Dilated kidneys - x posted

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Postby hoping4another » Thu Jun 12, 2008 8:43 pm

jtsummers: Thank you for sharing the info, I actually did come across that site in doing my research as well. That seemed to be one of the most informative (and least scary) sites. You have such a beautiful (Gorgeous really.!!) daughter now and I am sure that she helps you to cope pain of your loss.....

I found out that our next appt in the cities is on July 1st, which is less than 3 weeks away. We will be meeting with a pediatric urologist at that time as well.. I talked to my nurse and I asked her for more details of the u/s findings and she was very happy to oblige... Pardon me if I get a little technical here..
She said that both of the kidneys were dilated to 8mm (anything over 4mm at 20 weeks is considered dilated)... At the time of our u/s, the doc said that they were "severely dilated"... however, most of the reading that I have found says that 5-10mm is mild, 10-15 is moderate and anything over that is severe... The more severe the dilation, the more chances of significant kidney damage....
The nurse said that both of the ureters are dilated, with the right one being markedly dilated (no measurements were given.. but I could see a HUGE difference with the right ureter on the u/s).
The bladder was of normal size and appearance... This part is good because if it was a blockage in the urethra, the bladder is one of the first things to be dilated.
The nurse also said that the amniotic fluid was in good supply.. this is also good too, because it means that even if the kidneys are dilated, at least one kidney is still working correctly to produce the fluid.
I have read a lot of situations that have had a distended bladder and low amniotic fluid that have made it (of course some have had severe complications)... but it gives me great hope that the bladder is not distended and that the amniotic fluid is still good. Our prayer now is that nothing gets worse in the next u/s, or that things start to improve...
I have even read that in cases of mild kidney dilation, that 75% of the time, it can resolve in utero.... (I haven't been able to find out if that happens in cases of dilated kidneys AND ureters yet....)
I felt a little better after hearing that info today..!
I just thought that I would share....
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Postby jesscc » Fri Jun 13, 2008 11:22 am

Thank you both so much for the information. It is very helpful and it feels good to have support, especially because I feel very alone in not being able to "do" anything. I am hopeful after reading more information - thank you both so much for sharing your information and personal stories. Again, I am so sorry for your loss, JT, and sharing your experience and knowledge is a kind and generous way to honor your son.

Please continue to update on progress. I will as well.
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Postby hoping4another » Sun Jun 22, 2008 12:36 pm

Thanks for checking in... I have been feeling good. We are just trying to pass the time until our next appointment (July 1st). I think we will really know then what to expect. The not knowing is really hard.
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Postby jesscc » Sun Jun 22, 2008 1:55 pm

Yes, thanks for checking in! I am doing fine, and the baby is growing properly according to my Dr.s measurements, but I agree: it's the not knowing that's really hard.

July 1st is coming up--please let us know how your appt. goes. I really hope it's good news.
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Postby hoping4another » Tue Jul 01, 2008 9:16 pm

Well, we just got back from MN.
Things went much better this time around. The amniotic fluid is still good, the baby's bladder is looking normal. The kidneys are still slightly dilated (right is 6.3mm and left is 7.3mm..... at 21 weeks they were both dilated to 8mm). The right ureter is extremely dilated, but the left ureter cannot be seen (which is normal... not dilated). Basically, the doctor does NOT feel that he has a bladder outlet obstruction, which is good, because those are the worst things to have when it comes to the urinary tract. He feels that he could have reflux, or a kink in the ureter somewhere. The doctor said that there is a chance that he could outgrow the reflux or whatever is causing the dilation. He also said that if he doesn't outgrow it, that the condition is treatable. We are supposed to follow up with another u/s here in 4 weeks, then possibly in Minneapolis in another 4 weeks. Both docs that we visited with today were much more positive and upbeat about our situation. We feel much more relieved and hopeful.
We also got some 3D pics of his face... he is beautiful!
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Postby jesscc » Thu Jul 03, 2008 12:13 pm

I'm so glad to hear the good news. It sounds really promising. Thanks for the update, and please keep us posted.

I still have a couple more weeks before my follow up. It seems to be taking forever (it's on July 18).
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Postby hoping4another » Thu Jul 10, 2008 12:14 pm

Hello!
Today is your appt, right Jesscc? Update us when you can....
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Postby jesscc » Thu Jul 10, 2008 12:55 pm

Thanks for asking. I was just looking at my post and I'd made a typo...my appt. is on July 16. I WISH it were already here, but finally I am in the home stretch to find out more information. So next Wed...I'll let you know what happens. Thanks for keeping in touch!
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Postby hoping4another » Thu Jul 10, 2008 7:11 pm

I will be thinking of you, and hoping that you get good news.
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Postby jesscc » Wed Jul 16, 2008 10:50 am

I went to my follow up u/s to see how the baby's kidneys are doing. Well, the news wasn't good, but it wasn't horrible. There is no improvement, and the kidneys are more dilated because they are larger, so the dilation has grown corresponding to the growth of the kidneys. The fluid is good. The baby is measuring mostly on track although the abdomen is measuring slightly behind. They will do a follow up in 6 weeks, when I am 34 weeks. The Dr. doesn't think it is a blockage, mostly because the pathways to the kidneys aren't dilated -it's the kidney's themselves. I wish I found this information positive at some level, but I don't. I am upset. I think I need to learn more about this condition in order to feel less afraid. I am worried about the kidneys, and worried about the abdomen.
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Postby hoping4another » Wed Jul 16, 2008 2:13 pm

Hello Jesscc,
I am sorry that you didn't get great news, but like you said... it wasn't horrible. Did the doctor think that it could be reflux or something like that? Do you have to visit with a pediatric urologist at all? That is actually good that the doctor doesn't think that it is a blockage because I have read that actually can be a worse prognosis. Did the doctor say what they were measuring at all?
I have heard more and more stories of people that this has happened to, and their babies have turned out okay. I am praying that the same is for you.. and I.
Thank you for the update and I am sorry that you are having a hard time with the news.. It is totally normal to be upset. I worry every day. The only difference with our situations is that we were expecting the worst case scenario based on our first visit with the doctor (he suspected that he had a bladder outlet obstruction.. or posterior urethral valve which can be lethal..)

If you haven't visited with a pediatric urologist... do you have the opportunity to do so? They may be able to give you more answers.
I am so hopeful that things will turn out okay for you.
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