We found out at my 20-week scan. He has a blockage in his lower urinary tract, meaning his bladder was 5x the size it should be. His left kidney is cystic and cannot function. We were hoping for the right kidney to have function and it does about 25%. Our biggest issue along with all this was he had zero amniotic fluid and little to no lung growth which is obviously vital to life. As we know now he did have.

I was told so many grim details about the small chance he had of survival.

When a fetus ‘urinates’ that becomes amniotic fluid, they ‘drink it/breath it’ and that grows their lungs. Since he has a blockage, he was not able to do this and has had zero fluid. 

 

My unborn son and I underwent surgery to put in a shunt, a device to try get the bladder emptied. This worked, but at my 1 week follow up the device had already fallen out. However, baby did have ample amniotic fluid from 21.5-28.5 weeks which he needed to start growing his lungs. We never knew if our son could breathe until he was born. There’s no test for lung development in utero.

 

Once fluid was gone, I was monitored at UCSF for 24 hours then at Kaiser WC 3x a week out-patient for fear of cord compression. As ‘typically’ an umbilical cord is free floating in amniotic fluid. Without amniotic fluid, baby could compress the cord and cut off his own blood supply. 

 

It was decided to induce me at 36.5 weeks at UCSF, therefore the doctors could control when Jax comes and where he is delivered so they are prepared for his arrival. 

 

He was born May 28th at 7:39 am.

He made the smallest sound when laid on me quickly, then he was taken to another room to be given the care he needed. I heard the most beautiful baby cry from the next room. Jax was intubated after birth on an oscillator to help him breathe. 

On June 1, I was finally able to hold him. It was the best feeling. June 6^th, Jax was able to be on a cpap machine; I was able to hear him cry. Music to my ears. June 11^th, Jax was on room air. Week of June 25^th, he had surgery to ablate his valve which caused the original in utero problems. 

Week of July 11^th Jax was home after 41 days in nicu. I was having to cath him every 3 hours to empty his bladder; in September we found out he no longer needed this and has been able to void on his own since. 

December 8^th, Jax had a g-tube placed to help him eat more and gain weight. 

As I type this on April 1, 2022, Jax is currently on 11 different meds and fortifiers, monthly labs and weekly check ins with various doctors.

 

Jax needs a kidney transplant. We have partnered with the Children’s Organ Transplant Association (COTA) for assistance with transplant-related expenses. Please consider donating to COTA for Team Jax.

 

The Children’s Organ Transplant Association (COTA) helps children and young adults who need a life-saving transplant by providing fundraising assistance and family support. COTA is the nation’s only fundraising organization solely dedicated to raising life-saving dollars in honor of transplant-needy children and young adults. 100% of each contribution made to COTA in honor of our patients helps meet transplant-related expenses. COTA’s services are free to our families, and gifts to COTA are tax deductible to the fullest extent of the law.