Latest Update: 2005 Q3    Videos    E-Mail   

Welcome to JulianXane.com!

Finally, an update...

Overview

At 3:13 a.m. MST on Wednesday October 13th, Julian Xane was born to Stacy and David Phillips at the Estes Park Medical Center. He was 6 lb. 4 oz. 19" long. Those of you who know our story know this is no small thing.

Julian has Potter's Syndrome. The Doctor says he is "Stage 4 Potter's, variant", with Stage 1 being the most severe case. Most Potter's Syndrome children die within hours of birth; however, we have been blessed that Julian is still alive, and miraculously is expected to live. He was born with no hole from his bladder to the outside world, which meant that his bladder over-filled and damaged his kidneys: one kidney was poly-cystic - a sack of cysts - and one kidney was small, but looks like it may be able to function somewhat. Further, because Julian could not replenish his amniotic fluid with his urine output while in the womb, his lungs were severely underdeveloped when he was born.

While in the hospital, Julian's one "good" kidney began to "wake up" to a degree, but at this time is still not fully functioning. His other kidney, previously thought to be fully non-functioning, now appears to have some meat on it and may be opening up. Julian's lungs have now healed to the point where he no longer appears to require oxygen. As far as his bladder is concerned, he's had a vasecostomy to allow his bladder to constantly seep into his diaper. We'll be looking into reconstructive surgery in the next one to two years to see about restoring normal urinary function.

The story of Julian's survival is below. Click on the pictures to see enlargements, and check back frequently, as we'll be keeping the story up to date. We thank all who have prayed so far, and who continue to pray for his full recovery. God has done tremendous things with this little guy, and we are so grateful.

Jump to an update:

What can I do?

PRAY!

• No. 1: Growth. With impaired kidney function comes slow growth. See the Q3/05 update for the whole story.
• No. 2: Kidney function; pray that his creatinine level continues to drop as his kidneys "wake up." We're praying for normal kidney function, so that Julian will not need dialysis or a transplant.
• No. 3: Lung development; as of the 01/16/05 update, Julian is off oxygen! However, continue to pray that his lungs continue to heal completely.
• No. 4: The general health of Julian, as well as David (me) and Stacy, as we watch over him and participate in his healing by spending as much time as we can loving him with our presence and making wise decision about his care plan and ultimately his future.

What else can I do?

• Forward the web address to this page to anyone who might share our concern. All of your prayers are cherished.
• Email Julian!

Very sincerely yours,

David and Stacy Phillips