Posts Tagged ‘dilated kidney’

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.

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Annalise’s Kidney Abnormality: Part IV

August 11, 2012

So we’re picking up in this multi-part series after we heard the news that Annalise will need corrective surgery on her right kidney. (See Parts I, II, and III to catch up.)

It’s early November. Annalise is 7 months old. It has been several months since we’ve visited UVA to run tests or see a specialist. Life has almost returned to normal…almost. The prospect of her impending surgery has loomed over me. At this point, many of our friends and family have heard about this saga with Annalise’s kidney. Many are praying for her miraculous healing. While Jason and I did believe that God could miraculously heal Annalise and that none of this surgery would be needed, we couldn’t help but ask: would He?

We head into the pediatric urology clinic for one last ultrasound and pre-op visit. Annalise sits on the examination table and watches the radiologist and rookie resident wave that wand over her belly. And yup, the right kidney is still dilated – the upper portion. Everything else looks normal. God has chosen not to heal Annalise miraculously. I have prepared myself for this: surgery.

As we sit in our examination room and wait, reality sets in. We are going to do this. The thing we feared most is becoming a reality, not just a possibility! The doctor, the pediatric urologist, comes in quietly and sensitively. “Hey guys…how are you doing?” I just love how he is so empathetic and understanding – even with his first few words! We chat a bit, and then get right to talking about the surgery.

The surgery will last about 4-5 hours. The doctor, himself, will perform the surgery, with the assistance of the laparoscopic devices. There will be three holes in her abdomen – the largest over her belly button where the camera will be inserted. Annalise will go completely under, even before the IV (thank you Jesus!). They will remove the upper portion of her kidney that is non-functioning. Then they will close the kidney with dissolving stitches, and will glue her three exterior incisions (instead of using sutures). A team of doctors and nurses will be attending Annalise at all times. The surgery will be in the main hospital, and we will be able to see her almost immediately after she gets out of the operating room. The doctor says that they like for the kids to wake up with a familiar face. Annalise will stay in the recovery room until she wakes up, and then she will move to the pediatric unit until she is discharged. He says that we should expect her to be tired and groggy, but that she should bounce back really quickly. Annalise should stay 1-2 nights in the hospital, and one of us should plan on staying with her (uh, glad we’re on the same page because I’m not leaving her at the hospital alone after all this drama). He gives us a full packet to prepare us for the big day. It looks like an orientation packet for college or a new job. What all could possibly be in here? Free post-its? Coupons for pizza?

We pack up and head home. Three weeks until D-day. The surgery is scheduled for the week of Thanksgiving, and also my birthday week. Ugh. The silver lining is that Jason will already have a few days off work, so he’ll only need to take a few more for the surgery. We try to spend the next few weeks not thinking about the surgery, but it’s hard to think about “what if’s.”

The night before, I squeeze Annalise a little tighter before bed. I kiss her and try not to think that this could be the last time I hold her like this. Why does my mind go to worse-case scenario? She’ll be fine! This is routine! But I can’t help it. As I leave her room and Annalise innocently falls asleep, I cry. This could be her last night in our house. I say a prayer, mostly for myself, and try to remember that Annalise is God’s child. I am entrusted to care for her, as long as she (or I) is alive. If God takes her from me tomorrow, I have to remember to be thankful for these last 8 months with her. I can do this. Worse-case scenario, I can still do this. So help me, God. And God…be with the surgeon and the anesthesiologist! If anyone needs to be well-rested for tomorrow, it’s them!!!

We get up bright and early on a cold November morning and drive the familiar drive to UVA hospital. I haven’t slept a wink, even with the help of my best friend, Tylenol PM. We head not toward the urology clinic, but towards the main surgery department. It’s already full – with middle-aged people and a few teenagers. Not many kids.

Annalise is fasting, yet again. As we wait, she does manage a quick 45 minute nap in my arms – despite the fluorescent lighting and the intermittent hollers by the receptionist. We get registered (somehow this takes two different people?) and wait some more. It’s lunch time. I go get some food. We realize that Annalise somehow got bumped to be the third patient in her operating room. Probably because of some jerk-face, arrogant busy surgeon who bumped us to the end of the day. Gotta love hospital politics. By the time we head upstairs to pre-op, it’s 1pm. Annalise hasn’t eaten in over 12 hours, and she’s only had 45 minutes of nap for the day. She’s almost 8 months old…do you hospital people realize what unnecessary hell you are putting us through by having to wait this whole day? And the surgery hasn’t even happened yet!?!? I try to stay calm, because I realize that the people who I am talking to aren’t responsible for the scheduling of the OR or the way things are run. But God help the head of scheduling, or the surgeon who bumped us, should I run into them at this moment. Justice will be done, by my hand and/or mouth.

But thankfully (for them) that doesn’t happen. Annalise gets dressed in her too-big hospital gown and her hospital bracelets on her ankle. We say goodbye as a nurse takes her away to the OR. Normally, I think I’d melt down – at least cry. But at this point, I’m relieved that the waiting is over. Soon she will be knocked out with the anesthesia and be able to rest.

Hours go by. I’m not sure exactly what we did to pass the time. I know I was breast-feeding Annalise at that time, so several times I had to slip away in some random empty office (why don’t hospitals have a designated place for pumping/nursing?) to pump. It was nice that UVA had an update on the electronic schedule that we could follow on a TV in the waiting room. We could see when she went from pre-op to operating to recovery. It provided a lot of peace, in us and in the waiting room.

About 5 hours later, our doctor comes into the waiting room to see us. I am surprised – because I thought they would call us to see him. For a split second, I think he must have come down to bring bad news. But his smile alleviates my fears. He says that Annalise did well; the upper portion was removed; she was being moved to the recovery area; they did have to put a stint in the healthy ureter (they probably nicked it along the way), but nothing to be worried about; we could go up and see her. Really? I realize I had been bracing myself for the worst, but this seemed to be good news…right?

And so another person comes and escorts us the back way into the recovery room. And there I see my baby: another nurse is already holding her, giving her a bottle of Pedialyte. Annalise is awake, if you could call it that. Her eyes are barely open, and she is barely moving her body. It is shocking. I had never ever seen my wild child so lethargic. She is also swollen from all the fluids they had pumped in her. As soon as I walk in, the nurse hands her to me. Annalise feels like a dead-weight, but she is alive and well. Still hooked up to the IV pole and catheter bag, I can’t go far. But it feels so good to hold her in my arms. Never before had I felt more like a Mama Bear – not even when she was first born and they laid her on my bare chest. Annalise (and I) had been through such a traumatizing day, an unnatural one, at that. And now, I can be there for her.

The first moments we saw her after surgery

As I hold her, they wheel us into the pediatric unit. At this point, it is around 9pm. My parents come to see Annalise, and say goodbye. Jason helps us get comfortable in our new room, and then heads home to get a good night’s sleep. All three of us are exhausted. After finally getting to nurse, Annalise falls back into a deep sleep. I try to get comfortable on the hospital recliner, which automatically pops upright at the slightest move. Throughout the night, Annalise sleeps soundly. Several times, a nurse comes in to check her vitals, administer any medications, and empty her catheter bag. I know that Annalise is feeling better when at 6am, she wakes up, ready to eat! That’s the girl I know – too busy to sleep in!

Besides spiking a bit of a mild temperature and being a bit less active, Annalise went back to herself. She napped, ate, and played as normal as expected in a hospital room. It surprised me that she was so active after having surgery the day before! I could tell she was being careful of moving her abdomen or putting any pressure on it. By the afternoon, the doctors and nurses felt like she was well enough to go home, if we wanted. I was anxious to leave and return to the comforts of home. So, we got our discharge orders, and left the hospital with our baby – about 24 hours after she got out of surgery! The nurses were all sad to see her go, several of whom said they fought over holding her in the recovery room post-op.

At home, Annalise recovered well. She did spike a fever the following day, which the doctors said was normal. With only tylenol, Annalise was literally back to normal within 3 days after surgery. It was amazing, as good as the doctor had promised.

But there was a slight complication that needed to be dealt with – that stint in her healthy ureter needed to be removed in 2-3 weeks. And then we’d have the post-op check-ups to monitor her recovery. The biggest concern was that another surgery may be needed if they missed something. The first look at her kidneys would be 6 weeks post-surgery, which would be the beginning of the year.

The worst was behind us – the worst, meaning the hell-hole of the OR scheduling at UVA and the hours of waiting with a fasting and exhausted 8 month old. Now to deal with life after D-day.

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.