Benjamin’s Bladder Exstrophy

Benjamin’s Bladder Exstrophy This is our son’s journey with a rare congenital condition called Bladder Exstrophy, or B.E.

✨Who else uses the Owlet monitor? ✨We originally bought an oxygen and heart rate monitor for our middle son after he suf...
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 sp*ed 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.

Does your B.E. kid have sciatica pain? As a sports massage therapist, I am hyper aware of Benjamin’s movement and have t...
04/14/2026

Does your B.E. kid have sciatica pain?

As a sports massage therapist, I am hyper aware of Benjamin’s movement and have taught him about body awareness. At just 2.5 years old, he’s able to effectively tell me when something is wrong, describe how it feels, how bad the pain is on a scale, and knows many major body parts and their correct terms.

I knew early on he’d deal with muscular and joint pain due to the Bladder Exstrophy and as he’s grown, it’s clear.

What I’m seeing now, is most likely due to the pelvic osteotomy. You see, when a baby is born with B.E. it also comes with severe hip dysplasia. Even though Benjamin’s was fixed (remember during closure surgery all those pins sticking out of his body?!) he still has a significant bilateral external hip rotation.

What does this mean?

Tight glutes, tight hip flexors, tight ITB, weak medial thighs… just to name a few.

This also means more back pain, knee pain, and foot pain. With his feet he experiences flat footedness and pain in his big toe as he puts more weight and pressure on the balls of his feet. With his knees he has pain medially, on the inside because they want to bow in a little bit. And his hips and low back hurt due to the tension held there from shortened muscles of the glutes.

So how do I know he’s experiencing sciatica?

Well let’s go back to the communication skills I’ve taught Benji. He has zero problems telling me exactly how he feels. He says things like, “Mommy, my legs aren’t working,” or “I have ants inside of my legs.”

This usually happens when he’s been sitting, standing, or laying down for a long period of time. As his body loosens, warms up and blood starts flowing easier with movement, he feels better.

I’ve worked with clients as an LMT for almost a decade so it didn’t take long for me to connect the dots. Sciatica is one of the top issues in a massage therapists office and it’s essentially “easy” to correct.

The “ants” in Benji’s legs could be associated with the sharp, nervy pain when your leg falls asleep or is waking up. Same with when he says “my legs aren’t working.”

For those of you who deal with sciatica, does all this sound familiar? Do you also have externally rotated hips or do you “duck walk?”

So what am I doing about it?

MASSAGE of course! And thankfully Benji is comfortable with a sports massage, dialed down for a toddler, with scraping, KT tape, assisted stretching and light PT exercises that his PT/ OT gave us.

Thank you Lord for giving me the knowledge to not only work on amazing clients over these past years but also allowing for the opportunity to work on my son and help him on an every day basis. Thank you Lord for this opportunity to bring education like this to other parents who are possibly experiencing the same thing so they may in turn help their children. God, you are so so so good. You always provide and you are always faithful. Amen. 🙏🏻

02/26/2026

Most kids born with BE will not be able to stay dry for awhile. Some stay in a pull-up style undie up into middle or highschool or until specific surgeries can be performed. Every BE kid is different, even with potty training, but the timeline is about the same for most. So, knowing that Benjamin would most likely have a difficult time with this and need to be in special underwear possibly into the teenage years, why bother with potty training now?

✨because I’m a mom that at least wants to TRY✨

✨because I’m a mom that encourages my kids to TRY✨ with almost anything. Sports, music, art, academics, etc… if my son tells me he’s interested in something and is serious about trying, giving it their all, taking responsibility and pushing through even when it’s hard… I will be right there with them. I like to say I’m raising sons with no limits.

Now of course, don’t be silly, I’m not allowing my elementary sons to jump off the roof, onto the trampoline, and into the pool BUT as long as they aren’t a danger to themselves or others and there won’t be a loss of life, limb, or eyesight… I’m pretty much like, “whatever, go for it bro!”

This mindset as a mom for my sons has allowed them to gain so much confidence and independence as well as body awareness.

So with Benjamin and his potty training, I had the same attitude. If he’s showing interest, let’s do this! 💪🏻 ✨

When my eldest son was born I tried to do everything by the book; calendars, potty watches, a reward system, even letting him run around naked. I put so much pressure on him and myself and caused so much unnecessary frustration. With my second son, it was about the same until my husband, their step dad, came into the picture and helped me out. “Why not let them just p*e outside?” For some reason I may never understand, that got them going. This new, exciting way of going potty in a bush in the backyard somehow made it click in their brain of when to go and why it was important to go in a potty. Thank goodness!

But then Benji was growing in my tummy and we all know the story with that. Things were obviously gonna be different. I knew I wouldn’t be able to follow the same techniques.

Why? Um yeah his bladder had been inside out and exposed! Meaning he would have to have a closure surgery and pelvic osteotomy. To put it plainly, his pelvic floor would also be extremely weak. And let’s not forget the scar tissue involved. The UTIs certainly don’t help; I can imagine if it’s painful to urinate you’re not gonna wanna try.

But Benjamin is extremely smart and loves to be involved in just about anything his family is doing. And he loves to TRY anything. Using the potty was no different.

When he started to show interest in the potty we immediately got him a little plastic one from the store as well as changed out our seat in the master bedroom. And here’s what happened:

👉🏻he would follow and watch. he’d sit on the potty even though nothing really happened. we would have him go through the motions. pull down the diaper, sit, wait, wipe, pull up the diaper, flush, wash hands.
👉🏻we learned ASL for the words “p*e, p**p, p***s, potty, hurt”
Every time he’d go or when we’d change his diaper we would use the appropriate words so he could see and recognize the feeling of going. The word he used the most was “hurt” and this helped a ton as he learned other body part words. He would sign to me, “hurt p*e” or “hurt p***s” or “hurt p**p” before ever being able to speak those words. He eventually would start to say “hurt back” and I could then identify constipation or UTIs before other symptoms started to present themselves.
👉🏻yes, we let Benji p*e outside. For a boy I guess it’s just super fun. Again, something about being able to p*e in a bush or on the side of the house is super exciting.
👉🏻 we let Benjamin feel his p*e come out of him. This one might be slightly controversial but I always bring up how Helen Keller learned to speak. Sign language, feeling, repetition. Note I did NOT do this with p**p. As Benji sat on the potty I would sign “p*e” and have him touch as he went. I would say very clearly “wet.” And when he’d wash his hands I would repeat that the water is wet. Again, when he’d urinate he could feel while sitting on the potty that this wet feeling was coming out of a specific body part. As he sat more often, I would then demonstrate engaging his abdominal muscles. I would gently push on him to show him that he would have to use those to go p*e. Now, when he goes, you can tell that he’s making an effort to “push” and instead of leaking he has a small stream.
👉🏻 we left this all to Benjamin’s own timing. Some days he’s super stoked about going potty on the toilet every single time. Other days he doesn’t care or it hurts so it seems to be more comfortable to go in the diaper. We don’t push or force Benji to go.

✨overall it’s tons of encouragement, communication, and patience.✨

I’m super proud of my boy. I know it must be difficult and it hurts to go at times. But he’s a trooper and I’m glad that despite the surgeries and set backs, the painful UTIs, despite the looking and feeling different down there, he still tries. He may not understand the purpose behind it all now but as he gets older I hope all this work makes a basic human function easier on him.

✨Potty Trained Already?!😎🥳Well, he’s close! Does going p*e on the side of the house count? 🫠 Don’t judge, I’ve got three...
02/19/2026

✨Potty Trained Already?!😎🥳

Well, he’s close!

Does going p*e on the side of the house count? 🫠

Don’t judge, I’ve got three feral boys and sometimes when they gotta go, they do it out back! Any parent of boys I’m sure understands, and when there’s multiple, you know the younger ones just copy the eldest!

We knew Benji would have a difficult time being potty trained. Most BE kids spend the greater part of childhood not being able to stay dry. Even with being p**ped trained, going p*e in the potty is still a challenge. Even if it becomes easier to make it with pelvic floor therapy and surgeries, some BE kids still have issues with leaking.

We realize that Benji will have a lot of work to do but we’ve tried to instill good habits of practice anyway. About a year ago we set a goal to at least introduce the potty to Benji, get him comfortable on it, and try to communicate what’s happening to his body and how it feels when potty time happens.

Now, you probably think we’ve done all the usual things a parent would try when it comes to potty training. The sticker calendars, M&Ms as a reward, timers, just being naked (which would just be a disaster with a BE kid 😂) but no… we’ve literally done nothing but encourage and communicate on Benji’s own terms.

All the advice and what we knew about potty training with our older boys was thrown out the window when it came to Benji. And honestly, for him, it worked! Allowing Benji to just do whatever he wanted, when he wanted to, has worked tremendously and he’s now *mostly* potty trained for BOTH p*e and p**p at just 2.5 years old. Never in my life would I have thought we could accomplish this at this age even with a “normal” boy let alone a BE boy.

Way to go Benji! 🚽✨

02/16/2026

February is Full Term NICU Awareness Month

Did you know, 60% of NICU babies are born full term? While we think of a baby being in the NICU as perhaps being born premature, we often overlook the “fully developed” baby that still needs specialized care.

Whether it be for respiratory distress, infection, blood transfusions, or congenital defects, a baby born at 37+ weeks can still be sent to the NICU.

✨Full Term doesn’t mean risk free. ✨

While we didn’t expect Benjamin to be born via emergency c-section (a story that still traumatizes me to this very day) we did expect him to spend a few days in the NICU.

By Gods protective hand and will, we were able to learn about Benji’s congenital defect early on in pregnancy. Our ultrasound tech at the 20 week anatomy scan was able to detect the abnormality and that thrusted us into the journey we are now in today.

The weeks leading up to his birth required MRIs, many ultrasounds, extensive blood work, 1-2x weekly stress tests, televisits with out-of-state surgeons, and more.

A few things were clear: Benji would most likely be born with Bladder Exstrophy (the severity unknown until birth) and he would spend some time in the NICU (the amount of time also unknown.)

Benjamin was admitted immediately after birth due to his B.E. as well as respiratory distress and from swallowing my blood during the birth process.

He only stayed 4 days in the NICU and was actually discharged before I was! (Mommy had a lot of complications 🫣) Benjamin was born with classic bladder exstrophy and that meant his newborn care didnt require a longer stay. We still had to take extra precautions when caring for him, but it was all things we could do at home with ease. (Do yall remember us cutting up all those cling wrap squares? 🤣 )

I remember the NICU team being so kind and patient as I’m sure they are with all families. Their job is to keep these little ones comfortable, safe, and healthy all while witnessing the physical and mental stress of families. I will forever be grateful to those doctors and nurses that cared for our little Benji.

To all NICU teams, thank you for all that you do. And to all the NICU warriors, whether you’re there 1 day, 1 week, 1 month or longer … be strong, keep your faith, you got this! 💪🏻 🧡✨

02/10/2026

Benji LOVES cranberry juice! I think most people know by now how beneficial cranberry juice is for the urinary tract.

Since Benjamin has chronic UTIs, we’ve incorporated 100% cranberry juice early on in our B.E. journey. While it hasn’t been a cure, we do believe it’s helped flush his system with many UTIs as well as reduced pain during infection.

The pineapple juice has been an extra treat for Benji when we know a UTI is coming on. 1/2 a cup every day with a shot of apple cider vinegar during the weeks he’s not feeling his best seems to help. Again, this hasn’t been a cure for UTIs but it’s been helpful in about 50% of the ones we’ve noticed.

Why do we give pineapple juice over other juices?

Pineapples are high in bromelain, an enzyme that’s been known to break down biofilms. So when Benji is fighting a bacteria such as Providencia Stuartii, it gives his body a little boost to break down the gunk and flush it out!

I will say though, pineapple juice is highly acidic so we only use it on special occasions. Apple juice and pineapple juice still causes bladder spasms for Benji as well as pe**le swelling, so we don’t give it to him every day. We just give it to him in moderation when we notice a UTI coming on.

Benjamin still takes his prophylactic every night and just like with anything, what helps one kid may not help another. Sometimes his medicine works and sometimes it doesnt. Theres been many times where he seems to be getting sick, we push the juices, increase water intake, encourage rest, avoid people for a few days, and he gets better; medicine, food, and natural remedies worked. And then there’s other times where we seem to do all the right things but his body just couldn’t fight it off.

And that’s okay. We will continue to do what we know to take care of Benji and also continue to do our research to learn more!

February is Full Term NICU Awareness MonthDid you know, 60% of NICU babies are born full term? While we think of a baby ...
02/03/2026

February is Full Term NICU Awareness Month

Did you know, 60% of NICU babies are born full term? While we think of a baby being in the NICU as perhaps being born premature, we often overlook the “fully developed” baby that still needs specialized care.

Whether it be for respiratory distress, infection, blood transfusions, or congenital defects, a baby born at 37+ weeks can still be sent to the NICU.

✨Full Term doesn’t mean risk free. ✨

While we didn’t expect Benjamin to be born via emergency c-section (a story that still traumatizes me to this very day) we did expect him to spend a few days in the NICU.

By Gods protective hand and will, we were able to learn about Benji’s congenital defect early on in pregnancy. Our ultrasound tech at the 20 week anatomy scan was able to detect the abnormality and that thrusted us into the journey we are now in today.

The weeks leading up to his birth required MRIs, many ultrasounds, extensive blood work, 1-2x weekly stress tests, televisits with out-of-state surgeons, and more.

A few things were clear: Benji would most likely be born with Bladder Exstrophy (the severity unknown until birth) and he would spend some time in the NICU (the amount of time also unknown.)

Benjamin was admitted immediately after birth due to his B.E. as well as respiratory distress and from swallowing my blood during the birth process.

He only stayed 4 days in the NICU and was actually discharged before I was! (Mommy had a lot of complications 🫣) Benjamin was born with classic bladder exstrophy and that meant his newborn care didnt require a longer stay. We still had to take extra precautions when caring for him, but it was all things we could do at home with ease. (Do yall remember us cutting up all those cling wrap squares? 🤣 )

I remember the NICU team being so kind and patient as I’m sure they are with all families. Their job is to keep these little ones comfortable, safe, and healthy all while witnessing the physical and mental stress of families. I will forever be grateful to those doctors and nurses that cared for our little Benji.

To all NICU teams, thank you for all that you do. And to all the NICU warriors, whether you’re there 1 day, 1 week, 1 month or longer … be strong, keep your faith, you got this! 💪🏻 🧡✨

🧡2 years ago today!🧡We’ve come so far in this B.E. journey… from a 5 month old getting a major surgery that kept him sti...
01/26/2026

🧡2 years ago today!🧡

We’ve come so far in this B.E. journey… from a 5 month old getting a major surgery that kept him still for 8 weeks to a 2 year old who never stops moving and bouncing off the furniture!

Benjamin recieved his bladder closure and pelvic osteotomy two years ago this day. All Glory to God, we’ve come so far with His strength, His healing hand, and His faithfulness.

✨🍍✌🏻the good stuff 🧡Benji LOVES cranberry juice! I think most people know by now how beneficial cranberry juice is for t...
01/25/2026

✨🍍✌🏻the good stuff 🧡

Benji LOVES cranberry juice! I think most people know by now how beneficial cranberry juice is for the urinary tract.

Since Benjamin has chronic UTIs, we’ve incorporated 100% cranberry juice early on in our B.E. journey. While it hasn’t been a cure, we do believe it’s helped flush his system with many UTIs as well as reduced pain during infection.

The pineapple juice has been an extra treat for Benji when we know a UTI is coming on. 1/2 a cup every day with a shot of apple cider vinegar during the weeks he’s not feeling his best seems to help. Again, this hasn’t been a cure for UTIs but it’s been helpful in about 50% of the ones we’ve noticed.

Why do we give pineapple juice over other juices?

Pineapples are high in bromelain, an enzyme that’s been known to break down biofilms. So when Benji is fighting a bacteria such as Providencia Stuartii, it gives his body a little boost to break down the gunk and flush it out!

I will say though, pineapple juice is highly acidic so we only use it on special occasions. Apple juice and pineapple juice still causes bladder spasms for Benji as well as pe**le swelling, so we don’t give it to him every day. We just give it to him in moderation when we notice a UTI coming on.

Benjamin still takes his prophylactic every night and just like with anything, what helps one kid may not help another. Sometimes his medicine works and sometimes it doesnt. Theres been many times where he seems to be getting sick, we push the juices, increase water intake, encourage rest, avoid people for a few days, and he gets better; medicine, food, and natural remedies worked. And then there’s other times where we seem to do all the right things but his body just couldn’t fight it off.

And that’s okay. We will continue to do what we know to take care of Benji and also continue to do our research to learn more!

01/14/2026

My Bladder Exstrophy toddler does get sports massages and we do use tools!

During my time as a sports massage therapist, I’ve worked with many children but when it comes to babies and toddlers, I’ve just worked on my own kids. When Benji was born with B.E. I knew he would need a lot of massage and body work combined with PT and OT.

Since Benji has been an infant, he’s received massage from me. Whether it’s just for relaxation to aid him to sleep, comfort him during hospital stays or an all out baby sports massage, we get it done.

Each session is only about 5 minutes long. I know I’m his mommy, but we’ve still worked hard to establish communication and trust, especially when incorporating sports massage techniques like IASTM.

I truly believe the work we’ve done together has helped Benjamin in his body awareness and movement abilities as a toddler despite all the surgeries and hospital stays. I also believe the reduced scar tissue will benefit him in the future as he grows into a young boy and man.

Thank you God, for being the ultimate Healer and for giving me the knowledge and skills to help my son in his B.E. journey feel his best.

✨am I being punished?✨Someone I used to be very close to recently told me I was being punished by God; that punishment b...
01/13/2026

✨am I being punished?✨

Someone I used to be very close to recently told me I was being punished by God; that punishment being Benjamin and his condition.

Shocked into silence over this harmful statement, I listened as they explained that my son’s Bladder Exstrophy was a consequence for my wrong doings. After much pause and thought, I replied kindly that this person was wrong and proceeded to share the truth.

God does NOT punish us with our children. And he does NOT punish us by giving us children with physical or mental challenges.

Now, I can’t fault this person for thinking this way. I knew he was going through his own struggles and was perhaps still wounded by the ways I had hurt him in the past. As all humans do, I have sinned, I have broken hearts, I have betrayed, and more. Knowing this about myself, I have definitely had the thoughts creep in telling me I am being punished.

I have definitely struggled with the thoughts and feelings of, “What did I do wrong to have my baby be born like this? This must be because of (insert sin here) and God is punishing me for years to come, forcing me to watch as my baby suffers through ALL of this. I deserve this pain, I deserve this stress, I deserve the sleepless nights, for my sins of the past I deserve to feel this way but why has God allowed my baby to suffer like this?”

Those thoughts…. That’s satan trying to bring me down.

When I was pregnant with Benjamin, we knew of his condition. So these thoughts brought on a ton of anxiety and stress in a time that was supposed to be joyful. So, picking up my Bible, I searched for encouragement but more importantly Truth in God’s Word.

1. Psalm 139: 14

“I praise you, for I am fearfully and wonderfully made; wonderful are your works; my soul knows it very well.”

God created us all in His image, each of us with value and worth. Through His meticulous craftsmanship, He made each of us unique and special to serve a purpose here on earth. No matter our skills, challenges, so called weaknesses, or strengths, we can praise Him knowing that He makes no mistake!

2. Psalm 127: 3

“Children are a heritage from the Lord, offspring a reward from Him.”

Point… children are a blessing from God. He doesn’t give us children, whether carried in a womb, adopted, through surrogacy, etc to be a burden or to punish us. God tells us to be fruitful and to multiply, not just in the sense of spreading His Word but to build a family with God as the foundation and with that the family has joy and strength! Children are not accidental but are intentionally given by the Lord.

3. John 9: 1-3

“As He went along, He saw a man blind from birth. His disciples asked Him, “Rabbi, who sinned, this man or his parents, that he was born blind?”

“Neither this man nor his parents sinned,” said Jesus, “but this happened so the works of God might be displayed in him.”

-whoa…. Hold on for a sec because that one makes me tear up a little. It’s pretty easy to look at set backs in general, and then especially your child’s birth defect and think those thoughts I spoke about before. But we see here in John that Jesus denied the link between this suffering to personal or parental sin. Instead, it was permitted for God’s glory to be revealed through a miracle.

Later on in this passage we read that the man was then healed by Jesus.

Accepting that Benjamin was to be born with a congenital defect and that this was supposedly Gods purpose for him and our family was a hard pill to swallow. If you know me, you could just imagine me rolling my eyes like, “ugh, really?”

So, this took many days of studying in Gods Word, praying, speaking to counselors, and a ton of Trust in Him.

While the surgeries, procedures, and many emergency hospital stays have exhausted me, I no longer have the same fear, worry, or anxiety. I know Benjamin will be okay because he is in Gods hands. And I no longer wonder if this is some cruel punishment for me for my sins. I know it is NOT.

Benjamin, even with his congenital birth defect, even with all that we go through due to it, my Benji is a blessing. Like all my children, I thank God every single day for my sons. And I know that all of us have a purpose.

That’s why I created this page. Benjamin’s B.E. is just one way I hope to use Benjamin’s story to not only encourage families through Bladder Exstrophy and other congenital defects but to lift parents up in Gods Word and Glorify Him in the process.

✨hello 2026✨ Well, it’s been a tough year. No actually it’s been an amazing year… with some obstacles here and there. Bu...
01/01/2026

✨hello 2026✨

Well, it’s been a tough year. No actually it’s been an amazing year… with some obstacles here and there. But God is so good. He’s gotten us through it. Those challenges that we faced, they ain’t nothing against Gods plans for us! 💪🏻✨ and they just made us stronger!

What’s next for our Benji?

👉🏻what’s up with these constant UTIs?
-we are currently working with his surgeon/urologist to schedule tests to accurately determine if bacteria had colonized. also working on flushing his system; drowning out the crud. More water. More cranberry and pineapple juice. More ACV.

👉🏻surgeries?
-Yupp… we still need to get that Epispadias fixed but we need to get the UTIs under control first. We are looking at ureter reimplementation and possibly bladder neck augmentation.

👉🏻antibiotics?
-hopefully with a ureter reimplementation Benji can come off his prophylactic and only need antibiotics IF he gets sick with a UTI. And hopefully he can go months without a single UTI instead of getting several over the course of just a few months.

🧡 we will also continue to share Benjamin’s story of Bladder Exstrophy and do our best to encourage other families and spread the Word of God.

As always, we will also allow Benjamin to grow into the little boy he’s meant to be. No limitations. The things we do may be more difficult. He may face physical and even mental challenges, navigating his BE and the other things he’s developed, but we will always remind him to have Faith, God gives us strength, and through Him anything is possible. ✨

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