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.
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.