My Broken Baby Girl :(

People tell you that having a child is like having your heart, walking around, outside of your body. You can only protect it so much…I never really understood this concept until I had children of my own. Now, it makes perfect sense and I get it…I truly get it.

 

My little baby girl has a broken body and is going to need MORE surgery on one of her kidneys (this will make 4 major kidney surgeries in her short little lifetime, not to mention the eye surgery that she had last year).

You can read up on her specific renal conditions from some of my previous posts: (this is not a result of prematurity, but a genetic/hereditary condition---unfortunately, we have lots of kidney issues in my family)

• http://thelifeofsuz.blogspot.com/2008/03/my-sweet-baby-girlies.html
• http://thelifeofsuz.blogspot.com/2008/03/rough-week.html
• http://thelifeofsuz.blogspot.com/2009/06/savannah-her-kidneys-and-upcoming.html
• http://thelifeofsuz.blogspot.com/2009_06_01_archive.html
• http://thelifeofsuz.blogspot.com/2009/08/120-years-of-life-to-celebrate.html

 

This past Monday, Momma and Daddy spent an entire day at Cook Children’s Hospital with our baby girl, Savannah, as she went through another round of fierce kidney testing:

1. Renal Scan with Radioactive Dye & Lasix Wash Out
2. a VCUG.

 

 

Savi has had so many of these tests, that I was worried about how she would react- especially now that she is much older.

 

 

She was amazing while we waited in the preop area. She was hilarious and would talk with all the nurses and anesthesiologists like a big girl. (Something she could never do before).

Sav being silly (I love this picture of her little booty)

 

 

I thought, maybe…just maybe, this round of testing would go better/easier for the little darling, especially now that we could explain what was going to happen to her.

 

 

yah…not so much. They sedated her to put in her urinary catheter and IV that she needed to perform the tests. Here she is waking up from the anesthesia…happy as a little lark after getting her first of THREE popsicles.

 

 

“Wait a sec…Mama, where are we going? Aren’t we finished? I want to go home!” (No, baby girl, its time for your tests…poor thang…ugh)

 

 

I realized that although Sav has had these tests a number of times, I have never taken any pictures of what they look like, so I thought I would sneak in a couple of snapshots. I waited until after she settled down, of course…just imagine a terrified, screaming and thrashing little 3 year old girl who doesn’t understand why she is being strapped down to a huge, scary machine with bean bags and belts. (The screams of “Mama, help me!!!” Never get easier and I did my fair share of crying when she couldn’t see me). Once they get her positioned and ready, the entire procedure takes exactly 60 minutes.

 

 

For the first 30 minutes, they fill her body with radioactive dye. Here you can see the black areas: her kidneys with the contrast solution. The left side is her left kidney, you can see how much bigger it is than the right. Not good.

 

 

Next, they give her Lasix (a diuretic drug that flushes out her system) and for the last 30 minutes, they monitor how the kidneys work to rid the body of the dye. As you can see here, the left kidney is not functioning properly. Not good.

 

 

So, after this fun-filled hour during the renal scan…we had to take Savannah to yet another radiology room for her VCUG. You can imagine how excited she was at this point. With the VCUG, they take a series of abdominal x-rays. Look at the end of this table and you can see a large bottle of dye contrast. They fill her bladder with the entire bottle (or as much as her little bladder can take). OUCH.

 

 

This is her abdominal x-ray before we start. Looks normal.

Inserting dye through her catheter and filling up her bladder (the bottom white part is her bladder filled with dye)

Now her bladder is completely distended with dye and it has backed up into her left kidney (up at the top left of the film). Not normal.

Here is another view of just how distended her left kidney is at the top. It is not a normal-shaped, smooth kidney bean looking kidney---but it bulges out and is not functioning properly. The good news is that her right kidney is working well and looks great!

This is the last film they take…it is at the very end, after she has voided. It is to see how much residual urine (with dye) is left in the kidneys. As you can see, it is a significant amount.

 

 

Obviously, Savannah did not like having her bladder over-distended with fluid which backed up into her kidney. Can you imagine how much that hurt? Especially after the radiology tech almost completely pulled out her urinary catheter (which was fully inflated) during the renal scan. All of a sudden Sav started SCREAMING when the bed was being moved, and Joe had to grab her foley bag that was caught at the end of the machine. OUCH! Sav cried every time she had to void for the rest of the day, poor baby. No tellin’ what kind of damage that could have done to her urethra.

 

But the instant the tests were over and we got her down off of that x-ray table, she immediately started smiling and laughing again. The resilience of children is truly amazing. She wanted her picture taken in front of the beautiful Christmas tree in the Cook’s foyer.

 

 

A nice passerby asked if she could take our picture together as a family! So sweet. (FYI: Mama needs to shed her “winter layer”-LOL! I’ve apparently got a little extra to love on the ‘ole body. Hittin’ that gym ASAP! We’ve got a cruise coming up!!! More on that later!)

 

 

Princess Savi on her throne

 

 

One last picture with Dad in front of the fountains with her goodies that they gave her (a stuffed doggie and a winter cap).

 

 

After spending an exhausting day at the hospital (from 8:30am to 2pm), we took Sav out to eat at one of her favorite restaurants (BJ’s)…yes, in her PJ’s! She loved having a day with Mommy and Daddy all to herself. Sweet baby girl. I just hate this for her and wish that I could take it all away.

 

Savannah had terrible nightmares that night and woke up screaming several times. We tried to get her to calm down and sleep with us, but it wasn’t working. Finally, Joe went upstairs and slept right beside her on the floor of the kids’ room (so I could get some sleep before work). What a sweet, sweet Daddy. Love him so much. Other than that, you would have NO IDEA whatsoever that her poor little body is not working well.

 

Savannah Leigh Steece absolutely amazes me. Such a strong little girl.

 

Being in a children’s hospital, especially around the holidays, really makes my heart go out to the families that are going through unimaginable illness and scary times. There are so many precious kiddos out there who are suffering and spending their holidays hooked up to monitors, going through treatments, etc. Remember to give thanks for the blessings in your life and the health of your loved ones, get on your knees and pray for those who are less fortunate…and if you haven’t already, get involved with your local charities and GIVE BACK in some way or another.

You have been blessed…now go BE a blessing. 

 

I’m not working for the rest of the week, so I’ll get on top of our Christmas holiday pictures and posts. We have had a magical (albeit stressful & exhausting) Christmas and I cannot wait to share it with you all.

 

Please, please keep our baby girl in your prayers and thoughts. We will meet with her urologist/surgeon in a couple of weeks to determine how we will proceed.

Hugs,