Benjamin’s Bladder Exstrophy

06/09/2026

What does Epispadias look like? 👀😱 (males)

This… whenever I try to explain, this is the visual I usually give. Sorry guys! 😅 Thankfully (and I can only really speak for the males because of Benji and from talking to other men who have had the defect) it rarely hurts.

For Benji, he really only has pain when he’s experiencing a UTI or has had something irritate it, like sand- hence why we avoid the beach! 🏝️ 🙅🏻‍♀️

Normally a BE kid will get this repaired within the first two years of life. If done during staged repairs (like Benji) it’s usually done after the initial bladder closure. If repaired during a “one and done” surgery, it’s completed at the initial closure but may need some adjustments later on.

Benji had his original Epispadias repair done right before his first birthday in Baltimore, MD but unfortunately it didn’t go as planned. Benji suffered wound dehiscence at the glands. After speaking with his surgeon, and of course dealing with insurance, we ultimately decided to wait.

It’s time to get it fixed though. So, right before Benji’s 3rd birthday, we will be traveling up to MUSC in Charleston, SC for the redo!

We are praying for a successful surgery AND that it helps prevent Benji’s UTIs!

Want to learn more about Epispadias? Link in the comments.

06/06/2026

✨Psalm 139:13-14✨
“For You created my inmost being; you knit me together in my mother’s womb. I praise You because I am fearfully and wonderfully made.”

There’s a debate going around the internet right now…

An ongoing, decades long debate about abortion and now on the forefront of the internets’ mind because an influencer made the decision to end the life of their unborn baby. The child may have been born with Down Syndrome, after the results of their 20week anatomy scan, and the couple chose to not continue with the pregnancy. In defense to their decision he said the child wasn’t a “blessing” and instead would be “objectively sh***ty.”

Psalm 127:3 states “Children are a heritage from the Lord, offspring a reward from Him.”

My husband and I truly believe that our children are not actually ours. They are God’s and He has blessed us with His beautiful creation to love and protect and to disciple them. It’s an incredible privilege and responsibility.

And no matter what, they ARE a blessing. Ben Shapiro actually put it nicely when he commented on this debate. The Bible never says life will be easy and blessings are never promised to be sunshine and rainbows. Sometimes blessings are difficult. Sometimes they feel like they’ll break you.

And that’s when you turn towards your Father and Trust Him.

When I was presented with the results of our anatomy scan, sitting down in the hospital counselors office, being told of Benjamin’s rare congenital defect, so many thoughts ran through my mind. But not for one second did I think I may want to terminate my pregnancy. It was offered up to me and I immediately shot it down. Because no illness, no syndrome, no defect, nothing was going to cause me to want to give up my child. Even if I only had an hour with him, that would be a blessing.

Benjamin’s defect ended up being survivable but still being something he’d have to live with for the rest of his life. Many surgeries, hospital stays, a weak immune system, etc is all something we’d have to deal with. I’ll be honest, yes there’s times when it’s been incredibly inconvenient. I wasn’t able to attend my sisters wedding, we’ve missed out on several family functions, our other children have had to put aside sports for a time being, I even set aside my career to tend to Benji’s surgery schedule. And while it hasn’t been easy, its choices I’d make over and over again if it meant the wellbeing of my child. And the BEST decision was of course having Benjamin be born. He’s a huge part of my testimony and I’m actually grateful for this BE journey and how it’s brought me closer to God.

All in all, Gods plan is perfect. It may not align with what we think or how we think it should be done but His plan is always good, always perfect.

Having children with medical issues is never easy. But lean on God, Trust Him and He will guide you through it.

I pray this influencer couple learns from their mistake and will make better decisions in the future. I hope they find the Lords strength to carry through.

05/26/2026

“Where’s my Bladder?” 🤣✨- Benjamin’s new phrase when looking for his current best friend.

Let’s be real, Spidey/Spin is always gonna be his best friend but the bladder is a close second!

Thank you to my friend Alyssa for making this custom made, super soft and snuggly bladder (with kidneys!!!) stuffy for my Benji.

Not only does it serve as an adorable toy but also can be used for education. We had one made for Dr. C, Benji’s surgeon/ urologist to keep in case he wanted to use it in his office to make clinic visits a little more fun.

If any of yall live locally and attend the festivals in town, you can sometimes find Alyssa selling her crocheted stuffies! Be sure to check them out; they are SO CUTE! ☺️

Thanks again Alyssa! You’re amazing and we so appreciate your love and support for Benji!

05/23/2026

Some of yall have asked about our t-shirts and wanted to purchase one of your own! Emily from Emily's Divine Designs in Saint Mary’s, GA did an amazing job at putting together these super soft and light shirts for our trip and to raise awareness for Bladder Exstrophy!

We recieved so many compliments from hospital staff and other families who wanted to know more about BE and Benji’s journey!

Want a shirt of your own? Go to the link, in the comments, and it will take you straight to Emily’s shop. And she does ship!

05/22/2026

✨The Lord Heals! ✨

All glory to God… Benjamin is walking proof of Gods unwavering love, protection, peace, and healing.

While there was some anxiety going into this procedure (as I think any parent would have) we chose to put our faith and trust in our Lord. We know that everything will go according to His plan, good or bad.

Benjamin has had his fair share of debilitating UTIs, especially when combined with another illness like strep, RSV, or even just a common cold. We knew the main cause of his UTIs was the bilateral hydronephrosis, or urine reflux, and when exposed to another illness it would cause his body to exhaust itself fighting multiple issues at once.

Back in 2024, during another surgery, Benji had a VCUG done. We were able to see that his bladder had good growth for his age, despite the BE, and it could fill at a great volume without leakage. This gave us hope in the beginning that he could eventually achieve dryness. We also saw that he did have urine reflux or bilateral hydronephrosis. His Left side was at about a grade 2 and his Right side was borderline grade 3. We especially saw the grade 3 through ultrasounds when he had the UTIs that caused hospitalization.

Now, in 2026 through this VCUG, we saw improvement!!!

While we still don’t understand exactly why Benji has been so sick with UTIs, we did learn his hydronephrosis has improved. His left side is showing virtually ZERO reflux!!! His right kidney is still showing reflux but only when the bladder reaches full capacity and it’s a grade 2.

(Top photo in set is the Right side, bottom photo is the Left side… single photo image is the bladder neck opening)

His bladder is also smooth, strong, and the bladder neck is almost closed showing he may achieve continence as he gets older. This gives us confidence that instead of surgery, which is typical for a BE kid to stay dry, he may be able to go through pelvic floor therapy to strengthen the muscles and make the brain to body connection of holding urine instead of leaking.

Not only did this procedure provide results that taught us how Benjamin is healing and growing but also showed us there’s no need for a ureter reimplantation. Instead, we can focus on getting his Epispadias surgery fixed.

We are also very happy with his surgeons approach to the procedure. The medical staff were amazing and because of their progressive view on VCUGs, Benjamin has had minimal discomfort post surgery! Pretty sure he thinks he just had a heavy nap!

Overall, we are very happy with how this went and of course the results we found.

Thank you again everyone for all the love given to Benji throughout this journey. And of course to God for laying His hand on Benji and everyone involved in his care.

05/21/2026

🧡 Out and Resting ✨

Thank you Lord for laying Your hands on the surgeon, medical staff, and of course our sweet Benji. Your faithfulness, protection, and healing is ever present. 🙏🏻

Thank you everyone for your prayers and support. I will update in the days to come the results from his VCUG but I can say we are happy with what we’ve learned!

For now, Benji is resting. He’s still a little out of it from the anesthesia and will be taking it easy over the weekend.

05/21/2026

Prayers for Benji please 🙏🏻✨

Benjamin is all checked in for his VCUG here at MUSC Children’s Health in Charleston, SC! We are lifting his surgeon and staff up in prayer as they take great care of our Benji and help us figure out why Benjamin has chronic UTIs and at what stage his hydronephrosis is at. And of course praying Benjamin has minimal to no pain and discomfort during and after this procedure with no UTI that follows.

Thank you everyone for your continued prayers and support. 🧡

05/11/2026

Let’s Get Ready for Benji’s VCUG! 🩻✨

In a week, we will be headed to Charleston, SC for Benjamin’s first VCUG. This video shows a little bit how it will look for him. Because he’s so young though, he will most likely be put under for the procedure.

We have been patiently waiting for this procedure to be done. Hopefully, we can get some answers as to why Benji has had to fight through so many debilitating UTIs.

Thank you everyone who has been around us that’s been understanding and has kept some distance from Benji, knowing that even if he catches a cold, his body has a more difficult time also fighting a UTI. Now that it’s crunch time for his procedure, we’ve been extra cautious.

Not only are we anxious to get this procedure done, we are also itching to get back to in-service church!

Thank you Lord for watching over Benji as we continue to navigate through this journey. I pray it goes well and we get the answers we need to get further in his care and give him the tools needed to feel better more often. We know You are the ultimate healer and know You have Your hands on our little Benji. 🙏🏻✨

The team at Children's Mercy has described what an VCUG procedure is to answer your questions and help you prepare your son for their visit. If you need more...

04/21/2026

✨Who else uses the Owlet monitor? ✨

We originally bought an oxygen and heart rate monitor for our middle son after he suffered a febrile seizure at the age of 2. It gave us peace of mind for such a long time.

Knowing Benjamin would be born with BE, we knew we’d be using it again.

Bladder Exstrophy isn’t directly dangerous and we know by now most issues that arise from BE, while inconvenient and still stressful, are manageable.

Early on, Benji wasn’t dealing with Bladder Exstrophy like most classic cases. Not only has he had constant UTIs that have required hospital stays, but also surgical wound dehiscence, an urgent hernia repair, and most recently severe RSV and a febrile seizure.

If you know me on a personal level, I can be pretty particular in my care for Benji. NOT having the Owlet monitor has never been an option.

Nap times, night time, … he’s wearing it. If for whatever reason we are traveling and we can’t hook it up to WIFI, he’s sleeping with me.

Benji is getting a little old and some people ask why we still use it. Peace of mind… because you just never know. It wasn’t that long ago he had the seizure and that entire day he was PERFECTLY FINE. No indicators of illness, no fever, nothing yet he had a seizure randomly in the middle of the night.

This notification, the loud alarm that blares through the house and on my phone is the scariest thing. I’ve had a few friends see me speed race up the stairs when it goes off, dropping everything and waking Benji in his sleep, thankful to see it was just a false alarm.

I am very thankful for this monitor and Benji will most likely be wearing it for a long time. We even use our extra socks when our older children get very ill, alerting us to their low oxygen through bouts of pneumonia or RSV.

Whether you’ve got a BE baby or not, I will always recommend using a monitor for your newborn or child.

If you’re a little bit of an anxious mama like me, the peace of mind is worth it.