About this site

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I started this site for a number of reasons, the most important being as a resource for parents of children with Vesicoureteral Reflux and other bladder issues. Please check out our new kidney reflux site at www.kidneyreflux.info. I remember feeling so overwhelmed and confused when we got Lizzie’s original diagnosis of VUR. Since then I have spent hours researching her condition, and hope to pass on some of the info and links I have gathered along the way.

Our daughter Lizzie was diagnosed with Vesicoureteral Reflux when she was 6 weeks old. One afternoon her fever spiked, and we ended up spending a week at the hospital. It was discovered that she had developed a UTI which had moved into her kidneys and then spread through her body. She was a very sick little girl.

We were glad to have the diagnosis of a treatable condition. We knew that she may need to have a surgery at the age of 5 years, but until then the treatment would be daily antibiotics and routine check-ups. We had no idea that we would spend the next 11 months in and out of hospitals with constant kidney infections, and new complications. By a year old, Lizzie had 8 kidney infections, 6 hospital stays, 2 picc lines, dozens of tests, constant antibiotics, and three surgeries.

Our Lizzie is an amazing little girl, and we have been blessed with two beautiful, healthy children. Despite all of her “issues”, Lizzie is a fat happy baby. Her current diagnosis, for what its worth, is complicated. After a failed reimplant surgery, she continued to have grade 4/5 reflux, so we opted to have a urinary diversion put in place. She will have her vesicostomy for another 2 years (give or take), assuming that the deflux injection had or can stop the VUR. She also has a grossly enlarged bladder, which may be due to nerve damage in the peripheral nerves that lead to the bladder. She also has mild to moderate hydronephrosis, and a duplicated collecting system, which means she has 4 ureters, instead of 2.  So that is Lizzie in a nutshell.  For more on our story, click here.

For more medical information and explanations, you can read about Vesicoureteral Reflux in our VUR  pages. There are tons of links (still working on it) to good studies and articles in our VUR resources page.

20 Comments

  1. Tammi Brown said,

    Wendi~
    This is a very well designed, thoughtout website on Lizzie’s condition. I commend you in all of this. You have given a lot of vital information to others who could be going through this with their kids or will go through this. I think what you have done is awesome and shows how much you love your family and your willingness to help others get the info they need on this. Keep it up, it is worth it!!!
    We love you and your family and pray for you all,
    Love, the Browns

  2. Jelita said,

    Thank you for sharing your story with other parents of children with Vesicoureteral Reflux.Our baby daughter(8 weeks old) was diagnosed a week ago with the same condition as your daughter lizzie. She is born with 4 ureters with reflux and has developed UTI and both kidneys are enlarged. She is now on antibiotic and probiotics daily and has been in and out of hospital.
    We are now waiting to have a MCU to find out the grade of her reflux.
    i did not know much about our daughter’s condition till i found your site. You have given me hope and strength and i look forward to share our daughter’s future outcome with you.

  3. Zafar Abbasi said,

    I really appreciate your effort in making this website for sharing the knowledge you collect during your courageous journey with Lizzie.
    My daughter (age 4), has recently been diagnosed with a bilateral grade 4 reflux. I tried to get the knowledge of the disease and your website helps me a lot in a simple and clear manner. I once again appreciate your effort for taking your time to put together your thoughts and knowledge for others to better understand the problem. May God help and bless Lizzie.

    • workjw said,

      Thank you so much, and I’m glad you have found the site helpful! Be sure and keep us updated on your daughter’s condition and how you guys are doing. If there is anything I can do, or any specific info/studies that you are looking for, let me know. I still have a lot of work to do on my links page. Take care!

  4. Carla Franzin said,

    I keep forgetting to actually comment on your site. What a wonderful website and I love the way you’ve presented Lizzie’s journey! Very informative and inspirational to all those VUR sufferers out there (like my son….), particularly the more complicated cases that don’t simply resolve over time with preventative measures! Take care…

  5. Jessica Alexander said,

    My daughter is my beautiful miracle. She and my son are my life. My daughter has stage 5 kidney reflux. At age 3 months she had her first UTI. She was waiting to see the specialist and had a breakthrough. Then another on bactrim. Now at only age 5 months she is going to have the surgery. I don’t know how to make it to the next day. I know things could be worse, however she is my angel. I just pray we are making the right choice and this helps. Your daughter is in my prayers as are you.

    • workjw said,

      Hi Jessica! Thank you for sharing your daughter’s story with us. Lizzie had her surgery at 5 months as well, and it was so hard for us as parents. You never expect your babies to need surgery anytime, but especially when they are so little. Just keep in mind that you are doing what you can to keep your little one healthy, and this surgery has such a high success rate that I’m sure she will do well. Please keep us posted on how you guys are doing. You will be in our thoughts and prayers!

  6. Lindsay said,

    Wow Wendi! I am so glad you sent me the link for Lizzi’s site! You did an amazing job with this and I know it will be extremely helpful to other families. I have a much better understanding of what you have been dealing with and what Lizzie is going through. You are an amazingly strong women! Your children are so blessed to have you as you are to have them as well! Thank you for sharing your story with me! I love you and will always be here for you! Lizzie is always in my prayers!

    ~Lindsay 🙂

  7. Christy said,

    Amazing story! Prayers to you and your little girl. My munchkin has similar problems. Feel free to email me.

  8. Lindsay Q. said,

    Thank you for sharing your story with us. I am just now in the beginning stages of finding what is going on with my daughter. She is scheduled to have her VCUG on Friday. I don’t know much about his yet, but am frusterated that she had a breakthrough on her preventative medicine two weeks after going on it. Thanks again for having this website. It has been helpful to me to see that I am not the only one going through this.

    • workjw said,

      Hi Lindsay! We will be thinking of you guys on Friday. Breakthrough infections can be so frustrating. I hope your little one is feeling better, and I hope you guys are able to find some answers soon. Please keep us updated, and feel free to ask anything. We may not have all the answers, but there are some great parents that read and post here.

      Take care!

  9. Sarah said,

    Hello…
    Thanks so much for making this website…My daughter is 4 1/2 years old and her reflux was diagnosed at 4 months of age (when she got her first kidney infection). She has had a total of three kidney infections now…the scariest being this past week when I found her unconscious having a febral seizure non-responsive for 15 LONG minutes. We are thinking that we are going to go ahead with the reimplantation surgery bc if she is off her macrodantin for 3 days she gets a terrible infection. I was wondeirng if a/o could email me and share expcs of reimplantation surgery, or recommend top pediatric urologists in new york?? Also did anyone consult with nephrologist also? I am concerned bc after this kidney infection (where she had to be hospitalized for 4 days on IV antiobiotics) the measurments of her kidneys have changed. Please email me with any helpful information …sarah59@aol.com
    Thanks sooo much!!

  10. MINA said,

    HELLO……..I HAVE A 5 MONTH OLD (2 MONTH OLD GESTANTIONAL AGE) PREMMIE. BABY.. MY DAUGHTER “JOURNEY” HAD A VESICOSTOMY JUST A FEW DAYS AGO, NO NEED TO WORRY SHE’S DOING FINE. HOWEVER, THE BIGGEST CHALLENGE I FACE NOW IS HOW TO KEEP THE URINE FROM LEAKING. PLEASE, COULD YOU SHARE ANY SUGGESTIONS ON HOW TO KEEP HER DRY AND HER CLOTHES PROTECTED THROUGHOUT THE DAY. ALSO KEEP IN MIND SHE IS VERY SMALL SHE’S BETWEEN NEWBORN AND STAGE ONE PAMPERS. ANYTHING WOULD BE APPRECIATED….THANK YOU

    • workjw said,

      Hi Mina! I’m glad that she is doing well, and hope she continues to do so. You might want to look at these 2 blog posts on the new site. They are both about diapering a vesicostomy.
      http://www.kidneyreflux.info/blog/2009/04/diapering-vesicostomy.html
      http://www.kidneyreflux.info/blog/2008/04/belly-bands-for-babies.html
      The second one is mostly instructions on how I made little bands for Lizzie to wear around her waist. It seems a little strange, but worked well for us when she was small. It was especially hard for us to keep her dry when she was on an IV drip. It just seemed so non-stop. Now we just use either cloth inserts (thickly sewn squares) or an inside out diaper to tuck in the front of her diaper/pull-up where the stoma is (the blog post describes this a little better).

      Hope that helps some!

  11. Jessi said,

    What a great website! It is absolutely amazing how much research and work you put into this thing. You are helping so many parents who were just like you two years ago. This is a great resource for parents in terms that they can understand. You should be so proud of yourself. Talk to you soon.

    • workjw said,

      Thanks Jessi! We actually have a newer site (www.kidneyreflux.info) which is easier to navigate, but it has the same basic stuff. I’ve met a lot of really great people through the site, so it’s been really good for us too! See ya soon.

  12. Health Freak said,

    Hi, I just want to let you know that my baby has just gone for a post-surgery MCUG scan this week and the result is fantastic. There is no more reflux on her right kidney. The ureteral reimplantation surgery that she had undergone in May this year has been successful.
    My other purpose of writing to you is to let you know that I’ve found a nutritional food supplement called D-Mannose, which is effective in treating and preventing UTIs. My 16 month old baby has been consuming it for 2mths and she has not got any UTI attacks since. D-Mannose is a sugar related to glucose and is found in fruits like cranberries, oranges, peaches and blueberries.
    You can read more about D-Mannose from this website :
    http://www.sweet-cures.com/
    You can also do a Google search on D-Mannose and what you are going to read can be quite convincing.
    How is Lizzie doing now?

  13. Liz said,

    I am so glad to have found this website! My daughter has VATER syndrome which has required her to have 17 surgeries with another scheduled for this Friday. I am now discussing a vesicostomy with her urologist and until I read your site, I was almost completely turned off to the idea. As it is right now, I catheterize my daughter 4 times a day to relieve the pressure from her bladder up to her kidneys. Since Amy was also born with an imperforate anus she has SEVERE constipation issues. By this, I mean she gets laxatives, fiber supplements and rectal irrigations (enemas on steroids I like to say) daily. I am so worried that her bowel contents will empty near the location of the vesicostomy causing more infections. It is helpful to have others to bounce things off of going through similar issues. She used to have a feeding tube and I had to adapt her clothing to the tubes coming from her. Now it sounds like I will be needing more ideas for clothing with a probable vesicostomy on the way.

    Your video of Lizzy was so moving that it brought tears to my eyes because I can relate with all of the surgeries and lengthy hospitalizations. I wish you the best of luck and thenk you for this website!!

    ~Liz

    • workjw said,

      Hi Liz! I’m glad you found the site encouraging! I have to admit we were pretty nervous about the vesicostomy at first, but it really has been wonderful for Lizzie! For us, the stoma is plenty high that we very rarely have any issues with fecal matter around the stoma, but we aren’t dealing with as severe constipation issues either. There is a message board at http://www.kidneyreflux.info/forum where there are a few of us moms whose kiddos have a vesicostomy or ureterostomy. We would love for you to join in the discussions! It’s a slow board, and there are only a handful of us, but it helps to have someone to talk to that understands. There is also a great yahoo group for children with VACTERL and other urological issues that might be helpful http://health.groups.yahoo.com/group/urologykids/. Most of the moms on that board are very knowledgeable, and many of them have children that have/had a vesicostomy at some point. Even though Lizzie doesn’t have that particular condition, I have gotten wonderful info and support there!

      Good luck with the surgery on Friday! We will be thinking of you guys. Feel free to contact me anytime!!

  14. ayanna mommy said,

    thanks for sharing your story . i’m also going thru the same thing with my baby . your story make me understand it better

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