Benjamin is 3 years old.<\/p>\n\n\n\n
But his story started long before he was born.<\/p>\n\n\n\n
During my pregnancy, I was followed closely by both my OB and a maternal fetal specialist. I was told that Benjamin had a dilated left kidney, and we would follow up with an ultrasound after birth. At 30 weeks, my amniotic fluid dropped, and I did everything I could\u2014I drank a gallon of water a day to keep things stable.<\/p>\n\n\n\n
It worked\u2026 until it didn\u2019t.<\/p>\n\n\n\n
At 36 weeks, I was admitted to the hospital for IV fluids and close monitoring. Then at 37 weeks, my fluid dropped again, and I was induced. Fifteen hours later, I met my perfect baby boy\u20147 pounds, 1 ounce.<\/p>\n\n\n\n
My miracle.<\/p>\n\n\n\n
But shortly after birth, his weight dropped to 6 pounds, 5 ounces. Like any new mom, all I wanted to do was feed him and help him grow. We went to weekly weight checks, but he only gained a few ounces at a time.<\/p>\n\n\n\n
At the same time, I was quietly battling postpartum depression and anxiety.<\/p>\n\n\n\n
At two weeks old, Benjamin had his first kidney ultrasound.<\/p>\n\n\n\n
That\u2019s when everything changed.<\/p>\n\n\n\n
He was diagnosed with bilateral cysts and echogenic kidneys. I immediately started researching\u2014trying to understand everything I could. We met with a nephrologist, ran labs, and when those results came back, something didn\u2019t feel right.<\/p>\n\n\n\n
I messaged the doctor and asked them to call me as soon as possible.<\/p>\n\n\n\n
Not long after, we were back in the hospital.<\/p>\n\n\n\n
At just 3 weeks old, in May 2023, Benjamin was admitted to Greenville Memorial. He received IV fluids, underwent a cystoscopy to evaluate his bladder, and had a G-tube placed so he could receive high-volume renal formula and be weaned off IV fluids.<\/p>\n\n\n\n
He also had a nephrostomy tube placed to help his left kidney drain.<\/p>\n\n\n\n
Genetic testing gave us more answers\u2014and more questions.<\/p>\n\n\n\n
Benjamin and his dad both carry an HNF1B deletion, also known as 17q12 microdeletion syndrome. It\u2019s incredibly rare and associated with renal cysts and diabetes syndrome.<\/p>\n\n\n\n
Since then, we\u2019ve continued this journey one step at a time.<\/p>\n\n\n\n
Now, Benjamin is being seen by a transplant specialist in Charlotte as we begin preparing for a kidney transplant. His kidneys are still functioning, and he has not needed dialysis\u2014something we are so grateful for.<\/p>\n\n\n\n
He is currently active on the deceased donor transplant list, and we are also searching and praying for a living donor.<\/p>\n\n\n\n
Through it all, Benjamin continues to be our sweet, strong, miracle baby boy.<\/p>\n\n\n\n
This blog is where I will share his journey\u2014the highs, the lows, and everything in between.<\/p>\n\n\n\n
And above all, we hold onto faith, hope, and the belief that his story is far from over.<\/p>\n\n\n\n
Please keep our precious boy in your prayers.<\/p>\n\n\n\n
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Benjamin is 3 years old. But his story started long before he was born. During my pregnancy, I was followed closely by both my OB and a maternal fetal specialist. I was told that Benjamin had a dilated left kidney, and we would follow up with an ultrasound after birth. At 30 weeks, my amniotic […]<\/p>\n","protected":false},"author":1995,"featured_media":0,"comment_status":"open","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"_acf_changed":false,"footnotes":""},"class_list":["post-86","post","type-post","status-publish","format-standard","hentry"],"acf":[],"yoast_head":"\n