When I got to the NICU the surgeon was assessing my intestines and was placing them in a silo – a tube that holds them above my body to help with blood perfusion and to slowly place them inside my body over a few days. But when he let go, they all just went in my abdominal cavity, so I didn’t have to have a silo.
My first night in the NICU my blood pressure and oxygen saturation’s dropped, so they had to intubate me and start dopamine – a medication to keep my blood pressure at a safe level.
I had a PICC line placed so I could get nutrition via TPN. An art line to closely monitor my blood pressure, heart rate, and to obtain labs. An Anderson tube to decompress my stomach, a ventilator to help me breathe, a Foley catheter to measure my urine output, and multiple IVs.
I had test, after test, after test. Once they determined the obstruction was in my urethra, the urologists thought the best plan was to surgically place a vesicostomy. A direct opening from my bladder to my abdomen in order for my urine to drain freely.
When I was 5 days old, I went to the OR. They closed my abdominal wall, while also placing a vesicostomy.
Surgery went well. Now it was time to heal and grow. My mom and dad got to hold me for the first time when I was 10 days old. The doctors continued to watch my kidney function to see if it would get better since urine was no longer backing up. However it never improved. There had been too much damage, and the kidneys were never able to fully develop.
Once my stomach stopped producing an excess amount of bile, I had bowel sounds and was passing gas/pooped, they placed an OG (oral gastric) tube in my mouth to start feeding me my moms hard pumped breastmilk. Once my oxygen needs decreased from CPAP to nasal cannula, they were able to place an NG (nasal gastric) tube in my nose vs OG in my mouth. (Supposedly NG are harder to pull out than OG – but I’m a professional tube pulled outer – doesn’t matter where it’s at)
Once I started showing cues that I was interested in eating, speech therapy taught my mom and dad how to feed me. I was 25 days old the first time I ate from a bottle.

I had a high volume goal I needed to eat in order to keep my kidneys hydrated. 180ml/kg/day. (So if I was 3kg I needed 540mls/day to keep my kidneys sufficiently hydrated) With CKD you have a lot of nausea and not much of an appetite. In order to discharge from the NICU you have to eat sufficient enough calories/adlib feedings. But with my high fluid goals they decided I could discharge home with my NG tube – because I was never going to meet those goals adlib.
After 38 days in the NICU, I was able to discharge home.