Wednesday, December 29, 2010

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.

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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)

 

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.

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

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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)

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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.

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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.

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“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)

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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.

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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.renal scan 1

 

 

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.

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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.

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

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

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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.

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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!

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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.

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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.

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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!)

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Princess Savi on her throneIMG_1225

 

 

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

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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.

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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,

suz signature

47 comments:

Lulu said...

Seeing "my broken baby girl" in the address bar as it was loading nearly made me cry :( I wish she wasn't poorly again...so glad she is blessed with such a sunny disposition & such a GORGEOUS smile. Here's praying that the nightmares pass soon in the safe company of SuperDad on her floor!!

Tamara said...

Poor Sav, what a lil' trooper you have on your hands! I hate that she went through all of this (and will continue to go through more) but I love that immediately before and after she's all smiles. I will keep her in my T&P.

On a lighter note I'm really curious about your cruise because I have one coming up too!

Allison said...

What a big little girl Sav is!! She is precious and strong. I will pray for her health and healing and for the family as well!

LP said...

So sad to hear such a sweet young child has to go through so much! But she seems to be very very brave! Much more than I would have been. I pray she can be healed soon.

Shannon said...

Poor Sav! I am an x-ray tech, and those VCUGs are no fun, especially with reflux! She looks like she handled it well, but I know it is still heartbreaking.

holly said...

many thoughts and prayers coming your way from atlanta. xoxo.

Kat said...

Aw Sav! I hope everything goes well and we'll be thinking about her.

Beth said...

one of my quads, Izzie, was born with kidney issues. It is safe to say that we hate the VCUG. Watching your poor, scared child in pain is horrible. Izzie had surgery in 6/09 and we are hoping to never have another VCUG.

The upside is that I am convinced that to help us poor parents, they make those hospital gowns look so stinkin cute on the little kids (love the pic with Savannah's little booty hanging out!)

I will keep sweet little Savannah in my prayers and pray that this surgery can end her kidney troubles. I also pray for you and Joe. I know that I would have three surgeries to avoid any of my kids having one.

Susan said...

Makes me tear up reading your post. We just went through a VCUG with our 3 year old daughter and it was the hardest thing my husband and I have had to do. I felt helpless when she was crying for me. My thoughts and prayers are with you and your family. Susan from Idaho

Ally in Wonderland said...

Awww, Sav and I have the exact same issues!! Only mine weren't found until I was 7, so half of my left kidney is dead. I'm sending lots of prayers for healthy Sav!!

Penny said...

I'm sorry for her, and you guys, to be going through all of this. I feel for you having to hear her beg for you. My youngest had a blood disorder (ITP) and was hospitalized many times for IV's from 15 months (including a bone marrow biopsy)to 3 1/2. Even at 15 months, she was verbally ahead for her age. When they had trouble getting the IV in and took 5 tries, we had to hear her crying plaintively, "Momma... Daddy...", but it was when she started calling to "Barney" that it broke my heart that we were helpless to "fix it" for her. Bless your hearts and I hope and pray the doctors can figure out soon where to go from here. God bless.

Charity Donovan said...

Ugggghhhhh tears! Poor sweet Sav! Breaks my heart!!! Praying my heart out that this is the last surgery she has to go through! Hugs momma....such a tough tough day! LOVE YOU!!!!

*Lissa* said...

So sorry you and your family are going through this. I hope it will all turn out in the best way possible!

This is how we have been giving back during the holidays (project by my 7-year-old!): http://www.whooosthatgirl.com/2010/12/bestgiftever.html

Anonymous said...

De-lurking to let you know that I'm praying for your precious girl!
www.caringbridge.org/oh/kara

Gen McNulty said...

Savi- Freaking breaking Auntie Gen's heart sweet girl, breaking my heart. I love you so much. You are so brave and I am so proud of you. Your Cali girls and dudes send hugs and love sweet baby.

Soooz- I love you with all my heart and miss you more than words. Wish I could hug you right this second. UGH I HATE this distance!!!!!!!!!!!!!!!

xo
Gen

Michele said...

Keeping you guys in my thoughts.

Poor little thing. She is incredibly strong and brave. That smile of hers lights up a room!

A Southern Love said...

Savannah is at the top of my prayer list and she is still on the prayer request link on our blog too! She's been on my heart from the first time I came across your blog! Praying the Lord will give the Dr's the wisdom to know how to treat her and that He will continue to strengthen her little body! Praying for her Mommy and Daddy too! :)

Nancy said...

Sending you all love, and wishes for healed kidneys for little Sav. She is such a beautiful little lady -- just two weeks younger than my twin baby girls. You are all so strong to manage these difficult tests and treatments!

Molly said...

What a strong and brave little girl! Rip your heart out to see her be scared and have to go through more. Lifted her up in prayer..

Alissa said...

Suzanne, So sorry to read about Savannah's kidney issues! Poor little thing, having to endure all those tests. You are all in my thoughts during this very tough time. Keep up your positive attitude!

Krys said...

Keeping Savannah in my thoughts and prayers! What a smile on that girl :)

Gayle said...

My heart goes out to you and I will keep Sav in my prayers. If you need a kidney, you must let us all know - I am sure one of us out here will be a match.....all the best to your awesome family!

The Townsend's said...

Awe, poor little Sav. :( I'll be praying for her and hope everything goes smoothly! I've had kidney problems recently and know that it is NO fun! Such a strong little girl.

Me said...

I am so sorry to hear that she will be having another surgery. My heart just breaks. I will definitely be adding her and the rest of your family to my prayer list.
She is such an amazing little girl. :)

Kaci said...

Poor little girl! I hope you get the answers you are looking for! She is just gorgeous, as are you! XOXO You're in my thoughts!

Jennifer said...

Awww sweet suz. I'm so sorry ya'll got this kind of news about Sav. I have been praying for you guys. Please let us know what the treatment plan will be. By the way, your whole family IS a blessing to so many that know you!

Jennie said...

Oh no! We'll be praying for her (and you guys too)! She's such a brave girl!

Juli E. said...

I will be praying for your sweet girl, her docs, and her momma and daddy! I am so sorry you all have to go through this.

Jan said...

So sad, you brought me right back to that awful Mama feeling when one of my triplets went through some health issues as a little guy. It hurts. We'll be praying for you all. I hope this is just a small bump in the road.

Jan

Steph said...

Sorry that you (and most notably Sav) are going through this. 2 questions for you.

first, you mention eye surgery. I must admit, I had followed your blog a few years ago when your kids were helmeted b/c my little boy was helmeted but I somehow lost touch. So I missed the eye surgery. Did she have strabismus surgery? My daughter recently had strabismus surgery. It went really well and she's not crossing nearly as much but still crossing a tiny bit so we're back to patching. Just wondering if y'all still patch or if surgery fixed things.

Also, are those her VCUG pictures or just random internet ones. I ask b/c in the pictures the reflux is in the right kidney (xrays are read backwards plus that "R" marker helps). Obviously you know your child's condition, so I'm not second guessing you at all. Just confused.

Thinking positive thoughts for you daughter (and strength for momma too).

Bryan and Sarah said...

I will be praying for Savannah. My son had a VCUG at six weeks old. He was peeing out of his belly button, and they found out he had a patent urachus. All better now though. I can't imagine him having to continue to get those tests. I pray that they will be able to fix her problem, so that she will not have to go through this anymore.

QuatroMama said...

Ugh. I can't come up with words, Suz. I hate that you all have to endure this (AGAIN) and don't understand it, but I know there's a reason beyond my comprehension, and this is bound to make Sav one tough cookie. She's got so much personality that just shines through these pictures. Adore her! Praying that this grows your faith and love for one another even more deeply.
I love you more than words.

QuatroMama said...

PS Just for the record, you look AWESOME, Suz. I see thin. Seriously...what are you talking about, Woman? Joe's one lucky Dude.

Liz said...

Oh Suzanne, my Savannah had to have a VCUG test once when she was about 2 1/2 and it nearly killed me. SUCH a traumatic test for a little one!

Karen said...

Praying for Savannah. I am praying for a miracle and that she won't have to go through another surgery!

Emma said...

Poor Savannah ... glad she's still happy and smiling! Praying for peace and healing.

Blessings,
E x

Casey's trio said...

Suz, my heart goes out to you. I'm sorry that Sav will have to endure another surgery. Praying it will be successful and end her kidney issues for good. Her gorgeous smile really is the most precious thing ever. Much love to you all!

Krissy said...

Hi Suz,
I think I commented on one of Sav's other kidney posts, but I just wanted to say that I am a 30 year old former preemie (32 weeks, 4lbs. 2 oz's) who had 3 major surgeries on my congenital kidney defect (triple ureter that didn't connect to my bladder, major reflux in my R kidney) and I can not remember any of it. Nor do I have any lingering kidney problems. I have not seen a specialist since I was four, and I really, really hope that your daughter has just as good as a future as I have!

I grew up completely terrified of anything medical (but that may have been more from having 3 sets of tubes in my ears and a tonsilectomy when I was 5 or 6.) However, I toughened up enough to become an EMT in college, to get a degree in Gerontology, and to do what it took to overcome infertility, and to carry my 6.12oz and 7.12oz. twins to 39 weeks. (And my kidneys didn't have any trouble keeping up!) I firmly believe that God has a plan and a purpose for my life, and even as a young child I just KNEW He was real and present and that He saved my life so that I could be useful to Him.

I was a spitfire, so I am told, and I believe that this particular personality trait (IE stubborness) is one of God's gifts to children that need to endure much. We are too darn ornery for it to happen any other way!

Your family, and daughter will be in my prayers. I know that my surgeries and hospitalizations were very hard on my mom. Hang in there.

~A Friend From PA

Amy said...

Sorry about the kidney surgeries. It is not fun! My daughter had 5 surgeries to repair her hydronephrosis in her left kidney. She also has hip dysplasia, which I think Savannah has too. Stressful, stressful! Good luck! It is awesome when the kidney finally functions normally. Hang in there!

Momma Chaos said...

Aww poor baby :( I can only imagine how painful that test had to be ! I have 4yr old son who has had multiple surgeries (heart related) in his young life so I can relate to the testing and spending time in the hospital :( Good luck!!

~Jodi~ said...

I really was moved by your post on sweet Sav it just made me cry! she is always so joyful and I just had no idea her little body was going through quite so much! I will definitely keep her in my prayers and you and Joe as well! I so enjoy your blog and thank you so much for sharing your life and your heart and thoughts on here! i just can't believe how fast your babies are growing up! take care!

Barbara Manatee said...

Poor Savannah!! Those scans definitely look like that's a painful issue!!! What a trooper though afterwards!!

Good luck to you all as you move towards helping fix her poor lil body!!

mom2to1 and1/2 said...

Poor sav. Breaking my heart. Keeping you and your family in my prayers.

Brandy said...

First of all your daughter is not "broken", she is a very happy and pretty little girl. We chose to take my daughter's nonfunctional L kidney out and had no problems with UTI anymore(knock on wood). They thought the L would cause her per problems than it was worth at 13% function. Good luck with whatever you guys decide to do.

The Drama Mama said...

Poor Savi!! I'm praying now for your sweet girl..she is so stinking precious! HUGS!

Fitzgerald Family said...

My daughter was born with one kidney. We didn't find out about it until she was almost 10. I had 2sonograms while pregnant and it wasn't discovered. She ended up having surgery on her only kidney at 10 to correct a minor defect. Dr. Miller at Cooks performed the surgery. He is wonderful! My family will be praying for your little girl. Blessings to all.

annalee said...

i'm so sorry she has had to go through so much! praying her sweet body heals completely and keeps up with that perfect smile! she couldn't be more adorable.

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