Our Journey with Hydronephrosis: It's Over (for good we hope)!

With all that's been going on lately I completely forgot to update with the best news we've received in a while: Juliette had her six month post op appointment last week after her surgery back in January and is officially in the clear (at least for a year)!!!

This is amazing news and we are so happy that this nearly 16 month journey is finally coming to a close.

Waaaay back in March of 2014 I was 4 months pregnant and sitting for what felt like my hundredth hour long ultrasound when my MFM made a comment that terrified me even more than finding out we were having twins: "We've talked about Baby A's distended kidney, right?"

Me: "Um, no. No, we have not. What (the eff) is a distended kidney?"

We wouldn't know anything for sure until after she was born and had her very own ultrasound. It might fix itself before birth, it might get worse, she might need surgery, it could mean a number of things, it could be nothing.

All I could think was, "Oh, ok, that's cool. As if being pregnant with identical twins wasn't scary enough, right?"

Fast forward to August 3, 2014, the babes are four days old and the Neonatologist on call comes rushing in apologizing to me. Apparently they just found out about her kidney and it should have been dealt with days ago. Someone left it out of my chart but thankfully my MFM mentioned it on a follow up call with them. I had completely forgotten about it too what with the whole c-section and NICU and twins. A rush ultrasound was ordered (THAT was fun to sit through with my brand new baby) and it was determined that Juliette had "moderately severe Hydronephrosis of the right kidney". She was immediately put on antibiotics for an indefinite amount of time and we were set up with a  Pediatric Urologist (Dr. Barry Kogan) for a follow up ultrasound and a Voiding Cystourethrogram (VCUG) to determine the severity. My girls weren't even home yet and we were already facing more doctor's appointments and possible surgery. Awesome.
 
The most basic definition of Hydronephrosis is swelling of the kidney due to a buildup of urine - that's the distension my MFM saw on the ultrasound. There are a number of conditions that can cause this to happen. Jules has a congenital blockage, meaning that the ureter that connects the kidney to the bladder grew twisted/kinked in a way that was not allowing proper drainage of urine. It can also be caused by kidney stones, UTIs, blood clots, scar tissue, enlarged prostate and even pregnancy. We don't know what caused Juliette's.

When they were four weeks old we left Viv with my mom and arrived at the hospital for the VCUG at 7am. They had no idea we were coming thanks to a miscommunication but managed to squeeze us in. My screaming, not yet supposed to be born, itty bitty baby was strapped to a table and weighted down with sandbags while a feeding tube (it was nice seeing one of those again) catheter was inserted. I was allowed to hold her hand and try to get her to take a pacifier while they filled her up with contrasting liquid and waited to see if her bladder was refluxing urine back into the kidney. She puked twice and peed all over everyone. Good news though: although the blockage was bad, it was not refluxing! Well, not exactly good news, it just meant further testing was needed.

At six weeks old we headed back to the hospital for a Nuclear Medicine MAG3 Renal Scan. This scan tests full on functionality of the kidney. We didn't have a babysitter so Mom, Dad and twin sis got to sit with Jules as she was again strapped and weighted down, this time with not only a catheter but an IV too! Thankfully she slept through the 1.5 hour long procedure. The scariest part about this day was hearing that she would technically be radioactive for 12 hours after the procedure and that we needed to keep Viv at least 3 feet away from her for that time. Read more about that adventure here.

A week later we went back to Dr. Kogan for another ultrasound and the results. We were hoping for good news but were told that her kidney was functioning at just 32% and likely to get worse. I asked Dr. Kogan what he would do if it were his child and he said he would definitely have surgery and sooner rather than later. So we scheduled it for a month later and prepared for yet another scary time in our girls' little lives.

On January 26, 2015 we arrived at the hospital bright and early and got our girl all set up for her Pyeloplasty. Dr. Kogan explained that he would simply make an incision, cut out the kinked part of her ureter, insert a stent to keep it straight and sew together the good parts. As scared as we were everyone was kind and gentle with her. Dr. Kogan has done hundreds of these surgeries with a 98% success rate so we were confident that all would be ok. The worst parts of that day were seeing her so puffy and miserable in the PACU after the surgery, dealing with the hospital stay and having to come home with a catheter and bag. Let me tell you, few things are worse than carrying around your sore infant and her bag of bloody piss praying to god you don't accidentally rip it out. Read more about that day here.

Juliette before and after surgery - note the IV in her head after they blew four veins in her arm and leg. Her industrial old-school hospital crib (actually made us miss the isolettes!) Her scar at 1 day and 3 months post op.

Four weeks later we were back at the hospital getting the stent removed. At this point Jules was just eight months old and had already spent more time in a hospital more than most people do in their entire lives. She's such a trooper though, handling it all with little more than a few tears.

Two weeks later I woke up to discover Jules had slept 12 hours straight through night for the first time ever. I knew it was too good to be true and sure enough she had a fever of 102. A visit to the Doctor and yet another catheter urinalysis confirmed she had her first UTI. Ugh. We started her on yet another course of antibiotics (heavy duty this time) and waited to see what Dr. Kogan wanted to do. We thought for sure that this was a major setback but her post-op ultrasound two weeks later revealed that all was well. Her kidney was healing! We learned that children are prone to these types of infections after surgery and stent removal and that we shouldn't be too concerned.

And finally, last week, we got the news we've waited 16 months to hear - her kidney looks better than it ever has. She may never regain full functionality but she's in the clear for at least a year pending no more UTIs. Her scar is healing nicely and should fade to a tiny line as she grows.

Before Juliette I had never even heard of any of this stuff so it was terrifying to say the least. Now that we've been through it I have some advice for families facing similar journeys:

If you're lucky enough to have an issue like this occur and surgery is deemed necessary - do it while they're still very young if it's an option. The difference between getting procedures and surgery done on an infant vs. a mobile older child is undeniable.

Having a good, gentle doctor is absolutely essential to feeling comfortable and safe when your child is being treated for something like this. Dr. Kogan is the best in the area and he is an absolute doll. He put me at ease from the moment we met him and did not push surgery until he found it was absolutely necessary. Juliette loves him and lights up when she sees him.

Educate yourself as much as you can on the actual condition and treatments but steer clear of the severe cases and personal anecdotal horror stories. I made that mistake and had myself so freaked out before the surgery, completely unnecessarily.

Whenever your child is put on an antibiotic discuss options for probiotics as soon as possible. I asked one of the NICU Doctors about this and was told they were unnecessary. Finally after battling her eczema with no relief I did my own research and discussed it with our actual ped and Dr. Kogan who both agreed she likely should have been on them all along, especially considering she was born via C-Section (read more about why that matters here). As soon as we started probiotics I noticed a change in her mood, sleep, bowel movements and her eczema completely disappeared. She started the antibiotics so young that we just thought she was a tough kid - turns out it was likely that her body was just a mess. Here's some more information and remember to always discuss anything you give your child with your pediatrician first!

There are many families that go through much worse health scares than this every day so I know how lucky we are. I am just so grateful that it wasn't as bad as it could have been. Thanks to the numerous ultrasounds I received it was caught early, monitored thoroughly and treated all before she was a year old. After the terrifying pregnancy, premature birth and NICU stay this was about as much as I could handle. We are very lucky.

And as much as I love Dr. Kogan I am very happy that we don't have to see him for another year. 

Thank you to everyone who prayed for us, sent us good, healing vibes and kept our girl in their thoughts through this whole ordeal! And fingers crossed the next time she has to have an ultrasound or set foot in a hospital it will be for her own baby!

Xo,
Maigen