Nora's Kidney Update - April 2016

In April, the day after Nora's four month check-up with her pediatrician, we had a follow-up appointment with her urologist.  She needed to have another ultrasound to see if anything had changed with her dilated kidneys.  She once again was a trooper during the ultrasound and the doctor's visit that followed.

Unfortunately we learned that her left kidney was more dilated than at her last ultrasound in January, which means the urologist wanted to do more tests.  She was scheduled to have a Renal Scan, which would tell the doctor how her urine is flowing.  The test involves placing an IV and a catheter.  Since she would already require a catheter, we opted to go ahead and do the Voiding Cystourethrogram (VCUG) they told us about a few months ago to also determine if she is having any reflux.

Luckily they scheduled the appointment pretty quickly so we didn't have a ton of time to fret and worry.  We went to Children's Hospital on Friday, April 15 for the testing. 

The first test was the renal scan, and as we walked into this big room with all its fancy, intimidating equipment, my tears started flowing immediately (no surprise there!).  The radiologist and technician were both VERY nice, very patient and very calm.  They told us what to expect and then took their time getting to know Nora's veins to determine the best spot for her IV.  She started to get upset as they searched for the best vein, and she screamed while they put the IV in her arm, but calmed down quickly afterward.  Next up was the catheter, and while Jason and I stood on either side of her table talking to her, they slipped it right in.  Baby Girl didn't even flinch!!  They said she was quite the tough cookie!

After all her lines were in, I was allowed to hold and nurse her for a little while as they got the machine set up.  For the test, we laid her on a table and her body was strapped down to avoid too much movement.  They injected radioactive tracer in her IV, which the machine then tracked as it went through her system.  They were looking for a few things: 1. Are both kidneys functioning equally? and 2. How long does it take for the material to get from her kidneys to her bladder? (this part requires an empty bladder, hence the catheter).  That test took about 15-20 minutes and sweet little Nora just laid calmly on the table the entire time.  There was a TV above her head so she paid some attention to that. 

After the testing was complete, they determined they had to also inject a diuretic (Lasix) to get the material to flow completely out.  They said this is needed in 95% of the cases, so it wasn't alarming, but it did add another 30 minutes or so to Nora's time strapped to the table.  She started to get a little antsy towards the end, but the radiologist came to the rescue by dipping her pacifier in sugar water, after which Nora promptly fell asleep.

When that procedure was over, her IV was removed, but they left the catheter in place.  We walked down the hall to a different room where she was to have her VCUG.  For this test, they inject another radioactive material through her catheter and watch how the bladder function.  Nora just laid patiently on the table during the procedure, until they filled up her bladder and capped off her catheter.  You could see on the computer screen as the size of her bladder increased, and she got more and more irritated until she was full out crying.  After a few seconds, they released the catheter and she immediately stopped crying as her bladder returned to normal size.  Crazy!  They took pictures of her bladder and ureters throughout the whole process.  That test was pretty quick.

All in all we were at Children's for most of the morning.  Our doctor was in a conference, so we didn't get to meet with him after the appointment.  I did talk to one of his nurses later in the day and then had a longer conversation with him on Monday to discuss the results.  They learned from the renal scan that both kidneys are functioning normally and there is no blockage, which is a huge relief because a blockage could mean surgery.  The VCUG, however, did show that Nora has some reflux on both sides, but worse on the left side (urine that has entered the bladder returns back up the ureters, which it's not supposed to do).  The doctor said in most cases, especially in girls, they grow out of this issue with no intervention.

Zonked out after our long morning!

For now the plan is to keep Nora on the preventative antibiotic until next April, when we will repeat the VCUG again.  I was having a hard time imagining all this testing on my four month old, but now I'm REALLY dreading trying the same with a mobile, squirmy 16 month old!!  Hopefully she's a much a trooper then as she was this time.

We were so proud of our sweet baby girl and how she took all the poking, prodding, and lying still on tables in stride.  We are grateful to have some answers and even more grateful that she doesn't require surgery now (and hopefully not ever).  Here is our happy baby girl a little while after we got home that day; no worse for the wear...

One Month Old!

Nora turned one month old on January 4.  She is growing so fast!!  By one month she had outgrown pretty much all the newborn clothes in her closet and was filling out the 3 month clothes quite well.  We moved her to her own bed shortly after the one month mark.  She was starting to get pretty fidgety in the Rock N Play, so we decided to give the crib a whirl. She did great sleeping in there, and we started getting better sleep too without hearing every little grunt and squeak.

A couple days after she turned one month old, Nora had her follow-up appointment with the urologist.  I also decided it was time to introduce her to a bottle, so we did that while we were waiting for her ultrasound.  It was pretty funny; I made Jason take pictures of her first bottle, but the receptionist was calling our name to get us checked in.  He apologized and they said "it's OK, she's your first, isn't she?"  And he said "Oh, no, she's our third; my wife just insists on documenting everything..."  Haha!!

She took it like a champ with very little hesitation, but I learned that even the size 1 Avent nipples were too fast for my breast-feeding baby.  Since then we've switched to our Dr. Brown bottles and she does great with them.

We got to go in with her for her ultrasound this time, so of course I took a couple pictures!  She did great and the technician got all the measurements she needed.

After the ultrasound we met with the urologist.  He said her kidneys looked the same.  We were hoping they would've shrunk, but at least they didn't get bigger.  He said he still can't rule out reflux without doing that invasive test, but since her ureters still look fine, he's assuming/hoping she doesn't have reflux.  He gave us the option of taking her off the antibiotic or keep her on it as a precaution.  We weighed the pros and cons and decided to keep her on it until her next appointment, which will be in April.  The doctor said there have been tests proving that the prophylactic antibiotic does in fact prevent kidney infections IF she has reflux, so we decided better safe than sorry.  There are no long-term effects of continuous Amoxicillin use, so the only con is that we have to remember to give it to her every day.

Nora had her one month check-up a little late because her pediatrician was out of town.  At 5 weeks old, her weight was 11 lbs, 3.8 oz (84th percentile) and her height was 22.5" (90th percentile).  Her head size is 39 cm (95th percentile).  Quite an increase from where she was at 12 days (66th and 47th percentile in weight and height, respectively)!  Baby girl is big like her brothers!!

She is getting so strong and does a great job holding her head up on her own.  The doctor was impressed when he laid her on her belly how well she could lift her head.  I credit all the snuggling since her favorite is to be held up on your shoulder facing you.

Nora met her buddy Lincoln in early January too.  This is our neighbor's third son, and he was born in mid-September.  His older brothers are the same ages as Jack and Charlie, so Nora and Lincoln will be seeing a lot of each other over the years.

And here are some other pictures of Nora's first month.  We'll call this 'the many faces of Nora.'

Other December Updates

Nora's umbilical cord fell off at 10 days old, which was a vast improvement over her brother Jack, who held onto that puppy for 7.5 weeks!  She had a weight check at the pediatrician one week after her first check-up.  She weighed 7 lbs, 15 oz, which was 11 ounces more than the week before.  Big girl!  That put her in the 66th percentile for a 12 day old girl.  She measured at 20", which is 47th percentile.  We officially got the go ahead to let her sleep longer than 3-4 hours if she so chose (she didn't choose to do so initially).

Nora visited the pediatric urologist in December.  We had to bring with us the results from the ultrasound she had in the hospital.  The doctor clarified for us that it is not her ureters that are dilated as we originally thought, it is still her kidneys.  The concern is that she could have reflux (where the urine heads back into the kidney from the bladder through the ureter, which is supposed to be a one-way street).  The fact that her ureters look normal is a good sign that there's no reflux, but they won't know for sure unless they do a (rather invasive) test.  We so far have opted not to do that test.  The doctor recommended we keep her on the Amoxicillin and come back when she's one month old for a repeat ultrasound.  Here's Nora looking darling at her urologist appointment:

Jack's last day of school before the holidays was Thursday, December 17 and he didn't go back until Tuesday, January 5.  It was a very long break!!

The first night of break, our neighbor gave Jason four tickets to the Blues game.  He took the boys and Grandpa Clayton and they had a great time.  Charlie loved his first hockey game!!

We had LOTS of snuggle time with Nora.  We had quite a few visitors, but I didn't do well taking pictures.  Whoops!

New elf hat from Angie

The boys loved putting together their new Legos from the Lang Christmas...

And we tried out the Shrinky Dinks from Aunt Kelly...

Jack typed a sweet note in his Leap Pad...

 And Charlie renamed himself in his Leap Pad...

 I'd say these boys are loving their new baby sister!!  As an added bonus, they received a few gifts from Nora's visitors, including these cool Transformers from Jules...

One day, the boys were being punished for their bedtime behavior the night before, so we told them they had to 'work' all day.  The first task was cleaning out the toys in their room.  They were given three boxes: keep, donate and trash, and they did a surprisingly good job filling up the donate and trash boxes.  Later in the day I asked them to clean the windows.  The day o' punishment, while productive, sort of backfired because they both kept telling us how much fun they were having.

Here are Nora's 2 week pictures...

And a side-by-side of weeks 1 and 2.  Not a drastic change in one week...