Let’s catch up…

A lot has happened

It’s been a long time since I’ve written a blog post — I think the last one was before Clifford even came home from the NICU.

A lot has happened since then. Time for blogging slowly disappeared as our days filled with caring for Clifford.

Much time has passed, and to be honest, I had hoped there wouldn’t be much to write about at this point. We’ve overcome so much, yet it still feels like we’re in the thick of it. I’ll get to that.

Back in the NICU, writing became my way of coping — a way to organize my thoughts, take a step back, get the hard things off my chest, and focus on the good. It also helped keep everyone updated, because so many of you have cared deeply for Clifford and followed our journey from the beginning.

I want to use this blog as a space to continue sharing our story — the hard and the beautiful — to raise awareness, help other families like ours, and show the world what a freaking warrior my son is.

So, let me fill in the blanks from the past year and a half.

Life After the NICU

After 303 days in the NICU, Clifford came home!

After bringing Clifford home, I left my full-time career to care for him full-time. We turned our home into a mini ICU — filled with medical supplies, equipment, and machines that kept our son alive.

We were trained to respond in emergencies if he stopped breathing. Looking back, it’s wild to think about what we managed at home. It was terrifying at first, but it quickly became our new normal.

Each night, Codey and I would put on our rubber gloves, clean Clifford’s stoma, and change his trach ties. We joked around and called each other Dr. Carlisle.

Even in the unimaginable stress, we found joy in the everyday. Trach changes eventually felt like diaper changes — second nature. What looked scary from the outside became completely normal to us. I’m really proud of that.

Over the next few months, we started to wean Clifford’s ventilator support until he was on the lowest settings. Soon he began breathing on his own with the trach — further proof of what a rockstar he is.

At the same time, we filled our schedule with therapies: Occupational Therapy, Speech Therapy, and Physical Therapy. Honestly, the respiratory stuff started to feel easy compared to therapy.

After spending nearly a year in the NICU, Clifford had endured so much medical trauma — more than anyone I know. He struggled with new places, people, and sounds.

Progress was slow, but it was steady — we were on Clifford’s time.

He learned to hold his head up, roll over, grab toys, then sit independently, crawl, and pull up to stand.

The Airway Surgery

In July, Clifford underwent an airway reconstruction surgery to remove his trach. He is so brave!

After a year at home, it was finally time to remove the trach. We were so excited — this felt like the milestone.

What was supposed to be a quick procedure and one-night hospital stay turned into three long days of struggle, ending with the trach being put back in.

We learned that Clifford’s airway was collapsing and he couldn’t breathe on his own. It meant a major airway reconstruction surgery was needed to remove the trach successfully.

So, in July, he underwent a four-hour surgery where doctors took a piece of cartilage from his ribcage and replaced the floppy cartilage in his airway. (Crazy, right?)

The surgery went perfectly. Afterwards, Clifford was intubated and sedated for three days — that part was incrediblyhard. It brought us right back to the NICU days. PTSD is very real.

Once he was extubated, we had to help him wean off the heavy sedation medications — that was brutal too. We spent a total of 10 days in the hospital before finally coming home.

But in true Clifford fashion, he bounced right back to his smiley self.

We’re so thankful for this surgery. Clifford’s lungs are strong, and now, with a strong airway too, he’s doing amazing.

Sending back the ventilator, suction, and donating most of our medical supplies felt surreal.

We did it. We made it through.

For the longest time, getting the trach out felt like the end goal.

Once the trach was gone, everything would be “normal.” Clifford would catch up. All of this would be in the rearview mirror.

That was our hope anyway.

Our Family Grew 🌿

In March, we welcomed another baby boy — Tucker Nelson Carlisle.

He has been the sweetest addition to our family, and we’re so happy that the boys have each other as besties for life. Tucker has brought so much light, laughter, and love into our home. Watching Clifford as a big brother has been one of the greatest joys of our lives.

The MRI & A New Diagnosis

Over the past year, we’ve been closely monitoring Clifford’s development. He recently turned two and is still fairly delayed in all areas — which is expected after everything he’s been through.

Still, after discussions with his team of specialists, we decided to do an MRI of his brain.

That’s when we learned that the left side of Clifford’s cerebellum is underdeveloped — a condition called Cerebellar Hypoplasia, caused by his extreme prematurity.

It’s hard to imagine there being anything else after all Clifford has endured.

This new diagnosis has been difficult to process. Just when you think you know it all, something new and scary enters the chat.

To be clear — we accepted the possibility of Clifford having disabilities a long time ago, and there is absolutely nothing wrong with that.

As long as he’s happy and healthy, that’s what matters most to us.

Still, like any parent, it’s hard to hear news that means life might be a little harder for your child.

So what does this diagnosis mean? It varies from person to person.

The cerebellum’s main jobs are coordination and balance — it’s what helps control movement and motor skills. It can also affect speech.

This could explain some of Clifford’s delays in walking and talking.

The good news: with therapy and early intervention, many kids with Cerebellar Hypoplasia make huge progress and go on to live full, happy lives with only mild challenges.

Only time will tell what that looks like for Clifford.

What we do know is this: Clifford is loved beyond words. His giggles are the best sound in the world.

He works so hard every single day and continues to make progress.

He has a beautiful, joy-filled life.

This diagnosis does not define him. It doesn’t mean he won’t catch up or do everything other kids do.

We’ll continue to support him every step of the way to help him reach his full potential.

Moving Forward

It’s been a tough couple of years — but that doesn’t mean our life hasn’t been full of joy and so many sweet memories.

We’ve gone on weekend getaways, swam in the lake, went to the beach and the zoo, spent so much time with family, and celebrated holidays at home.

We’ve loved every second together.

We’re so grateful to be Clifford’s parents. He has changed our lives for the better, and we can’t wait to continue watching everything he accomplishes. He is a true miracle — and he is absolutely amazing.

When I started researching Cerebellar Hypoplasia, I realized how little information there is and how few families I could find living with this diagnosis.

My hope is that by continuing to share Clifford’s story, we can help raise awareness, create a more inclusive and understanding world, and offer comfort to other families walking a similar path.

Thank you for your endless support, for cheering us on through every hospital stay, surgery, milestone, and unknown.

We feel your love every step of the way.

With love,
Sadie