For weeks now, I've been wanting to write about what it's been like to have a growing baby, how each week brings with it different issues and concerns. One week we may be worrying about Diya not rolling yet only to worry the next that she won't f'in stop. Even when she's falling asleep and KNOWS (I mean, come on, she has to know) that once she rolls over, she won't be able to roll back and won't be able to fall asleep, so then good times for mom and dad dealing with a kid who suddenly takes FOREVER to put to sleep). Another week, she was pooping at night and sleeping through it, so I worried every time we woke up to a monster turd running up her back and through her sleep sack. The following week, we started waking up every time we figured she had pooped (she'd be up for like 10 min singing to herself before falling back asleep) and go in and change her. THEN the issue became that it took forever to get her back to sleep and we were all exhausted.
Every week brings something new, something scary, or something amazing and fun. I was going to write about all this, and how hard it is for me to not worry and how nice it is to have G who's just relaxed and comfortable. But then something happened this week that put all these issues to shame and made me feel silly for worrying about poopy diapers.
This is going to be a long post so you guys will have to bear with me. Because I hadn't yet told you the background. Remember how Diya got sick back in Dec? I don't remember how I left it back then. We were discharged, and they couldn't figure out what the problem was. The last thing they did was a CT scan and there, they found what could be an infection in the kidneys or what could just be smudge from the scan. They left it at that, but our pediatrician hasn't wanted to drop it. She's been worried from the beginning that there was a kidney issue involved, and she wasn't satisfied by the inconclusive test results. So she referred us to a urologist at Stanford's Lucile Packard Children's Hospital. They took forever to get our referral together (mostly because of the inconclusive tests), but our ped persisted and I think chewed them out finally because it wasn't getting done.
A few weeks ago, we went in for a follow up ultrasound, and the results weren't great. Honestly, I had been so busy worrying about rolling and her not sleeping well at daycare that I hadn't really thought too much about this appointment before hand. We didn't go until early Feb, and Diya hadn't gotten sick again all of Jan. So although I was initially freaked out by the unexplained fever, I slowly started to relax about it a bit.
And then we had the ultrasound. And the doc was pretty concerned. He was pretty sure that Diya had what our ped had thought all along, this condition called vesicoureteral reflux (VUR). What it means is that when Diya goes pee, her urine doesn't travel the way it should. Usually, urine goes from our kidneys to our bladder through these tubes called the ureters. In Diya's case, he thought that at least some urine traveled backwards through the tubes and back towards the kidney. So when she got sick, it was the bacteria from her urine infecting her kidneys. Unfortunately, ultrasounds don't really confirm that this actually happening. All he could see was that the ureters were very swollen. And this was an indication that Diya likely had reflux to some degree but there was no way to tell much. The severity of VUR depends on the amount of backflow and how far back up the ureters the urine is flowing.
SO -- we scheduled another test. This time, a catheter would be inserted up Diya's hoo-haw, and inject this contrasting material up there to visualize her urine flow. OK, so this is where it got fun. Even before he inserted the catheter, the radiologist did a baseline scan and had some news. So do you want to know a very effective way to ease parents' fears about their kid's kidney reflux condition. Tell them just before you start that the kid's right hip is dislocated, and I guarantee you that you won't even remember there is a kidney problem.
Yup, our kid's right hip is dislocated! And they randomly caught it while scanning her kidneys, bladder, and ureters. Apparently, it's not uncommon in babies, and they actually do a test with newborns. But it's easy to miss (some babies' hips actually click, I guess, signalling a problem; or one leg is obviously longer than the other). In Diya's case, they missed it because I guess she didn't have any clear sign. Though today, after hearing about the issue, one of her daycare teachers told us how she had noticed that when she tried to stand Diya up, one leg would stand firmly on the ground while the other one would dangle a bit. She had no idea it was an issue, just thought it was a peculiarity. We've probably noticed things like that ourselves (she always seems to reach the ground a bit better in her exersaucer with one leg over the other) but it never clicked. I hadn't even heard of this issue before yesterday.
So the radiologist told our urologist. After the radiology appointment, we headed over to discuss the results with our urologist. On our way over, Gregg and I fought over what the next step should be. He started reading about the hip condition (developmental dysplasia of the hip - DDH) and we started freaking out by the treatment options. I thought we should call our ped immediately for a orthopedist recommendation. He seemed to think some how one would call us based on the radiologist referral. I'm not sure exactly what he thought but we walked into the urology clinic snipping at each other.
It turned out it was all for nothing. Because our urologist had already shown the scans to a orthopedic surgeon in the same building. And she had immediately recognized the time sensitivity and squeezed us in for a last minute appointment. We were ushered from the urologist office to the orthopedic surgeon, who confirmed that yes, our kid has fairly severe dysplasia (BTW, if one more person points out that our dog also has hip dysplasia, I'm going to snap probably. Sorry, yes, I realize the coincidence and it is pretty interesting, I suppose, if you're not the one dealing with it all. But somehow, I'm not really in the mood to be appreciating coincidences of this kind right now).
So long story somewhat shorter, we had to bring Diya home in a brace. She now has this random harness contraption that holds up her legs bent in a 90 degree position. I'm not sure how to describe it exactly, it's basically like she's squatting all the time. She hates it. She'll have to wear it for at least a week at which point we'll probably have surgery. The doc said that sometimes the harness alone will take care of it but to not count on that. We'll go back next week to see if it took care of it. If it did, then she'll keep the harness for a few months to hold the hip socket in place and wait for it to develop normally. Now, the joint is completely out of the socket and the pelvic bone hasn't developed properly. But more likely is that Diya will have to have surgery. Actually the chance of the harness working is so slim that at first, the doctor only suggested the surgical option. We knew about the harness from our phone research in the parking lot and asked. And she agreed that it was at least worth a shot. If they had caught the abnormality at birth, the harness might have worked. So the surgery is already being scheduled. If by some miracle, the harness works, then great.
Anyway, I'm going to get into the details of the surgical options in my next post because it's late. And last night, Diya woke up every 10 minutes because she couldn't sleep with the harness. So we're tired and ready for bed. But after surgery, Diya will have to have a cast for several months and probably a brace after that. Although they say that most kids get through this and catch up developmentally very quickly after, it's not going to be pretty in the short term. And being the masochist I am, I found some support groups online with people whose kids have undergone multiple surgeries because the hips kept getting out of joint or their kids were older when it was discovered. If it's not caught at birth, it's not a condition that's noticed until a child starts walking and has a limp when doing it. We're lucky it was caught now, because after the first year, the chance of surgery being successful gets slimmer and slimmer.
But best case scenario, Diya should be down to at least just a night brace by her first birthday. Well, real best case scenario will be that the harness works, but I'm not holding my breath. I'm angry and frustrated and scared now to ever go to the doctor again for fear that they'll unearth some other condition in my poor little girl. I'm sad that she was just starting to roll and now can't because of this harness and the cast that's coming. And I'm super po'd that the best case scenario is her being pretty immobilized for the next 5 months.
And oh, yeah, the catheter test also confirmed that she does indeed have medium-level VUR.
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