Today we are sharing our (very rare) birth story of our son Sullivan. Sully was diagnosed with a birth defect at our twenty week anatomy scan, called Posterior Urethral Valves. He was given a 50/50 chance at surviving pregnancy. Throughout the remainder of our high-risk pregnancy, we were closely monitored for drops in amniotic fluid levels (oligohydramnios), bladder/kidney damage and lung development.
At 34 weeks and 2 days our precious boy made his way into the world via an emergency c-section, due to all of his amniotic fluid being gone. He was immediately admitted to the NICU, where a catheter was placed and he received CPAP air support for 24 hours. Our first hospital stay was marked by difficulties, and lack of specialist support. We needed the eyes of a Urologist and Nephrologist on him, daily. Because of the lack of specialization, we ultimately made the decision to have Sullivan transferred to our local children's hospital, Seattle Children's Hospital.
They were AMAZING. We arrived and met with about 10 doctors in our first day--including the head of their kidney (nephrology) department. We were given assurance that there was hope for Sully. It became clear fairly quickly that he did have extensive kidney damage, and would need a surgery urgently to help him be able to urinate. The surgery was scheduled and we waited in the hospital for that day to come. There is truly nothing like watching your two-week old be wheeled into an operating room. His surgery was successful and after almost a month in the hospital we were sent home! 9 months later we began dialysis and are now eagerly awaiting his kidney transplant once he is big enough for it!
We hope sharing our wild story from diagnosis, to NICU, to surgery and beyond inspires other families in similar boats, and sheds light on a part of life that often goes unseen!
Thank you guys for following our story!
11 фев 2024
