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, April 26, 2012

Same shoes

I've had a lot of support from people regarding Annabelle and her hip dysplasia. It's been an opportunity to educate people as well, as it's not a very well known condition.

The day Annabelle got her harness I posted a picture of her on facebook in her PH. I figure if I'm going to go on this journey, I'd rather have people know about it than hide it. The biggest blessing from doing that, was having my friend Davinne respond with "my daughter was in the Pavlik Harness last year, let me know if you have any questions." Little did she know how many I had.

I looked back through her albums of her daughter when she was in the PH - I got ideas for dressing Annabelle. I learned that babylegs work over the leg straps (and subsequenly keep them clean). I learned you *can* put a sleeper (babygrow) over the PH. You can put a onesie over it. After that, dressing her seemed a bit more exciting - she had a few more options for outfits.

Davinne and I messaged back and forth a few times, and I told her I'd love to get together to ask her questions. After a week passed and nothing had worked out so far ... She is our family veterinarian, and it turns out my dog was due for her annual vaccines, so I made an appointment for my dog to see her, and took Annabelle. She was an angel and stayed after my appointment to sit with me and answer questions.

She reminisced about her daughter in the PH with tears and emotions that I have been feeling for weeks. It made me feel less guilty for feeling them. It was reassuring to know that I was not alone in my grief over my daughter's (curable) condition. That even though there are much worse things out there, it's still difficult when it's your own child. That knowing this is what your child needs and hating every minute of it ... is normal ... and okay. We cried together. It was sooooooo peaceful to know that I was not alone - I *am* not alone. Knowing that she had been through this, and after 12 weeks in the PH and 8 weeks in a different brace, her daughter "graduated" with healthy hips was so reassuring to me. The thought of hearing those words makes me tear up even writing this. Healthy hips.

One day we will hear those words for Annabelle. And I will cry. But many other families will experience these feelings. And it's normal. These shoes have been worn before. And they will be worn again.

Monday, April 23, 2012

Adjustment #1 and current plan.

We saw the doctor this morning for an adjustment on the PH. He didn't have much to say other than that he could tell she had grown, and adjusted her legs for leg growth. He said the next two weeks will be critical to determine where we go from there. We have another ultrasound that morning and will see him afterwards.
If her hips are aligned, we will continue with the PH for two more weeks and then change to a removable brace.
If her hips are not aligned, they will schedule her for cast placement, which they will do under general anesthesia.
He said she has a slightly better risk of not having her hips aligned due to having hip dysplasia in both hips.

I cried on the way home. Honestly, the thought of Annabelle being put under anesthesia scares me more than the cast. It makes sense why she would need to be sedated, the thought just never crossed my mind.

These next two weeks are going to crawl ...

Saturday, April 21, 2012

Babywearing with the Pavlik Harness

Part of my upset about the PH has been that Annabelle has not tolerated being worn since she got her harness. In the seven weeks of her life before she she got it, she traded between my ring sling, Ergo and moby wrap - depending on the situation, and which carrier was closest. I have a mei tai also, but I was waiting to use it until she was older, so she could better tolerate the positioning.

I love babywearing. I loved it with Charlotte, and wished I had done it more with her. But, now it was seeming like a foreign possibility. I want to be able to go out and do things with her in a carrier, and this was looking like it just wouldn't happen while she has her PH.

I had tried the Ergo and Mei Tai both, as both those carriers by nature support healthy hip positioning. No awful crotch dangling like in Baby Bjorn style carriers.
Annabelle hated the carriers. Time and time again I tried with no luck. I was so sad - not only could I not bathe my baby and snuggle her with skin to skin afterwards - I can't truly snuggle her like I'd like to, because she doesn't bend that way anymore - but now, I can't wear her?

After googling today to see what other moms might have encountered. I realized I hadn't tried the Moby yet. I tried at the next possible opportunity. She wasn't happy, but that was more a case of hungry baby rather than uncomfortable baby. I fed her, and tried again. She slept, I snuggled, she snuggled, I cried. I finally got that moment back that I was missing and longing for.

Wednesday, April 18, 2012

Cloth diapering with the PH, part 1

(this post contains cloth diaper lingo, and assumes a basic understanding of cloth diapers)

It's taken me a week to formulate an opinion on cloth diapers with the PH (Pavlik harness).

It's feasible, no more or less than it would be on a baby NOT in the PH. Disposables might look easier at first, but given how much disposables leak, and how difficult it is to change clothes, I'm still voting for cloth.

Annabelle is roughly 10 lbs now at two months old, and still in newborn diapers, so I'll be rating three styles of diapers in this post.
I am mainly rotating between Lil Joeys (AIOs with snaps), Bumgenius XS (AIOs with aplix) and Kissaluvs fitteds size 0 (snaps) with a Thirsties XS cover (aplix).

Lil Joey: This is my favorite newborn diaper. It's thick, and I think double gussets are ESSSENTIAL with newborn breastmilk poo. The snaps are somewhat difficult to manage to fasten with the PH, but they don't scratch her legs when manipulating them through the straps.

BG XS: This is my second favorite newborn diaper (it's worked much better on Annabelle than Charlotte, her legs are a bit chubbier). Although it doesn't have double gussets, I don't have many leaks with this diaper, since Annabelle has legs that prevent gapping. The aplix is the main issue ... when working the tabs through the PH, it's very easy to scratch her legs, so extra caution needs to be taken here. However, when comparing to the lil joey with snaps, it's no easier to fasten the tabs.

KL0/Thirsties XS: a bit of both worlds of snaps & aplix ... except you have two sets of tabs to work through the PH straps (cover & fitted). The fitted generally holds in most of the poo, if not, the double gusset on the Thirsties seems to catch it. I adore using fitteds with wool, but my wool soakers can't be used with the PH so unless you have a wrap soaker (which I think I shall work on making one), wool is out. I don't mind using this combination when the PH isn't part of the equation, but now I generally avoid having to use them just because it's more challenging.

I do own contours and prefolds, but my stash has been big enough that I haven't had to try these out, especially with the harness. However, I shall work on trying them out for the purposes of this blog. Stay tuned ...

Monday, April 16, 2012

It's been ... one week

Annabelle has been in her harness for a week now. I think overall, we're getting pretty used to it. It's still cumbersome to change her clothes and her diaper, but I have a much better feel for it, and what is the easiest way to do things. There is definitely a learning curve, but not a big one. Clothes are a little easier, as I have learned a sleeper and dresses can go over the harness, and I even managed a pair of pants (although I don't recommend it).

I think my biggest struggle - is the limitations on what she can be dressed in, which is a bit selfish.
I think it dates back to my days as an 8 year old, playing with dolls. You have a doll, and you get to dress her in cute little outfits. You imagine the days when you have your own baby, and you get to do the same.

We found out in October that we were having a second girl. When I was pregnant with Charlotte, we didn't find out the gender of the baby, so there wasn't much thought into clothing. After she was born, people gave us cute things, and I loved getting to dress her in them. With my pregnancy with Annabelle, I was *sure* that she was a boy, so when we found out at 19 weeks that she was a girl (and it was VERY obvious she was), it was a bit of a shock. After a couple weeks, the excitement started building. All the cute outfits and dresses I remember Charlotte wearing - my new little girl would get to wear too! I was elated. I remember looking through all of Charlotte's tiny clothes and crying ... remembering the days she wore them, what we did on those days. I would get to associate a whole new set of memories with these clothes. (I am very sentimental when it comes to things). Before Annabelle was born, I washed them all with love, folded them up neatly, and dreamed. Even better, we had a *TON* of 0-3 month size that Charlotte was never able to wear - by the time she was big enough to fit in them, the weather was too cold. But this time, my baby would be able to wear them! Outfits that had lovingly been selected for Charlotte, that she wore maybe once, would be able to be used on Annabelle.

When we came home from the orthopedic doctor last week, other than fear for my daughter's future, was sadness about the clothes. Annabelle wouldn't get to wear most of them. I dug through the drawer that night with tears rolling down my face, and separated the clothes she would be able to wear from the ones she wouldn't.

A lot of this week was filled with anger at God. Why does He have so much confidence in my ability? Why us?
Fear. What if the harness doesn't work? What if my baby has to go in a cast - or even worse: surgery. The harness has a 90-95% success rate. What does that look like for TWO dislocated hips? That still means 5-10% of babies need more intervention than just the harness. I lost sleep. I had dreams of my baby in a cast with a hole cut in the middle for a diaper area. I had dreams of her walking funny. I had dreams of kids pointing at her and laughing because she walked funny.
Frustration. I know the harness has a great success rate - I should be happy about that, right? This is minor, right? It looks minor right now. Why do I feel this way, is this normal? THIS IS MY BABY, and I'm afraid for her, no matter how minor it may seem.

Friday, April 13, 2012

Tutorial: Changing a t-shirt/onesie

After our first nightmarish onesie change, I quickly learned to *NOT* loosen more than one of the permitted three straps at a time. It makes for a slightly more difficult clothing change, but the replacement of the Pavlik harness is much easier. Less stressful for me, too!

I taped this 'tutorial' of sorts, in order to show others how we did it, and to be educational for any of Annabelle's caregivers. I had to split it into two parts in order to post it on here.


Wednesday, April 11, 2012

Day Three.

I don't plan on writing daily, but I figure if it's therapeutic, why not?
I'm planning to post some informative posts - both about DDH and about baby care with the Pavlik Harness. I figure if my experience can help another family, then it's definitely worth my while.

Today was a lot better than yesterday. Annabelle slept well last night - six hours uninterrupted, followed by another two with me.
We had to do three onesie changes today, which are getting faster and a little less stressful, except for the one tonight where her onesie had poop on it. Dragging a poop covered onesie up her back and through her harness was no easy task - and she sure didn't appreciate the efforts.

She seems a little more content today, so that's good.

Tuesday, April 10, 2012

Day Two.

Dr Olney told us that Annabelle was likely to be fussier than normal in her new Pavlik Harness. Last night was rough. She usually sleeps anywhere from 2-6 hours at night (after settling around 1am) depending on the night. Last night she had a good 1.5hr stretch followed by waking every ~15 minutes. It was almost as if she wanted to stretch out, but she couldn't.
Today she pretty well wanted to eat if she was awake. She didn't get in much sleep, and if she did - she woke up fussy after a few minutes. We played this game all morning and afternoon. She did sleep in her carseat for a couple hours over lunch - enough time for James and I to get some lunch. This evening, she's been a bit happier, I just wish she though a reasonable bedtime was 9pm rather than 1am. :)

Other than the seemingly constant fussiness, I suppose we're doing okay with the PH. She was in the same onesie until about 7pm without any major accidents.
This afternoon she had a *HUGE* poo-splosion and a good amount got on her harness. Yum. We'll be carting that around for another month.
She wet through several onesies this evening, but I have gotten decent enough at changing them, I'm down to 3 minutes flat (yes, I timed it)
I also figured out that you could put a big enough sleeper OVER the PH, so at least she can go out in public without attracting too much attention.

It's been hard on me today - I want to snuggle my girl, and she feels like a toy - her harness makes her so stiff, she isn't bendable. She doesn't mold to my body the way she used to. Cradling her is awkward and unnatural. And I'm in constant worry that I have her hips in the appropriate position.

There is definitely a learning curve on this thing - I feel like a mom with a brand new newborn - awkward and unsure of myself. Breastfeeding has been a bit more difficult with positioning. Thank goodness she's a good eater. I haven't been able to accomplish anything remotely productive today.

Today I've struggled more with anger about having to go through this. Anger at God, anger at myself, and not knowing where to turn or who to talk to. I know it will get easier. I know this is the best thing for her and will hopefully be a relatively quick fix.
I'm still having a hard time though.

Monday, April 9, 2012

Meet Pavlik



sweet, smiling girl, and the back of the Pavlik harness

First clothing change

Okay, my first recommendation: if your child needs a Pavlik harness ... take a onesie!!!

Annabelle was asleep when we got home - and I had a horrific headache, so we both slept for a couple hours. She woke up and needed to eat. She had been nicely warm in her carseat with a thick blanket wrapped around her, but I set out to dress my girl - how hard could it be?

There is a strap that is meant to be chest level - it had shimmied down to waist level when I was dressing her - and I couldn't get it back up. She was kicking so much and straightening her legs with resistance. I called for help from my husband (who works from home), but he wasn't able to come help at the time.
After a good solid 5 minutes of Annabelle SCREAMING (hungry girl!), I managed to get the harness back to the desired location. Poor thing just started crying a few tears so that made it even more stressful for mama. Now after a big meal, she's a happy smiling girl.

Next time, I shall feed her BEFORE attempting to change her clothes. It's no easy task anymore.

It seems as though most clothes are out of the question at this point - no pants or sleepers. We shall be sticking to onesies and dresses.

First visit

We learned of the dislocations on April 2nd. We were scheduled to meet with the pediatric orthopedic Dr on April 9th. A week of waiting and worrying. I was sick with worry for my little girl, but also very grateful that it was caught early - if that pediatrician hadn't felt the click the first day - we may have not learned of these until she didn't walk. She was never breech in utero, so she would never have had a hip ultrasound otherwise.

Dr. Google to the rescue? It made me worry way more than I needed to, but it also gave me a heads up with what the likely method of treatment we would be experiencing - a Pavlik harness. A soft harness with lots of straps, that would work to keep her hips in the position needed to realign properly as she grows.

During this week I had a lot of (normal) feelings:
Will this correct with the harness like 90-95% of the time it does?
Will she need a cast or even scarier, surgery to fix this?
Will she have problems down the road like arthritis?
Will she have a limp or something that kids will make fun of?
Will she be able to run and play like any other little girl?
Did I do something when pregnant that caused this?
She's not in pain ... or doesn't appear to be?

During our first visit with Dr. Olney - he said that this is not painful like it sounds - not painful like it would be for us. Since babies bones are mostly cartilage (at least in the hips) at this point, it's not painful, and it's easier to fix. He said it was good that it was caught early, because it's easier to treat at this point (most of the time).

The plan of attack:
Annabelle wears the Pavlik harness 24/7 for a minimum of 4 weeks. No taking it off. Ever.
We have a couple straps that we can temporarily take off to change her clothes, but that's it.

It was a cold morning, so I dressed her in a sleeper and off we went. I had an extra sleeper in the diaper bag, but that was it. Come to find out, she can't wear a sleeper while in the harness. I didn't have a onesie or anything to dress her in ... so she came home in the harness and her birthday suit.

We go back in two weeks to have the harness checked, and another two weeks after that for another hip ultrasound. That will determine our next plan of attack.

I left the appointment feeling sick ... I had a horrible headache, so that may have been part of it. But I felt sick. I know it's minor in the grand scheme of things that could be wrong - but it's still my baby girl. The waiting room was filled with young children in wheelchairs and that slapped me back into reality a bit.

However, I felt the need to chronicle this journey - for anything but to be therapeutic for me to be able to release my emotions of this time.