a few updates

So the last few weeks have been a bit crazy, and clearly nothing I set out to do has happened.  No updates, no new blog for the baby, no fiction posts.  But everything is still coming, I swear.  And things haven't been as crazy in the "oh my god, my kid just had hip surgery" department as I'd thought.  More, it's just been life crazy.  First, about a week before Diya's procedure, I crashed my car.  As in totaled it.  Thankfully she wasn't in it.  So there was that to deal with.  Then , there's just been general hip distraction.  When I do have free time, I seem to be spending it online reading about other people with hip kids.  Then there was work.  I'm working part time at home for a couple of weeks, started last Thursday.  It's kind of cushy now, but wasn't last week when I was trying to finish stuff before taking off.  And you try getting any work done with an 8-month old around.  And there's this crazy messy, what-the-hell-do-hoarders-live-here, house.  This week, I've been trying to clean and FINALLY be done with the move already.  It's slow going because hello, 8-month-old in the house.  Oh, also Gregg is out of town and Bandit chose this week to spiral downwards again.  (I'd tell you more about it but really, all you have to do is go back through old posts, like maybe the entire month of Dec and just hit repeat).  All in all, it's been a rough few weeks. 

Diya's cast is actually bearable. I mean, I'm not planning a lifetime of it or anything.  But she doesn't seem that put off by it.  Never really did.  She came home, and pretty much as soon as the anesthetic wore off, she was her usual cheerful self.  What does suck is that it's a definite pain in the ass for us.  Diaper changes are the worst.  A couple of days in, she had a monster poop that ran EVERYWHERE, down her legs, up her belly.  The problem though was that we couldn't reach everywhere. Wipe after wipe went in and came back poopy, even half hour/45 minutes into cleaning this mess  We ran wipes starting from the top of her belly through the cast, catching it down on the other side, and swept back and forth.  We turned her onto her belly, only to realize that once we turned her back, we had basically caused a bunch of poop to run back to the front (meaning we had to re-clean the front).  I think we spent close to 45 minutes cleaning everything up and used a tub of wipes.  And really, I mean "we" because it was a 2-man operation, with one person ready to go in with another wipe as soon as the other was out. 

This week, she's constipated, and while I feel terrible (she cries when she poops and struggles SO hard to get one little hard turd out), I'm also relieved.  Is that being a bad parent?  I know it's because she's finally starting to eat solids (we've been trying for a couple of months now with little interest on her part) and her body is still adjusting to digesting something other than breast milk.  A part of me wanted to cut the solids for a day or two to give her a break and shake some turds loose, but the thought of runny poopy while Gregg is still out of town convinced me not to.  Instead, I've been giving her more food than ever.  Now THAT is being a bad parent, right?

Sleeping is also a bear these days.  She likes being rocked but it's hard to get comfortable for all now.  I've been breaking my back this week because suddenly she doesn't want to go down at bedtime without me rocking her for 45 minutes straight (and still won't always stay asleep).  I'm not convinced that this is cast-related as this just started this week (of course while Gregg is gone) and she's had the cast now for 2.  She screams when I try to put her to sleep, and oddly, when I even approach the crib with her, as if she knows what's coming and hates it.  Which is just strange.  I worry that I'm hurting her somehow when I rock and now she's had all these bad associations with the crib and sleeping.  But then she sleeps fine once she's out, and she'll even hang out in there after she wakes up, perfectly content.  So who knows.  Maybe she's just being difficult for Mom since Dad's the one who usually gets bedtime duty. 

What else . . . she doesn't fit into any of her gear.  Car seat (we have a loaner from the hospital that doesn't feel as safe as our regular one and just isn't that portable so we can't really move it in and out of the car), stroller, high chair, exersaucer, basically all the things we've used to keep her entertained.  But finding new things has been surprisingly easy.  We found a booster seat with no arms that lets her sit at our table and band the crap out of it with her toys.  And we got a beanbag chair that she doesn't really like but will sometimes sit in for 15-20 minutes if she has a toy to distract her.  The ERGO carrier still works, and now that I've been home, I've been taking more walks with her and the dogs.  And of course, there's always the lap. 

So yeah, really, I'm not counting down the days til this thing comes off, really, I'm not. 

and waiting . . .

Surgery is all done!  It went about as well as we could have hoped.  Our surgeon was able to do the closed reduction procedure with no tendon cutting or anything like that (so completely non-invasive).  Diya handled the general anesthetic well and woke up soon after they wheeled her into recovery.  She's been sleepy ever since (and hasn't been able to take a good nap with all the poking and prodding), but overall, things are looking pretty good.

The best part is that our doc told us that the hip was able to be positioned well and seems stable.  So stable that she thinks that we may be able to have the cast for just 6 weeks.  This wasn't an option that I thought was at all possible, so hopefully, now that they've dangled this carrot in front of my nose, it actually happens.  In most cases, as far as I've heard, Diya would have a 6-week appointment where she'll come in for a cast change.  So if we're lucky, it's looking like she might just get the cast off entirely when she comes in for that appointment instead of going under again and getting re-casted.  Fingers crossed.  She'll still need a brace and all that after, but at least that'll just take out 6 weeks from the total recovery time.

Right now, I'm waiting while she's getting an MRI to confirm that the hip has been positioned properly.  Only one parent got to go in, and before I realized what was happening, Gregg was already filling out the paperwork with his info.  It's probably for the best since I have my glasses on today and apparently, I'd have to take them off before going in there with her.  Since I'm blind as a bat without them, I'm not sure how helpful to Diya I would have really been.  It kind of sucks to be the one waiting cuz I swear, I hear her crying in there even though I'm in a different room entirely and can't be sure if that's her or some other kid or just a figment of my imagination.

AND another cool thing (dude, you know I'm beat when I'm classifying things that happen a hospital as "cool") is that we may be able to go home as soon as the MRI is finished.  Initially, we were planning to spend the night, but things have been moving along relatively well, so it's looking like we'll get to spend the night in our own beds.  Assuming the MRI results look good, I guess.

Also, we chose to have her casted in green in honor of St. Paddy's Day, but the surgeon decided to spruce it up a bit with swaths of pink so that she doesn't look too much like a frog.  Clearly, they were having fun in the operating room which is always nice to hear.  :)  I'll post up pics one of these days.  

Waiting

So surprise, surprise, the harness didn't work, and Diya's surgery is on as planned this morning.  She got taken back almost an hour ago, and Gregg and I are hanging out in the waiting room, well, waiting.  With a bunch of other parents.  Fun times.  The guy sitting next to me just called into work, saying he wouldn't be in for a few more hours because he's at "the doctor's with his son."  Hmm, isn't this something you should have done before the morning of surgery?  The lady on the other side of us has been angst-ing over the TV channel.  We happened to be sitting on one of the remotes, and us handing it over to her seemed to invite random conversation.  She persisted for a few minutes even though I'm staring at my laptop and Gregg's staring at his phone.  She finally seemed to get the hint, but I gotta give props for the attempt.

There was a bit of panic on my end this morning (just a bit) because Diya's had this lingering cough and cold for weeks, and I was afraid of her going under general anesthetic while still sick.  We were a little convinced that we'd show up only to be sent home and rescheduled.  But the anesthesiologist cleared her.  Though I gotta say, it's a bit of a show, by "clearing" her, all he really did was ask us about her symptoms and then listen to her chest for a few seconds.  AND he wasn't even a real anesthesiologist, just a random student.  God damn teaching hospitals anyway.  Do they really need to practice on my kid?  (Actually, he was a fellow, so I'm exaggerating, almost a real doctor.  And really, I'm all about teaching hospitals normally, but today I'm just looking for reasons to be nervous).

Diya seemed to take a little bit of liking to him, too.  By that, I mean, she wasn't screaming when he was examining her.  And he was the one that carried her away from us.  It was early.  They had told us that we could breastfeed her as late as 3:30 morning, so we woke her up to give her one more meal before the procedure.  Then we woke her again at 5:45 to get her here.  So first, she was curious about all the hospital activity, then just started getting tired and ready to go back to bed.  Whatever it was, she didn't really cry at all this morning (rare in a medical setting these days), and didn't even look back when the almost anesthesiologist picked her up and took her away.  

Now we just wait.

cautious optimism

Yesterday, we had another appointment with the orthopedic surgeon.  And things were . . . well, the news was actually all right under the circumstances (you know, the circumstances being that my kid has dysplasia and there's really no GREAT news these days until they can tell me that everything's all fixed).  But Diya got an ultrasound, and the doc thought that there may have been some improvement using the harness alone.  Something that none of us expected.  She's not sure because last week, we had an x-ray.  Yesterday, we got an ultrasound, and she said that comparing the two scans is like comparing apples and oranges. 

But she said that looking at the ultrasound, it doesn't appear as if Diya's hip is as far out of the socket as she had previously thought.  Whether this is because there's been improvement from the harness or whether the x-ray just made it look a little further out she's not sure.  So . . . she wants to try the harness for another week.  We're still scheduled for surgery on the 17th, and she still thinks that we're most likely to end up there.  But she seemed slightly more optimistic about the harness maybe working.  I know, it's still a lot of maybe's and possibly's and who-the-hell-knows.  But what I mostly took out of the appointment is that Diya's hip isn't as hopeless as we had initially thought.  And even if the harness doesn't work, she's a pretty decent candidate for the closed reduction.

Next week, we'll do another ultrasound and have a better idea of whether the hip is actually improving with the harness.  If they decide to stick with the harness, it's still not a quick road to recovery.  She'll stay in the harness for months and a brace for months after that.  But at least we won't be dealing with a surgical procedure, having to put her under, and a hard cast. 

So just more waiting and seeing now . . .

Prognosis

So what happens next?

Well, on Tues, we'll go in for another ultrasound to see if the harness that Diya has been wearing has helped at all.  Our orthopedist told us that if it's going to work, it will push the hip back into place pretty quickly.  If it doesn't (and she basically told us not to expect that it would), then we'll proceed with surgery.

I do, though, use the term surgery rather loosely.  It's not that invasive of a procedure.   Ideally, they'll be able to do what's known as a closed reduction.  She'll have to go under, but our doc will basically push the hip socket back into place.  Sometimes, a tendon may have to be cut or something like that, so if that's the case, she may have a small but deep cut.  And while she's out, they'll place her in a hard cast called a spica cast.  It'll start from her abdomen and go down to about her thighs, with an opening for diaper changes.  I've heard that diapering is lots of fun with the cast on.  The cast will hold her hips out, so she won't be able to fit into most of her clothes or gear (there's a  special car seat she'll need, her high chair won't be wide enough, etc). So a HUGE pain for parents, but I keep reading that most kids adapt quickly because they don't know any better.  I've heard that babies sometimes learn to crawl or walk (sumo wrestler style) with the cast on.  But it'll be harder to keep her entertained without the numerous hand-free gear we've started using with her during the day.  It'll probably be harder for her to sleep initially.  And the cast care sounds like a bitch.

Sometimes, the surgeon won't be able to do a closed reduction and will have to actually go in and have the hip  repositioned. This happens in cases where there is too much tissue in the way, so basically, the doc will have to go in and clean it out, so to speak.  To me, this would be the least satisfactory of our options (because everything else you know, sounds SO pleasant).  It can still be successful, but I think this is where most kids run into problems down the road, with the need for future procedures.  What also sucks is that we won't know how it's going to turn out until the day of.  The doc said she'll make every effort to do the closed reduction, and if she can't, she'll go for the open reduction while Diya is still out. Either way, Diya will come out of the procedure in a spica cast, so those good times are here to stay.

So I guess at this point, all we can do is wait.  Our procedure is scheduled for March 17th (exactly what I wanted to be doing on St. Paddy's day).  In the meantime, we have a follow up on Tues and can hope that Diya beat the odds with the harness alone.  She does seem to be adjusting to her harness already, although our nights have still been pretty terrible.  The cold isn't helping.  But during the day, I've caught her trying to roll over with the harness on.  And she's been more and more like her old cheerful stuff.  I'm sure that she'll start to love it just when we're ready to change things up again and restrict her movement further with the spica cast.

And then she'll stay in the cast for 6 weeks, go in for a cast change, and be in that cast for yet another 6 weeks (approximately).  After that, she'll probably get a brace that she'll need to wear (at first I think 24-7. and then at night only for some time after that).  I'm crossing my fingers and hoping that by her first birthday, she'll be down to (or at least close to) just a night brace.  All this assumes that everything progresses well along the way and that her hip begins to develop normally.  I don't know yet how long that process really takes or what to realistically hope for in terms for future x-rays and ultrasounds.

As for the VUR, not much to do but wait there also.  It's assessed on a scale of 1-5, with 5 being the most severe.  Diya's a Grade 3, right smack in the middle.  Not serious enough to warrant surgery, but we may have to wait awhile before it fixes itself.  It could be 2-3 years, or it could be 5.  But the urologist was pretty confident that it would get better on its own.  In the meantime, she'll have follow-ups every 6 months or so to see if there is slow improvement.  If there isn't, then we'll have to re-assess.  And in the meantime, we just have to hope that she doesn't get any more infections.  She's on a daily dose of antibiotics, so . . .

And there you have it, more doctor drama at our house.  I'm starting to think we may be able to build a medical drama based on our experiences alone.  What do you think?

Oh boy

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.