Good news from the ortho

I have never in my life been so happy to say that I was wrong!!!
Juno's doctor was able to get us in this week instead of in two weeks (possibly because I called and begged....) and so we went in yesterday morning at 8 am for an x-ray.
Woohoo! Hip is still in the socket!!
I was surprised but absolutely thrilled to get that news.
Juno's hip is firmly in place, her socket is deepening nicely, and her growth plates are starting to catch up to the other side. Doc said the length discrepency I was noticing was below the knee and probably due to immature growth plates, but not significant enough to be a cause for concern. Her HD hip has great mobility and he told me not to worry about anything. We don't even have to go back until her birthday!!!
Thank you, thank you for all the prayers and good thoughts!

Prayers, please

Do you see that little darling walking across the room? You'd never know anything was ever wrong with her, huh?
Unfortunately, I'm worried that something is wrong. I noticed last week that her left leg (her HD leg) is noticeably shorter than the right. I've been checking regularly because I know it's a red flag--to check, I sit her against the wall and stretch both her legs out with her heels against my palm and her knees against the ground. Her left doesn't quite touch my palm and her knees are uneven as well. Today I called her ortho and talked to the physician's assistant, who scheduled an appointment in two weeks to do an x-ray.
We won't know what's up until we see the x-ray, but there is a possibility that her hip is coming out of the socket again--yes, even though she is walking. If that is what is happening... well... I don't even want to think about it :(
So please, pray for us and think of us!

a Christmas story

I want to tell you a story.

This story starts just over a year ago, the day after Juno was born. The pediatrician on call had just done her newborn examination and came to me with concerns about Juno's left hip. She said that it felt too loose and "clicked" when she flexed it, which could be an indication of a disorder called hip dysplasia. She urged me to call Primary Children's Medical Center and make an appointment for Juno to be seen by a pediatric radiologist and orthopedist.

I mostly shrugged it off. The doctor at the hospital wasn't our normal pediatrician, so I told myself that if our (admittedly crazy) pediatrican still felt it was an issue when he saw Juno a week later, I would call and make the appointment.

At Juno's one week checkup, our crazy doctor said he felt like Juno's hip was normal, but he trusted the pediatrician on call enough to agree that Juno should be seen by a specialist. He even set up the appointment for me, on Juno's one month birthday--they couldn't get us in before that.

Fast forward one month. I had pretty much pushed any worries of HD out of my mind. Juno seemed so normal that I couldn't imagine anything was wrong. I was sure that we would go to the hospital, do the ultrasound, and be reassured that we had a healthy, normal baby girl.

The day of the ultrasound arrived. I dropped Tempe and Helena off at my mother-in-law's house and drove to the hospital. As soon as I walked in, I knew in my heart that we wouldn't get any reassurance. I just knew that she had hip dysplasia.

I was calm as the radiologist did the ultrasound and showed me exactly what was wrong in Juno's hip. He seemed surprised when he showed me a picture of a Pavlik harness and I didn't bat an eye. It wasn't until I was driving home that it hit me. We were entering a realm of complete unknown (for us, at least) and it was scary. Adjusting to a third child was hard enough and now this?

I picked my big girls up and when I got home, there was an envelope taped to our front door. Between Juno and the diaper bag and Tempe and Helena clawing at me, I barely managed to make it inside and I just dropped the envelope on the couch and forgot about it. It wasn't until several hours later that I opened it. Inside was an unsigned Christmas card and a $100 bill.

I can't say how much that meant to me. Nobody knew that I was taking Juno to get her hip checked out that day. Nobody knew there was even a possibility of anything being wrong. I know that one of our wonderful friends and neighbors was looking for someone to serve that day and was led to us. I hope that I can always listen to the Spirit and be led to those who need a boost.

Merry Christmas.

{sneak peek}

Juno's first birthday party was tonight!

We had a great time celebrating her first year with our family.

Here's just a sneak peek of her Hip Hip Hooray! party. I'll be posting about her party all week!

Spica Tips

Today I was grocery shopping with Helena and Juno while Tempe was at preschool. Helena was in the car part of the shopping cart and Juno was sitting in the baby seat, both eating cookies and happy as a clam. Grocery shopping can be so easy sometimes! But then I started thinking about grocery shopping when Juno was in her cast and how not fun that was. In case you forgot, this is what her cast looked like:

Yeah. Her cast went up to her armpits and down to her ankles. She couldn't bend at all. Her legs were spread about as wide as they could go and there was a bar at her ankles. I figured things out, but it took a while, so I thought I should share in case anyone out there is looking for tips!

Shopping

I did my "big" fill-up-the-cart grocery shopping when Jason could stay home with Juno, but no matter how well I planned, there were plenty of times that we were out of milk, or dishwasher detergent, or diapers, or something else that just couldn't wait. So when I did have to take Juno to the store, I took our Boppy pillow and put it in the bed of the shopping cart and nestled Juno on it. When she was in her second cast (it was just on her legs, so she could bend at the waist, but there was still a bar holding her legs apart), one of our grocery stores had carts with a baby seat that was wide enough to accommodate her cast, so that was nice.

Feeding

When it was time to eat big girl food, I put Juno in a bouncy seat with a rolled up towel behind her to support her back (remember, she couldn't bend, and bouncy seats are sort of bent in the middle). Unfortunately, she really hated the bouncy seat. It was not comfortable for her, but with that stupid bar, she couldn't sit in any kind of "chair".

Playtime

Again, the Boppy pillow was great. She could either lay propped up on her back or on her belly relatively comfortably to play. And tummytime is a very important component of skincare in the cast, because it lets air circulate into the back of the cast, so you really need to find a way to help your baby be comfortable on their tummy.

Traveling

Our hospital provided us with a medical carseat--a Hippo. She used it with both her casts. It was such a blessing that our hospital had a loaner program. We were able to use the carseat free of charge as long as we needed it, which was great because it is crazy expensive. I've heard, but I'm not sure if this is true, that if your hospital does not have a loaner program, you can contact a car seat advocacy group and they can help you get an affordable one.

I posted about the stroller I used while Juno was in her cast here. She could also sit in an umbrella stroller when she was in her second cast.

Skincare

My biggest concern while Juno was in her cast was her skin. I had nightmares of her cast coming off and finding big sores and flaking skin all over her body. Luckily, her skin was absolutely fine when her cast came off! Not sure if my skincare regimen had anything to do with it, but maybe. I made sure to always keep her diaper area dry. That meant changing her pretty frequently--here is my Spica cast diaper tutorial. A blow drier is your friend!! I also tried cleaning her skin every once in while by using a wipe to reach down inside her cast as far as I could and then using the blow drier to make sure she was dry. Every morning when we got her dressed, Tempe and Helena helped rub lotion all over her feet and ankles and we would make sure the cast wasn't rubbing her anywhere. I found a few rough spots along her ankles and inside the cast and I covered them with extra moleskin.

Well, there you have it, all of my Spica cast tips! Can you believe it has been almost 3 MONTHS since Juno got her cast off? Wow!

Juno is 9 months old!

Can you believe this little cutie has been out of my belly just as long as she was in it??

Juno's been out of her cast for 3 weeks, and in that time she has learned that she can roll across the room to get to something she wants. She can turn herself in a circle when she's on her tummy, and she pushes herself up so high that I think crawling is right around the corner. She is getting better at sitting, but still needs a lot of support. When I hold her upright in a standing position, she bears weight on her legs for a few seconds at a time, but not constantly. That's normal for HD babies--I'm actually surprised she's bearing any weight at all! She does wear her hip abduction brace at night to stabilize her hip and probably will for a few more months.

Here's a list of things Juno can do now that she's out of her cast:

• 
  
  Sit in her bumbo seat


• 
  
  Swing in the baby swing outside


• 
  
  Ride in a normal carseat


• 
  
  Wear pants, leggings, tights, legwarmers, etc


• 
  
  Suck on her toes


• 
  
  Go swimming (although she hates it)


• 
  
  Sit in an umbrella stroller


• 
  
  Roll both directions (back to front and front to back)


• 
  
  Sit up


• 
  
  Ride in the baby basket of a shopping cart


• 
  
  Sleep on her tummy (which she prefers)


• 
  
  Take a bath!

Juno finally started babbling. I've been starting to worry because she has never babbled "bababa" or "dadada" or anything similar. But this week she started saying "mamama"! Yay! I know she's not talking about me, but I still like that her first consonant sounds were mama.It's crazy how many things the cast affected. You wouldn't think being in a body cast would have an effect on fine motor skills, but it did! Since she couldn't sit in any kind of chair with a tray, she didn't practice using the pincer grip very much. Now that she can sit in a bumbo seat and eat finger foods, her fine motor skills are improving. She's also just learning that flapping only one arm is "waving".
Not sure how much she weighs, but I'm guessing around 12 pounds. She is down to two feedings at night, one before I go to bed, so I only have to wake up with her once. Easy peasy. I've also started gradually weaning her--I alternate nursing and bottles of milk throughout the day.Finally, plans for her birthday party are coming right along. It's going to be absolutely adorable, so stay tuned!

my baby has {legs}

Well, yesterday was Juno's big day! After an open hip reduction, 6 weeks in a Spica cast, and 6 weeks in a broomstick cast, she is finally free.

This is Dr. Stevens. He's Juno's pediatric orthopedist. He works at Primary Chidren's Medical Center, but he also volunteers his time and talents all over the world. He's been treating disorders like HD, club feet, and bowed legs for over 30 years!
Juno did not like the saw at all. I don't blame her! It was so loud that I couldn't even hear her screaming. It must have been scary!

And here's my little frog!

After 3 months with her knees bent and her legs spread apart, she is incredibly flexible! She's also still pretty sore while her muscles adjust and change position. We're looking forward to seeing her discover all the things her legs can do in the next few weeks!

pink and purple striped girl

Can you believe 6 weeks has gone by since Juno's open reduction and Spica cast???

I can't!

But the calendar doesn't lie, and today Juno's Spica was removed and a new cast was put on. Her hips looked good enough for her to go into a different kind of cast--a broomstick cast. It's really two casts, one on each leg from thigh to ankle, held apart by a bar (or two, in her case!) Since it's only on her legs, she can wear normal diapers and bend at the waist! Woohoo! It's the little things that make me happy :)

Here's one last picture of her in her Spica cast. Jason convinced me that we should keep it, so I asked the doctor to save it for me. It actually doesn't smell bad at all--she doesn't sweat yet and we didn't have any blowouts during the 6 weeks she was in it. Right now it's in two pieces, but I'm going to tape it back together.

I was going to mark on her ankle at the bottom of her cast so that we could see how much she grew, but I forgot to. But I can tell you that she grew a lot.

And her she is in her broomstick cast! She's wearing a onesie so you can't see that it's only on her legs. It is so strange holding her without her big bulky cast. She's almost seven months old but she has no trunk control at all. It's like trying to hold a 3-week-old upright! I hope she gets stronger quickly and will learn to sit up soon. I think she will be much happier if she can sit and play with toys instead of laying on her back all the time.

So we've got 6 more weeks in this cast and then hopefully, that will be it!

tutorial: diapering a {spica cast baby}

When people see Juno in her Spica cast, the first thing they ask is "What happened to her??"

The second thing they ask is "How do you put her diaper on??"

It's really not as hard as it seems!

We use a size 4 diaper on the outside of the cast to hold everything in place. This diaper doesn't get dirty or wet, so we reuse it for several days until it starts pilling. When Juno is wearing a onesie, I don't bother with an outer diaper. You can also use a cloth diaper cover for extra cuteness (like this one)
At the hospital, they lined the edge of the cast opening with moleskin. As soon as we got home, I covered it with duct tape. Moleskin soaks up moisture, eww!! Duct tape protects the cast and is wipeable.

Pull the inner diaper out of the cast on the front.

After I pull the inner diaper out, I flip Juno over on her tummy and pull it out the back.

Toss the inner diaper and use a blow dryer on a COOL setting to dry off the cute little bum and any cotton batting that might have gotten wet.

Prepare the new inner diaper by tearing the velcro tabs off both ends and opening it up all the way. We use a size 1 for the inner diaper, which is what she would normally wear.

With the baby still on her tummy, start stuffing the new inner diaper into the cast. I start in the middle and push it up as high as I can.

Push the sides of the diaper in as far as you can go, spreading the "wings" of the diaper out. During the first few days, I made the mistake of not spreading the wings out and we had some leakage issues. But ever since I started spreading the diaper out more, we haven't had problems.

Tuck the diaper under the edge of the cast, all the way around.

Flip the baby over and tuck the front sides of the diaper under the cast, reaching as far as you can to each side. If your baby has incisions on either side, be very gentle for the first week until it has started healing.

Once the inner diaper is tucked in all the way around, close the outer diaper like you normally would.

We haven't had any problems with leaks and she usually wears the same inner diaper for 10-12 hours at night. We also have her crib mattress tilted up at one side so that the urine runs down into her diaper and not up her back.

Now, as far as dirty diapers go... so far, so good. But I have read that a wipe wrapped around a rubber spatula is GREAT for cleaning down the back of the cast!

open reduction

Today was a new experience for our family. It was the first time (and hopefully last, although that is a lot to ask for) one of our children has had surgery!

We checked in at Primary Children's Medical Center at 6 am and Juno was in surgery around 8. It took just under 2 hours. The doctor injected dye into the joint and was able to see that there was fatty tissue obstructing the socket and a short, thick tendon pulling the femoral head out of the socket. He fixed those two problems and then put a neon pink Spica cast on her. It goes from just above her belly button to her ankles with a thick bar holding her legs about as far apart as they can go.

Juno took a few hours to wake up (seriously, like 2) and is still really groggy and out of it. She's been asleep pretty much all day, except for eating. She only seems to be in pain when we move her, and I think that could be my fault because I am not very good at positioning her without pulling on her IV and all the wires stuck to her skin. But she hasn't been crying inconsolably like I thought she would after surgery! In fact, she even smiled, blew bubbles, and tried grabbing all the wires stuck to her chest.

The cast is big and bulky and awkward, but I think I will figure it out. It should be much easier when she's not connected to stuff. I haven't gotten a picture of it yet because she has been cold and so she's covered up with a bunch of blankets. I'll get one of her tomorrow and her very fancy carseat we get to borrow from the hospital!

Here is Juno's last bath for 6 weeks! I am going to miss those chunky thighs!
Our cute girl in her hospital pajamas.

Cuddling with Dad before the doctors took her back to surgery.

And here she is in the recovery room. She was pretty out of it.

Thanks to everyone who has been thinking of us and praying for us and offering to help! We appreciate it so much. Our friends, family, and neighbors are so wonderful! We feel truly blessed!

Spica dolls

Today I took Tempe and Helena (and Juno) to PCH for a surgery prep class so that we could all see exactly what was going to happen next week. It was so helpful and the girls really enjoyed it! My dear neighbor Joy is a Child Life Specialist at PCH and I told her we were coming today, so she put Spica "casts" (they're actually just bandages) on the hospital dolls that are given out in the class so that Tempe and Helena could see what Juno will be wearing next week.

Here are Tempe and Helena in their surgical gear with their hospital dolls.
And here's my sweet little baby with her Spica doll!
For me, it was so nice to get a walk-through of exactly what is going to happen next week and see where we will be spending the day and night. I still feel like I'm going to have a panic attack every time I think about it, but I feel a little better...

spica cast, here we come!

Today was Juno's Big Appointment with her orthopedist.

If you don't remember, last month we found out that Juno's hip had regressed and we put her back in the Pavlik harness in a last ditch effort to avoid the Spica.

Well, it was a valiant effort, but it failed.

I am really not surprised.

Juno will most likely have an open reduction and then go into a Spica cast in two weeks. She'll be in two Spicas--which go from just below her ribcage to her ankles--over the course of 12 weeks. There's a chance she'll only need a closed reduction, but she'll be in a Spica for 12 weeks either way.

Right now, I am just worried. About diapering her, keeping her comfortable, nursing her, helping her sleep, and interacting with her--so basically all the same concerns I had when she first went into the Pavlik harness. And most of those turned out to be unfounded. Somehow I have the feeling that won't happen again...

when it rains, it pours

So I took Juno to the ortho today. I haven't been worried about it all since we got such good news last month.

But I didn't even need the radiologist to tell me that her ultrasound looked bad. Last month, her hip was very close to being halfway covered by the socket (it should be at about 60% to be normal). This month it was not even close to being halfway covered. Her hip is even a bit worse than it was when we started treating her for DDH back in December.

So the ortho told me our two options at this point are to put her in a Spica cast, which has a 90% chance of success, or try the Pavlik harness again, which is down to a 30% chance of success at this point. He felt strongly that we should give the Pavlik one more shot before doing the much more difficult Spica cast, so Juno is back in the hated Pavlik harness for four weeks.

I mean, I guess there's a chance the Pavlik will work. It just seems like since it didn't work the first time we tried it, it's not going to work this time either, so we might as well skip it and go straight to something that will work. I just want to get it over with.

I hate to think that my happy, smiley, bubbly (literally, she blows bubbles all the time), cooing little baby is going to be miserable and uncomfortable again for who knows how long.

I hate it. I hate it. I hate it.

And what I'm really afraid of is this: I will be stressed and worried all month. Then, next month, the ultrasound will show just enough improvement to make us think that what we are doing is working. So I'll be happy and excited. Then, the next month, the ultrasound will show it getting worse again and I'll have to deal with these emotions all over again. I seriously just want to put her in a cast so I can deal with something real instead of the fear of something.

That's all for now, folks.

good news!

We got good news at the ortho today!

Juno's hip showed enough improvement that we can continue on with the hip abduction brace. That may not sound like "good" news, but since we aren't facing a reduction or spica cast (not right now, at least), I consider it very good news! She will probably wear the brace 24/7 for another 2 months or more, but she is happy, healthy, and thriving in it, so that is something that I can definitely live with :)

ps Happy Valentine's Day!! We had chicken cordon bleu bread bowls for dinner and chocolate covered strawberry cupcakes for dessert. Yum!!

this is real

{I've been wanting to post about my initial feelings after Juno was diagnosed with hip dysplasia for a while... but I haven't been able to word things right until now. At least, I hope I'm wording this right}

Logically, I know that hip dysplasia, in the grand scheme of things, is really no big deal. It's easily diagnosed, easily treated, and Juno will have no lasting effects after her treatment. I am so grateful for this and I'm so grateful to live near one of the best children's hospitals in the country. In fact, I'm careful to never say she has "health problems" because I feel like that makes it seem much more serious than it really is.

However, even though I know there are worse things to deal with, that doesn't necessarily make this easier. It's still hard. Hip dysplasia has changed everything I do with Juno--how I dress her, how I feed her, how often I can bathe her, how she sleeps, her happiness. It's a lot of little things, but added all together it is a bit overwhelming.

I've really struggled with my feelings over the past month. To be honest, I've gone through a bit of a mourning process since Juno was diagnosed. I've mourned having a "normal" baby and being able to do normal things with her. I wouldn't change my darling girl, but I would change our situation if I could. And on top of wishing things were working out differently, I've struggled with guilt because in the end I do have a very healthy little girl and I don't want to seem ungrateful for that.

In the past few days I've had the chance to talk to a few dear friends and neighbors about how I've been feeling, and to my surprise, they completely understood the mourning I've gone through.

These feelings are valid.

It's ok to mourn after a diagnosis that changes your life.

And it's ok to ask for help, which is a lesson I finally learned today.

Goodbye, Pavlik... hello, Abduction...

Today was Juno's follow up ultrasound and exam at the ortho. I was hoping that there would be enough improvement that we could start weaning her off the Pavlik harness--or at least give us some encouragement.

Unfortunately, there was no improvement. The ortho didn't think another 2-4 weeks in the Pavlik harness would make a difference, so he put her in a hip abduction brace. Unlike the Pavlik harness which is all velcro and canvas, the abduction brace has a hard plastic back. It does the same thing--keeps the legs flexed and spread apart--but it's more rigid so (hopefully) more effective. The ortho said the reason the Pavlik didn't work was probably that Juno was too strong for it and stretched the straps with all her kicking and straining against it!

Our first afternoon in the abduction brace has been ok. With a different brace, we now have to figure out nursing, swaddling, and sleeping all over again. She napped ok and was even happy for quite a while laying on the floor, but she did cry for about 30 minutes and I think she was just uncomfortable.

(Of course, it's always hard to tell if she's uncomfortable because of her reflux, the brace, or a combination of the two--or maybe she's just a fussy girl)

Here's a front view of the new brace. At least she can wear normal clothes again!

And here it is from the back. You can see in this picture how big it is on her. She's between sizes which makes it even more uncomfortable but hopefully won't make it less effective.
As for me... I'm doing ok, although I'm sure there will be some tears later on. I'm disappointed and discouraged and scared. If there is no significant improvement between now and Valentine's Day (our next follow-up), then we'll have to consider a reduction and a Spica cast (surgery and body cast). I don't think I have to say that I want to avoid that. Then again, if this isn't going to work either, I'd rather just cast her and get it over with, instead of wasting time and torturing her with things that don't work.
Juno and I (and the rest of the family, who do still live here even though I haven't blogged about them in weeks) would really appreciate your thoughts and prayers.

Juno is 2 months old!!

Juno turned two months old on Monday, but with Jason being home from work for MLK Day, I didn't get around to taking her two month picture until today. Here she is, the apple of my eye!

Juno's second month was quite a bit harder than her first. Part of it was that she got her Pavlik harness and she had to adjust to eating, sleeping, and playing in it. She was also diagnosed with reflux this month. Her pediatrician put her on some medication for it, but unfortunately it doesn't seem to be helping much. She is still uncomfortable a lot of the time.

In two months, Juno has gained 3 1/2 pounds. She's up to 9 lb, 7.7 oz. Wahoo! She sleeps pretty well at night--usually at least one 5-6 hour stretch and 4-hour stretches the rest of the night. I put her to bed at 7, wake her up to nurse at 10 before I go to bed, and then usually only have to get up with her once before morning. Pretty good for a 2 month old! We are still working on naps during the day. I bought a box fan that I turn on the highest setting during her naps and the white noise seems to help, but she's still a bit of a catnapper.

Juno is getting stronger every day and likes sitting in her Bumbo seat while I make lunch for her big sisters. She's not strong enough to sit in it for long, but she always wants to be upright. She likes being a part of things! Like all babies, she has fussy periods, but she rarely cries inconsolably. She loves to be held and cuddled!

Tomorrow we are going to the ortho to see how much progress has been made in her hip. Cross your fingers for good news!

sleep like a baby

Whoever coined that phrase obviously never had kids.

Because newborns are anything but peaceful when they sleep. They snort, grunt, cry, wiggle, thrash their little bodies around, and whimper. Sometimes it feels like I spent 75% of my day trying to get Juno to sleep, and the remaining 25% trying to keep her asleep.

Wearing her Pavlik harness only complicates the issue, of course!

I am a big swaddler. I swaddle my babies from day one. They lose control of their little arms and legs so easily and swaddling them keeps them happy, even during playtime. So after an entire month of swaddling almost 24/7, figuring out how to swaddle around the Pavlik was a big shock to both me and Juno. Luckily, I figured out a way to work around it well enough that she feels secure enough to sleep peacefully.

1) Unlike a traditional swaddle, fold the blanket into a full triangle shape instead of just folding a corner in.
2) Pull the pointed end of the triangle up between the baby's legs. Pull it up as high as you can so that it will stay secure.

3) Wrap one end over the baby, tucking securely under the baby's opposite side.

4) Wrap the other end over the baby, tucking securely under the baby's other side. Just like a traditional swaddle, this only works if you do it TIGHT TIGHT TIGHT!

Because the harness pulls Juno's legs up in the air when she is flat on her back, we put a small throw pillow under her legs to give them support and keep the circulation from being cut off.

As for pajamas, most footie pajamas are out for now. She has a few pairs that are extra big on her (3-6 months) and sometimes I put them on over the harness and just leave the crotch snaps open. As long as the position of her legs doesn't change, this is just fine. However, it looks really uncomfortable and tight to me, so I normally dress her in an infant gown--the kind that is long and open at the bottom with elastic around the opening. The one I have looks like it belongs in a rest home, so I've been meaning to make one of these out of an old Taking Back Sunday shirt. I just haven't gotten around to it yet. Imagine that, having time to sew again!!

keeping it real

This sounds so shallow, but one of my biggest concerns about dealing with the Pavlik harness was how to dress Juno. It's not that I just want to get use out of the cute clothes she was given or that I am concerned with her being "cute"; I want her to look like a normal baby. I don't want people to look at her and see the harness and not my sweet little girl. I don't want her to be a ball of velcro.

I took this picture of Juno in my favorite outfit the day before her first ortho appointment. She had almost outgrown it anyway.

If you've been wondering how the harness looks on a real baby and not an illustration, here it is! The ortho gave us permission to take it off for diaper changes and to change her clothes. She can have it off for a total of an hour every day. However, I found that she was getting frustrated when I took it off often throughout the day--it was a tease. So now I only take it off every few days for a bath and to change her onesie.

Under her harness, she wears a short sleeved, tight onesie. I've tried a couple different things on her legs. She really needs to have something on them to cut down on chafing from the canvas straps on her fat little thighs. First she wore regular tights, which just made it too hard to change her diaper without taking her legs out of the harness. Then I tried babylegs, but they were too thick to wear comfortably under the straps. Finally I cut the legs off a pair of 18-24 month tights and she wears those. They work best, although I have to constantly tug them back up to her thighs.

And here she is, fully dressed for Christmas Eve.
Over the harness, she wears a long-sleeved onesie that's about a size bigger than she would normally wear and a pair of babylegs. I make all the babylegs by cutting the foot off of girl's knee high socks. The knit doesn't fray, so I don't have to do any sewing. I pull the babylegs all the way up to her thighs, over the straps on her legs, and tuck the ends in to her onesie.
You can't even tell she's got something on under her clothes, can you? I think she's pretty darn cute, even though she does look grumpy!
{She's always grumpy in pictures that I post on here; I promise she looks much more pleasant in real life! She's even learning to smile!}
For church I just put a dress over the harness instead of a onesie, or if it's a jumper, I put the dress over the long-sleeved onesie.
Juno could wear pants if they were big enough to not pull her legs together (probably size 9-12 months or so), but I prefer her to wear clothes as close to her size as possible, so for now we're sticking with the babylegs. I think it's less noticeable that she's got the harness on that way. If she's still in the Pavlik harness when it's warm, she'll wear lots and lots and lots of loose, casual dresses, and we'll forego the babylegs--but hopefully it won't come to that!!