On May 17th, 2024, we welcomed our 3rd son, Pruitt, meaning Brave Little One, into the world! The delivery went smoothly, he latched & nursed perfectly fine from the get-go while on the postpartum floor at the hospital. On May 19th, we brought our seemingly healthy baby home & began our lives as a family of 5. 

However, our world forever changed early in the morning on May 20th when our Pruitt began to refuse to latch. He then began making uncomfortable grunting sounds while breathing. We rushed him to the hospital & were admitted to the ED where they began to do a septic work-up on him. On the way to have a CT scan, he coded & required rapid response with intubation. We were then admitted to PICU where blood, urine, & CSF cultures were pending. All his symptoms pointed towards a bacterial or viral infection. 

After over 24 hours of cultures coming back negative, the genetics team was consulted. On May 22nd, the Geneticist ordered an ammonia level to be obtained. We were shocked to learn that the ammonia level was 1256 uMol/L (normal range= below <72 uMol/L)! Due to hyperammonemia there was concern for potential inborn error of metabolism, specifically a urea cycle defect, so they set up CRRT to remove the excess ammonia. 

On May 24th, Pruitt was diagnosed with Ornithine Transcarbamylase (OTC) Deficiency. This is a rare X-linked genetic disorder characterized by complete or partial lack of an enzyme that plays a role in the breakdown & removal of nitrogen in the body, a process known as the urea cycle. The lack of the OTC enzyme results in an excessive accumulation of nitrogen, in the form of ammonia, when proteins are broken down. Excess ammonia is toxic to the body, causing progressive health issues. On May 27th we got verbal confirmation that Jordan was a carrier of the gene. This was a huge surprise because she has been asymptomatic her entire life.  She also labored & delivered two healthy boys with no complications. 

On May 28th, Pruitt had his 1st MRI, & the neurologist was concerned about the bright spots showing on the images but mentioned that baby’s brains can sometimes regenerate. On June 2nd, Pruitt finally ditched the breathing tube, & we got to hold our little boy again. That felt like a long time coming. Another MRI was completed on June 6th, which showed that nothing had regenerated, & more areas were shown to be affected. A third MRI was conducted a month later & the findings suggested extensive supratentorial brain injury. 

On June 10th, our other 2 sons got swabbed to test for OTC as well. We later got confirmation that both results were negative. What a relief! Pruitt was put on dialysis over a handful of times throughout his initial hospital stay while attempting to get a nutritional plan in place. Nevertheless, we finally found a feeding regimen that worked for him. Later, we were moved from PICU to the regular PED's floor where they continued to monitor & stabilize him. 

We finally got discharged from the children’s hospital on June 28th. On August 27th Pruitt had his GJ surgery & a permanent port was placed in his chest. The port allowed medical staff to obtain labs more easily & hook up Ammonul more quickly to bring ammonia levels down if they were to rise.

In his short 6 months of life Pruitt was monitored with weekly ammonia & amino acid checks, as well as weight checks to determine if his feeding & medication regimen needed to be adjusted.  He was hospitalized monthly for high ammonia levels & his medications were constantly being increased. At 5 months he was evaluated for a liver transplant, but he never got the opportunity for a liver transplant. Pruitt was admitted for his final hospital stay November 7th & passed away November 22nd due to hyperammonemia &multi-organ failure.

Pruitt's Spirit Animal

It all started during Pruitt’s initial hospital crisis in the PICU. We were faced with some incredibly difficult news—doctors had given us grave outcomes, & we were told they were running out of options for him. It felt like we were at the end of the road, unsure of what would happen next. We were faced with difficult decisions & no one was sure if he would see a life outside those hospital walls.

But then, something unexpected happened. The day after we were faced with unimaginable conversations during a care conference with his medical team the medication & feeding regimen finally began to work. It was also the day Pruitt received his first sloth.

A small, simple item from the hospital that helped keep him comfortable became so much more. The sloth quickly became Pruitt’s spirit animal—representing patience, resilience, & the strength to move through life at his own pace. Slow & steady, but always progressing, even when the journey felt uncertain. The sloth was our turning point, where Pruitt began to progress forward & eventually ditched the breathing tube & be held by us again.

From that point on, the sloth was a symbol of hope & perseverance in our lives, a reminder that things don’t always come fast. Pruitt was then gifted Sylvie the sloth as an early Christmas present when we adventured to Minnesota for his liver transplant evaluation. Pruitt’s precious PICU sloth was placed in his casket when he was buried, but I find comfort in Sylvie the Sloth.

Sloths may have been his spirit animal, but now sloths take on a new meaning. Seeing a sloth now serves as a reminder that Pruitt’s spirit is still here with us even though his body may not be earth-side anymore. Since his passing, we have seen signs from Pruitt in the form of sloths. Sometimes, it’s the smallest things, like a sloth, that can remind us to keep going, one tiny step at a time at your pace.

Sloth Strong 

A sloth so brave, so strong, so kind, 

With blue eyes and an innocent mind,
 

Lived with resilience in every space 

He scaled the trees, at a steady pace 

But one day, the sloth’s body tired,
 

And unimaginable burdens had expired,
 

In this world, no more time to roam,
 

He was called to his forever home. 

No pain, no strain, no weight to bear,
 

He embraced the comfort of His Fatherly care. 

A new adventure, tranquil and bright,
 

In Jesus' love, in never-ending light. 

He didn't race, he didn't run,
 

For in God's arms, he had won.
 

With every step, so subtle and slow,
 

He journeyed to where the angels go. 

And when he gained the gates of gold,
 

A voice so peaceful, yet perfect and bold, 

Declared, "Well done, my faultless friend,
 

Your journey here has found its end." 

In Heaven’s meadows, so infinite and wide,
 

The sloth now rests by Jesus' side, 

No need for courage, no need for fight, 

The sloth was raised up to Heaven’s light. 

For bravery lies in quiet ways, 

In trusting God through all our days. 

And now the sloth, both happy and free,
 

has found his rest in Heaven, eternally.