third time was the charm). He is now on full feeds and is eating and pooping very well. In fact, he seems to enjoy trying to poop on mom during diaper changes. His ventilator settings were adjusted slightly and his oxygen needs are getting closer to his baseline. He has episodes where he needs assistance breathing, but we are working on getting him stronger. Once he is off the vent, things will get better. But most importantly, he’s growing. Dad even said when he saw him that his head looked bigger.

Declan

He is 3 lbs 2 oz.

He is finally eating! Small, steady amounts, but the milk is moving through his belly and both intestines. In the coming week we will be doing testing on the lower GI tract to better understand what is causing his issues. Right now he is passing stool through an ostomy bag, and while that may sound scary, it is actually really encouraging news and shows progress. With time we will continue learning more and working with the surgical teams to determine the long-term plan.

We are also working closely with the liver team. His liver numbers are showing some concerns, so they are running more tests and building a plan moving forward.

The biggest news:

Both boys have been enrolled in the Pivotal study and have been randomized to receive a catheter-based closure of their PDA. The procedure is currently scheduled for tomorrow, March 16. Their most recent echocardiograms still show a moderate PDA and moderate pulmonary hypertension, along with mild aortic stenosis and some abnormal blood flow patterns. Closing the PDA could help take some pressure off their tiny hearts and lungs, and we are hopeful this step will help them continue moving forward.

It’s been a lot. Truly a lot.

We are grieving the loss of Rusty while at the same time fighting alongside these two little boys. A piece of our hearts is missing, while the other pieces are growing in incubators and needing every ounce of strength we have.

Right now, life is just really hard.

We are holding onto hope, celebrating the small wins, and asking for all the prayers you can spare as we keep moving forward one day at a time.