Wednesday, October 19, 2011

Un-harnessed

Home 7 1/2 weeks.

A few weeks ago I found an old article on people.com about Brooke Shields. In it she was discussing her daughter Rowan's hip dysplasia. The article says this:

"Every time they tightened the harness, Rowan would scream. Chris always tightened the harness-Brooke didn’t want to, nor did she want to hold Rowan. She had to even be baptized in the harness. Brooke wrote about how beautiful Rowan looked in her dress, but then the harness sticking out underneath was just heartbreaking."

And this:

Brooke said, "when you’re a new parent and you have a child that has any kind of special need you rely so much not only on the ability of your surgeon or your doctor but the compassion." Brooke said that she had Dr. Skaggs cell phone number and that she would call him when she was "terrified" when she had trouble changing a screaming, crying Rowan’s diaper while she was wearing the harness.

First of all, you know you're a celebrity when you have your pediatric orthopedic surgeon's phone number on speed dial so he can talk you through diaper changes. Secondly, Brooke Shields needs to suck it up because she was one of the 90% of parents whose baby's with hip dysplasia are fixed by being in a harness.

We, unfortunately, are not.

We found out yesterday that Kaia is going to need a spica cast. She has been in the correct Pavlik harness for two weeks and her surgeon wasn't seeing the improvements that he wanted to. Namely he could still pop her hip in and out of joint. By this point, we were hoping that the hip would be in socket and staying in...but alas, things are always more complicated for us.

As he said "90% of the time, this works for babies that are as young as your daughter, but 10% of the time we have to move on to casting". HA! Sorry doc, I should have mentioned it, but it seems like for our family if things have a possibility of being more complicated than originally expected, then they will be.

As of now, Kaia is out of the harness until her surgery which will be sometime in the late winter when she is between 4 1/2 to 7 months corrected age. Likely February. She will be put under anesthesia, a small incision will be made in the groin area to release the tendon, and then her hip will be put back into the socket. A body cast will be applied (it will go from her nipples to her toes keeping her in 'frog' position) and then she will spend the night in hospital. She will wear it for 12 weeks and then we hope like hell it stays fixed and doesn't need any more 'work' (ie: further surgery and re-casting). I hope we can get it all behind us before the weather gets hot because it seems cruel to have a kid in a cast when they could be swimming instead.

I'm sad, but resigned.

I think I would be a lot more upset if Kaia had been my first baby, born without complications or anxiety. Because of all the things I knew could befall her after my water broke (death in utero, death out of utero, no lung development, poor lung development, heart defects, extreme prematurity, brain bleeds, NEC, ROP), hip dysplasia is WAY down on the list of 'awful'.

But it still sucks.

I was really hoping we were already 2 weeks into a 12 week stint in a Pavlik harness. We were getting good and fast at threading the tabs under the straps during diaper changes. I had finally found 0-3 month outfits that were both practical and cute that fit her harness (the footless one pieces that have the snaps up the inside of the leg seams). Kaia was getting more tolerant of sponge baths. Now it doesn't matter, at least for the time being.

Last night we 'celebrated' by plunking her in her tub for the first time in two weeks. She actually wasn't even that dirty. Just some dead skin build up on her feet. I plan to take full advantage of this time when I can dress her in whatever I want. I'm going to go buy 0-3 month pants this weekend. Maybe even some tights, with cute shoes to go along with it!

While I will enjoy having my cuddly baby back for now, I'm sad that she will be older and more 'aware' when she's put into the spica. Right now, she's been in a harness since she was 36 weeks gestational age, (albeit a crappy harness for the first 7 weeks), so she doesn't really know the difference. I feel like when it comes time to putting her in the spica, she'll be at the age when she will be used to sitting up, rolling over, grabbing her toes...and then all of a sudden she won't be able to do those things anymore. I know she'll get use to it, but it's just another thing we have to contend with.

But in some ways I'm grateful I know it could be so much worse. So like Brooke Shields should have done (seriously she didn't want to even HOLD her baby??), I'm going to suck it up and move on. And for the next 4 months we are going to rock out in some super cute outfits!

*P.S. Okay Brooke Shields you get an out for also having postpartum depression. I suppose that plus having a kid in a harness would be a bit much to deal with. But I stand by my comment about having your ortho on speed dial. Because if she hadn't shown off her boobs in Blue Lagoon I'm pretty sure he would have blocked her number.

6 comments:

  1. Brooke Shields actually had a bad case of ppd. I read her book "Down came the rain". I am sure the not wanting to hold the baby with the harness stemmed from the ppd. She went through infertility, miscarriage, a difficult birth then got ppd which was untreated for quite some time.

    Everyone has a story.

    I am sorry Kaia is going to be casted for so long :(

    ReplyDelete
  2. I'm sure you're already thinking about such things, but here's a site that talks about the cast and sells special rompers that fit over them.

    http://spicawear.com/spica_cast_clothing_our_story.html

    My thoughts are with you.

    ReplyDelete
  3. Oh, man. It just doesn't stop for poor Kaia! I'm glad you'll be able to spend some quality non-harness time with her until the surgery, but yeah. It sucks.

    ReplyDelete
  4. I had no idea what a hip spica cast was when I first read this post. Today at work we just so had a patient come in with one on and I had to x-ray this little girl. It definitely doesn't look very comfortable, poor Kaia.

    ReplyDelete
  5. I looked at the earlier comment from Megan re/ rompers, and I really like the fact that someone thought of that... also on that site they talk about practical stuff like the stroller and the trip trapp high chair. I agree with you, compared to the other bad stuff that could have happened, it is not a big one, but it still sucks just as much as it ever would, you just have more prespective, that's all. Emma has reflux, which really is a very small deal, but her non stop screaming still upsets me. And that is nothing compared to a body cast...

    ReplyDelete
  6. I think I told you before my niece had the harness after she was born, and is a fine 14 y/o batton twirling/gymnast.

    I am curious about the treatment thought, is she in any pain when not in the harness? Are there any other premie/pprom issues since she was born?

    I think she is beautiful btw...I am so happy that she is home and happy and (relatively)healthy :))))

    ReplyDelete