I started this blog to help chronicle the lives of 2 very special little people, Charlotte and Calvin. Since the last time I posted 1 million years ago our sweet little family has been made that much sweeter by the birth of our own little peanut Miss Reese Madilyn. Her entrance into our world on 6/14 @ 11:59pm was one of the most perfect moments of my life.
As many of you now know, Reese and I spent most of Tuesday at Children's Hospital in Omaha to check on her kidneys.
*background*
During a routine 20 week ultrasound, Wes and I learned that our sweet baby girl had a dialated kidney. (think pupils, just larger than normal) My wonderful OB (Dr. Ben Ryder [no relation to Flynn from Tangled, Charlotte asked] referred us on to a high-risk specialist Dr. Barsoom who had a high resolution ultrasound machine. We saw Ryder on a Monday 2/13 and Barsoom Wednesday 2/15. At the level 2 u/s we were informed that not only did Reese have kidney issues, it also appeared that she had thick folds at the back of her neck. These 2 "markers" are considered strong indicators of Down Syndrome. We were then given the option to have an amniocentesis (extremely large needle into amniotic sac for fluid containing baby's DNA) to determine if she did indeed have Downs. Wes and I at this time were very distraught, how could this be? Do we take the risk (which was very minimal at that stage of pregnancy)? How do you make an informed decision in 10 minutes? We asked Dr. Barsoom what to do and he explained it to us in 1 sentence (not the best bedside manner). "Is that something you want to find out on when your baby is born?" I decided that no I didn't want to spend her birthday greiving over what might have been, I wanted to be prepared for whatever challenges God chose to give us. The amnio was over in minutes and then the real waiting began, it was an agonizing 24 hours before we got the call that our little girl had just the right number of chromosomes; and that 24 hours has put everything else into perspective for us. After the big scare, we continued to see Dr. Barsoom every 4 weeks to check on what we now knew was a dialted kidney caused by a blocked ureter. The ureter is the tube that drains the urine from the kidney into the bladder. Everything about my pregnancy and delivery was normal, I just had more ultrasounds during pregnancy.
After Reese was born, they preformed an ultrasound on her tiny little tummy to get a better look at what was going on. The report this time said that she had what they call a "duplicated system". Mostly this means she possibly had an extra ureter and that ureter was blocked. At that time the plan of action was to hurry up and wait. Our pediatrician Dr. Michael Moore, World's Best Pediatrician (again no relation, no one asked, he's tiny and bald - not fat and hairy) referred us on to pedatric urologist Dr. Donovan (again terrible bedside manner) the best in Omaha. Dr. Donovan prefers to let the baby grow about 8-weeks before doing another ultrasound and some more thorough testing, which leads us up to Tuesday.
After all the tests were over, I was sent with a disc containing everything about Reese's condition, to Dr. Donovan's office. The appointment was scheduled for 3:50 the elusive Dr. Donovan made his appearance around 5:15. Dr. Donovan got to work explaining exactly what the results from all the testing were. It turns out that our little peanut butter cup got really excited when it came to growing ureters and grew 2 on each side. Her left kidney, aka the good kidney, has what they call Grade 1 reflux. Dr. D assured me that there is a 90% chance she will outgrow this, and not to worry about it. Apparently Grade 1 is nothing to worry about, it's just something we're going to keep our eye on. The right kidney is the trouble maker. Each kidney is supposed to do 50% of the work. From the kidney function test we learned that the left (good) kidney is doing 52% and the right is doing 48%, so far so good. Where we run into trouble is that the top portion of her right kidney is doing less than 16% of the total kidney workload. That tells us that the upper portion is not as healthy as the rest of the kidney because it is draining into the blocked ureter.
Dr. Donovan, who specializes in cases just like Reese's, referred to this ureter as "ginormous" and "ectopic", meaning it's huge and it isn't connected to the bladder like it should be. He then told me that our best plan of action is to have surgery to remove the top unhealthy portion of her right kidney and tie off the rogue ureter. He said in some cases he can attach the ectopic ureter to the bladder, but Reese's ureter is as large around as her bladder making it impossible to connect the two. According to Dr. Donovan, this situation is a terrible infection just waiting to happen. His analogy was, "if a doctor notices that a persons appendix is swollen during a different abdominal surgery he just removes it, because the appendix will burst eventually." So even though Reese does not have an infection now, she will inevitably get one. Dr. Donovan, who will also be performing the surgery, explained that the recovery from this surgery will be much easier on Reese while she's young and not as active as she will be when she's older. Reese is currently on a daily dose of amoxicillin to keep any infections at bay.
Reese Madilyn Parker
As many of you now know, Reese and I spent most of Tuesday at Children's Hospital in Omaha to check on her kidneys.
*background*
During a routine 20 week ultrasound, Wes and I learned that our sweet baby girl had a dialated kidney. (think pupils, just larger than normal) My wonderful OB (Dr. Ben Ryder [no relation to Flynn from Tangled, Charlotte asked] referred us on to a high-risk specialist Dr. Barsoom who had a high resolution ultrasound machine. We saw Ryder on a Monday 2/13 and Barsoom Wednesday 2/15. At the level 2 u/s we were informed that not only did Reese have kidney issues, it also appeared that she had thick folds at the back of her neck. These 2 "markers" are considered strong indicators of Down Syndrome. We were then given the option to have an amniocentesis (extremely large needle into amniotic sac for fluid containing baby's DNA) to determine if she did indeed have Downs. Wes and I at this time were very distraught, how could this be? Do we take the risk (which was very minimal at that stage of pregnancy)? How do you make an informed decision in 10 minutes? We asked Dr. Barsoom what to do and he explained it to us in 1 sentence (not the best bedside manner). "Is that something you want to find out on when your baby is born?" I decided that no I didn't want to spend her birthday greiving over what might have been, I wanted to be prepared for whatever challenges God chose to give us. The amnio was over in minutes and then the real waiting began, it was an agonizing 24 hours before we got the call that our little girl had just the right number of chromosomes; and that 24 hours has put everything else into perspective for us. After the big scare, we continued to see Dr. Barsoom every 4 weeks to check on what we now knew was a dialted kidney caused by a blocked ureter. The ureter is the tube that drains the urine from the kidney into the bladder. Everything about my pregnancy and delivery was normal, I just had more ultrasounds during pregnancy.
After Reese was born, they preformed an ultrasound on her tiny little tummy to get a better look at what was going on. The report this time said that she had what they call a "duplicated system". Mostly this means she possibly had an extra ureter and that ureter was blocked. At that time the plan of action was to hurry up and wait. Our pediatrician Dr. Michael Moore, World's Best Pediatrician (again no relation, no one asked, he's tiny and bald - not fat and hairy) referred us on to pedatric urologist Dr. Donovan (again terrible bedside manner) the best in Omaha. Dr. Donovan prefers to let the baby grow about 8-weeks before doing another ultrasound and some more thorough testing, which leads us up to Tuesday.
Before we left for Children's - my happy girl
Tuesday, August 7th, Reese and I made the trek to the Children's Radiology dept. for 3 tests followed up with an appt with Dr. Donovan himself.
The first test was just another ultrasound. Reese relaxed on her back while the tech did her job and then rolled over to her tummy (which she absolutely loves) so the tech could get images from the back side. While this was going on, I was definitely paying attention to the monitor, and I could tell that she had not outgrown the problem like we had hoped. The ureter was HUGE.
The second test was to determine just how well her kidneys are working. It basically involved placing an iv (not fun) and catheter (even less fun) and strapping her to a board over some kind of machine that reads nuclear output. The radiologist injected some nuclear reactive medicine into her iv and then we waited to see exactly how well her kidneys and ureters were working. I was told that the medication is completely rejected by the body and will go straight through without causing any harm. The objective of this test was to determine how much of the work each kidney is doing, and then further, in Reese's case, how much work the top of her right kidney was doing compared to the bottom. At this point it looked as though her left kidney was functioning normally (more on this later). The test was fairly easy on my little peanut and she took a little snooze while the medicine did it's work (about an hour and a half-ish).
On to test number 3 which I will be referring to as the "terrible-awful" for you Minnie fans out there. The "terrible-awful" test is called a VCUG. The test is used to determine if Reese's kidneys have what they call reflux (think heartburn for kidneys). The concern with reflux is that if she does have it she will be prone to all kind of infections, because the upwards flow could force bacteria from the bladder up through the ureters and into her kidneys. To preform this test Reese was again strapped to a board with huge pieces of velcro. This time though Reese had a little fun with us, she decided that now would be the perfect time to pass a little gas (wood plank, tiny bare bottom, you get the idea...lots of echoing going on in the x-ray room). The tech then informed me that we were now going to strap her arms up by her ears; this is when the sh*t literally hit the fan. My little "lady" pooped all over that awful board! She didn't feed it to them like Minnie in The Help, but she did let em have it. She was MAD, and everyone knew it. The VCUG test involves pushing fluid up through the catheter into her bladder and taking several x-rays of her bladders and kidneys to determine
if the fluid was moving in the wrong direction.
sleeping beauty
After all the tests were over, I was sent with a disc containing everything about Reese's condition, to Dr. Donovan's office. The appointment was scheduled for 3:50 the elusive Dr. Donovan made his appearance around 5:15. Dr. Donovan got to work explaining exactly what the results from all the testing were. It turns out that our little peanut butter cup got really excited when it came to growing ureters and grew 2 on each side. Her left kidney, aka the good kidney, has what they call Grade 1 reflux. Dr. D assured me that there is a 90% chance she will outgrow this, and not to worry about it. Apparently Grade 1 is nothing to worry about, it's just something we're going to keep our eye on. The right kidney is the trouble maker. Each kidney is supposed to do 50% of the work. From the kidney function test we learned that the left (good) kidney is doing 52% and the right is doing 48%, so far so good. Where we run into trouble is that the top portion of her right kidney is doing less than 16% of the total kidney workload. That tells us that the upper portion is not as healthy as the rest of the kidney because it is draining into the blocked ureter.
Dr. Donovan, who specializes in cases just like Reese's, referred to this ureter as "ginormous" and "ectopic", meaning it's huge and it isn't connected to the bladder like it should be. He then told me that our best plan of action is to have surgery to remove the top unhealthy portion of her right kidney and tie off the rogue ureter. He said in some cases he can attach the ectopic ureter to the bladder, but Reese's ureter is as large around as her bladder making it impossible to connect the two. According to Dr. Donovan, this situation is a terrible infection just waiting to happen. His analogy was, "if a doctor notices that a persons appendix is swollen during a different abdominal surgery he just removes it, because the appendix will burst eventually." So even though Reese does not have an infection now, she will inevitably get one. Dr. Donovan, who will also be performing the surgery, explained that the recovery from this surgery will be much easier on Reese while she's young and not as active as she will be when she's older. Reese is currently on a daily dose of amoxicillin to keep any infections at bay.
The "terrible-awful" test
As of now I only know the date of the surgery is August 22 (2 days after the twins first day of preschool and the day before picture day) and she will spend at least one night in the hospital. As I get more details regarding recovery etc. I will try to update here to keep everyone informed.
Thank you all for your kind words and support. This week has been overwhelming, and it's nice to know we have so many great friends and a supportive family behind us. 
Hi Amy!!
ReplyDeleteIt's Abbe, I have no idea how to comment with my name showing up, so it will be under anonymous. Anyway, I can't belive little Reese's story!!She is a trooper! I will be thinking about you all and praying for her during her surgery! Also, she has the same birthday as Chad, he will be very proud to have someone so cute to share Flag Day with!(I only know it is Flag Day because of him:)Miss you!