May 18th - end of day

Today is hard. Really hard.

I think sometimes people hear “NICU” and automatically think of a nursery with tiny babies learning to grow bigger and stronger. And yes, there are moments of that here. But what people don’t always connect is that the NICU is also an ICU. My boys are not just in a nursery, they are living in intensive care, on life support, every single day.

This last week has been very critical.

I know I’ve tried to keep updates more generic lately. I’ve tried to focus on the positives, the small wins, and the hope we continue to hold onto. And there have been good moments. But the reality is that some days are incredibly heavy, and these last few days have been some of the hardest yet.

Declan is critically ill.

His prognosis remains guarded at this time. He has had a recent decline in status with what doctors describe as a severe inflammatory response. He currently requires deep sedation, paralysis, and high-frequency ventilation just to maintain stability. They are trying to keep his heart and lungs supported while they figure out the exact cause, but they believe it is most likely related to an abdominal issue or infection causing his body to react aggressively.

Right now, he is still maintaining adequate blood pressure and urine output, which are positives we are holding onto tightly. He is critically ill, but overall more stable than before.

Colton is also struggling.

Progress continues to be very slow. He still requires extremely high ventilator pressures and oxygen support to maintain appropriate gas exchange and comfort. Over the last few days, he has become increasingly unstable, requiring escalation in both ventilator support and sedation. There is concern for sepsis as his respiratory status and carbon dioxide levels worsen.

At this point, doctors anticipate he will likely require prolonged respiratory support and chronic invasive mechanical ventilation, which means a tracheostomy will likely be needed. As his parents, we are prepared to pursue this path for him.

In the upcoming days, we will share more about what this future plan looks like for Colton and his trach. But right now, we just need to get through these next few days first. We know our lives these next few years are going to be challenging, but worth it for them to continue to grow.

Please continue praying for both of our boys. They are fighting so hard. So are we….