Thursday, August 30, 2012

Ugh.



Signs you need to get yourself back into real life and get a hobby post baby:

-You are actually beginning to find Hoda and Kathy Lee funny instead of just crazy.
-You know the theme songs for all of those companies who give you money for your annuity or structured settlement.
-You have permanent butt indentions in "your" spot on the couch
- Leaving the house to go to the doctor is something to look forward to

Ok, so maybe it's just that I watch too much tv...

Thursday, August 23, 2012

Clubfoot Files: Casting Progress!





I've had a few people stop by this blog who are also dealing with clubfoot in their little one (hi!), so I thought I would update everyone on Harper's status.  I know I like reading other parents' blogs about it - the more info you can arm yourself with, the better!  It helps to hear what real people are going through.  Plus I'm just excited and happy for our girl!  

Also - can I just say how sweet all of you have been in your comments - both here, on fb, on twitter, etc - each one warms my heart and I truly appreciate it!!


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So, we got Harper's first cast on when she was a little over a week and a half old (read more about that here).  In sum = the doctor said her foot didn't look too bad, I cried, Harper didn't.  We all survived.


Her foot before casting


Right before the cast went on
In cast #1
In cast #1

We came in the next week to get her cast changed to the second one and the doctor said we were making good progress - hooray!  The angle her foot turned in was much less severe.  The doctor did a bit of stretching and put on #2 with no tears from anyone involved (that's progress too!).


After the first cast came off - progress! 

In cast #2

When we came in to get the second cast off, we got some great news - her foot was pretty much fixed!  In just two weeks, the stretching done by the cast had repositioned her foot so that it stuck out straight (forward) and did not curl inwards.  


After the second cast came off
 It's funny - the clubfoot is her right one - but because she's still all scrunched up - her left one looks like the cf one now!
After the second cast came off
Those scary marks are actually skin folds that are common on cf and that get smushed in the cast - creeped me out when I first saw them, but apparently they are fine.
After the second cast came off

After the second cast came off
The only part missing was the dorsiflexion (the part that lets your foot come upwards towards your shin - essential to walking). You can see this in the above pictures, as her toes point towards the ground instead of out at a 90* angle from her leg.  This is the part of clubfoot that usually requires the tenotomy, since the Achilles is usually too short to allow this range of movement.  So we got her 3rd cast on last week, with instructions to come in this week to see the surgeon, who would examine her foot and schedule the surgery.


In cast #3
Well, we went in yesterday and got even greater news - no surgery needed!  Her foot was pliable enough that the doctor thinks stretching will do the trick.  We were relieved, to say the least.  While the surgery is not that big of a deal technically, it would have required a spinal block for Harper and an overnight hospital stay - so the fact that we're avoiding that is wonderful.  Apparently a good 90% of cf need the surgery, so we really are dealing with a much milder form than many others do. (gratefulness all around!)


After cast #3 came off

After cast #3 came off. Nice pig face Harper!

After cast #3 came off.  Yucky casting gunk.

After cast #3 came off

So instead of surgery, Harper is now in a cast that will stay on for 3 weeks instead of the usual 1 week.  The doctor stretched her foot out and pushed the heel downward before applying the cast, making it look like a right-angled foot instead of a turned one like the previous casts.  She will then do an xray after the 3 weeks to ensure the bone is in the right place before moving forward.  If for some reason the stretching wasn't enough, we can always do the surgery then - it's not like we've missed our window or anything.  I'm glad the doctor wasn't pushing surgery if we didn't need it.


Her 3 week cast to stretch her Achilles - looking like a normal foot!

Our next step after this cast will be the bracing setup.  Harper will wear this lovely contraption for 23 hrs a day for 3 months straight.  


via
From then on it will be worn during night and naps until she is 4 years old.  Although we have a milder case of cf, 4 years is the recommended time for anyone, regardless of severity.  That way, there is a much lesser chance of relapse.  We certainly don't want to have to come back and repeat casting, or worse, have an older child who does not have proper use of her feet.  So while that process will really suck, I know it's worth it.


If you're reading this and happen to be getting casts soon, here are some things we learned (each case is different, of course, but this is what happened/worked for us):
  • It's not that bad.  Really.  Surprisingly.
  • Your baby will pee into the cast.  And poop will get on it.  It's ok.  They get changed frequently.
  • Get some bigger socks.  The tiny newborn ones won't go over her cast, but bigger ones will.  Sometimes those little exposed toes get cold.
  • I was afraid her uncasted leg would get really raw from rubbing.  Really there's just a sore spot on her foot.  We just keep a big sock on it and that helps.  Pants that are loose would still work with the cast, but because it's hot out, we never really put her in any.
  • She sleeps in a Halo sleep sack - plenty of room for the casted leg and keeps her warm since she can't wear traditional jammies.  
  • Expect some fussiness the day of the casting.  Luckily, Harper was never too bad, though.  Also expect the feet to look pretty weird when they come out of the cast - there is some extra skin that will get folded and will look like a cut or sore, but it isn't.  The plaster gets everywhere too - you will be peeling it off her tummy, face, etc.
  • A rolled up receiving blanket under the leg helps when baby's lying flat or riding in her carseat.
  • Don't assume people are going to be totally rude about it - so far, we have had nothing but well-intentioned, polite, curious questions.


Also, as a bit of an aside - we sit in the waiting room of the orthopedist each week and feel immeasurably grateful.  Not only are we close to a great practice and have the means to get Harper treated (hellllllo insurance yearly maximums), we also are dealing with an issue that fixable with minimal treatment.  The office sees a wide variety of patients, and we are just so grateful to be dealing with just clubfoot.  We have a lot to be thankful for.

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And now, for the mombragging segment of this post:  




Anyway, other than that, Harper is doing great!  She's eating well and sleeping well, except for those pesky witching hours in the evening.  

It's clear she's going to take after her dad in more ways than just looks.  She's always warm, hot even, sometimes sweaty.  She sleeps in just a diaper and a cotton sleep sack (with her arms out) and is still warm, despite the cool temps in our house and a fan in her room.  I walk around in long sleeves while she's naked and hot.  Apparently, Tony was the exact same way as a baby and still is!



She's also active and quite the mover.  I know the cast is giving her an unfair advantage, but she will roll from being on her back to her left side then back to her right side.  Sometimes I find her sleeping on her side.  This scares a paranoid momma like myself... We stopped swaddling her about a week in, mostly because she hates it.  She likes to have her arms free, moving around - unfortunately this often wakes her up, but it's not worth the swaddling fight!  I also am afraid she is going to flip herself over somehow and I want her arms to be out anyway.  She's strong too - rearing her head up and back, trying to jump out of your arms, etc.  Don't even think about trying to change her diaper when she wants to curl her leg up.  She can even lift up that heavy cast and throw her legs around.  Again, apparently Tony was quite the mover and never wanted to be cooped up.  (He's still like this as an adult, so I believe it!)

Harper will literally attack anything that gets near her mouth, shark bite style.  Let's just say I'm feeling the effects of this... but she will do it to a pacifier, a finger, anything.  This girl has jaws of steel.  Good for her eating habits, but bad for my body and for the times when she's eaten more than her fill but still wants to gum something.  She's finally starting taking a pacifier, which helps.  She's still spitting up a lot, probably due to the aforementioned activities, but she's gaining weight well, so really it just means about 3 daily loads of laundry for me.  No matter how well I position a burp cloth, she finds a way to spit up directly down my shirt.  Never fails.  I'm thinking of getting an smock.  Or a wetsuit.



I can't believe we've had this girl for a month now - it feels like forever, but somehow, time has flown by too.


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Check out all of my other Clubfoot Files posts here!
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Wednesday, August 15, 2012

Weekly Photos: Bumps and Babies

I had a lot of fun taking weekly photos of my growing baby bump.  I could never come up with something super creative, so I just went with the standard profile shot and fruit/veggie size comparison (seriously, half of the foods used are so obscure...)  I also decided to add three little snippets of what was going on that week. Sometimes I was grasping for news, other weeks there was much more going on.  I won't subject you to all of them, just a few select ones here - and the overall collage, which I think is pretty crazy - was I really that big only two weeks ago???

You can watch both my belly and my face get rounder!  I'm also greenish in many of the early ones.  Oh, and true confession:  I did a little editing of these in Picnik, then in PicMonkey once that was gone.  I figured if I couldn't safely whiten my teeth then I would do it digitally.  :)  The background wasn't ideal, but honestly, it was the only place in our house where there was a blank wall not interrupted by art or a window or something.













I wanted to stay true to the date I usually took the photos...and since I had a newborn, I wasn't quite up for fixing my scary hair/face.  Forgive me.

I liked that I was able to track pregnancy milestones through the photos, so I'm going that same route with Harper's weekly pics.  Now, I know weekly pics are a bit overboard, but I figure I'll count that as a hobby since I will be home with her for the first year and don't really know what we'll do with our time once she's a little less demanding... so, we'll take photos.  I love her sheets so much - so they are the backdrop.



I think I'm going to add a page to my blog where I can post these weekly - they won't show up as posts but will live on the blog if you're interested to see what she's up to each week (I know you are!  ... Mom? ...)

Not only will it be fun to see her grow, it will also serve as a bit of documentation of her treatment process.  I sure do love this cute snuggly baby. :)

Monday, August 13, 2012

Newborn Photos



It's all Harper, all the time around here, huh?  Well, she's pretty central to our lives right now (and will continue to be!) so it can't be helped.

When she was 6 days old, we had newborn photos done by Graceology Photography.  They did a great job with her, were super nice, and took some really special pictures - all for a great price.  Here are some of the photos (all from their site).  If you live in Atlanta check them out!  I will definitely be using them again for pictures as she gets older. :)


Granted, she was less than a week old so we didn't really know how she would act - but she was seriously as awake as she had ever been in her whole life right as we got there.  So much for the snuggly pictures where the baby is folded in half or curled up... but instead we got lots of great ones with her eyes open - and that works for me.

















Thursday, August 9, 2012

Clubfoot Files: The First Cast



Motherhood has a way of making your heart grow and expand in ways you never thought possible, but also makes it ache in ways you never fully understand.  While you are still yourself, you are someone completely different. It's no longer about you - it's about that little girl who you want to never take your eyes off of or ever let go of (well, as long as she's not screaming :) ).  It's about the cries you wish you could stop with your own tears.  You do silly things like forget to eat or stare at her breathing or catch spit up with your hands.  If you're crazy like me, you have a moment while still in the hospital where you imagine your little girl grown up and having her own babies and you tear up wanting to stop time already.  It's already flying by too fast.





Friday was a hard day for me.  We had our first visit with Children's Orthopedics in Atlanta for Harper's clubfoot.  After her birth, we saw that indeed her foot was turned in, and although the pediatricians (ie - NOT ortho specialists) said they thought it was positional (meaning, it was caused by how she was situated in the womb, not a genetic issue) since it could be manipulated, I tried to not get my hopes up that we would get some sort of abbreviated treatment diagnosis.  

I knew it was a possibility that she might get her first cast on at that first appointment, but I guess I was just trying to pretend nothing was going to happen at all.  The night before the appointment, I was upset.  While Harper has been a great baby, we are still trying to figure out what works for her and how in the world to care for a newborn.  I didn't want the compounded issue of a cast that we would have to figure out how to deal with.  I didn't want to deal with the stress of driving to Atlanta and figuring out when and where I was going to feed her and what stuff I needed to bring.



But mostly, my heart ached for the little leg and foot that I wouldn't be able to touch or rub or even see.  I hadn't gotten enough pictures.  I hadn't kissed her little toes enough.  I hadn't snuggled my baby in my arms without the interference of a hard cast for long enough.  My heart wasn't ready.

We got to the appointment and met her newest doctor.  He was very nice and took the time to explain everything to us.  He even trained with the doctor who invented the modern treatment for clubfoot.  While we knew most of what he told us, it was so nice that he spent the time explaining it all and answering my questions.  I felt like a somewhat capable mother, since I did have some educated questions to ask and wasn't going in there completely blind.  After a quick look at Harper's foot, he confirmed the clubfoot and told us that regardless if it is positional or not, it doesn't affect the treatment process - it's all corrected the same way (which I described in detail in this post if you are interested) and there is no real way to determine what caused it.


He confirmed we would have to get weekly casts put on for the next six weeks or so, followed by a tenotomy (they have to cut the Achilles tendon to allow the foot to move more naturally - apparently it grows back on its own and is a relatively easy surgery).  She will then be put in boots connected by a bar that she will wear for three months, 23/7 (she gets an hour break a day).  From that point on, she will wear the brace only during sleeping times until she's about 4 years old, depending on how her foot responds.  The casts sound bad - but really, that's the easy part.  The hard part is the brace, which will require Tony and I to be extremely diligent to ensure she doesn't relapse.  After explaining it all, he said we could start the first cast that day.

He left the room to get the needed supplies, and I immediately began to cry.  I quickly took this one last picture of her little legs.


There was just no holding in the tears.  I know I'm raging with hormones right now, but I was just so sad to know the process was beginning - that her little foot would be hidden for the next few months and we were all in for a bumpy road.  I cried and cried, feeling silly as the nurse gave me a little hug.  Harper cried, but mostly because she was getting messed with.  She wasn't in pain and was definitely happy to get a few minutes to suck on her pacifier treated with some sugar water (an awesome nurse gave us a stash of those things at the hospital since we had to get so many heel pricks for her jaundice testing).  We haven't used it at home - it will just be for emergencies like getting a tiny cast put on :)  The doctor did a traditional plaster cast on just the foot itself, then covered that and the rest of her leg in the soft cast material (that's actually still hard, but I guess not as hard as the plaster kind... more so nylony).  The soft cast can be peeled away for removal, but the little plaster cast will be cut off (with a saw...).  At least it's just a small one - and bonus points - we get to keep it.  That will be fun to show her one day.


She seemed a bit fussy that day and the next... but really I don't know if that's just the unrelated product of her getting older or what.  The cast is pretty loose at the top -  I can stick my finger down in it, which I like - and she doesn't seem to be bothered by it rubbing when I hold her up against my chest.  Nursing is a little trickier, just because she's a little more unwieldy.  I was worried her other leg would get scratched up from it, so I had a little legwarmer on it the first day. However, it doesn't seem to rub at all so I stopped that.  Her toes stick out of the bottom and we can check to make sure they're getting proper circulation by pressing them.  

All in all, the first cast wasn't too terrible, although the doctor did warn us that subsequent casts are sometimes more uncomfortable for the baby, since the skin under it becomes super-sensitive over time from being covered up.  Can't wait.





Oh hey!  I'm ok!

The aftermath... days later...

It was certainly worse for us than it was for her.  While my head is telling me I'm glad the process is begun so she will be healed sooner, my heart just aches for my little girl.  And perhaps just a little for myself.




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Check out all of my other Clubfoot Files posts here!
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