Tips for Babies With Club Feet

What I Wish I Had Known Beforehand

I got a call today from a dear friend whose baby will be born with clubfeet and I was spouting off tons of tips for them and realized I should just make a blog post about it for others to read.

There are three main phases to the clubfoot process, the casting phase, the bracing phase 23 hours a day for 3 months, and the brace at night till baby is 5 years old phase

Clothes:

Casting Phase

What you will never use:

-Zip up sleepers and snap sleepers with feet
Your baby isn't ever going to wear a zip up sleeper...ever. Don't buy them- if you get them as gifts return them ASAP.  (remember they are going to be braced till they are five years old at night so a zip up sleeper would be torture to take on and off if they have an accident at night).

-Pants or shorts (trust me you wont want to deal with these during the casting phase a)

What you will need lots of
-Onesies and leg warmers
Buy at least three pairs of leg warmers that are the larger size not the newborn size
(you can also just use stretchy socks)
The purpose of the legwarmers and socks is to put them over the casts up to the top to make sure that poop doesn't get on the casts. It happened to us and trust me it is stinky and poop doesn't come off.

-Layettes are a lifesaver. They work brilliantly with the casting process and fantastic with the bracing process too.  I highly recommend just buying like two really nice ones that are really soft like the ones from Kickee Pants (they are pricey but so nice)

Bracing Phase All Day

What are a pain to use
-any sort of pants, bloomers, shorts, etc
They aren't impossible to use it is just that you have to unclip the ponseti bar every time you want to change the baby, by all means if you want to deal with it then go for it.

-zip of sleepers (forget it)

What you will need lots of

-onesies and legwarmers
now you want to own some newborn sized legwarmers. I love the ones by baby legs. This is just my preference but I love the kimono style onesies (the kind you snap around and don't pull over the head like the one below)

-if you have a girl I highly recommend dresses and cute skirts to put over onesies, for boys just rock the onesie and legwarmers
-snap one piece outfits without feet (if you find one you love with feet just cut the feet off the bottom)
-Layettes are a lifesaver. They work brilliantly with the casting process and fantastic with the bracing process too.  I highly recommend just buying like two really nice ones that are really soft like the ones from Kickee Pants (they are pricey but so nice)

Swaddling during Casting and Bracing

Halo Sleep Sacks

You are gonna need 2 newborn sizes and 2 next size up.  Make sure they can swaddle your baby and once they out-grow the swaddle you can just buy the sleep sack without the swaddle part.

Baby Gear

Sleeping

The casts and braces are really heavy and babies can use them as leverage to flip themselves over onto their face.  Because of this I don't feel comfortable letting Vi sleep flat on her back until she is able to roll over face to back and back to front with the brace on.  I have her sleep in the MamaRoo which I think is a brilliant thing. It works as a bassinett, swing in one.  At night I just snap her in by placing her in her layette, then the halo sleep sack over that, swaddle her arms and then I cut a hole on the back of the sleep sack down below her bottom and unzip the front of the sleep sack and pull the snap restraint through the hole. She is snapped in all night and I don't have to worry about her rolling in her sleep.  She will sleep in this until she wont need to be swaddled anymore and when she can rollover with the brace on.  The MamaRoo is also nice because it adjusts in positioning it can sit the  baby way up or lay the baby down.  I have it lightly rock her all night while she sleeps and many nights she sleeps 7 hours straight.  I realize we will have a hard transition to crib, but with these braces it didn't want to chance her rolling onto her face while sleeping.

Baby Bouncer (find one with a wide base)

Car Seat
I would almost recommend going straight to the all in one car seat and skip the infant bucket seat because until they get bigger the brace can get stuck on the sides and they can use the car seat as leverage to pull their feet out of the brace.  The problem is then you have to always transfer your baby from car seat to baby carrier or a laydown stroller every time you want to run an errand. If you do do the bucket seat I recommend putting some padding under the babies feet and try to prop them forward in the carseat so they can't get their feet stuck.

Convertible car seat with a flat bottom like this from Buy Buy Baby






Baby Carrier
Can't use a sling
Moby Wrap works well
Baby Bjorn works well
Ergos put their feet out too wide so can't work with brace or cast

As I think of more things I will add to this

Reference my other posts Here and Here and Here



 

8 Years

8 years!!!

I can not believe we have been married for 8 years.  You are the love my life. Thank you for giving me a beautiful baby girl and being so great and helpful with her.  I can't wait for Vi to have you wrapped around her tiny little finger.

 

Thanks for giving our daughter your sexy looks.

Paul is on the left, Vi in the middle, and me on the right (I look like any angry old man).  Doesn't she look like Paul?

PS. to see what Paul looked like with hair, check out our wedding photos in Hawaii.

 

Vi's One Month Photo

I wanted to use the same chair to see how big Vi gets over the next year.  She was not happy in any photo I took. I really like the bottom one she is like "Hey".  By the way at a month old Vi already weighs 10 lbs 9.5 ounces (over three pounds gained since birth 7 lbs 6 ounces).








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Cast Removal and Cast #2

Valentine's Day was the removal of Vi's first cast and application for cast #2.  We had to take the cast off her ourselves by soaking her in a tub of warm water with about 1/4 to 1/2 cup of white vinegar.  We used a plastic tote because we didn't want the plaster in my tub and then in our pipes.

It was quite the process and utilized Paul, me, and Grandma Shari. The whole process took about 40 min to soak the cast and then peel it off.  Vi loved that whole process, I was worried she would scream the whole time, but she thought the water felt great and loved having the casts off.  After the casts were removed she got to have a bath, a real bath not just a sponge bath.  It was great.  I was amazed by how much her feet had turned out in just one casting.

Once she had her bath we took advantage of the hour before leaving for her appointment by trying to do a Valentine's Day photo shoot at home.



At her Dr. appt we got to weigh her with her casts off and she weighed a whopping 8 pounds 8 ounces.  At 17 days of age she had already gained over a pound from her birth weight of 7 pounds 6 ounces.  The dr measured her progress and she went from being an 8 out of 20 to a 2 or 3 out of 20 (that is a good thing, the lower the score the better) and told us she would only need one more cast.  What normally takes 6-8 casts Vi was going to accomplish in 2. We were really excited about that.
 Here she is getting cast #2 on.

As you can see she hates her new cast.  She had a horrible 48 hours post cast. Screamed all the time and was very fussy. It is definitely not easy to watch.  I felt horrible for my little babe.

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Cast Removal #2 and Ponseti Brace

On Feb 21 we had to prep Violette for tendon surgery.  The plan was that she was going to need a tenotomy (a process where both Achilles tendons are cut) and then recasted in a new foot flexed position for 3 weeks allowing the tendon to regenerate.  I was sick just thinking about it.  We had to remove her cast just like the week before and then put Lidocain on both of her heels and ankle area.

When we arrived at the Dr and they did their measurements we got wonderful news. Vi didn't need the surgery as she had enough flexibility in her feet. Only about 10% of clubfoot kiddos fit into this category, the other 90% need the tenotomy. The Dr said that Vi had just as much flexibility as a newborn without clubfeet and that the dr would be ecstatic to get this kind of flexibility after a tenotomy surgery.  So no surgery for my little girl!!!

Vi was fitted for her ponseti brace that she will wear for the next 3 months 23 hours a day.  We were given stretches to do to her feet to keep her flexible and were told to do them when the brace is off for her hour break.  She looks like a little snowboarder with her brace on, so stinking cute.

So far she hates her brace.  The first set of shoes were too big and she kept slipping out of them, so today we got smaller shoes and I am praying they will work better and she will stop screaming bloody murder.  This is hard, real hard.  Having a newborn is hard enough, add this on top of it and I think Paul and I are about ready to loose our minds.


 

Miss Vi and her adorable Club Feet

Yes you have read correctly, my sweet precious darling has been diagnosed with clubfoot on both of her feet.  I was a bit concerned with how turned in her feet were at the hospital and seeing as we have family history of club feet my pediatrician immediately referred us to Denver Children's Hospital's Orthopedic Surgeon and Team.  We went on Thursday February 7, and came home with tons of information, broken and hopeful hearts, and two casts on Violette's legs. 

I would be lying if I said this has been easy.  Changing a diaper is hard enough, now try doing it with two casts all the way up to the baby's hips.  You thought a blowout diaper was a pain before, now realize you can't bathe your daughter to get the poop off and yes now it is on her casts.  Finally we were getting the hang of breastfeeding and now we are starting over because the positioning is all weird and she is not happy about it. 

I will remain hopeful though.  In the big picture of life clubfeet is so minor and fixable. There have been several famous and gold medal winning athletes born with clubfeet like Mia Hamm and Kristy Yamaguchi and not that Vi has to win a gold medal, I would love her to have a life of enjoying the outdoors and athletics to some extent.  This is what I know

1. We will be doing the Ponseti method involving a serious of weekly casts to fix her feet
2. Her feet aren't as bad as many (she rates an 8 on a scale of 20, 20 being the most severe)
3.  She will have anywhere from 4-6 casts to fix her condition
4. After the casting period she may have a minor surgery involving clipping and stretching her achillies tendon and then recasting for 3 weeks
5.  She will then wear these crazy cute shoes that turn her feet out and have a metal bar between them for 3 months
6. After the 3 months she will continue with this brace when she is napping or sleeping until she is 5 years old to ensure she doesn't relapse.

Just typing all of this makes me tired.  But if we take it one day at a time it is gonna be fine.  I even found a couple blogs with families dealing with the same thing and it has been really helpful.  Check this one out cause it has good info.

 

Violette's and My Birth Story

Since I am a first time mom, it was a little bit tricky to decipher if and when I was in labor.  I had a hard time timing my contractions and finding regularity until there was no guessing anymore. :)  I had had braxton hicks contractions throughout most of my third trimester, yet they were an extreme tightening of my upper belly and nothing like a period cramp.

I started feeling really nauseous on Thursday and after googling all the signs of labor I was convinced that the end was near.  On Friday I went into the doctor's office because I was having weird cramping in my back and left the office feeling a little bummed as the doctor checked my cervix and said I was only dilated to 1 cm and that my cervix was still really high so there wasn't much of a chance of the baby coming that weekend.

Sunday morning I went to my prenatal water aerobics class because I was having lots of back pain and getting in the water was the only thing that relieved the pressure and when I got home I started experiencing a very mild period like cramp.  I didn't think much of it and continued my daily activities.  The cramping didn't really increase in intensity until like 3 am.  Around 3 am I woke up to the thought that I peed my pants but I wasn't sure if it was pee or if it was amniotic fluid (sorry TMI but I want to save this story for myself for later) and I texted my doula to see if she could help me decipher if I was in labor.  I went back to sleep and woke up around 6:30 am with a slightly more intense cramping sensation.  Looking back I think I was just hanging out in early labor for awhile but I was in denial.  By 7 am Paul had to take our friends to the airport (they were out visiting and helping Paul finish the basement) and as Paul was leaving I told him I may be in labor, but I am not sure so please hurry up.  Well by 7:30 am I could only deal with the contractions on my hands and knees and I was crawling around my house trying to pack my hospital bag, by 7:45 am I called Paul in tears asking when he would be home and pleading that I needed to go to the hospital, by 8 am I called him and was swearing like a sailor pretty much expressing that he get home immediately and get me to the *$(&ing hospital or this baby is gonna be delivered at home. We called our dr's office and told them my contractions were 3 1/2 min apart and they wanted us to come in first before going to labor and delivery because my dr was out of town, which I thought was insane, but luckily the office was on the 2nd floor of the hospital and labor and delivery was on the 3rd floor.  The car ride to the hospital felt like forever and I started making Paul count very slowly when I was having a contraction so I had something to focus on.  Finally we arrived at Boulder Foothills Hospital and at this point my contractions were insane.  We got off the elevator on the second floor and I had a contraction so painful it brought me to my hands and knees.  The staff ran and got me a wheelchair, took me back to the dr office, and had me get ready to have the doctor check my cervix.  Well when the Dr. walked in I was on my hands and knees on the bed with my bare butt in the air and this is how I met my delivery doctor for the first time.  I told her if she didn't hurry I was gonna have this baby in her office so she checked me and confirmed what I already knew, I was 5 cm dilated 90% effaced and at a station 0. They whisked me upstairs and just in that time I had 3 different contractions so bad I had to scream for Paul to stop pushing the wheelchair and get out onto my hands and knees then get back in the wheelchair when the contraction was over.

In the short time I went from floor 2 to floor 3 I am convinced I entered transition (the dilation of 7 to 10 cm) as I was acting nuts and not myself.  I was begging the nurse for an epidural and she said the anesthesiologist had 2 patients before me so I had to wait and anyways she had to get an IV line started and get me on fluids. She was twiddling her thumbs and taking her sweet time and I was so desperate for pain relief that I said very loudly to Paul "how do I fire her? I want a new nurse."  Needless to say that nurse never came back in my room and I had a new nurse in seconds who had an IV in my arm immediately.  All I remember is that I had to stand on my feet and bend over during the contractions and had to make Paul count nice and slow.  Before the pain was diminishing by around 18 slow seconds (probably around 30 seconds) and now the pain wasn't easing up until about 50 seconds (about a minute and a little bit) and I was really struggling with not losing my mind. When I stood up for another contraction my water had broke all over the bed. The nurse asked to check my cervix before the anesthesiologist came to give me the epidural and I shouted "no one is going near my vagina until I get some drugs" (I told you I had lost my mind). Pretty soon I was on my hands and knees on the bed yelling that I had to push and I started trying to push my baby out.  My labor was going so fast.  Soon my savior arrived and made me sit for about 15 min while he gave me the epidural.  Paul said I had the craziest eyes he had ever seen since I couldn't stand up for my contractions, I had to remain seated.  Once it was administered (and by the way it didn't hurt a bit) I started to feel relief fairly quickly.  The anesthesiologist did such a good job that I didn't loose function of my legs and could still feel my contractions enough to push, it just dulled some of the pain.  The nurse checked my cervix right after the epidural and I was 9 1/2 cm.  I went from 5 cm in the DR office to 9 1/2 cm in under 40 min.  That progression usually takes first time moms hours to do.

After I was experiencing some relief and a moment to breath, I had Paul put in Harry Potter 4 so I could watch it and relax (funny I know but I napped to a Harry Potter movie like everyday of my pregnancy so this was soothing to me), the nurse had me lay on my side to help finish the dilation process.  I could still feel immense pressure and was very uncomfortable and kept asking when I could push.  About an hour later the dr came in, Dr. Laura Cieslik (by the way did I mention that I love her) and told me I was now dilated and ready to push. I loved how the lights stayed dim expect for one spotlight and the only people around were my Dr., my nurse, my doula and my amazing Paul.  It was very private and peaceful and I remember looking outside and noticed it had started snowing.

 I started pushing and the Violette's heart rate kept dropping.  The Dr. put me on oxygen to help and told me that there may be a chance we would need to vacuum her out and need an episiotomy.  I wanted whatever would keep her safe, but was now very motivated to get her out.  The Dr. kept trying different positions to help keep her heart rate up (I tried right side, hands and knees, and left side) and eventually having me push while laying on my left side did the trick.  The dr asked what my baby's name was and I told her Violette and she kept talking to her saying "now Violette we need you to keep your heart rate up" and every time she called her by name the heart rate bounced back up. It was really cool.  I pushed for a total of 45 min and out she came purple as can be with the umbilical chord wrapped around her neck twice.  We didn't need to use the vacuum or perform an episiotomy (thank goodness). I watched as the Dr unwound it and the nurses whisked her away right beside me to suction her and get her breathing.  She wasn't crying and I was terrified everything was okay. I remember crying and asking Paul if she was okay.  Paul was by Violette's side and reassured me that she was breathing and her heart rate was back to normal.  So I guess miss Violette wanted to be named Violet after all since she came out the color of her name.

I just remember while they were cleaning me up looking outside and seeing a beautiful snowy day and kept smiling that my little girl was delivered safely on a gorgeous snowy January afternoon at 1:36 pm weighing 7 lbs 6 oz and 20 " long.

I was able to walk fairly quickly after the delivery (great job anesthesiologist) and was transferred to post pardum recovery.  Our room had a queen sized bed for Paul and I to share and views of the flatiron mountains to kill for. Prime Boulder real estate :)  The nursing staff at Boulder Foothills hospital was amazing and I would highly recommend every woman to deliver here.  I had a fabulous experience (aside from the 40 minutes I wanted to kill everyone).

We are in love with our new addition. Welcome to the Stone clan Miss Vi.


 

Baby Showers

I have not really been blogging at all during this pregnancy. Sorry, but today you can see some sweet shots of my belly :)

I had 3 awesome baby showers. I am really lucky to have such great family and friend support.  I had one shower in Denver, one in DC, and one in Utah.

My shower in Denver was on Saturday, November 3 and was hosted by my dear friend Colleen.  She has become really special to me and we spend a lot of time together.  She has a baby about 7 months older than my future girl so it will be fun to hang out together.  I didn't remember to take photos from the shower, but here are a couple she sent me.  It was so nice to have some of my friends I have made here over the past year come and support me.  Even my mom made the trek out from Utah.

 My shower in DC was a surprise hosted by my dear friends I was lucky enough to spend 2 years with while living there.  I didn't take a single picture, dang it, so if any of you have pictures please send them my way.  It was lovely and perfect and we got some great gifts and ate some yummy food. Thank you Nora, Emily, Lauren, and Tiffany.

My mom and little sis Kim threw me a shower in Utah. It was so special and perfect and I loved seeing all my friends and family back home.  My mom ordered these great sugar cookies from Schmidt's Bakery in South Jordan, Utah decorated with my little girl's name, Violette (pronounced Vi-o-let).  They were even better tasting than they look, which I think is hard to imagine.  We had delicious taco soup and chicken noodle soup, a fabulous fresh fruit tray, yummy rolls from Great Harvest Bread Bakery, and Izze drinks.  Violette and I made out like bandits and received some great gifts. Thank you, thank you, thank you.  At this shower I am 33 weeks pregnant.

 Here I am with my sis-in-law Sarah who due about the same time as me (we are both having girls) and my little sis Kim who is about 9 weeks behind me in her pregnancy.  Lots of pregnancy hormones in the room :)

I am now a ripe 36 1/2 weeks pregnant.  Went to the Dr. yesterday and am starting to dilate, so we shall see when she makes her debut.