Matt, Christy, Ally, Tommy, & Natalie: January 2009

1/31/2009

Natalie's testing

Hi Everyone!I wanted to update you all on Natalie's tests she had done today. She went to Children's Hospital for 3 tests. An Ultrasound, Renal Mag3 lasiks scan, and VCUG. It was a very rough day for our little Natalie. She had to be catheterized twice and had to have 3 needle sticks. :( Poor girl.

The ultrasound was to determine the size of the kidney and compare to last month. The size is still very enlarged. Compared to last month, it's about the same degree of enlargement, almost 3cm larger than the left kidney. So even though it's still at a stage 4, it hasn't grown a great deal more than they expected to see. It's something they want to keep an eye on.

The Renal mag 3 lasiks scan was to determine how well the kidney is functioning and thankfully, it is functioning equally with the left kidney at this point. This means that it is making and filtering urine well. However, it took 54 minutes to drain as compared to the left kidney which took 17 minutes to drain. The concern with this is that b/c as it takes that long to drain, and she is eating in the meantime, it starts to fill again. So it's constantly holding urine, which is a concern with future functioning and risk of infection.

The final test was a VCUG, which looks for kidney reflux, or a backup of urine from the bladder back into the kidney. This test was negative, so she does not have kidney reflux. She also does not have a double ureter, which was something the original ultrasound listed as a possibility.

After the tests, we met with the doctor and he said that the renal scan showed that she has an obstruction in her ureter. It's called a UPJ obstruction (ureter pelvic junction). In utero, while the bladder and kidneys are forming, the ureters form from the bladder and grow upward to meet the kidneys. Sometimes the ureters fail to attach correctly causing a blockage, kink, or narrowing of the ureter. This is what happened in Natalie's case. Because this occurred, the urine does not move out of the kidney as quickly as it should.

The good news is that the kidney is functioning well. So at this point, the doctor doesn't want to do anything but watch it. We will go back each month for an ultrasound and doctor's visit. They will make sure the kidney doesn't get any larger. If it does, she will need surgery. If it stays the same, we will continue to watch it with monthly ultrasounds and do another renal scan at 6 months to see if the kidney is continuing to function well. He said that patients with stage 2, or even stage 3 hydronephrosis where there is a UPJ obstruction sometimes correct themselves. Stage 4 isn't as likely, but he's seen it happen so he wants to wait it out in the hopes that it will correct itself. He said several times, "I don't want you to think i'm dragging my feet, but I just feel that toddlers are stronger and can bounce back from surgery easier than an infant in the event she ends up needing surgery". So I really feel like he has Natalie's best interest at heart.

He said that he's had patients like Natalie present with the same condition, with the same level of kidney function, end up needing surgery at 6 months or a year. But he's also seen some that are fine until they are 3 or 4 and then present with flank pain or repeat infections and end up requiring surgery. Of course, all of us hope the next few ultrasounds will point to it correcting itself, which he has also seen happen. That would be the best case sinerio.
All in all, it was a very good appointment. I feel confident that she is in good hands. And I know that we've got a long road of testing ahead of us, but it needs to be done and we'll get through it. She is in God's hands and we just pray that he will continue to watch over her.

Her next ultrasound will be the end of February. I will keep you posted!

Thank you for all of your prayers!
Christy, Matt, Ally, Tommy, & Natalie

1/29/2009

Snow day!

Today was a snow day! Actually, yesterday and the day before were snow days, but both Ally and Tommy have been sick, so we didn't get to play in it until today. They had so much fun. They were frozen solid by the time they came in. We had hot chocolate with marshmallows when we came in! :)

The kids wanted to dig in the snow and make tunnels. They found wooden blocks to use and had a blast. :)

This is our lame snowman. We didn't have any carrots and couldn't find buttons, so we used mulch for the face, tiny twigs for arms, and ally used the first hat she could find. It might look lame, but the kids and I worked hard to roll his body and head and they were very proud of their snowman. :)

Here's Natalie's snow picture. :) She obviously couldn't come out with us, and she wouldn't sleep so i couldn't let her sleep and bring the monitor outside. Grandma B was nice enough to come and watch her/feed her so I could share this snow day with the kids. But here's a picture of Natalie in her snowman outfit since she didn't get to make her own snowman. :)

Natalie turned 6 weeks old this week!

1/21/2009

cute pictures

HAHA!

1/09/2009

visit with the specialist

On Jan 30th, they are going to perform a Lasix Renal MAG3 Scan with Intravenous polygram. They will place an IV and inject a contrast agent that fills the urinary tract so the doctor an see the organs and watch the kidneys fill and see if each kidney is contributing equally to the urinary system. Basically, it will show us how well the kidneys are draining urine. At the same time, they will do a Voiding Cystourethrogram (VCUG). A catheter will be placed and the bladder will be filled with liquid dye. X-rays will be taken as the bladder fills and empties. They will also do a regular Renal Ultrasound to measure the kidney to compare the amount of dilation on that day to the amount of dilation from the ultrasound we had on December 31st. This will tell them if the kidney is increasing in size, staying the same, or decreasing. These three tests will give us more answers as to what is going on. Once we get those answers, we'll talk to the doctor to see what the next step will be. Otherwise, she's growing and gaining weight fine, though. In fact, by looking at her you wouldn't know that she had any issues!

1/08/2009

Hydronephrosis

Here's a picture of Natalie's Hydronephrosis. Notice the size difference between the two pictures. The one on the left shows how the fluid is affecting her kidney.

We had her in to get the ultrasound on her kidney on 12/31. On 1/2, the report was back to the pediatrician and they started her on a strong dose of antibiotics as a precautionary measure. She will be on these for a minimum of 1 month, possibly longer. This is because kids with Hydronephrosis get kidney/urinary tract infections easily and if unnoticed, it can cause kidney damage.
The pediatrician referred us to a specialist at Children's Hospital, who we are seeing today. The radiology report states that she has Severe Hydronephrosis with thinning of the parenchymal wall and dialation of both the upper and lower pole moieties. The right kidey is 6.6cm and the left is 4.9cm. There is a question of a duplicated ureter, (which means that there might be two tubes going from the kidney to the bladder (there are supposed to be one on each side). When this happens, many times the urine will go down on tube and back up the other tube, causing the kidney to flood.) They will probably do a test where they will inject dye into her urinary tract to see where it ends up going. This will confirm or deny their suspicions. I will update after the appointment.