Help Finneas Jude Thrive Despite CCHS Diagnosis

From the bottom of my heart, we thank you for your support. Below are words directly from Jayden.

Anybody who knows me knows how much pride I take in my independence. I’ve always made a point to never ask for help.. I can figure it out. Unfortunately, my ego has to go on the sidelines now. We were so prepared to bring this boy home and give him everything. We were fully prepared to bring home our healthy baby boy. However, our Finneas didn’t come here to this world healthy. He was sent straight to the Nicu after a complicated birth. “It’s okay, a lot of babies have to spend a day or two in the Nicu” or “my son spent a week in the Nicu and now he’s perfectly healthy” were the stories I was told. The doctors had their theories. They thought maybe he was obstructed from the inflammation of being intubated. He went through steroid treatment and was put on nippv for respiratory support. I’ll never forget the day the doctor told me they didn’t know what was going on with him. What do you mean you don’t know? He’s supposed to be healthy. This is supposed to be routine. Why don’t you know what’s wrong with my boy? Why aren’t we at home holding him, loving him, feeding him?

After a few days in the NICU, on February 9th, a doctor told me what he thinks Finneas might have. A rare genetic mutation called Central Congenital Hypoventilation Syndrome. My first thought was “oh wonderful! A possible answer so my boy can come home healthy! We can treat this!” When I asked the doctor what that meant he said Finneas will be ventilator dependent for the rest of his life.

On January 28th the test results came back confirming Finn has CCHS. We’ve had our time to process. This is no longer a story or grief and pain but a story of learning how to give our son as normal a life as possible even with his disability.

That requires some extra support financially during these times. Finneas will spend the next month or two in the hospital where he will undergo a tracheotomy. Tracheostomy’s require 24/hour care. Mentally, we are ready to provide all the care he needs. We will spend this time in the hospital learning it all from the amazing respiratory therapists. Unfortunately, while we’re prepared mentally- financially this has been quite the blow. The Ronald McDonald house for Randall’s children’s hospital is undergoing construction until July. We have a hotel room for 1 more week- but aren’t sure what we will be able to do after that on top of the bills at home. Not to mention the gas and food and us both being out of work to be here for our son. I hate this more than anything. I promise I had it all together for Finneas. There’s just no way we could’ve ever prepared for this.

If you’re able to support us in any way, please know how deeply thankful we are. Seriously this makes me sick needing to ask for help.

Please reach out to McKyla with any questions.