Because Someone Asked/Nicholas's Story

Someone asked me why I thought Nicholas might have problems toilet training. The simple answer is that Nicholas was born with kidney and bladder problems. He might not have the same full bladder sensations that others have.

Here is the FULL story:

I had just had an ultrasound at 22 weeks pregnant and I was changing from my OB/GYN to a midwife. At my very first midwife appointment, she did the normal stuff like monitoring the baby and letting me hear the heartbeat. When I got up, she said to not worry too much but there was something about the baby that was found on the ultrasound. She handed me the report and I read that my male baby had left side hydronephrosis. Essentially too much fluid in his left kidney.

I was horrified. I thought that I had done something wrong. I had caused this. The midwife assured me that this wasn't the case but she recommended that I have the baby in Edmonton rather than at our small town hospital...Just in case.

The rest of my pregnancy followed all the "rules" except that I had to have Bio Physical Profiles (more intensive ultrasounds) every 4 weeks to monitor the baby and his kidney. In the mean time, I met with nephrologists (kidney specialists) and our pediatrician to discuss what was coming.

On September 7, 2004, Nicholas Arthur Lee was delivered. He did great immediately after the delivery and promptly voided his bladder but then gave us a scare and wouldn't keep his colour. The NICU respiratory team came in to monitor him for about an hour but he perked up so they left him with me.

Within his first month of life, Nicholas was poked, prodded, and scanned to see the full impact of his hydronephrosis. He was diagnosed with Class 5 Urine Reflux (the worst level) and he had an obstruction of some sort in his ureter that couldn't be fully diagnosed without invasive surgery. He was put on a daily prophylactic (preventative) dose of antibiotics to try and prevent bladder and kidney infections.

He was good until he was about 2 months old. He had his first breakthrough infection and was admitted for IV antibiotics. He also went through more scans to monitor his condition. He continued having renal scans at 6 months and 1 year to keep a close eye on his kidney. They were looking for any signs of the kidney failing or reducing in function.

At the one year scan, the urologist (Pee Pee doctor LOL) said that his kidney function was reducing and that they'd schedule him for surgery. He had hoped to hold off on surgery until he was between 2 and 5 years old but that was not to be.

Over the course of his first 18 months, he was having a new breakthrough infection about every 6 weeks.

His surgery date was within days of his 18 month birthday. He had a pyeloplasty and left uretic re-implant. Basically, they cut out the excess ureter with the blockage, some stretched out kidney tissue and moved the ureter at the bladder to a better position so it would "close off" when the bladder was full. He was in the hospital for 4-5 days hooked up to a catheter, an IV and an epidural.

This photo was taken about 2 weeks after the surgery and while he was getting antibiotics for a staph infection in the incisions. The larger incision opened up at the surface but the under lying tissues were well stitched and remained closed. The lower incision was from the drain they put in right after surgery. He has another incision along the "bikini line". It runs from the body centre line almost to his left hip. Remember that this is on the body of a LARGE 18 month old. He was 31 lbs when he went into surgery and looked like he was 2 or 3 years old.

He has gone back for renal scans every 6 months to monitor the situation. They have shown that the kidney is stable and is neither improving nor deteriorating. If the next scan in the fall is the same, then they will stretch out the scans to once a year.

The scars have faded to skin tone and he is an active boy. He'll be starting playschool in September when he turns 3 years old. He loves his big brother and follows him everywhere. Whatever Nathan does, Nicholas has to follow suit. We have some concerns for later in life when he wants to join sport teams but the doctors have assured us that he will be able to but he'll need a more rigid kidney protector.

Nicholas looks healthy and people that don't know about his hard start would never imagine that there was any thing wrong. It's very deceiving. Soon he'll be old enough to start to watch out for himself but I still think he'll be an adrenalin junkie like his big brother and he'll play hard at everything he does. I have faith.