We sent out this update on January 8, 2015 - I forgot to post it on here.
Dear Friends and Family,
Yesterday, Mark and I went to Children’s National in DC for a second opinion. We had an ultrasound, we met with a Pediatric Radiologist, a Pediatric Urologist, and a Nurse Practitioner - all from the Fetal Medicine Institute.
The situation with her kidneys is pretty different than we had previously learned. Now that she is almost 28 weeks, she has grown and her kidneys have grown, and they were able to see more, in better detail. It’s a process.
First of all, Clara’s bladder, which was cone shaped and not completely detached from the belly button area where it started growing, is perfectly shaped and functioning as it should now. We are 100% convinced this is all God!! Prayer works and miracles do happen!!
As for the kidneys, Clara actually has two duplex kidneys. It pretty rare to have two. In a normal kidney, each C shaped kidney drains into one ureter and that ureter drains into the bladder. In duplex kidneys, there’s a top portion of the kidney and a bottom potion – each are separate from one another (although they are connected) and each has its own ureter. So, she has 4 ureters. **Attached are a few images if you are interested.
These kidneys function normally many times, but hers have a few issues. The top portion of each of these duplex kidneys is compromised (probably completely obstructed). The top portion of the left kidney is hydronephrotic (filled with fluid) because the ureter draining from that portion didn’t attach correctly to the bladder and it has formed a ureterocele (a bubble in the bladder – this we had known).
The top portion of the right kidney is also hydronephrotic and multicystic – and it’s most likely that this section has already stopped functioning. The urologist said it is possible she could recover some of the top left kidney function – but most likely none of the top right kidney.
Also, most duplex kidneys split in a way that the top portion is 1/3 of overall kidney function and the bottom portion is 2/3 of overall kidney function. So, even if she doesn't have any function in the top left kidney along with the top right kidney, she should have a total of 1 1/3 worth of working kidney tissue. This is really good news – because all you need to lead a full life is 1!!
Since I also have plenty of amniotic fluid (which the kidneys and bladder are now producing), he said that she should be in no immediate danger and they probably won’t have to start testing her kidney function until she’s 2 weeks old. She can probably stay with us as soon as she’s born, considering everything else goes well.
She will most likely have to have surgery – but the urologist said they will probably wait until she’s a little bigger, maybe between 4 & 6 months old.
She will also have to be monitored as she grows older to make sure her kidney function is enough to sustain her body as she gets bigger – but we are hopeful!!
She will need to go on preventative antibiotics as soon as she’s born because kids with duplex kidneys are more likely to get infections and have kidney reflux into the good part of the kidney, which could damage them further and the goal is to save as much kidney function as possible.
Mark and I both felt glad to get this information. It’s good news as far as we are concerned – since it could have been so much worse. We are praising God for this little girl and she is perfect, even though her little body has some issues. We cannot wait to meet her!!
As far as the overall pregnancy, I have a little too much amniotic fluid – which could be a symptom of Gestational Diabetes. I failed my glucose test and have been testing my blood sugar for the past 2 weeks to determine if I do have it. I should know soon. My blood sugar numbers are mostly good, but occasionally they are too high. A risk of having too much amniotic fluid is preterm labor, so we are specifically praying that I do not go into labor early.
We are also switching to a higher level hospital in the area for our family’s care. We toured the place and feel very confident that our family, especially Clara) can get the best care here – with plenty of specialists and more resources.
This is still a scary and uneasy time for us as each new test and each new doctor sheds more light on the situation, but we continue to fully trust God and lean on our faith. He is in control. We cherish your prayers and support, and ask that you keep them coming!!
With Love,
Mark, Katherine, Caleb, and Clara (coming this spring)
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