Our high risk pregnancy // STAGE 5 KIDNEY FAILURE // Sully's Journey: Part 1
Vložit
- čas přidán 30. 11. 2023
- At our 20 week anatomy scan, we received news that our son had a rare birth defect called "posterior urethral valves," or PUV. We were given a 50 percent chance of ever meeting him, and our pregnancy was classified as a high risk pregnancy moving forward. We were also warned that if Sully survived until birth, his quality of life would suffer and he would deal with chronic illness. Little did we know our beautiful son Sullivan would have a severe case of PUV that would result in stage 5 kidney disease (kidney failure), dialysis and a transplant all in infancy.
We were a bit naive to the world of chronic illness, and complicated pregnancies prior to this. We even had a road-trip planned as a "baby moon" of sorts on the day of the scan. We share about this, our wonderful community and more in today's video--all about the day we learned of Sully's diagnosis.
Through the rest of our high-risk pregnancy we met with several OB providers and were monitored every other week through repeat ultrasounds to measure Sully's amniotic fluid, the size and tissue of his kidneys, bladder, ureters and urethra, and to check on his overall growth.
We are so thankful to be on the other side of this pregnancy journey, and all of the emotions and fear that came with it. We hope Sully's story can inspire those in similar situations, and give hope!
Wow. I’m so happy your boy survived.
My boy vincent had the same thing. They told me to terminate. I didn’t, but we found a dr that would do the shunt and the amnio infusion. Sadly Vincent died from the shunt placement. They told me he wouldn’t survive after birth and I had friends that I had made where their boys didn’t survive with no intervention. So your boy is a true true miracle. ❤️❤️
My son was born w 1 functioning kidney. At 3 months old he had to have the other removed. The bad 1 was so huge. It was twisted and looped. Poor guy couldn't be layed on his tummy for tummy time bc it hurt him so bad.
Thank God the surgery was totally successful. He's 24 and very healthy. I've taught him his whole life about hydration, avoiding alcohol and eating right. He's bot perfect but he's done well.
BTW...I couldn't have gone through it w/o God either.
Excellent education and a beautiful story told! Praying daily for Sully 💕
Thank you Janine! Your prayers mean the world to us ❤️
I love this video! Good job explaining things. I hope your story can help other families that are dealing with similar situations
Thank you so much! That is absolutely our hope ❤️
You guys are so brave and I know that you guys can get through this, I'm praying for sully. Love you Billy, love you Tayler, love you sully. ❤
Thank you so much! We LOVE you!!
Love you guys and so glad you are sharing this story..
We love you!! Thanks for following it, it’s our privilege to share ❤️
I can’t believe you read all that on an email? Are effing kidding? What doctor does not pick up a phone and tell you personally or the technician! I am so upset!!!
❤❤❤
Idk what exactly you ppl are talking but I'm asking, how can I pray for your family? Especially for Sully, will he live long if any transplant takes place?