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March 2011 Moms
Magical95, devilbaby713, and Red_Dahila
Hi Ladies,
I belive all of us are dealing with our LO's having hydronephrosis how would you ladies feel about maybe putting together a support group of some sort... We could exchange emails, or create some sort of group on Facebook (like we did with this board)
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Re: Magical95, devilbaby713, and Red_Dahila
I wouldn't do a facebook group (I haven't done this boards one either) because I want to keep my privacy. I do think it would be neat if we could "check in" when we had news or problems etc. If anything comes up related to your LO's kidneys come to the board and either do a page like you did now or just say Kidney upate and I'm sure it catch our eyes. I would also do pm's, but I don't think I would give out my personal email address.
We went to our urologist today. He is such a sweet man and was sooo good with M. He changed our antibiotics to a sulfa based antibiotic because he says it will cover more types of infections. He also thinks the radiologist graded one of his kidneys wrong. We go back in 3 months for an ultrasound and another appointment. For you other moms would you care to tell your stories of how you found out about your babies hydrophenosis? I'll come back and write our story a bit later gotta go get M to bed.
I think its a good idea to check in on here periodically! DD's kidneys were a little dilated on the u/s right after birth, and at 1 week. We'll do another at 4 months. Her VCUG showed no signs of reflux, so we aren't on prophylactic antibiotics anymore. Pedi seems to think that everything will clear up on its own.
We found out that her kidneys were a little dilated at our 20 week u/s. We saw a specialist for level 2 u/s's every 4-6 weeks after that. We took DD to the ER at 3 days old because she hadn't urinated in 24 hours. She peed on the exam table and has been a peeing fool ever since.
DS born Dec 10, 2013
Sorry this response managed to get really long.
I'm up for anything
I'm on the FB group and on here. Feel free to message me anytime if any of you need anything. My situation of kidney issues as you all know covers both of my kids. My DD was perfect. Never had a problematic U/S during pregnancy, was perfect health at birth and was an awesome baby.
At 2 months old she started running a fever of around 101.5. My MIL thought I was overreacting and that babies sometimes get fevers. Well I was a ftm and was concerned so I called the dr and she wanted to see her asap. We went to the dr and she couldn't find anything wrong so she immediately sent us to the nearest hospital since her fever was still present and wasn't backing down. They ran a couple tests and feared it was meningitis. Her spinal came back normal so they did a urine culture and found a severe infection (it had turned into a kidney infection). They did a VCUG and discovered she had grade 2 reflux in her left kidney. We were sent to a urologist who wanted to monitor her. I got busy with raising her and taking care of being a young mom (I was 16 when she was born) and didn't follow up with her appointments as I should. She seemed fine and wasn't showing any symptoms of UTIs. Well late last year she got a UTI and we talked with her pedi and urologist and ran another VCUG and discovered she never outgrew the reflux. She still has grade 2 reflux in her left kidney and grade 1 in her right. After talking to the dr today he said based on the fact she isn't on antibiotics and isn't having recurrent UTIs the corrective surgery isn't necessary unless it starts becoming a problem.
When I was pregnant with DS around 20 weeks they noticed his left kidney was slightly enlarged and wanted to keep an eye on it. We would go back every 6 weeks or so to have another U/S to see how it was doing. Well at every U/S the kidney was getting bigger (more fluid than before). OB wasn't too concerned at the time and just said it is a common occurrence in babies and even more so in boys. Talked to my Pedi during my DDs annual check up and she was really supportive (I LOVE her!) and told me not to worry about it for now and to see what happens once he was born.
Before we were discharged from the hospital they had done an U/S and VCUG on little man and were supposed to send the results to the pedi. Well at the 2 week checkup they referred me to the urologist just to be safe. I picked up the films to take to the appt and thats when I discovered the test results (hadn't gotten a real result from anybody by that point). The U/S showed it was significantly enlarged (dx:hydronephrosis) and the VCUG showed no reflux. I had read the results while in the hospital parking lot. When I saw that he didn't have reflux like DD I cried. I couldn't believe it, it was a huge relief knowing everything my DD had gone through.
At 5 weeks the Urologist fit him in and was concerned with this left kidney and sent him for a Mag 3 renal scan and did an U/S in office. They discovered his right kidney was doing 55% of the work and the left was doing 45% of the work. So it was still functioning relatively normal. The scan also showed he had a definite blockage in his left ureter. We decided to hold off on doing anything and just monitor him for signs of infection and hope the blockage would clear on its own. Two months later (today) we went back for a repeat U/S at the urologist office and he compared the two sets of pictures. The kidney hasn't changed since the last appt so he saw that as a good sign. Also DS is a big boy (weighed 16 pounds at today's appt) so he knows he is eating well and obviously thriving. He gave us 2 options 1-Go ahead and schedule a surgery to remove the blockage or 2-Monitor it for a couple more months and see what happens. We discussed it and both agreed to monitor it for longer. We go back when he is 6 months old for a repeat U/S and see if the blockage has cleared.
I look forward to talking with you ladies more about anything and everything. I'm always here if anyone has any questions regarding my experience or if anyone needs someone to vent to.
Hi Ladies, Sorry for the delayed response... Posting on here works for me as well
My story is very similar to everyone else's... However I did find the everyone's story interesting, and informative. At the 20 week scan they discovered Lily's left kidney looked "full", at that point I was sent to see a specialist, he did another ultrasound and said that the left kidney looked "full" and the right one was also a little bigger than it should be... A few weeks after that, the right one was back to normal, but there was still an issue with the left one. After birth they did an ultrasound, and the left kidney still showed signs of hydronephrosis so I was told to schedule a VCUG, and was referred to a urologist. When Lily was a week old we took her in for a VCUG (worst thing EVER *so far*) Although I made sure to ask if they had performed a VCUG on someone her size and they reassured me that they had, they were unable to get the catheter in
Then we went to see the Urologist, this lady is great, and she makes sure we fully understand what is going on... well she had us schedule an ultrasound, and the VCUG at the children's hospital (not sure why this wasn't done from the beginning) so when we got the results back from that, the urologist confirmed that it wasn't reflux, and it was more than likely a blockage.... At this point she wanted us to schedule the mag 3 test, but I asked her if it was really necessary, she said because her case isn't "severe" we could get away with just another ultrasound... Our next ultrasound is scheduled for July.
Lily is a great "pee'er", she hasn't been on any antibiotics, and hasn't shown any signs of a kidney infection (so far)
***I know every case is different, but I must say that reading everyone's story has been helpful/reassuring/ calming... After the VCUG showed Lily didn't have reflux, I thought for sure she would have to have surgery...