2 for 1: Not Always a Good Thing

This has been a bit of a whirlwind week. On Wednesday I had my bi-weekly appointment with my Maternal Fetal Specialist in Atlanta. Todd wasn’t able to make the visit with me so I took the opportunity to surround my doctor’s visit with coffee and lunch dates with girlfriends – a nice perk of going to Atlanta every other week. The appointment was long as Ms. Bridget was uncooperative and in a difficult position (she was breech with her head up by my right rib cage and her feet down low on my left side). So after a lot of waiting and prodding her to move, she final repositioned enough for the doctor to get the kidney pictures he needed. In a surprising turn the fluid accumulation in her kidney had dramatically decreased. The doctor hesitantly said he was “pleasantly surprised” and “pleased”. I pushed him for more information, but as usual he was reluctant to make any firm diagnosis. He said I would still come back in two weeks to continue being monitored but I left his office feeling good. Things seemed to be moving in a positive direction.

Yesterday Todd and I met with a pediatric urologist at Georgia Urology – Pediatrics in Atlanta.  They are connected with CHOA and Dr. Smith was one of the nicest doctors I’ve yet to encounter. He had a lovely bedside manner, was thorough, patient and kind. I think his approach helped keep my nerves in check as he explained what exactly is going on with our sweet girl and I’ll do my best to explain what he said. Unfortunately, the decrease in fluid wasn’t us moving in a positive direction as I’d hoped the prior day.

Bridget has a duplicated collecting system (also known as a ureteral duplication) and a ureterocele on the left side. So while each normal kidney has one ureter (the tube the carries urine form the kidney to the bladder), Bridget’s left kidney has two ureters rather than one.  And common with this condition is the occurrence of a ureterocele, which is an enlargement of the portion of the ureter closest to the bladder due to the ureter opening being very small (so in other words, that portion of the ureter closest to the bladder swells up like a balloon).  This obstructs urine flow into the bladder causing urine to back up the ureter toward the kidney.  Bridget’s ureter with the ureterocele drains the top half of the left kidney while the other ureter drains the lower half.  The doctor showed us on the ultrasound how the tissue on the lower half of the kidney looked like normal kidney tissue whereas the upper half of the kidney does not look normal.  However, he was clear that it is much too early to tell how much, if any, function the entire left kidney will have.

This is the picture the doctor pulled up to show what is going on.

So we are thankful that we know what we are dealing with and we are confident that we’re in good hands with Dr. Smith.  However, the diagnosis didn’t come with the best of news. This condition will require surgery, likely when she is 6 months old, if not earlier. She will start a low dose antibiotic the first few days after birth as this condition can lead to infection. Then at 2 weeks old we’ll go up to CHOA for some tests – an ultrasound on Bridget as well as a VCUG which is an X-ray exam of the bladder and lower urinary tract. Once they know the extent of the damage to the kidney they’ll decide what the surgery will need to entail and the goal will be to wait until she’s 6 months old for that surgery, with month to 2 month monitoring until it’s go time. Obviously, knowing our daughter will need surgery as an infant is a scary thought. I’m trying to concentrate on the fact that it IS fixable, but I’m having a hard time with that today.  This whole thing is making Julian’s helmet experience seem like a walk in the park yet at the time it was anything but, with lots of tears from yours truly. So I’m a little nervous how I will handle all this once it’s time for tests and procedures and tiny IVs putting my little one to sleep to be cut open. I’m having a hard time not getting ahead of myself with all this. Clearly.

And of course there are still some hurdles to get past over the next few months. For one, Dr. Smith told us that her right kidney is slightly dilated as of yesterday. It wasn’t dilated two weeks ago. We knew this was a possibility and the cause could be that the ureterocele is growing larger causing a blockage of the right ureter – meaning that the right kidney may not continue to drain properly. If this continues, my amniotic fluid level would go down and she would have to be delivered early.  This is the worst case scenario. He doesn’t seem to think this will happen, but he acknowledged that is a possibility, which is why I’ll continue going to the Maternal Fetal Specialist every 2 weeks. If this happens, I believe her surgery would be required shortly thereafter. And whenever she is born we will have to monitor her wet diaper output closely to make sure she is properly voiding. If she is not, this is a sign that the kidneys aren’t working/draining properly and intervention would be needed sooner rather than later.

So that’s where we are. As of yesterday I am 26 weeks along, and thankfully the odds of her survival even if she were to be born today are good, but we really hope the right kidney can continue to drain properly for a while longer so she can get bigger and stronger before she’s born.

I’m glad that we know exactly what is going on now. And even more thankful that it can be fixed once she’s here. I know in my head this is all positive news and we could be looking at something much, much worse. But it’s my heart that is having a hard time thinking of this little one having surgery so young. I’m sure she’ll be strong and able handle anything she has to endure; I just hope I can be the same.