Checkup

Annabelle had a checkup today - her first for awhile.  As always, I was nervous going in.  I often forget about the journey we've been through, and I'm always a bit taken aback when people ask me how Annabelle is - I forget. 
I forget all the tears and heartache and sleepless nights through the Pavlik, and the Rhino, and the Spica.
Today's checkup was nothing short of perfect.  My girl's hips are still perfect. 
Her next checkup isn't for another year. 

No more Rhino!!!

Lately Annabelle hasn't been sleeping as well as she used to - she's always been a pretty awesome sleeper.  My little adventurer has also been taking her brace off herself!  I've tried to put it on under clothing to make it more difficult for her - but overall, it's just not going as well as it had been.
The last time we saw Dr Olney, he had said we would keep her in the brace at night as long as she was tolerating it - which we felt she no longer was.
I emailed Dr Olney's nurse today, and mentioned she wasn't sleeping as well, and was taking it off, and she said .... we can go without the brace!!!!!!!!! 
We have another appointment next month with Dr Olney, so we'll see how she's doing without the brace on. 
I can't believe this journey we've been on for 19 months is changing courses.  I just pray her hip continues to develop and heal as we've been hoping. 

One year.

I'm pretty big on remembering dates - so I was floored as I happened to be reading my first posts on this blog earlier and noted that a year ago today, Annabelle got her Pavlik Harness.  I had felt some kind of premonition that our journey with Hip Dysplasia would not be brief, and that I would need an outlet - somewhere to share my thoughts and feelings, as well as Annabelle's progress.

What a year.
February 18, 2012 (birth day) : click felt in right hip on exam, xray unremarkable
February 22, 2012 : four day checkup, no click felt, Pediatrician recommends followup ultrasound at 6wks (the "gold standard" for followup)
March 21, 2012 : one month checkup, no click felt.
April 2, 2012 (6wks, 2 days old) : bilateral hip dysplasia diagnosis via ultrasound
April 9, 2012 (7wks, 2 days old) : Pavlik Harness treatment started
4 weeks in Pavlik Harness - no success.
4 weeks in Rhino Cruiser - left hip successfully reduced, right hip still dislocated
June 4, 2012 (15wks, 2 days old) : attempted closed reduction - no success, back to Rhino cruiser
July 17, 2012 : right hip still dislocated, left hip still in place
September 19, 2012 : right hip still dislocated, left hip still in place, surgery scheduled
October 9, 2012 : Open Reduction and Capsulorrhaphy of the right hip, spica cast
November 21, 2012 : Spica cast off after six weeks, both hips in place, able to be out of Rhino cruiser 3-4hrs a day
November 26, 2012 : James and I were concerned about Annabelle's range of motion -  hip still fine.
January 16, 2013 : Both hips still in place, able to be out of Rhino cruiser 6-8hrs a day.
March 20, 2013 : Both hips still in place, able to be out of Rhino during all waking hours.

And I am overjoyed to report today that Annabelle, as of today, is properly crawling - with her knees!  She's still pretty slow - she moves faster when she's army crawling, but this girl won't stop!  She's been successfully sitting up for two weeks, pulling herself up since January, and cruising furniture for at least a month (bad mom, I don't have the dates memorized - I will have to check back on my Facebook statuses.  Stati?)  Last week she took off walking with a walker.  I was floored. 



Now I'm just looking forward to seeing my tiny girl walk, and to hear the words I've been longing to hear for so long:  Healthy Hips.  We're so close.

Life with a hip baby

It's been nearly seven weeks since we said goodbye to the Spica cast.  She's been out of it longer than she was in it.  It seems like a distant memory.  I definitely don't miss it, but it wasn't that bad.  It was short lived, and it's now past us.

Annabelle is doing quite well now, she's become extremely mobile and army crawls herself all over the house.  She's only allowed out of her brace for four hours a day, so she doesn't get much time to practice 'real' crawling, sitting or standing - all of which she cannot do on her own yet. 

I have managed to get her standing and sitting with assistance and she will stay in that position for a small amount of time - while clinging onto a toy for dear life!  She still can't get herself into a sitting or standing position on her own - and I suppose that will just take time.  She definitely has more range of motion than she did - but she's still limited and guards her right hip quite a bit.  I work on stretching it when I can, however it occasionally pops when it's moved - which Dr Olney's nurse said can happen (and is okay).  It freaks me out when it happens, though, and she SCREAMS in pain. 

We see Dr Olney again on the 16th - and assuming all is still going well with her hip - she should have the amount of time allowed out of her brace to increase.

bye bye, Spica

I have many mixed emotions tonight as I write this ...
I am happy that my baby girl's cast is off.  I'm happy we're one step closer to healthy hips.  I'm happy the hardest part is past us. 
It's hard to see my baby in so much pain, though.  I hadn't expected it quite this much.  I had expected her to be in pain after surgery - that just makes sense.  I understood that we should anticipate her to be uncomfortable after the cast removal since she hasn't moved her legs in six weeks.  What I didn't anticipate was the pain she has been in.  It's breaking my heart.  I hate that she's in pain.  I wish I had planned for this possibility in my schedule, seeing as I work tomorrow - it's hard knowing she'll be here and uncomfortable and I won't be able to be with her.

Otherwise, all went well.  Both of her hips are in place - yay!  Her left hip is starting to develop more, which Dr Olney was pleased with.  We go back to see him in six weeks.  Until then, we're back in the Rhino cruiser for 20ish hours a day - 1.5hrs out in the morning and at night and the other hour can accumulate through feedings, diaper changes, car travel, etc ...

Rhino activities

In our Fisher Price Space Saver High Chair

I've been able to help Annabelle do a few more things in her rhino, so I thought I'd share so other people can hopefully have an easier time with their little ones.  

In the Rainforest Jumperoo

In the Rainforest Jumperoo

Wearing a small Halo Sleepsack at night,
brace underneath

Wearing a small Halo Sleepsack

Swinging in the
Fisher Price Papasan Cradle Swing

In our new double stroller:
Baby Jogger City Micro

rhino roll

Since we've been able to allow Annabelle more time out of her brace the last few weeks, she has really gotten mobile! 
She rolled back to front without her brace a couple weeks ago, and the next day, she did it IN her brace - I was shocked!

 
She's also working on her version of crawling, which looks more like digging, as she digs her head into the floor and kicks with her legs until she scoots to whatever object she is trying to reach.  She also rolls like crazy. 
She still isn't crazy mobile when her brace is on, but I'm thankful she's meeting more of her milestones. 
I had initially prayed that she wouldn't become mobile prior to her open reduction/cast placement so that she wouldn't get so frustrated and being unable to move, but it's such a joy to see her exploring and discovering her world.  The 6 weeks in the spica cast will be long and stressful - but they are only 6 weeks.  Only 42 days.  That I can handle.

one in, one out

A couple weeks ago I took Annabelle back to the Orthopedic Dr.  She had an x-ray (she's old enough now - no more ultrasounds!), and we got some reassuring news.  Her left hip is still in place, and looks good - Dr Olney is confident it will continue to stay in place, so she is now allowed 6-8 hrs a day out of her brace, and has no restrictions when out of her brace (except no Johnny Jump-ups).  I promptly put our Jumperoo together that night.  She's still more a fan of the Exersaucer than the Jumperoo, and I feel better about the Exersaucer because she can still wear the brace in it.  I still kinda baby that hip.

Her right hip is still dislocated, which we know and expect.  She'll have her open reduction in October that should fix it.

In the meantime, we're working on weaning her out of her brace, slowly.  She is also now doing physical therapy for her torticollis.  She's still pretty limited on her range of motion, and she detests the stretches we have to do for her.  I'm praying it gets easier as her muscles stretch out.  We have several sets of stretches we have to do 5-6x a day, for at least 5 reps.  So, all-in-all, each stretch 25-30 times a day.  It's a lot, but not that time consuming.  It's just painful to watch her screaming, but to know it's what she needs.  I hate seeing my baby uncomfortable.

Otherwise, all is well!

Babywearing with the Rhino Cruiser, part 2

I had posted earlier that the Ergo carrier worked well with the Rhino.  I've worn Annabelle in it a few times with her brace, and she sometimes will tolerate it, and other times won't.  It's really touch and go.  It's not quite wide enough for her leg span, and I think it sometimes cuts into her legs and makes her uncomfortable.

I found my ring sling, and decided to try her in that.  It's not the ideal carrier for long term wearing, but it worked well with her brace, I used a hip carry similar to how I carried Charlotte when she was ~10 months old.  Annabelle did well in it - I think we'll try this one again!

It's a double-layer Solarveil ring sling from Baby So Smart.  The lint is courtesy of me washing it with a load of towels and accidentally drying it.  This sling is awesome, I bought it for Charlotte specifically to wear her in the pool or shower.  You can scrub a baby right through the fabric with soap!  It also has some UV protection.  :)

our new normal and the answers to some FAQ

I haven't posted for awhile, but there's not much to update!

The last five weeks have been great.  Annabelle is doing fantastic, and we don't really seem to mind her brace at all.  SHE doesn't seem to mind her brace at all.  It's our new normal.  Baby in a brace.  We get some stares occasionally, and I'm always happy to answer questions for the curious minds.

happy girl

We've even managed to fit her in an exersaucer with her brace on, and she loves being in it.  (I doublechecked with the Dr to make sure it was okay, and they said sure!)  She's all about putting everything in her mouth, so having lots of toys at arm's reach is a plus for her :)

dangly legs!

*************
FAQ:

I've had a lot of questions asking after little Annabelle, so I figured I'd make a mass answer:

our tiny girl on the fourth of July

She is doing great.  We are weaning out of her brace, she is allowed out four hours a day, and she loves being out of it.  She is still a bit behind on tummy time stuff, as she still doesn't tolerate it well, but we're catching up!  :)

She *did* go in for her surgery, but while under the general anesthesia, they were unable to put her hip in place.  She will have open surgery in October after she is 6 months old (the Dr won't do the open surgery on younger babies) and they will clean out the hip joint, manually reduce her hip, and cast it there for six weeks.  That *should* be her last surgery.

In the meantime, she is in her brace to keep her left hip stabilized, and provided it stays in place, she will only have surgery on her right hip, however, the nature of the spica cast is to cast both hips.

adios, turtle shell!

I have started affectionately referring to the Rhino cruiser as Annabelle's turtle shell. In fact, the next one she has, I think I will design to look like a turtle shell --- it sure feels like one.

I emailed Dr Olney's nurse last night. We hadn't thought to ask if Annabelle needed to stay in her Rhino prior to surgery. We assumed she did, but after thinking, we wondered if a couple days out of it would make any difference. We're both longing so much for some cuddly snuggles with our tiny princess. She's been in some form of brace for 8 weeks now. She's 15 weeks old. That's more than half her life.

I got a response back early this morning saying we could be brace free! Yippee! She went to school today without her brace (I had to work). Coming home tonight, it was a bit odd to hold her. She seemed so ... floppy. Like a baby. I'm used to a baby that doesn't bend, doesn't mold, doesn't contour into me when snuggling. It was nice beyond words, but a little strange, to be honest.

I did put her into her brace for sleeping tonight. Even though we can be brace free for a couple days ... I still want to baby that healing left hip.

spica, here we come

Our visit this morning had both some expected, and some unexpected news ...

The Rhino cruiser helped Annabelle's left hip. It's now in place, and Dr Olney anticipates it should stay there. It will need to continue to be braced for awhile to provide stability to the hip joint as it grows and hardens.

It did not help her right hip. He said that there is no improvement. So we are going to continue ahead with the scheduled closed reduction on Monday (today is Thursday). During this, she will be put under general anesthesia, dye will be injected into her hip, and this will allow him to reduce the hip, or manually put it in place. He may or may not need to do a tenotomy, to cut a tendon to allow the hip to be reduced. If all goes well, the hip will reduce, and she will be in a spica cast for 3 months. The cast will be changed out after 6 weeks.

If the hip does NOT reduce, we will not do the cast, she will go back into her Rhino cruiser until she's 6 months old, when she would have an OPEN reduction, or actual surgery on the hip joint.

We asked him if surgery was the best option, seeing as the Rhino cruiser helped her left hip - could it help her right one? He said if there had been any improvement, they might try that first, but seeing as her right hip is essentially unchanged - the best option going forward is the closed reduction/spica cast. Both hips will be in the cast, and this will not hurt her healing left hip at all - but it will continue to provide support.

If she's placed in the Spica cast, we'll likely stay overnight on Monday. If the hip doesn't reduce, we'll go home the same day.

I'm praying for the cast.

Babywearing with the Rhino Cruiser

When I was pregnant with our oldest daughter Charlotte, I *knew* I wanted a Baby Bjorn carrier. I heavily researched all products we registered for/purchased, and learned that BB style carriers were not ideal for babies hips. (There is data out there that supports both sides of the argument, but after reading enough information, I decided that the BB style carrier was not for me.)
When Charlotte was 10months old, I bought an Ergo carrier that allows babies to sit instead of dangle while being worn. This style carrier is preferred by the International Hip Dysplasia Institute to promote healthy hips.

When we learned about Annabelle's hip dysplasia, I was ***SOOO*** happy that we already had a carrier that would work well with her hips. I have the infant insert, and I used that with her before she went into her PH, but afterwards, she didn't fit well with the insert. I tried wearing her once when she was in her PH just in the carrier, not with the insert, and she was too little, it was uncomfortable for her.

I tried her again about a week ago in her Rhino cruiser, and she tolerated it well for a short amt of time. She was chewing on the straps, so I got some strap covers to protect the carrier. Yesterday, we went to a soccer game, and she was in the carrier for about an hour and tolerated it well. Afterwards, she didn't really like it. I think it pushes her legs out further than they would normally be... she still only weighs about 12.5lbs at 14 weeks old.

It's the best option we have at this stage, though. I actually think a BB style carrier might work better, because they tend to be tapered out at the bottom. My friend has one that we're going to borrow when Annabelle is in her spica cast, I'll have to try it out.

meet Rhino and the first few days with him

meet Rhino

The 'Rhino Cruiser' is a hip abduction brace, designed to hold the hips in a position to hopefully allow Annabelle's hips to realign.

She'll be in the Rhino Cruiser until her closed reduction on June 4th.

Isn't she cute?!

The first day was the worst. She cried every time I had to tighten the brace. She got it on Monday. Today is Thursday, and she doesn't cry anymore. I think she's getting used to it. She has to come out of it to go in her carseat and have a diaper change, and she keeps her legs in the same position. It's kinda funny. Since she doesn't use her legs, I don't think the muscles are developing much, and her legs are REALLY floppy. She kicks them when she's not in the brace, but I don't see her move them much when she's in the it.

Check out her legs in the brace, and then not ...
and yes, car seat gurus, the strap covers came with the carseat ;)

CAST

During our ultrasound this morning, the Pavlik got to come off for a few minutes. Annabelle has gotten so long! I took a couple pics to document, thinking she'd be put back in the PH afterwards. I took some washcloths and baby soap to give her a quick sponge bath on her lower half. She was getting quite stinky.

I had a vibe after our ultrasound that a cast would be our next step. It felt like the big guy in the sky gave me a heads up so I would be prepared for the news. I was going to be brave and strong.

Dr. Olney came into the room, "How's this little girl doing?" he asked. "You tell us," is what I managed to croak. "Well ..." he began.

Long story short, the Pavlik harness did not work for Annabelle. He said she has shallow hip sockets. The next step is a procedure called a closed reduction. During this, Annabelle will be under general anesthesia for complete sedation so he can manipulate her hips into the correct position. Afterwards, she is in a Spica cast for ~3 months, with a cast change after six weeks to accommodate her growth (and any ick factor). If that works, great. If not, more surgical intervention is necessary when she reaches 6months of life.

In the meantime ... since the Pavlik isn't working, no more Pavlik. We're changing to a different brace, the Rhino cruiser. It's a harder shell of a brace, not a soft harness like Pavlik.
Pros: it can come off (yay!) and she can have a real bath (double yay!). It comes off for diaper changes, and it comes off in the carseat. She can also wear clothes under it, so all the cute outfits she has are once again a possibility.
Cons: it comes off, so it has to go back on. And she HATES it being tightened.

A fleeting hope ... newer studies have shown that a small percentage of DDH can be corrected with the Rhino cruiser when the Pavlik didn't work. We go back for an ultrasound in 3.5 weeks. If her hips are better, we go from there. If they're not, we continue with the scheduled closed reduction four days later. She'll stay overnight (at least) in the hospital. They'll even hook us up with a fancy carseat since her infant carrier won't work.

In my mind, I'm planning for the closed reduction. I'd rather be pleasantly surprised than the other way. He didn't sound hopeful that the cruiser would work.

Today has been rough. She does not like it being put back on. AT ALL. On a positive note, she got a bath, which she LOVED.

As for how I'm doing ... I'll blog tomorrow. I'm tired, and she's asleep, therefore I should attempt to be.