PEDIATRICIAN
We went with Granny and Papa to see the pediatrician in the morning. Compliments were flowing! Doctor said her growth was "amazing"...she is now 8 lbs 12 oz (up from 8 lbs 1/5 oz last week) and she is 20 1/2 inches long (up from 19 1/4 inches 2 weeks ago). Apparently breast feeding is going well! It's so hard to tell because you don't know how much she's getting, but it seems she's getting enough! She poops and pees a lot, which the doctor liked. Her color is good. She is active. Her eyes and ears and all the rest checked out. I felt great when we left.
PEDIATRIC UROLOGIST
Then we went with Papa to see the other doctor. I must admit, even writing about this makes me anxious and a little bit nauseated. The doctor was very matter-of-fact...no positive statements, no nice statements, nothing like that. He was all business. I didn't feel comforted at all and didn't like it. He looked at the films from her 48 hour old ultrasound. He showed me that there is urine in the left kidney, suggesting "reflux."
It seems that Allie has a faulty valve between the bladder and the ureters on the left side (yes, she has TWO ureters on the left side). This valve allows urine to go back up to the kidney from the bladder, and it's not supposed to. He said that in 80% of cases this resolves itself "within about 3 years" and that the baby is treated with daily oral antibiotics until it resolves. Antibiotics are supposed to prevent infection in the urinary tract and bladder. He ordered another test called a VCUG to see the extent of the reflux. If it is severe, he suggests surgery to fix the valve. If it is not severe, he suggests the antibiotics until the valve fixes itself.
He gave me a prescription for antibiotics but I didn't fill it yesterday. I'm conflicted. I don't want her to have to take daily meds indefinitely, but I also don't want her to get a UTI/bladder infection which could cause "permanent damage to the kidney" (who wants to hear that??).
I don't like the idea of having the VCUG done. It involves catheterizing her, injecting dye into her bladder, and seeing how much urine is going back into the kidney so they can assess the extent of the reflux. Doctor said it is not painful for the baby (more just "uncomfortable" when the catheter goes in) but is excruciating for the mother. I truly don't know how I'll get through that. I can't stand hearing her cry. I need to schedule it asap so I can get it over with. I will need support (and maybe valium!).
I can't help but want someone to JUST TELL ME WHAT TO DO. Do I get the antibiotics today? Do I schedule the VCUG now? I have asked my parents to tell me what to do, but they won't. My friend wisely tells me that this is one of the many decisions I have to make as a mother. I'm struggling, and it's only week 2.
I'm trying to hold onto all the positive stuff that the pediatrician said in the morning, and to put this in perspective. We will get through this kidney thing. Everything else is going well. (Right?)
10 comments:
Could you ask your pediatrician his opinion? I know he's not the specialist but maybe he can help with the emotional aspect and explain how baby might feel and how other mom's deal with difficult decisions?
I'm sorry you are in such a tough spot. I *think* I would want the surgery too but can't imagine dealing with it either.
You should do what your heart tells you, in conjunction with medical recommendations. But if it were me, I would do the VCUG because that will inform the decision about antibiotics. If it comes back negative, you might be able to avoid the daily meds, right?
Good luck with your decision.
Second opinions help a lot when one is conflicted and this sounds like this is the perfect situation for visiting another specialist, if possible.
I'm glad everything else checked out and am sorry that you're faced with such tough choices this early on. Hugs to you.
I have to agree with Pepper. Could you get a second opinion. This doc was not helpful to you at all and you were uncomfortable with him, that is reason alone for a second opinion.
Good luck.
I was going to mirror your friend's advice. We have many difficult decisions we have to make as parents...I would suggest doing a literature or journal search online about the condition and its treatment. Or expand out and get a second opinion, perhaps at a larger regional children's hospital, depending where you've gone for this one.
It does seem to go against what we are used to now, when Peds are less likely to give antibiotics for ear infections even, but your research may show that for this diagnosis, this is the more appropriate, lower intervention treatment.
I would consider the possible side effects of both antibiotic treatment, not treating her at all, and doing an invasive test and surgery.
Are the antibiotics mild as far as side effects? My Pedi had had us give probiotics to our son since birth, both in breastmilk and formula. Is that an option?
How often to kids without treatment end up with UTIs, as well as kidney infections and sepsis? Sepsis from a UTI can be very serious.
Does the VCGU entail general anesthesia? What are the risks to a child her age from that? What are the risks of the surgery? How often is it successful?
OMG, those cheeks! Allie is so adorable!
How come our parents love to tell us what to do but the minute you want them to they clam up?
I agree that a second opinion is a good idea. Especially since you didn't feel comfortable with the specialist that you saw.
I think I would do the VCUG so I would know how serious the reflux issue was. Of course that is very easy for me to say because I'm making it for a make believe baby and yours is very real (and cute!).
Follow your gut and you'll make the right choice.
Thanks for posting a picture. Allie is gorgeous!!
I agree with the advice you've gotten so far, particularly Mrs. Spock's. Please let me know if I can do anything. If you're stuck without someone to go with you to a scary dr's appt, etc. SMCs have to back each other up. (And I want to meet Allie!)
Just sending you hugs. You know I'm behind you all the way.
Allie is so cute!
Sorry for all this struggle you're going through.
She's so cute!!! Sorry that the pediatric urologist wasn't very good on the bed side manner. I hate to say it but often the specialists (and surgeons) aren't.
As far as the antibiotics, I can understand your hesitation. Maybe see what happens after the VCUG? I've been present at several of these procedures before. They can give the baby something like a sedative so that they are very calm and often sleep through the procedure. It's also usually fairly quick. I hope that the results are good. Hang in there. Hugs to you.
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