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. 

She's walking!!!

I can't believe the day has arrived, but my little girl is WALKING without help.
It's so amazing to think how far she has come.  I was so scared that this day would never come.  We were assured it would, but to actually she her doing it.  She's amazing.
She's been walking against walls and walking with toys for awhile, but this is a HUGE milestone!!! 

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.

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 ...

Blessings come from raindrops

I think we're nicely getting used to the spica cast.  Annabelle has been sleeping relatively well, she has been eating well, and is a bit less frustrated now about her lack of mobility.  I think her pain is doing a lot better too. 

Looking back on our journey so far, it's been frustrating, it's been full of worry and tears.  We have learned a LOT.  They always say parents with kids with conditions become experts, and while I'm definitely not an expert, I feel relatively well educated ... enough to answer questions when people ask them ...

Every day since Annabelle was born I have been so grateful that her hip dysplasia was caught early.  As Dr Olney has told us, this is often not detected this early in life.  Most of his surgeries are done on older kids, aged 2-3 who are diagnosed after they start walking.  I thank God that Annabelle *WILL NOT* remember the Pavlik Harness.  She won't remember the Rhino Cruiser, or mommy and daddy twice handing her over to the OR nurse.   She won't remember the Spica Cast, she won't remember the pain.  She will remember the stories we tell her down the road, and how much love her mommy & daddy had for her through this whole journey. 

The few weeks before Annabelle's surgery, she cut six teeth, to bring her total to EIGHT.  Those few weeks were frustrating beyond belief.  A few days before her surgery I decided that her cutting her teeth then was a blessing.  She endured that discomfort prior to surgery and going into her spica cast.  Now I don't have to worry that her fussiness/discomfort is from incision pain or from the spica. 

While we were waiting outside the recovery room for Annabelle to be transported to her room, there was a family with a little boy that looked to be about two years old.  His mommy was explaining to him that he had to walk with the "nice nurse" and she would see him afterwards.  I feel so blessed to not have had to explain to my daughter why I was sending her away.  To not wonder if she would look at me afterwards wondering why I sent her off to be in pain.  The last glimpse I have in my head of her being taken to surgery, is her smiling at the OR nurse while playing with her hat.

I am also extremely thankful that the closed reduction was unsuccessful.  We didn't have to endure 3 months in spica, with a cast change at 6 weeks over the hottest summer on record. 

All in all, I am so, so, so grateful that the condition our daughter has is FIXABLE, CURABLE, and something that we will be able to put behind us.

we are home!

I'm glad to be home with my baby but a bit nervous to learn how to take care of her at home ... at the hospital everything is a bit more adapted to her ... at home, we have to figure out what works!

Annabelle is doing well now, she is still in some pain but we're trying to keep on top of it ... she's nursing well, and she ate babyfood this morning as eagerly as she always does.  She's back to smiling frequently, but is definitely more subdued.  She wants her mama all the time ... 

Good morning, beautiful

Morning smiles

attempted tummy time

Meet the Spica

playing with daddy

going home!
Yes, I did match her dress to her cast, I had bought this
dress before her attempted closed reduction as her
"Going Home outfit"

Photo with daddy!

Riding home!  Her new rented Britax Hippo carseat ...
She looks uncomfortable,
but she actually slept the whole way home

Open Reduction and Capsulorrhaphy

I'm so glad today is finished.
Annabelle had her surgery, an open reduction with capsulorrhaphy, which took about 2 hours.  We were able to see her about 4.5 hours after the nurse took her back to the OR.  She was heavily sedated on pain medicine and was occasionally moaning.  It took Annabelle a long time to wake up, and even longer to smile, which is rather unusual for my normally very smiley girl.  We skyped with daddy & big sister this evening and big sister got Annabelle to smile.  It was nice for her to see her baby sister at the hospital and to have a little view of the cast that we've talked about.

Here's a little photo recap of our day:

last bath for six weeks!!!

totally oblivious to the day ahead

waiting for Dr Olney to arrive

arrival in her room

Daddy watching over her

starting to wake up

first time holding her

starting to play

Love my girl.

First smile of the day, Skype with Daddy & big sister

Sweet dreams, sweet girl.

Reduced.

Annabelle's hip is now in the right place for the first time since she was born.

Waiting ...

Annabelle is in surgery.  We got a call a little over an hour ago from the OR nurse saying that they had just started.  Dr Olney anticipated anywhere from 2-3 hours from start to finish, as they'll be applying the cast and I'm assuming it will have to dry.

The wait is hard, and I'm trying to keep myself busy ...

NPO

NPO.
Nil per os.
Nothing by mouth.

Fortunately for the tiniest of patients this is only for a few hours rather than 'after midnight'.

Annabelle was able to have food/formula (which she has never had) until 1:30, she was able to nurse until 2am.  She could have clear liquids (a.k.a. Pedialyte) until 4am.  So... NPO after 4am for a 7:30 surgery doesn't seem so terrible.

I had set my alarm for 1:30 to wake and nurse her, but she woke on her own around 1.  About 2:15 she woke up screaming.  After about 20 minutes of inconsolable baby we determined she was gassy and gave her some gas drops.  A few huge burps later, she fell asleep on my shoulder at about 3am.  I snuggled with her in bed for about 10 minutes and was finally able to get her to take some Pedialyte, although she only took 2.5 ounces.  I was hoping she'd take more so that she'd be a little happier this morning before her surgery, but she passed out hard after that :)
I'm listening to her tiny snoring right now and praying hard. 

Here we go ...

It's feeling real.

I've largely been in denial.  I have moments where I freak out about Annabelle's upcoming surgery, and then they're over.  It was too far away to really freak out about.

Then September hit. 

Then October hit. 

But we still had my cousin Jill's wedding to get through, as her surgery isn't until after the wedding.

The wedding is now over.  I'm packing my bag for the hospital and I'm starting to freak out.  I'm packing teeny tiny t-shirts that I've collected over the last 5 months that she will (hopefully) be able to wear over her cast. 
I'm playing with her tiny legs, savoring her chubby little thighs knowing they'll be out of commission for 6 weeks.

Praying she's not going to be in much pain.  Praying all goes well and this is the last surgery she has to endure.  Praying for peace for myself.  Praying for the doctors and nurses who will care for my little girl. 
Praying ......

I was going to be brave.

I was going to be brave.

We did this before, right?  We woke up well before dawn and drove our tiny girl to the hospital for surgery.  We carried her down the hallway knowing we would soon have to hand her over to the OR team.  We handed her over and watched the OR nurse carry her around the corner to the team that would care for her while under anesthesia.  I sobbed as we helplessly took the elevator to the waiting room where I would pace until we got word that she was out of surgery.  We waited in angst as we were waiting to hear her name called so that we could meet her in the recovery room.  I rocked and held my sedated little girl and longed for the time she'd open her eyes and want to nurse again. 

We did this already.  So, next time, no big deal, right?  That's what I've been telling myself. 

I was going to be brave.  With this surgery, we have no what-ifs.  The outcome is definite:  Open reduction, Spica cast for 6 weeks.

So, then why with every passing day that the day gets closer do I get more and more scared?

35 days until we do it again.  35.  That's a fewer number of days than she'll actually in the cast.  When I think about it, I'm nauseous.  I don't want to do this again.  I'm scared to death.

I know her condition is fixable.  I know eventually this will all be behind us.  I know there are far worse case scenarios out there that we could be dealing with.  I know all of this.

It doesn't make me less scared.

I can't tell you what a helpless feeling it is to hand your child over to someone and know that you have absolutely no control over what is about to happen.  I don't want to do it again.  This is what our girl needs, so we will do it again.  And again after that if we need to.

I was going to be brave.

So I'm going to try to be.

we are home

This morning didn't go as expected, but as the day has gone on, I'm not as upset about it ... in fact, it's a bit more on the positive side than I realized ...

She went in for surgery ... anesthesia, the whole bit ... but ...

Dr Olney was unable to reduce Annabelle's hip ... (i.e. he couldn't get it to align, and her right hip is still out of place).  Her left hip is still where it needs to be and he said it looks good.
So ... instead of casting her today ... we are home.  She will continue the brace in order to provide support to her left hip, but we will wean her out of the brace.  She can now have 4 hours out of the brace a day.

This fall, when she is older, and her bones are more mature, she will have an OPEN reduction (instead of the closed reduction that was scheduled for today).  It is just like it sounds ... they will go into her hip ... clean out any tissue that is obstructing the joint and preventing it from aligning, and reduce the hip that way.  Check out this link for more info.
Afterwards, she'll be in the spica cast for 6 weeks, and then back to the brace she's in now.  No re-casting.  Just one surgery.   Hopefully, that will fix her hip. 

In the meantime, not having her dislocated hip braced will not affect the outcome.  Dr Olney says this ... he's been doing this for 20+ years ... he's the Chief of Orthopedic Surgery ... I trust him.  (okay, mom?)

Ultimate Goal:  Healthy Hips, full function.

They told us to expect her to be veeeeeeeery sleepy for the rest of the day, and she might have a rough 24 hours. 

I had planned to do a photo tour of our day ... (last photo of legs, etc...) but since that is irrelevant now ... I'll do a mini tour ...

Annabelle couldn't have any breastmilk after 1:30am.  She could have clear liquids (i.e. Pedialyte) until 4am, so I woke her at 3:30 and she drank 5oz.  She didn't really wake up, but she did drink.

Here we go!

scared Mommy, hungry baby

I'll be okay mommy, and aren't I cute?  Won't you please feed me?

Sleeeeeepy baby in the recovery room.  It took removing her IV (in her elbow at the bottom of the pic) to wake her up. She nursed after that.  They told us she might be very sleepy for the rest of the day ...

After arriving home ... my happy, happy girl.

She's zonked out now, and snoring ... hopefully the rest of today and tonight go well.