The Booker Family

Scroll down to see updates as the Booker family progresses in their CDH Journey! (All updates are written and given by parents with consent)

Initial Backstory:

Finding out I was not only pregnant but almost four months pregnant was shocking—very shocking—especially considering I had just had a baby. I was so far along that we quickly found out he was a boy, because he certainly made that known.

I was being seen not only by an OB-GYN for general care but also at the University of Michigan in Ann Arbor. No doctor there sugarcoated anything, which I actually appreciated. I prefer blunt honesty—honestly.

What I didn’t appreciate was their lack of optimism. The words they chose—like “research” and “experimental”—felt cold and detached. They even gave me the option to terminate the pregnancy altogether. Terminate my baby, my little boy.

They gave us a 60% chance of survival, and to me, that wasn’t enough—especially when paired with their lack of faith in him making it. I became deeply unhappy with their approach and started researching out-of-state hospitals with more experience in treating his condition.

That’s when I found Johns Hopkins All Children’s Hospital and Dr. Kays—the man, the magician, the miracle worker. He had the knowledge, the stats, and—most importantly—the optimism. He gave us a 95% chance of survival. He was honest that it would be a long journey full of ups and downs, but he promised to do all he could to save my baby. That reassurance was everything.

I immediately began making the necessary plans to get to Florida to give my son the best chance. One of the hardest parts of this decision was leaving my girls behind—not for a few days or weeks, but for months. I arranged for Amelia to be with her dad for the first six weeks of summer and for Onyx to stay with my mom.

Fast forward to June 18, 2025—my baby boy, Phenix Namir Jones, was born via C-section. He weighed 6 lbs 12 oz, 19.5 inches long, with a head full of hair.

They warned us before birth that he might not make a sound when he came out due to how little lung volume he had—and he didn’t. You have no idea how heartbreaking that was.

 His journey has been rough so far. The first 40 days of his life were spent on ECMO, followed by 5 days on the ventilator, and then multiple trials on and off CPAP. Today, September 10th, 2025, he just came back from yet another surgery — this time for a Nissen and G-tube. He’s still on CPAP while he heals.

This has been the toughest journey I’ve ever had to walk, but thankfully I gave birth to a strong warrior. He continues to push through these hard times, and I can only hope and pray that we’ll get to go home sooner rather than later.

 Thank you for taking the time to be here for us. Thank you for extending a helping hand when we’ve needed it most. And thank you for being such a supportive community during this incredibly hard time.

Update 9/30/25

So far so good, we are working on weight gain currently to get us closer to going home! He's come so far in the last 3 months I couldn't be more proud.

Update 10/29/25

Phenix did it! He GRADUATED the nicu! October 9 he was cleared to be free. After 113 long days, ecmo immediately after birth, the ventilator, on and off CPAP for about 2 months my strong boy was able to pass all his tests and scans needed to be able to go home. I couldn't be more proud of this little boy. It's been an adjustment since being home but i think we'll make it through.