multicystic dysplastic kidney

The Good, Bad, and Ugly about Repeat Labs and Ultrasound

December 13, 2021 · Sweet Pea's Health

Disclaimer: I am not a medical expert. I am sharing my daughter’s kidney journey to document her story, share updates with family and friends and hopefully ease the mind of a parent going through a similar situation. Please read my full Disclosures and Disclaimers.

This is a continuation of our daughter’s multicystic dysplastic kidney journey. The beginning of her story is here and the first trip to the children’s hospital is here.

I wasn’t quite sure what to expect with the repeat labs and ultrasound but it was kind of the good, the bad, and the ugly. It started with the ugly.

The Ugly: Attempted Labs (Blood Draw #2)

We went in for another blood draw exactly 1 month after the Sweet Pea’s first set of labs (September 12, 2019), only this time in Bend. Knowing the experience of the first blood draw and not wanting our older daughter to see this, my husband stayed with our older daughter in the car while I took Sweet Pea in. There are several locations to do a blood draw in Bend and we chose this location based on where it was in Bend. That was probably our biggest mistake. The staff were unable to get a sufficient blood sample. There were 3 different people helping and poked her twice. The staff at this location told me I did everything right. She was hydrated and I had kept her warm. Her veins are just tiny. I wanted to scream, “Of course her veins are tiny! She’s 2-months-old!” We went home without the labs in hopes of trying the next day. The staff put in a request for the lab supervisor to give me a call the next day to find someone with more experience to do the blood draw. We will never go to this location for labs again.

The Good: Labs…Again (Blood Draw #3)

Now for a little good.

After waiting for a call from the lab supervisor and finally talking to her the following afternoon (September 13, 2019), she suggested we go to the Heart and Lung Center at the hospital in Bend to have blood drawn. That location had more experienced staff. What a completely different experience for us. My husband and older daughter stayed in the parking lot while Sweet Pea and I went in. They were expecting us, so we didn’t have to wait long. The blood draw was fast and efficient. Only 2 other people in the room besides Sweet Pea and I. They took a quick look to decide which arm to draw blood from, poked her once and got what they needed. I will absolutely be taking her back to the Heart and Lung Center lab for future blood draws.

Lab Results

A little more good news.

Four days later (including a weekend), I spoke with a nurse from the Pediatric Nephrology department at Doernbecher. Sweet Pea’s labs looked better. The nurse was going to have the doctor look at them and double check. If they’re good and the ultrasound is good, we don’t have to go to Portland and see the pediatric nephrologist until Sweet Pea is one.

Ultrasound #2

Sweet Pea is happy and calm at her 3-month-old ultrasound

Another good experience.

We went in for Sweet Pea’s second ultrasound about 2 months after the first (October 9, 2019 when she was 3 months old). This time, we went to a location in Bend (but not the same place we went for my third trimester ultrasound). We had another good experience. Sweet Pea did great. She cooed and “talked” to me the whole time. The ultrasound technician had me roll her on one side while she took pictures of one kidney and then roll her on the other side so she could look at the other kidney. They also looked at her bladder. Then the tech left the room for a little bit so she could look at the prior ultrasound (I love the sharing between doctors and locations, technology is awesome) to make sure she got all of the right pictures. Not being comfortable nursing our baby in front of strangers, I took advantage of the tech being out of the room and fed Sweet Pea.

Sweet Pea on her side for her renal ultrasound — On her side to get a look at her kidney

When the tech came back in, she got some more pictures just to make sure. I’m glad she double checked the first ultrasound. For me, it was better to spend the extra time while we were already there, rather than have to come back for a second ultrasound (or rather Sweet Pea’s third ultrasound). The ultrasound technician is not actually supposed to tell you anything. They are supposed to wait for the doctor to read the ultrasound photos and then get back to the patient. I very much appreciated the tech telling me a few things she found during the ultrasound. This gave me a chance to mentally prepare. As of this ultrasound, Sweet Pea still had at least 1 cyst on her right (good) kidney. The report from the previous (first) ultrasound said there were 2 cysts, but they only measured 1 of them. The tech (for the second ultrasound) could only find one this time.

Anxiously awaiting the Ultrasound Results

Two days after the ultrasound, I called Doernbecher Children’s Hospital in Portland. They confirmed that they received the ultrasound report and images the afternoon before (it took 24 hours for Bend to send them). The doctor had not looked at them yet. The lady I spoke with was going to have the nurses ask the doctor to look at them so I could hopefully get an answer before the weekend. Kind of sounds like a game of telephone to me. At this point, it was Friday (October 11, 2019). She said that if I did not get a call by Tuesday afternoon to call them back. It feels like lots of hurry up only to wait more.

The Bad: Going back to Portland

Later that same day, I heard from one of the pediatric nephrology nurses at Doernbecher Children’s Hospital. She had spoken with the pediatric nephrologist about our daughter’s ultrasound. (Yay! We don’t have to wait the weekend for an answer!) There were 2 cysts back in August (2019, at the first ultrasound). And there were still 2 cysts in October (2019). It did not appear that they had grown. They did not get measurements on both cysts back in August, the report just says 4 mm. In October, the report says 2 small cysts, 4 mm each. The pediatric nephrologist just wants to watch these cysts in the good kidney. They did not seem overly concerned.

However, her left kidney (the bad kidney) had grown because the cysts had grown. In August, they saw multiple cysts. Two months later, they saw just 1 really big cyst that measures 3 cm x 1.7 cm x 1.6 cm. Our baby was 3 months old. You can imagine a 3 cm long cyst inside her kidney. That is huge. They referred us to the pediatric urologist at Doernbecher. This made me panic a little and I hoped we could get an appointment with them quickly. At that point, it was a Friday, and we were supposed to wait for a call from the pediatric urology department. If we did not hear from the pediatric urology department by the following Thursday, I was asked to call them. So, we had to wait at least until Monday. What a worry filled weekend. It always seems like a hurry up and wait situation.

Surgery?

Talking to the pediatric nephrology nurse, they were going to see what urology said and at that time, they think Sweet Pea will most likely have surgery to have that huge cyst taken out of her bad left kidney. At this point, we did not know if the other cysts disappeared, and this one cyst just grew or what it was. It could have been much worse. The nurse implied that they would take out just the cyst and not the whole kidney. We would know more once we heard back from the pediatric urology department the following week. What a way to start the weekend.

Scheduling Appointments

So this all meant another trip to Doernbecher Children’s Hospital in Portland. Knowing that we were coming from Bend (a minimum 3-hour drive), they tried to schedule appointments with the pediatric urologist, the pediatric nephrologist (kidney specialist), all the labs and another ultrasound all on the same day. I told them it was okay to schedule the appointments on back-to-back days because we can make the trip 2 days long. We knew we would not be doing it all in one day anyway. I would rather not have to be at the children’s hospital 2 days in a row but it is what we can get.

We only had to wait until Monday to hear from the pediatric urology department. They got us scheduled for our appointments about the middle of November (no surgery yet). Another 10 days later, we got a little good news. We didn’t need to see the pediatric nephrologist in Portland on our November trip unless the pediatric urologist had concerns. Yay for one less appointment!

Stay tuned for my next post with how the trip to Portland and all of our appointments went.

Sweet Pea’s First Visit to the Children’s Hospital

March 2, 2021 · Sweet Pea's Health

If you missed the beginning of Sweet Pea’s kidney journey, you can read about it here.

At Sweet Pea’s 2-week checkup, our pediatrician sent in a referral to the pediatric nephrologist (kidney specialist). I was expecting to see the same doctors we met when I was pregnant but instead the pediatrician referred us to doctors at Doernbecher Children’s Hospital in Portland. Doernbecher is associated with and part of the Oregon Health & Science University (OSHU) campus. This didn’t surprise me as Doernbecher is the only children’s hospital in Oregon. What surprised me was that they wanted to see Sweet Pea at 1 month old, not 3 months old as the pediatric urologist had told me when I was pregnant. This made me worry why they wanted to see our daughter two months earlier.

The Drive Over to Portland

We had early afternoon appointments for an ultrasound and with the pediatric nephrologist scheduled on Monday, August 12, 2019. Not knowing how 5-week-old Sweet Pea would travel such a long time in the car (3 hours minimum from Bend to Portland), we drove over the afternoon before (Sunday, August 11, 2019) and spent the night in a nearby hotel. A trip to the children’s hospital is not how I wanted to take our daughter on her first overnight trip away from home. It wasn’t even our first family trip as we left my older daughter at home with my mom.

The drive over to Portland was not as bad as I expected. My husband did all the driving so I could sit in the backseat with Sweet Pea and keep her calm. She slept most of the way except for two stops to calm her down and feed her. It also gave me a chance to nap. While I missed my older daughter terribly, I am glad we drove over the day before. It was nice to have a relaxing morning before we had to be at our appointments rather than being pressed for time.

First Labs (Blood Draw)

We started off the visit to Doernbecher with drop-in labs as we wanted to get them out of the way before the ultrasound and appointment with the doctor. Labs were difficult. The lab technicians have a goal: “one and done” meaning they take their time with finding the vein and only stick the child once. Unfortunately, that was not the case for my daughter. They looked at her arms, legs and even her head but ended up sticking her in the arm. They had to do it twice because her veins are so small.

I was the one to help hold her down. Let me tell you that being the one to hold your child down so someone can stick a needle in her is one of the hardest things I have ever done. How do you explain to a 1-month-old that this is necessary? She just knows that it hurts and screams and cries. My husband was incredibly supportive and handed me things from our bags when I needed them. The lab technicians gave us these little packets of sugar water to drip either into her mouth or onto her pacifier to get her to suck and hopefully calm her. It helped a little despite her not really taking a pacifier.

Spoiler alert: We learned later talking to the doctor that she was probably a little dehydrated. We know for her next set of labs to make sure she’s very well hydrated.

They added a bag to collect urine (more on that in a minute).

First Ultrasound

The ultrasound was quick and efficient (especially since labs took longer than expected). I’m pretty sure we were late to that appointment because the labs took so long. Luckily, everything was on the same floor at Doernbecher and there is good communication between the departments. The ultrasound was mostly images of Sweet Pea’s kidneys and bladder. I remember the ultrasound technician telling us that Sweet Pea’s bladder was mostly empty. We were worried when we saw black spots in the good kidney but technician assured us that it was just the kidney functioning correctly. That was certainly a relief. She wasn’t supposed to tell us but she found a small cyst in the good kidney. I was glad to have this news ahead of the doctor’s appointment so I could mentally prepare myself.

Another spoiler: It was actually 2 small cysts.

Between the Ultrasound & Doctor’s Appointment

We didn’t have much time between the ultrasound and the appointment with the pediatric nephrologist. I’m glad we ended up doing the labs first as we would not have had time to do the labs between the ultrasound and the doctor’s appointment. Sweet Pea was hungry after the ordeal with the labs and her ultrasound. I wasn’t really excited about nursing our baby in the waiting area so I was happy to hear there was a nursing room. The nursing room was quite literally a storage closet with a single chair. At least it was private and my husband could be in the room with me (even if he had to stand and lean against the wall).

Meeting the Pediatric Nephrologist

Sweet Pea fell asleep when I nursed her before the appointment. Not wanting to wake a sleeping baby, the nurse took her blood pressure while I was holding her asleep. I remember her blood pressure being lower than I expected. When the pediatric nephrologist came in, she had a student with her. This did not surprise me as Doernbecher (and OHSU) is a teaching hospital. Both the nephrologist and the student examined Sweet Pea while I was holding her. I thought this was a nice touch to help keep baby calm.

They spent about half an hour with us talking about our daughter’s condition, possible complications and what to expect going forward. They asked about why she was born via c-section. We discussed Sweet Pea’s frenotomy that she had had 5 days before (August 7, 2019). Even though I fed Sweet Pea before the labs and after the ultrasound, the doctors still thought her mouth was dry and that she was a little dehydrated. They stressed the importance of keeping her hydrated not only for the tests but her health in general.

What is a frenotomy?

Frenotomy is the procedure in which the lingual frenulum is cut. It is done when the frenulum seems unusually short or tight (anklyoglossia or “tongue-tie”). In the newborn nursery, frenotomy is indicated when the abnormal frenulum is impairing the infant’s ability to breastfeed.

Ultrasound Results

They told us Sweet Pea’s kidney ultrasound showed that her right kidney is normal in size with no obstruction or hydronephrosis (swelling). Her good kidney may get larger since it is doing the work of two but this increased size takes several years. There are 2 small cysts (not one as we thought during the ultrasound) that need to be followed by another kidney ultrasound in 2 months. The repeat renal (kidney) ultrasound would need to be done when she is better hydrated to catch any evidence of hydronephrosis (swelling). If there is any swelling observed on the right (good) kidney then a VCUG is indicated.

What is hydronephrosis?

Hydronephrosis is swelling of one or both kidneys. Kidney swelling happens when urine can’t drain from a kidney and builds up in the kidney as a result. This can occur from a blockage in the tubes that drain urine from the kidneys (ureters) or from an anatomical defect that doesn’t allow urine to drain properly.

What is a VCUG?

A VCUG, or a voiding cystourethrogram, is a minimally invasive test that uses a special x-ray technology called fluoroscopy to visualize the child’s urinary tract and bladder. A VCUG can help: diagnose vesicoureteral reflux – a condition in which urine flows the wrong way, from the bladder back up to the kidneys. This is common referred to as backflow.

Blood Test Results

Sweet Pea’s blood test showed slightly higher creatinine which is one of the waste products in the blood to measure kidney function. The higher creatinine can be because of dryness so they requested a repeat blood test in one month when she is eating more and is better hydrated. We were happy to hear that this test could be done in Bend, no need to drive back to Portland.

Urine Test for a Newborn

So the urine test bag. Being a newborn, I can’t really ask her to pee in a cup. So they put this plastic bag with a sticky strip on one end stuck to her body in her diaper. We were in the room waiting for the doctor when I had to change a dirty diaper. Not thinking about the urine collection bag, I lifted her legs in the air with the bag still attached to the front of her body. This caused all of the urine in the bag to come out into the dirty diaper. I didn’t realize this until the nurse removed the bag and there was only drops in it.

Initially, the pediatric nephrologist requested that we do another urine test when we got home to Bend. The nurse thought they could do the test with the little droplets that were still in the bag. We waited for the lab to complete the test. Luckily, the lab was able to run the test with what remained in the bag and the test came back normal.

Appointment Results

The pediatric nephrologist said to keep Sweet Pea hydrated. We were advised to avoid using ibuprofen and all NSAIDS (nonsteroidal anti-inflammatory drugs) for fever or pain because of the high risk for acute kidney failure. Fever makes you dehydrated and ibuprofen makes the dehydration worse. Sweet Pea will get a repeat blood test in a month and a kidney ultrasound in 2 months. Depending on the kidney ultrasound and blood test results, they will order further tests and/or they’ll see her in a year.

Return Trip Home

It was a huge relief to be done with this day of appointments. We didn’t receive the greatest news and I was not looking forward to more blood tests for Sweet Pea. After a long day at the children’s hospital, we didn’t want to stay in a hotel and be away from home another night. So we made the decision to drive home at 4:45 pm. With rush hour traffic and a newborn who had a rough day and did NOT want to be in her carseat any longer, we made at least 6 stops on the way from Portland to Bend and we didn’t arrive home until midnight.

Check out the next post for how the follow-up blood test and ultrasound went.

The Beginning of Sweet Pea’s Kidney Journey

March 1, 2021 · Sweet Pea's Health

This is not at all where I saw this blog going. This is not the reason I started this blog, it’s not the way I wanted to share this blog but here it is for those who know and have questions and for those who don’t know, this is what we’re going through. Our youngest daughter, who we have nicknamed Sweet Pea, was born with a multicystic dysplastic kidney. This is the beginning of her kidney journey.

What is a Multicystic Dysplastic Kidney (MCDK)?
When was it diagnosed?
Maternal-Fetal Medicine Appointment
3rd Trimester Ultrasound
Birth of Sweet Pea

What is a Multicystic Dysplastic Kidney?

The first pediatric urologist we met explained it the best: multicystic means lots of cysts, dysplastic means doesn’t work, and kidney, well that’s a kidney. In layman’s terms, one of my daughter’s kidneys is basically full of cysts. In her case, it has zero function. She only has one functioning kidney.

“Multicystic dysplastic kidney is a common condition that occurs when one kidney doesn’t get put together correctly as it’s forming in the womb.”

Nationwide Children’s has a good explanation of what this condition is, how it’s diagnosed, how it’s treated, and common complications. Another good source for information is Children’s Wisconsin. It includes lots of facts i.e.: “Unilateral (one side) multicystic dysplastic kidney (MCDK) occurs in 1 in 1,000 to 4,300 babies born.”

Keep reading for our experience and feelings on having a child with a multicystic dysplastic kidney.

When was it diagnosed?

Short Answer: We found out about our daughter’s kidney at her anatomy ultrasound when I was 19 weeks 2 days pregnant (February 19, 2019).

The Full Story: We were in the process of moving from Newberg, OR to Bend, OR (about 3 hours apart). I already had to move the anatomy ultrasound appointment to a day when we were going to be in Newberg as I wanted to continue with my current obstetrician as long as possible before switching to one in Bend. My husband, other daughter and I were so excited to find out if we were having a boy or a girl. Some of my pregnancy symptoms and cravings led me to believe it was a boy. I had already reconciled in my mind that we were likely having a boy so imagine my surprise when we found out we were having a girl! I actually asked the ultrasound tech to double check. We were so excited to be having another girl that we didn’t notice that the ultrasound was taking a little longer.

After the ultrasound, we were asked to stay and wait for the doctor to read the ultrasound to make sure they didn’t need any additional images. I had an appointment the following day to discuss the results with a doctor, but I didn’t think much of this request. We were so excited for baby girl that we didn’t realize how long it was taking to read the ultrasound. I was very surprised when they cancelled my appointment for the following day and instead wanted us to meet with a doctor/nurse immediately. This is when they told us baby girl has a multicystic dysplastic kidney. I was in shock. I don’t remember everything that we were told or even if the person telling us was a doctor or a nurse. They referred us to a perinatologist.

What is a perinatologist?

A perinatologist, or commonly known as a maternal-fetal medicine (MFM) specialist, is an obstetrician who specializes in prenatal care of women who are at high risk of having a complicated pregnancy.

My appointment for the next day was cancelled and they scheduled me for an appointment with maternal-fetal medicine the next week. We went out to dinner but I remember still being in shock. I called my mom crying trying to explain what had happened. I told her, baby is a girl but her left kidney doesn’t work. The doctor/nurse told us I didn’t cause it, this condition is not genetic, and it’s fairly common (1 in 1000). No surgery as long as her right kidney works. And then, I pushed this information from my mind and focused on getting moved.

Second Ultrasound with Maternal-Fetal Medicine

We didn’t make it to the Maternal Fetal Medicine appointment the following week. A massive snowstorm hit Bend and we were snowed in. We didn’t end up meeting with a perinatologist until 3 weeks later (March 12, 2019 at 22 weeks, 2 days pregnant). We went back to Portland to NW Perinatology where I had another ultrasound and met with the maternal-fetal medicine specialist and a pediatric urologist.

What is a urologist?

A urologist is a physician who specialize in the genitourinary tract including the kidneys, urinary bladder, adrenal glands, and urethra.

During that 3 weeks we were in Bend, I met with an obstetrician who confirmed what I researched. At the time, there was no pediatric urologist or perinatologist in Bend. A perinatologist comes and does appointments once a month, that’s it. Not knowing whether or not I would need to have regular care, I decided to keep my appointment in Portland. I also wanted to find out if I could deliver in Bend or if I should deliver in Portland because of the need for specialists. I remember being confused filling out the paperwork for the appointment. The baby is the patient, but so am I.

Meeting the pediatric urologist

The pediatric urologist we met was awesome. He had great bedside manner and calmed any fears I had. He made it all seem like no big deal. Definitely something you want from a doctor, especially a specialist. He told us baby’s left kidney is full of cysts and doesn’t work but that the right kidney looks good. We want the kidney to look like meat or tissue but it doesn’t.

Multicystic Dysplastic (Left) Kidney at 22 weeks, 2 days gestation

In most cases, the MCDK kidney just shrivels up and goes away (however, this could take years). The good side will be a “mega kidney” (bigger than usual) as it does the work of both. It is already doing the work of both. The pediatric urologist usually recommends an ultrasound on the baby within the first 3-6 months of life to make sure the good kidney is still functioning. They don’t care about the bad kidney as long as it doesn’t grow. It is also unlikely they would need to remove the bad kidney.

In very rare instances, the cysts will get bigger (making the bad kidney larger), the baby/infant/toddler will have feeding issues and they will have to remove the bad kidney. The pediatric urologist we talked to said it had been years since he’d had to remove a dysplastic kidney. Most of the time, it shrinks and goes away. This was very comforting to hear that my baby likely won’t need surgery.

Recommended ongoing care from the pediatric urologist

In the event that the baby develops other associated conditions such as a urinary tract infection (UTI) or a kidney infection, then the pediatric urologist would investigate with additional tests to make sure the good kidney isn’t being damaged. Baby will get routine ultrasounds and meet with either a pediatric or adult nephrologist (kidney medicine specialist-non surgery specialist). There are no pediatric nephrologists in Bend so we have to either travel to Portland or have her see an adult nephrologist.

What is a nephrologist? What is nephrology?

A nephrologist is a physician who specialize in treating diseases of the kidneys. Nephrology, sometimes called renal medicine, is a specialty within the internal medicine field related to kidney care.

The pediatric urologist confirmed that there are no pediatric urologists in Bend but as he will just be watching the kidney until there is an issue, appointments with him can be done remotely. He does not need to be in the room when I deliver. This answered one of my big questions. Yes, I could have a normal delivery in Bend.

Handout from Pediatric Urologist showing a drawing of the kidneys, ureter and bladder. The handout also includes recommended care from the pediatric urologist. — Handout from Pediatric Urologist

No additional tests are needed when our baby is born. The pediatric urologist requested a 3rd trimester ultrasound and an ultrasound on the baby at 3 months of age. We will have the report sent to him and then talk to him over the phone. No need to drive to Portland. He said that children with one functioning kidney can have issues with that (good) kidney over time because it over works. They can develop high blood pressure and other kidney related issues (in adulthood). This is why it is important to get connected with a pediatric nephrologist.

The pediatric urologist also confirmed that a multicystic dysplastic kidney is not hereditary and I did not do anything to cause it to form. It just happens and I should not have mom guilt. This was helpful to hear (yet again) that I had not caused this for our baby.

Meeting the Maternal Fetal Medicine Specialist

I requested to speak with the Maternal Fetal Medicine (MFM) Specialist to ask a couple of questions before my appointment was over. The MFM specialist confirmed that I could have a normal delivery in Bend and that a 3^rd trimester ultrasound was recommended to see the growth of the baby and to look at the kidneys. I also asked about having a caesarean delivery. The MFM specialist definitely shot down this type of delivery but said I should talk to my obstetrician. I got a bad vibe from the MFM specialist regarding my question about having a caesarean delivery. I was grateful that I did not need to see this specialist again.

Third Trimester Ultrasound

I was nervous for my 3^rd ultrasound with our baby girl (May 21, 2019 @ 32 weeks 2 days pregnant). Not only was this my first (and only) ultrasound in Bend, I was worried what they would find with our baby’s kidneys. The pediatric urologist asked for this ultrasound to see how our baby’s kidneys are doing. We learned that our baby is still growing but so is her bad kidney. This scared me and I panicked a little. We had to wait until the pediatric urologist received the report and got back to us. I tried to take my mind off the worry and the waiting by unpacking my house (we had just moved). Thankfully my mom came to see my new house and to help me unpack.

We didn’t hear back from the pediatric urologist for 2 weeks. When we finally heard from them, they eased my mind but our baby’s condition hadn’t really changed. There’s still one good kidney and one bad kidney. They asked me to schedule an ultrasound for baby when she’s about 3 months old. I tried to schedule the appointment right after the phone call as I knew I would be lack of sleep after she’s born. The ultrasound place needed a birth date which I couldn’t give them as she hadn’t been born yet. So I had to wait…again.

Birth of Sweet Pea

Sweet Pea was born on July 7, 2019 at 39 weeks via a planned caesarean delivery in Bend. We decided it was best for baby and myself to have a C-section as I had a difficult birth with our first born and did not want to repeat the experience. That’s a story for another post but I will say that it was long and stressful on both myself and our daughter. We definitely didn’t want to put stress on our baby not knowing how this would affect her kidneys. This experience was completely different. My mom, sister and nephew came up to stay with our older daughter while I was in the hospital. The hardest part of the whole process for me was actually having to leave my older daughter over night (something I had not done before).

Keep reading here for the next part of our journey, our first trip to Portland to see specialists.