our story

We welcomed our second daughter Annabelle on February 18, 2012, a week before her due date. That same day, the pediatrician felt a click in her right hip ...

... it was never felt again. An x-ray the same day showed nothing, so we weren't too concerned. We had a follow-up ultrasound when she was 6 weeks old, and it showed that *BOTH* of her hips are dislocated. (a condition called Develomental Dysplasia of the Hip or DDH)

Thursday, May 31, 2012

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.

Wednesday, May 30, 2012

safe

turn up your sound, click this, and listen while you read (right click to open in a new window)

I had to go to work this morning for a class, and I was listening to K-Love, as I always do when driving.

A song was playing that calmed me, soothed me, and terrified me. I was sobbing by the end, and almost had to pull off the road.

In five days, I will be leaving my baby in the hands of doctors and nurses and praying all goes well. I will walk her to a door, and hand her over. The door will close, and I won't be there with her. Her life will be in their hands.

The lyrics to the song reminded me that both I, and my baby girl will be safe. God will keep her safe.
I imagined singing in my head to her before she goes back:

"You're not alone. You will be safe in His arms, You will be safe in His arms, the hands that hold the world are holding your heart, this is the promise He made, He will be with you always, when everything is falling apart, You will be safe in His arms."

The same goes for me as I am probably pacing the waiting room ...

I think the anxiety of the looming day is worse than the actual day will probably be.

I'm trying to be calm. But I'm scared to death.

1 Peter 5:7 (NIV) Cast all your anxiety on him because he cares for you.

Tuesday, May 29, 2012

hope?

I wasn't going to do it.

But I did.

This morning on the way to work, I was thinking about Annabelle's upcoming cast placement and surgery, and I had a fleeting thought ... what if we go Thursday and the Rhino cruiser WORKED? What if all this stress and anxiety and preparation has been for nothing?

What if?

The chances of that happening are so small, I have gone forward with the expectation of the cast. I'd rather be pleasantly surprised than have my hopes dashed when we see Dr Olney for her re-ultrasound.

I wasn't going to hope ... but I want to.

Monday, May 28, 2012

Torticollis

I first noticed something was different about a month ago. I noticed that it was easier to feed Annabelle on my left side, she seemed more comfortable, and was able to turn her head all the way to her right side to eat. She could basically eat lying flat on her back with her head turned. (there's actually a pic of her doing it on my breastfeeding with the PH post). On my right side, I had to modify how I held her because she wouldn't turn her head. At first, I thought it was related to the PH/RC, but it's more of a neck issue.

I didn't think much of it until I was reading up on hip dysplasia, and it said that infants with hip dysplasia can have neck problems - in fact, that's how some DDH cases are diagnosed. 'Torticollis" was the term I saw, and after looking it up, it seemed as though it fit Annabelle pretty well. I looked back through her pics from the last month, and in most of them, her head is tilted to the same side. It's the same side she favors, and cries in pain if I try to turn her head the other way.

We don't have her next well visit scheduled, but I'm going to ask Dr Olney (our orthopedic Dr) on Thursday when we return for an ultrasound.

Follow up: Dr Olney did say she has mild torticollis, but that it should resolve as she gets older. We can do stretches to encourage her to turn her head to the left.

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.

Saturday, May 12, 2012

panic

I keep telling myself it's no big deal.  The cast.  It's no big deal.  She'll have it.  She'll get better.  She'll eventually have healthy hips and this will all be a distant memory. 
Until today, the cast hasn't scared me.  The anesthesia part scares me, but the cast hasn't.
I was just sitting here feeding Annabelle and I had the image of her in a cast float in through my thoughts.  And I just burst into tears. 
Surgery.
My baby.

She's so tiny. 

Nevermind that I've seen a 500 gram baby intubated on an oscillator.  I've seen a 26 week gestation baby have heart surgery.  I've taken care of a small handful of babies post-heart surgery.  I've cared for dozens of babies intubated.  I've drawn blood from babies.  I've started IVs on babies.  That doesn't scare me. 

This does.

This is MY BABY.

I know it's what she needs, but I'm terrified.  The thought of seeing her wheeled away into the OR ...  I just can't stomach it.   

The positive side of this is that she truly won't remember it.  She will hopefully be healed and be a fully functioning child/teen/adult.  It was found early.  We're not trying to go through this when she's a toddler.

How do you prepare for this?

I'm praying for God's peace.  I need that more than anything right now.  We have the best Doctor in the city taking care of our daughter.  For that I'm sooo grateful. 

I'm still scared.

Thursday, May 10, 2012

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 ;)

Monday, May 7, 2012

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.

Trust me.

I woke up this morning for Annabelle's appointment, and logged into Facebook to play while Annabelle eats.  Courtesy of KLove, this is what I saw.   Enough said.  Hit me square between the eyes.  Thank you, Lord.


Sunday, May 6, 2012

I should be anxious, and I'm not. (not a lot)

(this is a religious post)

Tomorrow morning we go back to see Dr. Olney to determine the next step in Annabelle's treatment...
Our ultrasound is scheduled for 7:30am (ugh, ugh, double ugh), and then we see the orthopedic Dr afterwards. 
I feel like I should be more anxious, and I'm sure I will be in the morning, but for now ... I'm just indifferent.  Calm, almost.  I've been praying about this.  A LOT.  Today, my devotional even spoke about fear, and how we should not fear and give all our troubles to God.  That's the mindset I've adopted over the past couple weeks.  I keep feeling like He's telling me to breathe; relax; He's got this.  I don't need to worry, I need to have faith in Him.  I feel like this is a test of faith He's thrown at me - to bring me back into trusting Him. 
I've witnessed/heard of a lot of things as of late that have made me truly thankful for my beautiful HEALTHY baby that is snoozing on my lap right now.  She's a healthy girl with a hip condition.  But she's healthy.  I'm so grateful and thankful for that.  I'm blessed beyond words. 

Saturday, May 5, 2012

Breastfeeding with the PH

(WARNING: pics included, run away if you get offended)

Breastfeeding can be challenging enough with a little one. We had a lot of trouble maneuvering Annabelle into positions comfortable for her.

Most often, she was comfortable either lying flat on her back or slightly tilted to the side with her head turned.



As she got a bit bigger and has had more head control, she's been more comfortable nursing sitting up, straddling my leg, or in a diagonal position.


Occasionally, she's liked the football hold too. Sometimes it's trial and error. Bottomline: a hungry baby eats.

Friday, May 4, 2012

So you're getting a Pavlik harness?

I'll add to this list if I figure out more things, but here's what I wish I could have had someone tell me in anticipation of our Pavlik journey:

1) Give your baby a HUGE bath the morning before Pavlik. This one I had actually figured out, so I woke up extra early that morning to give Annabelle a deep clean and snuggle. Lots of skin-to-skin that morning. I took pics. Then I dried out the baby bathtub and put it away. We won't be seeing that thing for awhile.

2) Buy some plain t-shirts to put under the harness. Gerber makes them, and don't get the kind with the side snaps. Just plain t-shirts. I found them at our local grocery store for $5 for a pack of three. I can't find them anywhere else but on Amazon. These have been VITAL for us.
Make sure you take a t-shirt with you on Pavlik day. I honestly only change out the t-shirt when it gets gross or when I give her a "sponge bath". Sometimes she's in it for two or three days at a time.
You can put a onesie under it - and I frequently do, but it's a pain to change it out when it gets damp from a leaky diaper. T-shirts are much less likely to get icky.

3) Buy some babylegs/legwarmers or cut up some old socks to put over the leg portion of the harness. We got poop on one of the legs on the first day. The stain is still there, glaring at me in all its yellow glory. I now put babylegs over the leg portion so if they get dirty, I can just swap them out. Plus they're cute, and a little less distracting than the harness.

4) If anyone bought you outfits with pants, etc... better get your thank you pictures in now. Most days I just have Annabelle knocking around in a tshirt and diaper. (We cloth diaper, so at least they're cute)

5) If you have a drooler, or a kiddo that spits up a lot, buy LOTS of bibs. That way you don't have to change out the t-shirt/onesie underneath.

Cloth diapering with the PH, part 2

Annabelle has been out of her newborn diapers for almost two weeks now, and I've gathered a bit more data/opinion on different diapers with the PH.

Prefolds: feasible. No more a pain to put on with or without the PH. Not my favorite diaper option, but I tried it for blogging sake.

Contours - same as prefolds.

Fitteds - this is actually becoming my favorite option. Most of the fitteds that I'm using right now are the Muttaqin baby 3SR one size fitteds, and occasionally a KL0. The Mutts are more absorbent, and with a busy mama with a toddler and newborn, as well as Annabelle sleeping longer stretches, the Mutts are currently my fave. Especially because Annabelle has only been pooping twice a day with a few tiny ones in between. The extra elastic & gussets are NECESSARY!!!

Pockets/AIOs - a nice friendly option as always, but I've had more leaking issues because of gapping at the legs due to the angle that her hips have to be in the PH. Not always, but more than normal. I have mostly Bumgenius pocket diapers, a few BG AIOs, and my new favorite pocket diaper: the Rumparooz. RaR are WONDERFUL in that they have double gussets in their diapers. Sooo essential for NB poo.

Snaps vs. Aplix: Definitely prefer snaps since they don't drag across her skin. However, I've found with using fitteds/covers, if I pull the tabs of the aplix cover through the harness at the same time as the fitted and hold the aplix against the fitted, it protects her skin. A little more tedious, but better for my little girl. (I hope that makes sense!)