Benjamin’s Bladder Exstrophy

✨I cried a lot yesterday ✨

I know sometimes it may seem like I have it all together. I’m a planner, an organizer, a person who thinks about all the possible outcomes and the solutions for each just in case the journey goes this way or that way. I’ve been that way for just about everything in my life.

Most of the time having that mindset works in my favor. But then there’s moments where life really kicks you in the butt and the plans you had just get dumped in the trash.

Moments like my anatomy scan with Benji. Thinking, “I’ve had two healthy pregnancies, this is no bid deal, just a routine visit.” Then to find out we were wrong about the gender of our baby along with he was going to most likely be born with a congenital defect.

Moments like giving birth to Benji. When my older kids were at school and I was at the hospital for another routine check up and then was rushed into induced labor. Forced to figure out a plan for my older kids while I mentally prepared to have Benji weeks early. And then on top of having a plan to give birth naturally, laminated birthing plan in hand for the nurses, I was quickly rushed into the OR for an emergency C-Section leaving my husband behind thinking he may walk out with just Benji.

Moments like yesterday when we’ve got a pile of medication for Benjamin and a plan for his recovery and he decides to be stubborn. So when your toddler is in pain and you’ve given him ALL the meds you can give, have pleaded with him and tried to explain the importance of listening and being still so he heals and doesn’t hurt, yet all he does is scream and cry… what do you do?

All the planning doesn’t prepare you for that. Listening to your son like that and feeling helpless because there’s nothing more you can really do. Feeling the mom guilt as you watch your baby, who doesn’t understand the surgeries, doesn’t understand the pain, doesn’t understand why he needs a catheter or can’t jump or climb or ride his bike. The exhaustion going into the next day because he was up all night with bladder spasms and you spent hours consoling him with songs and snuggles.

So what do you do?

Pray.

Pray when the plans come together and pray when they don’t. No matter what, keep on praying.

And as I sat on the couch praying to please give us some relief, my wonderful neighbor came through the door. She sat with us while I was snotty and teary eyed. Gave us comfort and encouragement and her kids were able to distract Benjamin long enough for the meds to kick in. Not to mention, another friend of mine took my older boys out for some much needed pool time. She knew our older boys were feeling stuck inside the house, not being able to do what we normally do (being good examples of rest for Benji.)

I’m very thankful for the friends God has given me. This BE journey is incredibly difficult sometimes. Most days are a breeze. I’m grateful that no matter if it’s a hard day or an easy day, Gods given me a village for support.

Thank you God for giving me so many people that love and encourage us and reminding me that I’m never alone.

✨4th day update✨

WE ARE BUSTING OUT OF HERE TODAY!!!! Benji will continue his recovery throughout the next month, mommy will take out his catheter next week, and he will have some activity restrictions for awhile.

So if you see him jump, run, crawl, or climb tell him to knock it off! 😅 Poor thing, that’s gonna be difficult for him.

He is doing well though; rarely in pain and just more uncomfortable than anything still. We’ve been able to manage the pain with just some Tylenol/ Motrin while using the Oxybutynin to prevent bladder spasms. He will also stay on the antibiotics until we take his catheter out.

His surgical site looks amazing! He’s healing very well with minimal swelling. We asked him what he thinks of it and if he’s satisfied and he gave Dr. C his approval. 🤣

We are ready to go home. Just waiting on meds and discharge paperwork and then it will be a 3.5 hour drive back to SE GA. 🏠 ✨

✨3rd day update✨

Benji is doing amazing. Very rarely in pain, sometimes uncomfortable. Who wouldn’t be after surgery in such a sensitive area? The catheter is really what’s bothering him the most.

Today he is allowed to walk and up his activity levels. He still needs to stay pretty chill; no jumping, running, climbing, etc. So we will need to tell his big brothers rough housing isn’t allowed for awhile.

He still hasn’t passed a stool but we aren’t worrying about that too much. We are keeping an eye on it and doing what we can to encourage a stool. In the past, bad constipation has led to more UTIs and a hernia, obviously we wanna avoid that.

He is excited to be able to get moving again. If he gets too rowdy though, we just reset him in his bed and use the brace. Since he will have activity restrictions for the remainder of the month, this is something we know we’ll have to continue.

Right now, the plan is to discharge tomorrow! I know Benji is ready to be home. 🧡✨

✨This Guy Right Here✨

Y’all… I could cry with how happy I am with “the cool doctor,” as Benjamin would say. When I tell you how amazing Benji’s surgeon is, I’m not exaggerating.

Dr. Crigger has been with our family since before Benjamin was born! Since about 30 weeks gestation, once we figured out the diagnosis and could research hospitals, we found our “home” with Dr. Crigger and Dr. Gearhart who originally started at Johns Hopkins Children’s Hospital in Baltimore, MD.

If you’ve followed us since the beginning, you know we had zero issues with traveling out of state for care. The #1 thing on our mind was getting the best care for our Benjamin with the best surgeons. Since we chose to complete a staged repair over the course of several years (some BE kids get an “all-in-one” repair) JHH was our best choice in our opinion.

But it wasn’t just the hospital we chose, it was the surgeons and the team involved.

So when Dr. Crigger told us he was moving to MUSC in Charleston, SC… we didn’t hesitate to follow him. Bonus- he was now closer to our home in GA; an easy drive in a few short hours!

We don’t just appreciate his knowledge and expertise in Benjamin’s congenital defect, we also agree with his progressive approach to medical care. We value his opinion on research in finding the cause of BE as well as how children move forward with their condition; long term care and how it affects them into adulthood.

But there’s something else that stands out with Dr. C that I’d say most doctors don’t have: patient and practitioner relationships. Dr. C treats us like family and genuinely cares for our Benjamin. No matter the circumstances, time of day, simple question or not, he’s there with a quick text or phone call. During clinic visits or surgeries and hospital stays, we’ve never felt rushed or have left confused. His support when things get tough, is unmatched. Whether it’s an insurance issue, medication question, or wanting to take a slightly different approach to a procedure, he’s gives support and answers. You can tell he puts his whole heart into his patients and that’s something you can’t put a price on.

Thank you Dr. Crigger for being an important part of Benjamin’s BE journey. We continue to pray for you as God uses you to heal so many children.

MUSC Children’s Health

✨ 2nd morning update ✨

If you know Benji, you can attest to him basically being feral. 🤣 This surgery hasn’t stopped him from trying to bounce off walls, jump on the bed, or climb couches to see the view. All things he’s NOT allowed to do.

Despite our best efforts to keep him entertained and still, he managed to rip out his epidural! 😩 What am I gonna do with this boy?

After speaking with the pain team and his surgeon, weighing our options and considering Benji’s personality, we decided to focus not so much on pain management but more so on limiting his ability to move.

Considering we’ve done this surgery before and his recovery did not go well, causing him to suffer wound dehiscence, I’m trying to be proactive. I don’t wanna focus so much on the past but instead learn from it. Some kids post surgery may have more issues with pain management but for Benji specifically I think he handles pain well; which is why he’s more inclined to want to move. We have to stop that.

Thankfully, Benji is NOT in any pain. Now that the epidural is out he does seem to have the sensation to urinate and I do believe he can feel the catheter. I can imagine how uncomfortable that may be, especially with the gauze and double diapers. But for pain it does seem the Tylenol/ Motrin is working.

The changes we made was to now have Va**um on hand just in case things go sideways pain wise. Or if he still manages to try and move, instead of sedating him the Va**um will help chill him out.

We also decided to give him a brace. While this isn’t the tradition novel brace that some kids get post Epispadias repair, it’s what the hospital had available in the middle of the night. Strapping him in and weighing it down with blankets does seem to help.

We noticed that sometimes Benji doesn’t mean to engage his lower body when he plays but with certain movements a leg will kick out, his pelvis will turn, or he will pike up. Obviously all movements we don’t want right now. The brace and weighted blankets will help keep his legs immobile while playing.

So far we’ve played with lots of playdoh, read books, played with toys we brought, bopped a balloon around, watched tons of tv, strolled around the hospital on a scavenger hunt, and later we hope to visit a therapy dog! Anything we can do to entertain him and keep his lower body still. Always changing it up as well so he’s not feeling bored for too long.

Im happy to still see a smile on his face though. He’s been through a lot. I hope when he’s older all this just seems like a dream, a distant memory, and he won’t be bothered by it much.

Thank you everyone for keeping Benji in your prayers as God continues to heal my baby boy.

✨another morning waking up to Gods grace✨

Sometimes when I’m feeling just a little bit lonely in Benji’s journey, God gives me a little wink in simple things like this. Look at this incredible view from our hospital suite!

I’ve always found beauty in nature and of course my Father knows that. Thank you, Lord, for always showing me you’re here.

✨1st morning update✨

We are exhausted. It was an incredibly rough night. While Benjamin’s surgery went well, there’s already talk about keeping him longer for pain management.

At home, he takes his prophylactic well and usually listens with very little issues in regards to checking for pain, fevers, and taking meds.

But he’s clearly not wanting to participate in any part of the recovery process. He’s being completely obstinate about taking meds which we try to persuade with juice, snacks, using movies to negotiate but end up having to force it. He also won’t be still, which is crucial for his recovery.

He currently has an epidural and is taking Tylenol/ Motrin and then Oxycodone as needed. He’s also on Oxybutynin for bladder spasms and Augmentin as an antibiotic to prevent infection, especially UTI.

Benji needs to be still though. While the epidural is in place due prevent pain sensation, he is still able to move his legs. He is not allowed to walk due to the surgery and we do not want another repeat of what happened 2 years ago during the same repair. So we are doing anything we can do keep him entertained and distracted.

We are thankful for Dr C and his team. They’ve put us up in a larger room with a breathtaking view to be able to watch the boats and Charleston, SC life. They are also giving us a wagon and all floor privileges to be able to roam the hospital. The nurses here are really patient… omg I don’t think I’ve ever seen a more patient nurse. They take their time with Benjamin, even when he’s being difficult, knowing he just wants to go home, which he says about every 5 minutes.

Thank you everyone for your support and prayers. It was a successful surgery which closed the glands of the pen!s and extended the urethra. They were also able to get rid of some scar tissue in the area which was preventing growth (he will still need a more cosmetic surgery in the future) This Epispadias repair will also help him gain more of a stream when urinating and help achieve dryness as his body grows.

Prayers needed right now… pain management… boredom management; keeping him calm so his body heals. We don’t want to take a step backwards in pain management but if we have to sedate him a little bit, we will.

Prayers for Benji. He’s upset and angry. It’s difficult to watch but we are pushing through knowing this is all what’s best for him. He doesn’t understand and that’s okay.

I’ll give another update this evening if anything changes.

✨Time for Surgery✨

Benjamin just went back for his second go at the Epispadias repair. Started a little late but that’s okay; more snuggles for mommy and daddy.

MUSC is an amazing hospital and we’ve been impressed from the start. One thing I love about them, is they allow a parent to walk back into the operating room with their child.

I got cleaned up, put on a silly marshmallow suit, a hair net and booties, and was able to carry Benjamin through the halls to where he’d be having surgery.

It’s a little thing, but being able to walk my baby back and help comfort him as he drifts off to sleep, means the world. It settles my mama heart, eases some anxiety, and gives me confidence that Benjamin was at least a little more comfortable knowing I was there the whole time. Not to mention seeing the operating room is just super cool in general.

Benjamin’s surgery should only take 2 hours and I’ll post updates when I can. 🧡✨