Posts Tagged ‘renal duplication’

Annalise’s Kidney Series

October 3, 2012

I’ve had several people mention that they’ve read some (or all) of my blog posts where I documented our journey with Annalise’s kidney. Hey! Thanks for reading! This is one of the reasons I wanted to start this blog – to share how we dealt with Annalise’s birth defect, and how it’s all worked out. I’ve written a 5-part series, from our first glimpse at a prenatal ultrasound, to surgery, to the life afterwards. I’ve created an index to Annalise’s kidney series to aid in navigating my blog posts. You can always find this link on the home page under the “Main Menu.”

As always, please be sure to share our story with anyone who may be facing a similar situation. And don’t hesitate to comment (or email) if you’d like to know more. We are blessed, and I hope to bless others through our story.

Annalise’s Kidney Abnormality: Part V

August 28, 2012

Last time on this topic, we left off after Annalise’s surgery. We were heading home from the hospital, relieved that it was all over. But the appointments with the doctors didn’t stop after surgery…

Annalise had recovered so well in the hospital. At almost 8 months old, she bounced back like they said she would. Besides a slight favoring of her abdomen, I really couldn’t tell a difference. We headed home, on Thanksgiving night. Our home was so much more relaxing than the pediatric unit at UVA Hospital. Don’t get me wrong – the nurses and doctors were great…but nothing beats sitting on your own couch and NOT sleeping on a recliner.

That evening, Annalise started to spike a fever. She went to bed fine, with tylenol, but she was restless throughout the night. Annalise is extremely cold-natured, and rarely ever gets a fever. It was so weird to touch her head and pull back from the heat. We called the doctors at UVA when her fever reached over 101, and they said it was normal to spike a fever post-operation. They weren’t worried, unless she showed other signs or the fever lasted more than 24 hours.

The following day was Friday, and Annalise and I were both cranky from little sleep. But what did I do? I wanted to roast a turkey for the three of us (yes, my 8 month old ate table food…another post to come about all that). Thanksgiving is my favorite holiday, and we were having turkey. Screw my exhaustion. I need turkey. And mashed potatoes. And pumpkin pie. Annalise’s fever started to subside that evening, and was completely gone the next (Saturday) morning. Oh and did I mention? That day was my birthday. Happy birthday, to me…right? I’ve had better days. Probably every other day that year.

So two weeks later we were back at UVA for Annalise’s out-patient surgery to remove the stint. If you remember, there was a slight complication during her kidney removal. Her healthy ureter must have been nicked during the surgery, so they put in a stint to help it heal. The procedure itself lasted 5 minutes – literally just using tweezers to pull out the stint through her bladder. But she still had to go through all the pre-op fasting, prep, IV, and anesthesia. Thankfully, it all went smoothly (aside from the fact that we didn’t know where the out-patient surgery was). And the pediatric urologist did get to look Annalise over. He was pleased with how her incisions were healing…awesome. And we were home in time for a morning nap, and we all Annalise slept wonderfully.

Six weeks from the first surgery in November, we headed to the pediatric urology clinic for our first follow-up. Annalise was now 9 months old, and the surgery seemed like a distant memory. We had stopped giving her daily dose of antibiotics (as a preventative for infection), which was weird for all of us. Since Annalise was just two months old, her  “candy” in a dropper became part of our life. One day, we just stopped (with our doctor’s approval). And life got simpler.

In the clinic, Annalise had to give another pee sample, and have another ultrasound on her abdomen. It wasn’t as easy this time, since Annalise was now crawling and much more agile. But we got through it, and the pediatric urologist confirmed that everything looked great! And great, meaning that all of the dysfunctional part of her kidney was removed. And the kidney and ureter was healing normally. Next appointment scheduled in 6 months.

So as I’m writing this, we had her 6 month post-op checkup a month ago. Same routine: pee sample and ultrasound. But this time, Annalise is a walker/runner/mover/shaker. I felt less like a mom and more like a lion tamer. But armed with a bag of grapes, she held still long enough for a few ultrasound pictures. And everything looked good – the kidney was actually beginning to regenerate and grow. Good signs. And now we’ll head back a year from now.

As Annalise grows, we’ll probably have yearly appointments for follow-up (pending no infections or complications). Basically, she is doing most of her growing right in these few years. So the pediatric urologist wants to watch this kidney as it grows. Eventually, if everything continues to heal and grow as it should, the doctor will stop seeing Annalise. They will assume that after several years of monitoring, her kidney will continue to grow and function normally. So lets just hope for that!

Of course, I plan to update this series if things change course. But as for now, we think that this is the end of the road with the kidney saga. Yes, there will be more follow-ups, more ultrasounds, and hopefully more good reports. Life post-surgery has been uneventful for us, thankfully. And it really wasn’t as bad as I thought it would be (but is anything, in hindsight?). Although, I bet I will still get lost in UVA’s west complex as I navigate the halls to the Pediatric Urology clinic. Let’s hope the new Children’s Hospital opens soon…and there’s a cafe close to the clinic!!!

Annalise’s Kidney Abnormality: Part III

August 1, 2012

So last time, we were leaving the pediatric urology department with a prescription for a daily antibiotic and a plan for more tests.

A few weeks later (Annalise was about 3 months old), Annalise and I head back to UVA for a kidney function test and another ultrasound. After gathering information from the doctor, nurses, and internet (in no particular order), I know that this day will be a bit more involved than the previous visit.

First, Annalise will have an IV. The IV allows a radioactive dye to be injected into her bloodstream, which her kidneys will later absorb. The dye is a tracer that will be detected on a scan several hours later, and will show the functionality (and non functionality) of her kidneys. Second: because of the IV, Annalise is required to fast beforehand. Since she was born, I fed her every 3-4 hours during the day. I had never prevented her from eating when she showed signs of hunger, much less waited 8 hours between feedings – not even during the night, at this point! When I laughed at questioned the nurse’s instructions for fasting, they assured me that this was routine protocol and Annalise would be fine. To me, a first-time mom, this all sounded absurd, and guaranteed a horrific experience for me all involved parties!

As we head into the radiology department, I am afraid and apprehensive – more for the fasting than anything else. What could be worse than a hungry infant?

We are called back and are escorted into a small room, where two nurses prep Annalise for the IV. I’m not nervous when it comes to needles – and at this point, Annalise had already had several shots at the pediatrician’s office. But the needle for this IV was ridiculously small and thin – the smallest the hospital had available. I remember commenting on how tiny it was…

The first nurse steps up to the plate – this needle in her gloved hands. I try to hold Annalise down, and keep her calm. Another nurse holds down her legs, since the foot is the ideal place for insertion at this age (it’s out of the way and less likely to get pulled out). Annalise begins to protest, the needle goes in…and the needle goes out. Her veins and valves are just so small. There is almost zero room for error. “Surely I’ll get this in the next try,” she says.

The nurse preps Annalise’s hand. Same thing – different appendage. No luck. The needle just won’t thread into her veins. The second nurse steps in and takes over. The first nurse assures me that it won’t be long. We go for the other foot. More screaming, more thrashing, more restraining Annalise. Needle goes in, needle comes out. At this point, (sorry to be graphic) there is blood everywhere. The nurses are trying to cover her pricks with bandaids, but it’s quite hard when their patient is screaming and flailing her arms and legs. Plus the bandaids are about as small as my pinky’s finger nail. At this point, I really am just trying to stay calm – for everyone’s sake. A crazy hysterical mother would not be so helpful in this scene right now. I tell myself that it’s not the nurses’ fault, but I just keep wishing that I knew when it would end.

All in all, three nurses attempted to thread the IV in a total of six different locations. The whole ordeal took about 45 minutes, and when it was over, everyone was exhausted and relieved. Then the radioactive dye was injected through the IV, and her hand (with her non-sucking thumb, thankfully) was taped up really well. I was NOT going to have this IV fall out. Although Annalise wasn’t supposed to break her fast until the entire procedure was over, the nurses had sympathy. They let me nurse her right there. Poor thing. She hadn’t eaten for about 6 hours, and she had been through quite an ordeal with the IV. As she drifted into sleep with a full belly, I felt like I needed a nap too. But the day wasn’t over yet. I needed to eat lunch at some point, and there were more tests.

We head into the ultrasound room, where they take more images of her kidneys and bladder. Cake walk, relatively. Then we had a few hours to wait until the kidney scan. The dye would take some time to be absorbed into the kidneys, so we were free.

After some quality time in the dining hall, we head back to our little torture chamber room and get prepped for the scan. They tell me that they will take at least three scans in differing angles, and each scan lasts about a minute. She will need to be perfectly still for each scan. I laugh. This should be good. When we lay Annalise on the ice cold table, she immediately freaks out. But who wouldn’t, after what happened earlier that morning? Even with some wiggling, the straps hold her down pretty securely. The technician seems to be pleased with the clarity of all three scans – we were free to go! No repeats! After removing the IV from her hand, Annalise and I run from the hospital. In the safety of our home, we both crash from the dramatic day.

A week or so later, we come back to the UVA pediatric urology department to go over the results. Of course, a urine sample was collected. [I say this with bitterness in my heart because it seems like there is no such thing as a simple office visit when it comes to specialists.] Compared to the IV, I don’t even flinch. Plus, Jason was able to come this time and provide a clear head moral support.

Our doctor comes in, and pulls up the kidney scans. He explains that the images show that the right kidney (the dilated one, with the duplication) was doing about 40% of the total renal function, and that the upper portion was obviously not functioning normally (if at all). This all leads to that dreaded word: surgery. The color drains from my face. “Not to worry,” he says, as he goes on to explain. “…Laparoscopic…minimally invasive…quick recovery…” But I’m not really there. I can’t imagine seeing Annalise go through something worse than the whole IV ordeal. The doctor routinely performs this kind of surgery on babies, and as long as she stays healthy (i.e. no kidney infections), the surgery will be scheduled when she’s about 6 or 7 months old. In the meantime, we go home. At the advice of our doctor, we change her antibiotic prescription to a stronger one, now that she’s older (older? she’s 3 months old!). We aren’t scheduled to go back to UVA until we get closer to her surgery, which would be a pre-op “check up.”

The pediatric urology department calls with the appointment. Late October, 4 months from now. I put it in my calendar. Now, I can count down to D-day! I have so much time to find reasons to worry, develop an extensive list of questions, and try to pretend that my daughter is healthy. She is, of course (healthy, that is). It’s just that part of her kidney is wasting away and causing all this “preventative” care. We are lucky, in that way. No signs of infection. No changes to our daily life (except the “treat” of sugared down antibiotic). But here I am – just counting down the days till my daughter will go under with anesthesia for about 5 hours. NBD.

Annalise’s Kidney Abnormality: Part II

July 24, 2012

So if the title leads you to think you missed something, you probably did! Read/skim Part I to catch up.

Opening Scene: the proud and sleep-deprived Mama brings her 6-week old daughter to the Radiology department at the UVa hospital for precautionary tests.

I haven’t actually met the urologist yet, but I am sitting here waiting for Annalise to have two tests. First, she’ll have a VCUG, which, as explained by the nurse (over the phone), will test for any reflux from the bladder. Apparently this is a common problem associated with kidney abnormalities. So I’ve heard a lot about the VCUG on mommy boards on the internet. I’ll later find out the results are extremely important when it comes to urinary tract infections, which can turn into bladder infections, which then can become kidney infections (each with increasing risks). Reflux is measured on a scale of severity, but any reflux is a problem with which to be dealt. This makes me nervous.

After the VCUG, we’ll have an ultrasound; this time it will not be a prenatal one. The technician will probe Annalise’s tummy and compare her kidneys. They are looking for any more dilation, and a better understanding of her anatomy, which seems to be abnormal.

After these tests, a normal patient would go upstairs (and through the woods, and around the pond) to the middle of nowhere the Urology clinic and go over the results. But since we’re local (and more flexible), we get to come back another day and meet with the urologist. Joy. I just love the whole hospital experience – let’s drag this out do this again!

Still with me? Because right now, I’m still sitting in the waiting room, with the buzzer that the receptionist gave me after checking in. Am I waiting for a table at Outback, or to place my baby on a cold table? It’s easy to forget where you are with the windowless room and the fluorescent lights... Anywho, Annalise is by far the youngest here. But probably noone in the room suspects that she is the one who is the patient. We hadn’t  people-watched waited long, before we are called back.

I wheel the stroller back to a room with equipment that towers over the room. I try to swallow my fears, and follow the nurse/technician’s instructions: take off Annalise’s clothes; put this HUGE gown on her little body; remove her diaper. She’s not too upset – until they take her and try to insert a catheter. It’s the smallest catheter I’d ever seen – and I think it was still too big for her little private parts. She’s in pain, and because she resists, it takes them even longer (and probably makes the pain worse). I am in agony; there is nothing I can do. I try to give her a pacifier (she’d barely even seen one before this day) that was drenched in sugar water (also something new to her). She surprisingly takes to it, but she still sobs between her desperate sucks. I hate standing here, doing nothing, as they strap her down to the table. And I now become associated with her experience of pain, instead of the comforting Mama. The nurses reassure me that the worst is over. Annalise had worn herself out, and she drifts into sleep. They insert some dye into her bladder through the catheter, and they watch it as the machine scans and moves around her. It was pretty incredible to see technology at work. Apparently reflux usually is seen when she pees, so when she did her business, we were done. I would later discuss the results with the urologist, but they say that they didn’t see any signs of reflux.

What a relief. Now unstrap my baby and get me out of here! VCUG – check.

Then I am led to the ultrasound room. It’s nice and dark in there. Calming. Compared to the VCUG, this seems like a walk in the park. Annalise is grumpy from being woken up too soon (who wouldn’t be after getting something shoved up your pee-hole?), but the technician gets the images of the kidneys and bladder. The back door opens (There’s a back door?) and a radiologist introduces himself. Apparently, this is a rare occurrence, but he actually came in to take a second look and get more images. He takes the wand, and after scanning around, confirms the earlier prognosis of a duplicated renal system. He tries to look as deep as possible, but he can’t find where the extra ureter goes. Apparently, a duplicate ureter usually does not drain properly into the bladder (which is what causes the kidney to become dilated) and many times is ectopic. The upper portion of the right kidney still shows dilation, and I’d further talk about the next step with the urologist.

Bummer. More dilation. Probably more tests.

My husband joins us as we come back a few weeks later to the Urology Clinic. After they taped a too-large bag to my daughter collected a urine sample, we meet our urologist. He surprises me – warm, friendly, empathetic, a good listener. Are you sure you are a specialist? He then basically confirms everything that we’d heard from the technicians and doctors before. But he does give us direction – more tests. We’d come back in a few weeks for a kidney scan (which tests the function of the kidneys) and another ultrasound. Then he mentions the dreaded word: surgery. I can’t believe he just threw it out there – the word just hangs in the air. Put on the brakes…we just met you! He probably sees the look in my eyes, because he immediately jumps to reassure us. If Annalise had surgery, it would be a ways down the road, and it’s a non-invasive, laparoscopic surgery, with very short recovery time. Oh, and then he mentions that Annalise should be on a daily antibiotic. Why? The VCUG showed no signs of reflux? Just preventative, precautionary…ha! that’s what we have heard all along! So we pick up the prescription on the way home, and Annalise begins her love affair with medicine that very night.

Next stop: more tests at UVA.

Annalise’s Kidney Abnormality: Part I

July 13, 2012

So far, I’ve kept this subject out of the “public” eye. It was too personal. Too difficult. I didn’t want all the obligatory condolences and prayers (even if many were genuine). We needed support, but we went to our closest friends and family. Thank you to each of you, who were there through this journey. We needed you.

But now I’m ready to put this out in cyberspace – because I want other moms or moms-to-be to read this, and find comfort in our experience. I believe knowledge is power, and the most comforting thing in a trying circumstance is knowing what lies ahead. This will be a multi-part series, because there are so many stages. But back to the beginning…

It was December of 2010. I was 22 weeks pregnant with our first baby. We finally were going to see our baby on the ultrasound – and find out the gender! We were excited beyond words. Yes, the thought floated through my head that if there was anything wrong, we’d also probably find out. We opted out of many early-on prenatal screenings (i.e. to find down’s syndrome), so this was our first glimpse of the health of baby. But really, I wasn’t thinking there would be anything wrong. I just wanted to find out WHAT THE HECK WE WERE HAVING SO I COULD DECORATE/PLAN/BUY CLOTHES! I’m just being honest.

Jason and I headed to the prenatal diagnostics center here in Charlottesville. My OB doesn’t do ultrasounds in house, so we go to the best place in the area (which is great to have local!). As we sat in the waiting room, I saw a good friend behind the receptionist’s counter. At the time, he was doing a part-time residency as a genetic counselor at the office. So when we were escorted back to the u/s room, he came along and we caught up while we were waiting for the nurse. She came in, and was taking lots of shots: brain, head, heart, genitals (it’s a girl! AHHH!), umbilical cord, placenta, kidneys….wait, redo: right kidney. left kidney. another position. right kidney. left kidney. “Hmmm…nothing to be worried about, but I’m going to get the doctor to take a second look here.” So…we didn’t worry. We continued to chat with our friend as the doctor came in, soaking up that we were having a DAUGHTER. Even the doc joined in with our conversation, like we were all best friends. I only realized something was more serious when the doc said, “Interesting……..you know, you never want to hear your doctor to say ‘interesting.'”

Then I stopped chatting. I completely changed – warning bells started to go off. My heart started pounding. Everyone else disappeared. WHAT WAS WRONG? I have no recollection of when our friend stepped out of the room – obviously he did at some point. There was no more chatting. Jason and I were glued to the 10 inch u/s monitor as the doctor glided the wand around on my belly. As I careened my head toward the screen and asked a bazillion questions, the doctor must have realized that this was the first we’d heard of the problem. He’d thought we’d been referred to his office because our regular OB had seen it first (which apparently happens a lot in their office). We calmly tried to explain that NO!-we-had-no-idea-so-stop-chichatting-and-tell-me-what-is-going-on. He apologized for being so flippant about his earlier comments, and then saved himself said to me, “For this being the first time you’ve seen this problem, you’re handling this very well.” Those words were like goldfish crackers to a toddler – I instantly became much more relaxed, releasing the grip on the u/s table, and allowing grace for this doctor, who was just doing his job.

After lots of pictures and fishing around, the doctor had gathered that Annalise’s right kidney was partially dilated (or enlarged) on the upper lobe. And there was probably a renal duplication on the right kidney, meaning two ureters came out and headed toward the bladder, instead of one. He assumed there was some obstruction in the ureter somewhere, which was preventing the proper emptying of the kidney. “Not to worry,” the doc said, “If I had to choose to have some abnormality or problem in my baby, this would be it. 99% of the time the kidney will work itself out, even before birth.” He said that worst case scenario would mean corrective surgery (SURGERY????). He handed me a slip of paper with the words “UPJ obstruction” and “renal duplication,” since those were new vocabulary words at the time. We’d be back for another prenatal ultrasound to check on the kidney’s development, and he expected it to look normal.

We came back for several follow-up ultrasounds before Annalise was born. Each time, they expected her kidney to have corrected itself (which apparently happens often). Each time, we walked away with another appointment scheduled. I think our last appointment was around 36 weeks gestation, and I was given the contact information for the UVA pediatric urologist (also local to us). Annalise would be passed into his hands, via her pediatrician’s recommendation. It became much more real and scary to go from “baby in womb with problem” to “baby with a pediatrician and urologist.” It seemed more tangible. More expensive. More costly. More life or death.

In March, Annalise was born with no complications, thank God. Our pediatrician was soon filled in with all the history of Annalise’s prenatal ultrasounds. He was familiar with the whole kidney problem thing, having been a pediatrician for 25+ years. Like the u/s doctors, he wasn’t the least bit worried or concerned, which always reassured us. Our pediatrician had worked with this particular pediatric urologist before, and again thought that her kidney would still work itself out on its own.

But just for precautionary sake, we scheduled an appointment with UVA’s pediatric urology department. There, we’d meet the man, who would become so influential in our daughter’s life.