Halloween Festivities

Since I refuse to let Lilly miss any “firsts” I decided to do some Halloween stuff before her surgery.  We don’t really know how long the recovery is and I had to make use of the cute Halloween onesies.  Yesterday, Lilly and I went out to Metairie with our mommy group to a pumpkin patch.  Momma went camera crazy, she couldn’t help herself, with all of the beautiful fall colors!!

Lilly with her Daddy and Baby pumpkin

 

 

This is a typical “mom, I’m so totally done with this picture stuff” picture

She loved the scarecrow’s foot!

As you can tell “Stern” her elephant is never very far away :)

My buggy really liked the stems of the pumpkins

 

Today Lilly and I meet up with Jennifer, Stevie and Brody for another pumpkin patch adventure.  This time it was a real pumpkin patch, the pumpkins were actually growing on vines!  We took a tractor-like hayride out to the patch and then picked our pumpkins and took a tractor ride back to wash them and then head out.  Both of the kiddo’s did amazing, keeping in mind they both missed a nap! We were amazed at how many people came out to this little place off of River Rd past LaPlace! 

 

Her onesie says, “Baby’s 1st Halloween”

 

We were missing Daddy, too bad he had to work

Brody, Jennifer and Stevie, it was all of our first real pumpkin patch experience!

It was so muddy that Lilly and I got back to the wagon and played paparazzi! Here is Brody and Family in action, looking for their pumpkin!

Dumping some super cute videos

Here's buggy humming away..you'll have to turn your volume up all the way to hear it.

"Kisses"

"DADA" Daddy Loves this one!

DMSA…done

Well the DMSA was a little painful, not so much for Lilly but for Momma and Mimi. Mike had to work today so he could be off of work for the surgery. We go to the hospital around 10:30 and went to “Nuclear Medicine” to get Lilly's injection. That was a struggle in and of itself. My little chunky monkey has no easy access veins. They tried her hands..too chubby, her feet..too chubby, so as a last resort they did the injection in her wrist. And of course she screamed her little head off the whole time. After the injection, we went to child life services and got a tour of the hospital so I know where to go and what to expect of the day or her surgery. I highly suggest to anyone with a child of any age having surgery. Check to see if they have a Child Life Services and use it! At Children's Hospital in NOLA they have a whole DVD library for you to check out, they do activities for all ages, they explain procedures and surgeries to children in a child friendly language and they will come and help distract babies and toddlers during procedures. They are so nice and now know Lilly very well and we plan on talking to them a lot while we are at the hospital. Then around 1:00 we went back to the nuclear medicine and had to get Lilly sedated. That was by far the hardest part, again not for her but for me. I was unable to stay with her while they put her under and unable to stay with her for the scan. They give kids nitrous (laughing gas) before poking them with any needle so I know she was calm and happy until she fell asleep. We waited about 45 minutes after giving her to the sedation team, before they called us back to recovery. Lilly was not happy when we go to her but she was very very ready to eat! She nursed and was a little happier after that. She stayed groggy for about an hour afterwards. We made an emergency trip to Babies R' Us afterwards to get a present for my sweet pea. She totally deserved it!!!! She is home and happily asleep now

And on another note, Lilly is infection free again!! We have now had two urine cultures in a row come back negative.  For the first time in her life she is infection free!  I honestly can’t explain how happy that makes me. 

Surgery Scheduled

Alright we scheduled Lilly's surgery for October 20th. I'm not looking forward to it but I know this will make her all better! We will be going in for testing again before the surgery. They will do a DMSA Nuclear Scan, to get the total anatomy, shape, size, location and check to see if there is possible scaring in Lilly's kidneys. This will help us and the doctor know for sure where her ureters are and if she does actually have a duplex kidney. They will give Lilly an IV and inject something in and then we'll hang out for 2 hours or so then they will take "pictures" of her kidneys. We'll also get some blood work and another urine culture. Of course we have not scheudle these tests yet, I'm waiting on the doctors office to call me to make the appointment.

We are going out of town this Thursday to go to Tennessee to see our Framily!! I am so excited to go, I miss everyone so much! And of course Lilly needs to meet everyone.

Lilly got her first "sink bath" tonight..she liked it alot!

UTI summary

I'm writing this mostly for myself, so I can keep up with Lilly's stuff..but of course you can read it too since you're here :)

UTI #1 Lilly was so pitiful with a fever of 103!

UTI #1 was in the beginning of July. We went to the doctor with a very high fever and they did a full blood work up and urine culture. We went to the hospital to get her blood drawn, but she did not urinate so we went back to the doctors office to get a shot of antibiotic. The urine analysis came back with white blood cells the urine dip showed a UTI but the urine culture did not "grow" anything because she had the antibiotic in her system already. We were on Suprax for 10 days. We were told that we would have to see a pediatric urologist if she had another UTI..because it is uncommon for little ones to have more than one UTI at such a young age without an underlying problem.

UTI #2 she was in only a diaper at this point because her fever was so high

UTI #2 was in the beginning of September. We had another high fever and Lilly started grunting. I thought she was grunting because we started rice cereal earlier in the week and she was constipated. We went to the doctor and they did a urine dip which came back positive for a UTI. They decided to do a catheter to get a "clean" sample, we were put on amoxicillin, which made Lilly very sick to her tummy so we were switched to Suprax again. We got a call from her doctor saying that the lab did not do the urine culture so we had to do another catheter for them to run the appropriate tests. The urine culture came back negative, we thought that the Suprax cleared up the UTI by the time she had the second catheter. We decided not to see the urologist at this point because we thought the UTI cleared so quickly we thought it was because of a monster dirty diaper. Now looking back, this was not the case. A catheter is inserted directly into the bladder and in Lilly that only collects urine from her left "good" kidney, since her right ureter bypasses the bladder the urine from that side was not tested.

UTI #3 As you can tell she didn't feel that terrible for this one :)

UTI #3 (or continuation of #2 we are not sure) was in the middle of September. I noticed that Lilly's urine was very stinky and she was grunting again. So we went immediately to the doctors office to have her urine checked, they got another positive from a urine dip and did a bag to collect her urine instead of a catheter. We started Suprax again, and then two days later we got a call from the pediatrician that Lilly for sure had a UTI and this time the culture grew lots of bacteria and it was a resistant one. So we switched her over to Bactrim for 10 days and made our appointment with the urologist.

UTI #4 She isn't phased at all

UTI #4 (or continuation of #2 or #3 depending on how you look at it) in the end of September. The urologist ordered a urine culture after we finished Lilly's antibiotics from UTI #3 to make sure that it cleared. I went to the pediatricians office to pick up the supplies to do a bag urine sample, as I did not want to subject Lilly to more germs at the doctors office with the flu and whatnot going around. So this time I got the sample (without any fight from Lilly) and brought it to the lab. I got a call today from her pediatrician saying that the culture grew out more bacteria. I had a feeling that would happen because she was grunting again. She said is was not a lot but because of her previous UTI's she and the Urologist want to put her on a different antibiotic because it is another resistant bacteria. (Lilly is on prophylactic antibiotics until the surgery and for a while after to keep a handle on the germs.) They switched her to Macrodantin, which I have to mix into her cereal twice a day. Thank goodness it has no taste! So right now she is off her prophylactic Bactrim and on the Macrodantin for 10 days..then we will do another urine culture to see if it is cleared up this time. We have also started her on yogurt once a day (for the probiotics) to try to keep the tummy issues associated with antibiotics at bay.

And another one

We got a call from Lilly's pediatrician today, we did a urine culture on Tuesday to see if her last UTI cleared up. Well it either didn't clear up or we have another one and of course its another resistant bacteria. So we are off of the prophylactic antibiotics and on a different higher dose antibiotic for another 10 days.

I have also tried to schedule Lilly's surgery like the urologist told us to and the urology staff is not very helpful. They keep telling me that they are unable to schedule it because they do not have her chart yet, which is totally understandable, but they will not connect me with the person that I was told to speak to. I am very frustrated with this now that Lilly has another infection. I really just want to get this over with as soon as possible to avoid any more infection and possible kidney damage.

Now with all of that being said, Lilly is doing fantastic! She has been a super happy baby. She has started to sit up unassisted for a couple of minutes. We have also started her on yogurt as a way to combat any potential tummy issues that is associated with long term use of antibiotics, we think she'll be on them for at least 3 more months.

I promise I will update more when I get my new new laptop. I got mine about 2 weeks ago and it has some major issues, I contacted dell to let them know and they are sending me another new one. I hope to have it some time next week.

Oops...its been a while

Where do I start? Since the last time I posted everything has been crazy! Lilly had another UTI a mere 2 weeks after the last one..so we were sent to see a Urologist at Children's hospital in New Orleans. They ran two test, a renal ultrasound, which Lilly did amazing for they let her lay on her tummy on my tummy (does that make sense?) and they did the majority of it through her back so she was able to "talk" to mommy and play with my face the whole time. Then we did a VCUG, they injected a contrast dye into her bladder and took x-rays to check for Kidney Reflux (it has a fancy name but I can't spell it). She hated the VCUG, she had strangers pinning her down to the cold hard table while a big scary machine buzzed over her head. But as soon as it was done Daddy went in to save her.

The next day, Friday Sept. 18th we went back to meet her urologist and he had some news for us. Lilly was diagnosed with a Duplicate Collecting System on the right side of her body and kidney reflux which is caused by the duplication. This will require surgery to fix, but the surgery has a high success rate and we are hopeful that she will be "all done" (in sign language) after this one surgery.

Explanation: Normally you have 2 kidneys that have a tube (ureter) that drains into the bladder and that drains into the urethra which exits the body. We don't know for sure but the doctors suspect that Lilly has, on her right side, one kidney with some duplication in it and two ureters that exit it. The ureters meet and form into one that totally skips the bladder and enters the urethra instead. Her upper and lower poles of her kidney are swollen as well as the ureter. Normally when the bladder is full the pressure will close off the ureters so that urine does not back up into the kidneys but because Lilly's ureter doesn't go into the bladder she urine is constantly backing up into her kidney (reflux), thus causing all of the infections. The plan is for the doctor to take the ureter and "taper" it to make it smaller and then re-insert it into the bladder. We plan on scheduling the surgery sometime within the next two months. We don't want to risk kidney damage that may be associated with more infections and we also don't want her to remember it.