On a seemingly normal night in December 2012, I was home with my two sons while my husband Will was at choir rehearsal. William was five and Noah was three-and-a-half, and we were preparing for bath time. Noah wasn’t feeling well and stayed in his room, which was not like him at all. The flu had been going around so I figured he must have caught it.
Noah couldn’t sleep that night, waking up every ten minutes and flailing in pain. Noah was still in diapers, which we were told not to be concerned about since he was a boy and our 2nd child. When my husband changed his diaper that night, he noticed that the area below his belly button seemed hard. He woke me up and said we should take him to the hospital. We headed to Pocono Medical Center, which was only ten minutes away.
An ultrasound was ordered, as the doctor thought he might have testicular torsion, but everything showed normal. I asked the tech to go down further to the area beneath his belly button that felt hard. “Oh…now I see it.” It turned out that his bladder and kidneys were full of urine.
Noah had to be transferred to a children’s hospital and was taken by helicopter to Janet Weis Children’s Hospital at the Geisinger Medical Center in Danville, PA, which was a 90-minute drive from us. Thankfully I was light enough to ride with him, which was one of the few times I was so GRATEFUL to be short! I couldn’t have imagined him riding by himself to the hospital and not being there with him.
My husband and William drove to the hospital to meet us there. The first thing they did was insert a catheter to drain the urine from his bladder. It took three times before it was inserted correctly, and Noah let out a blood-curdling scream that shook me to my core. Whenever I think about it, I can see and hear it like it was yesterday. They drained enough urine to equate to a full adult male’s bladder!
Noah was diagnosed with Posterior Urethral Valve Disorder, which is a congenital condition typical in boys, resulting in extra flaps of tissue in the urethra, preventing urine from exiting the bladder. If the bladder gets too full, urine can back up into the kidneys. The condition is usually detected in the first six months of life, due to re-occurring urinary tract infections (UTIs), which Noah never showed signs of.
Noah’s pain was caused by acute kidney failure and his kidneys were functioning at 10% when we took him to the hospital. We are thankful to the Holy Spirit for guiding us, because if we had waited until morning, Noah may not be with us today! We spent 6 days in the pediatric intensive care unit (PICU) while the infection cleared, and he also required a blood transfusion.
Once Noah was stable, we were discharged with the Foley catheter still in place, which is a flexible tube allowing his bladder to drain urine. Noah had outpatient surgery a few days later on Christmas Eve to repair his posterior urethral valves. The surgery went well, and I was so grateful for all the prayers, calls, texts, and Facebook messages and comments – they definitely helped me feel like I wasn’t alone.
Our Pastor called while Noah was in surgery to pray with me and that meant the world, as we attended a very large church! I also remember my college friend sending me the song “Healer” from Hillsong. I listened to that while I was in the surgery waiting room and it brought me comfort as well.
The surgery went well, and we were able to return home that afternoon to celebrate Christmas but needed to schedule follow-up appts with the Urologist and Nephrologist. I typically took care of the medical appointments since I am in the field. I enjoyed our trips out to Geisinger for his checkups as we were able to spend time together. I would often wonder how his kidneys doing, and how his labs values looked.
Noah’s bladder and kidneys were damaged from the three-and-a-half years of his bladder overworking and not fully emptying and backing up into the kidneys. The wall of his bladder was so thick, that he was unable to feel what was happening. About once a year he would have a UTI, requiring a hospital stay for a few days, as it affected his kidney function, and needed intravenous antibiotics to resolve it. We would know when he would be sick, as a fever was the typical indication. He even ended up in the hospital one time when we were on vacation in Florida.
We moved to Georgia on July 1, 2014, and we were so blessed to get connected with a great Nephrologist through Children’s Healthcare of Atlanta (CHOA) and a Urologist through Georgia Urology.
The longest stretch he went without being hospitalized was during the pandemic…and we are so thankful for that. We were extra cautious as Noah was at high risk due to his kidney condition, as he was also diagnosed with chronic kidney disease. Although his kidneys are damaged and compromised, thankfully, he doesn’t have any active disease occurring.
In October 2021, Noah had a UTI, but for the first time ever, he was able to treat it with oral antibiotics, which meant no hospital stay, but required frequent Urologist checks to scan how his bladder was emptying. He had to change from double voiding to triple voiding to ensure optimal emptying. The lowest residual he achieved after voiding was 11cc. I remember the Nurse Practitioner actually jumped up with joy when she got that reading as she was truly excited about him emptying successfully.
Exactly a year later, Noah started complaining of his back and side hurting. He had low-grade fevers for about five days but no UTI, and then his symptoms went away. His Nephrologist was out of town, but I kept her updated via cell phone.
Over a month later, Noah was at a friend’s house and didn’t feel well. He complained of pain in his legs and went to sleep in the middle of the day, which was unusual for him. He continued running fevers throughout the night, so the next day I reached out to his Nephrologist. I also noted his urine was cloudy, so we went in for bloodwork and a urinalysis. The next morning as I was getting ready for work, the lab results came in and his creatinine was 3.08, which was three times over the normal level, and twice as high as I can remember it ever being.
It was the day before Thanksgiving; I packed a bag as I knew he would be admitted. Noah was given antibiotics intravenously, and the next day the infection was discovered in his bloodstream! He was put on a different antibiotic that would be needed for five days. Due to low Hemoglobin, he was also started on Iron.
After being discharged from the hospital the following Monday, we had to return for his bloodwork testing a week later to ensure everything was ok, including his Hemoglobin. Unfortunately, his Hemoglobin was even lower, so he had to be re-admitted for a blood transfusion.
After his transfusion, he was discharged the next day after receiving education on Epogen injections to help produce red blood cells. He was excited to return to soccer and came back quicker than I expected but needed more rest breaks.
I was thrown for a loop at Noah’s next Urologist follow-up appointment. His bladder scan revealed way too much urine left in his bladder after emptying. He only went from 160 to 131 cc, even though he took his time and triple-voided! He informed us that Noah would need to start catheterizing himself at night due to the urinary retention because they would continue to damage his kidneys over time, and the goal is to preserve his kidneys as long as possible. When the doctor broke the news, I felt like I got hit in the forehead with a ton of bricks!
As I tried to process this new info, I inquired if this would be short-term or forever. The doctor couldn’t confirm but mentioned even with a transplant, he would have to continue because there would still be an issue with his bladder.
His Nephrologist had been cautious while discussing his kidney, saying it was too early to mention a transplant, and that only time would tell. Even though he was great and sensitive as he delivered this info, hearing the Urologist mention a transplant felt like I got run over by a Mac truck! I just kept re-living Noah’s blood-curdling scream from that initial catheterization ten years ago.
My head was hurting, and my husband wasn’t there because this was just supposed to be a routine appointment. Before we left the office, Noah was taken off one of his medications that was suspected to be causing the urine retention. On the way home I asked Noah if he understood what the doctor said. He wasn’t sure so I explained it all to him in a way he could understand. By the time we got home, I was numb.
I explained everything to my husband and we both wanted to wait and see how his bladder did after being off that medication. The Urologist thought an improvement was possible but unlikely. He assured us they would scan his bladder again when we came in for catheterization education, and if there was less than 50cc in his bladder after voiding, we could hold off on the cathing.
In God’s divine timing, it took a while to get the appointment scheduled – exactly a month, which was enough time to be off the medication. During that month we prayed that his bladder emptying would improve so the catheterization wouldn’t be needed, but if required, we prayed it wouldn’t be too uncomfortable and that Noah would handle it well.
At the appointment, Noah’s scan showed 278cc before emptying, which was more than ever before as he is usually in the mid to high 100s. He went to the bathroom and worked on emptying very well, which took a while to complete. When he was scanned afterward, he had (ARE YOU READY FOR THIS?) 5cc!! A single digit! He had NEVER been this low before.
Six weeks later at our most recent follow up, Noah had 6cc left in his bladder after emptying! We knew this was nothing but God, and we are believing the Lord that Noah will continue to empty well and no catheterization will be needed. I am still believing for a complete miraculous healing of his bladder and kidneys because God showed me that He still is working miracles today…just like he did in Bible days.
ENCOURAGEMENT FOR MOMS:
Don’t be afraid to share your story for multiple reasons.
First, you can solicit prayer and people will storm Heaven on your behalf because God desires to hear our prayers and answer us.
Second, there may be someone who hears your story that may have resources to help and support you.
Third, your story can give hope to someone else and bring them closer to God and/or come to receive Christ into their heart.
I often post on Facebook because when this all started, I remember being in the hospital room holding my sick baby boy and thinking, I need a way to get A LOT of people to pray but I didn’t have the time to call or text. The Lord laid on my heart to make a Facebook post that was read by so many people! They prayed and their comments were so comforting to me at that time!
As Noah grew older, I felt it was more personal and didn’t share as much. However, after that amazing testimony and praise report from his bladder scan, on our drive home, I told Noah that I had asked for prayers and shared that prayers were answered but I didn’t share specifics. I asked him if I could share the details on Facebook now because it could bless someone else and help them see the goodness and faithfulness of God and know that He answers prayers. I also assured him that if he was uncomfortable with it, then I would not post it.
He permitted me to share his story. Later during our drive, there was a commercial on the Christian radio station (TheFish) that we were listening to, saying we need to share our stories because they could touch someone else. Noah exclaimed, “Wow Mom, that’s just what you were saying!” That was God giving confirmation! Our children should know that their lives and their stories, which may include some trials, can touch others’ lives.
PRAYER FOR MOMS:
I first want to thank you for your love, your faithfulness, and your goodness. Even when we are going through tough times and tough seasons, you never leave us and are with us every step of the way. Thank you for your Holy Spirit that guides us to make the right decisions for our precious children. You have entrusted them to us, and we consider it an honor and privilege. We give you all the glory and honor for them and the mighty men and women of God that they will become because your word says that when we raise up a child in the way they should go, when they are old they will not depart from it (Proverbs 22:6).
Help us, Lord, to continue to look to you, trust in you, and put our faith in you when we feel like there is nothing else that we can do. We know that you are in control of it all and that ALL things work together for good for those who love you and are called according to your purpose (Romans 8:28).
Janet Weis Children’s Hospital (Danville, PA) https://www.geisinger.org/patient-care/find-a-location/janet-weis-childrens-hospital?utm_source=gmb&utm_medium=web&utm_term=&utm_content=&utm_campaign=kyruus_brandify
Children’s Healthcare of Atlanta (CHOA) – https://www.choa.org
Georgia Urology –
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