how sweet it is

As I write this, the clock is turning over to midnight, and a new day. August 14th to be exact. Miss Reese is now 2 months old, well technically 23 hours and 59 minutes from now she will be. In the morning we are headed to see her pediatrician Dr. Moore for her "well baby" check-up. However, instead of getting immunizations, my sweet girl has to have pre-op lab work done. :( I'm feeling so sad for her right now. I know there are probably a million parents out there who would gladly trade places with us, but this is breaking my heart. Reese appears to be absolutely perfect; chubby cheeks, roly-poly thighs - this baby sleeps 10-11 hours everynight...straight through. How could there possibly be anything wrong with her? It just seems so unfair that someone so tiny and innocent should have to go through such a serious operation. I found out the official name of her procedure and I quote "left upper pole partial nephrectomy". I got a two-page letter from Children's this weekend with info regarding her surgery, and follow-up appontments. Mostly, it's a very generic letter letting me know that an anestheiology nurse will be calling 2 days before her surgery. Her pre-op labwork includes a urine culture, CBC with differential, Chem 8, and UA with microscopic. Yeah, I can understand exactly 1 of those things, thanks for the details. I'm guessing that she'll have to have another catheter and a blood draw, but I don't know for sure about the cath, hoping not since she loved the last one so much. I hope this really is harder on me than her. Never before have I so badly wanted to trade places with someone. If only I could just take away all the pain for her. I'm doing my very best to stay strong and steady for Cal and Charlotte. They know that Reese will be in the hospital, and I'm trying to prepare them for that without scaring the bejesus out of them. I feel so bad that this is supposed to be their special time, starting pre-school, and this mess is over-shadowing it. They are so excited to start, not a day goes by that they don't talk about it. I guess the silver-lining here is that I don't really have time to cry over my babies headed off to school. Although, I have found a little! How are they this big already? Such is life...don't blink, right? Thanks for all your kind words, Amy

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.

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.