Learning to Catheterize a Toddler Girl

It's 2:45 a.m.

A knock sounds on our bedroom door followed by a pained little voice, "Ouchy, Mommy, Ouchy. Ouchy!"

It's a familiar sound that has been in the middle of the night far too often lately, but I usually hear it over the baby monitor. I pop awake and suddenly feel guilty as I realize I forgot to turn on the monitor last night.

Though our girls are almost 6 years old and 2 1/2, we still use a baby monitor to listen to them every night. We listen primarily for a moan or that cry of "Ouchy" from our oldest daughter Adria.

It means that her bladder is full and she needs to empty it, but unlike most people, Adria does not have the ability to push urine out of her body.

Instead, she feels a painful build up of pressure that can lead her to the point of screaming and scratching at her lower abdomen if not "taken care of" quickly. The way we take care of her is by Intermittent Catheterization (also known as CIC - clean intermittent catheterization). This is fairly common in children born with myelomeningocele spina bifida, since the lower spinal cord carries the nerves that control bowel and bladder function. For Adria, some of these nerves in the lower spine never formed properly.

Though she has many unique challenges,
Adria remains a happy little girl enjoying life and rides at Funland!

Today, I wanted to share with you more about Catheterization because for many people it's a mysterious thing, but for us it's become as normal as changing a baby's diaper.

Years before we Learned to Potty-Train a Toddler Girl, as I shared earlier this month, we learned to catheterize a toddler girl. It's completely different, frightening and minorly horrifying at first, but we did learn and get used to it.

I hope you will take time to read and learn more about this sensitive and very personal topic. It's not exactly easy to write about and tasteful, blog-worthy graphics are hard to come by (try a Google search for female catheterization...)

The Start of Adria's Catheterization Program

We first started Adria on a regular catheterization program just after her 2nd birthday in fall 2010. Early that year we had made the major move to Indianapolis, and all that summer our sweet baby was plagued with repeated UTIs (urinary tract infection). She would become fevered and sluggish and her urine had a foul odor. I felt like a horrible mom having it happen so often.

Fortunately, we were in good hands to get support. Riley Hospital for Children is a nationally ranked medical center in the heart of the IUPUI campus (Indiana University/Purdue University Indianapolis), with a pediatric urology program that ranks #2 in the country, according to U.S. News & World Report.

During our two year stay in Indiana, we lived just 20 min. from this hospital and less than 10 minutes from a southern campus where we could meet with Dr. Martin Kaefer. He is the backbone behind the strong reputation of this program, and the doctor who first recommended a regular catheterization program for Adria. We felt fortunate to have his expertise to help us through this big adjustment.

He conducted a test that Adria still receives at least once a year called a Urodynamics Study. She lies on a hospital bed, while they insert a catheter into her urethra and use it to insert fluid in order to test her bladder pressure. She handled it surprisingly well, but the result showed high pressure in her bladder and that she was not emptying well. Apparently, her wet diapers were just the overflow urine coming out and not her truly peeing like normal.

Now that we've had a little girl who does pee and has filled many diapers to overflowing, the difference between our two girls is very obvious in that aspect.

When Dr. Kaefer recommended that we start catheterizing, he said it was important because without it there was a strong likelihood that Adria would require bladder enlargement surgery by age 7 or 8. Thankfully, the program seems to be working because she had a Urodynamics study again in June and her bladder looked good.

But let me tell you, it's no joke to go to a doctor appointment expecting to get another prescription for an antibiotic and instead leave with bags full of supplies that we would need for intermittent catheterizing of our toddler. Every fours should work, he said. We should not need to at night.

We had been shown how to catheterize her as a newborn, but they said we may not need to, so it's not something we were comfortable doing. They gave us some advice, but honestly we just had to go home and figure it out.

We would have to insert this narrow tube into our two year old's "pee-pee", so that her urine could come out...

The Learning Process

To be honest, the catheterizing was terrible at first.

The catheter looks like a narrow tube about 8-10 inches long with a rounded tip that has holes in it and a rubber area on the other end to hold it with. It MUST be clean, in fact most doctors recommend just one use and then toss it.

Adria was very agitated by the process at first. She would cry and act very uncomfortable, which made me cry and be very uncomfortable...

We put a lubrication gel on the catheter before inserting it and allowing the urine to empty into a cup or just her diaper. As we continued to struggle with this, a medical company that supplies catheters introduced us to a fairly new product at the time - Hydrophilic Catheters. (To learn more Click HERE.)

These catheters were prelubricated with a water packet. For us and our little Girl, these catheters made all the difference! We've used many different styles over the last four years, but they are always Hydrophilic catheters.

How to Catheterize a Girl

Four years later, we are experts at catheterizing our daughter and may even begin teaching her to do it herself soon. (I'm totally nervous about that too...)

During the day, we try to not wait for her to have "Ouchies" before we catheterize her. We have a schedule to catheterize her generally four times a day around 8 a.m., 12 noon, 4:30 p.m. and 8:30 p.m.

Over the past month, Adria has started to require a fifth catheterization sometime in the night or very early morning almost every night. We have talked with her urologist about this and are adjusting some medications to see if that helps.

So here's what happens every time we catheterize our little girl:

1. Wash our hands with warm, soapy water and/or put on gloves from her catheter kit.
2. Lie her on changing table (or bed if needed) and open her diaper. 

   

   Adria on her changing table - it's really a computer desk but works well for us.

3. Use a baby wipe to clean her private area.
4. Open the SpeediCath packet and remove catheter, being sure to only touch the colored rubber end and not allow the tube to touch ANYTHING else. 
   
   
   

   

   SpeediCath - our favorite type of catheter 

5. Cover the rubber end with a small bag for collecting the urine.
6. Carefully insert the catheter into her urethra (hopefully, we all know that this is the first of a female's three holes...just making sure) and push several inches in to reach her bladder. 

   

   A little Health class on the female urinary system.

7. Immediately urine flows through the catheter into the collection bag.
8. Typically, about 200 ml of urine empties into the bag before it stops a few minutes later.

   

   Yep...that's a bag of pee... forgive me

9. Pull out catheter and trash all supplies.
10. Put a new diaper/Pull-up on Adria and she's ready to go!

This is our every day, four or five times a day experience with our princess. Once you get used to it, it's not so bad and I can even do it with low light at night, so I don't wake up her little sister.

However, it is not pleasant to need to collect our child's urine. It just is what's necessary. And that is okay. She's more than worth it.

Lately, it's been a little tough on Adria as she wants to wear pretty panties like her little 2 year old sister now does. Unfortunately, we are still having pretty serious issues with her bowel that require she still wear diapers. We are actively pursuing options to improve that.

I hope that this has been helpful and informative...and not too weird. Just realize that sometimes in life, you end up doing things you never even knew about or conceived that you would be able to do. We have no medical training or expertise. We are simply parents of a daughter that needs us to be experts on her needs.