A Few of Our Favorite Things

When Eric and I found out that Eli definitely was going to be born with clubfoot one of our very next questions was, what are we going to need for him? After what seemed like endless searching on the internet, there weren't a lot of answers about what worked and what didn't work for a baby with club foot. It is through our own trial and error that we have come up with this "list" of our favorite things.

1. The Fisher Price Rock n' Play: This thing was amazing!  It didn't take Eric and I long to see that the weight of Eli's casts were making it nearly impossible to lay flat in his bassinet. The casts looked like they were pulling his sweet little legs out of the socket. So doing what Mom's do best, I started to brainstorm and came across this sweet little invention at Target. It may have been the best $50 we spent on anything for Eli to date. Once we put him in the rock and play, he was much happier, slept better, and the way it sinks down helped hold his casts up. Love this thing!

Snuggled comfortably in his Rock N' Play

before the Rock n' Play

2. The Fisher Price Jumperoo: Eli loves this thing as I suspect most kids do. Why we love this though, is because by jumping Eli is building his leg muscles that had gotten weak during all those weeks of casting. Eli will jump in his jumperoo for hours if we let him.

3. PBK Chamois Sheets: These are the softest sheets ever!  Eric and I are convinced our little man is a man of comfort and leisure because he just won't go to bed unless these are on his bed. With the discomfort of his braces and casts, why not indulge him with some luxury :o)?!

4. Baby Einstein Neptune Ocean Adventure Gym: Eli loves this gym. We love this gym because of the pillow that comes with it!  We can strategically place the whale pillow under Eli's braces, hook it to the mat, and wallah, our hardwood floors are saved!

5. Carters Snap Up Cotton Sleep and Play: This PJ's are great!  We recommend the snapping PJ's vs the footless zipper PJ's for one reason: they are easier. Zipper footed PJ's are attached at the ankles which make it really difficult to do a diaper change in the middle of the night with braces on. The snap up PJ's easily snap around casts or braces and make diaper changes in the middle of the night a breeze :o)!

Zipper PJ's

Snap PJ's

 6. Nightgowns: As much as we hated for Eli (as a boy) to have to wear nightgowns, this was by far the best thing for him to sleep in while he was in casts. Eli hated the sleep sacks. They were just too confining for him. Since our son grew at an exponential rate, it was really hard to find nightgowns for him once he got out of the 0-3 month size. My grandma was able to find a few nightgowns for Eli at garage sales. And we aren't proud. We took everything we could get and everything we could find!

7. Chicco Stroller and High Chair: We love these things mostly because they are so darn easy to use!  When you are juggling a baby with casts and braces, the last thing I want to be doing is messing with difficult to use equipment. It seems this company has thought of everything!  The ease of use makes the higher price tag worth it!

  So, that's our list. What are some of your favorite things for your baby?

Operation: Give Him the Boot!

Growing up, like all little boys, I had a fascination with magic.  I even taught myself a few card tricks.  Apparently, this is an interest that Eli and I share.  Because we’re convinced that Eli is well on his way to a career in magic.  We’ve never seen anyone get out of something as fast as he can.  In fact, he can pull off his Dobbs Brace within 15 seconds when he really wants to.  No pair of handcuffs would hold this kid.

Of course this makes bedtime a challenge.  We can’t simply let Eli fall asleep on his own or “cry it out” as some people suggest.  Because when he’s awake, he’s working on taking his Dobbs Brace off.  For the first 5 months of his life a well-timed bottle was all he needed to fall asleep.  Now that he’s hit his 6-month “birthday,” the bottle has lost it’s power.  It’s as if Superman suddenly wasn’t affected by kryptonite.

This makes for many long nights as we try to get him down.

Sometimes though, it looks like Eli’s gone to sleep when he’s really been playing possum.  (A favorite game of his.)  When we check back on him later, we see something like this (although at this point we had managed to get his right shoe back on, his right foot never moved):

Eli comfortably sleeping: Perhaps this is why he doesn't like to wear his brace

So last night we implemented Operation: Give Him the Boot!

It was a risky move.  But we decided that instead of spending the next 4 hours fighting with him to go back asleep we’d let him fall asleep and then put on both his sock and his brace.

I can’t stress enough how difficult it was.  Easily on par with landing a man on the moon.  He’s a light sleeper.  Who hates wearing his braces anyway.  After multiple attempts and about 20 minutes of effort, we managed to successfully put on his sock, un-velcro his shoes, and then get the shoes back on.

We plan to enter an international Jenga competition later this month.

Guest Post: Where Things Stand Now

My son Jamie has unilateral (right foot only) club foot.  You have read some of our struggles both recent and from months past through this journey of club foot treatments.  So where do things stand now?  I thought I would show with pictures how his foot is correcting after nearly 16 months of treatment.

You can see the extra skin on his right foot on the first picture, which my doctor assures me will go away as his foot continues to grow.  He is in size 6 wide shoes (he has big feet!) and our doctor believes he will remain flat footed like his father.

Thankfully, to this point Jamie's foot has corrected well and our doctor has been pleased with his progress.  He is wearing the brace 12 hours at night consistently, and we don't know for how much longer.  Our doctor seems to be very wary of giving false hope or promises and therefore is avoiding the question.  We have our next checkup at the end of this month since we go every 3 months, so I'll keep you posted.  You can see in the above picture the red marks that are always on the top of both of his feet from wearing the shoes.  These do not ever seem to bother him and have been there since almost the beginning of wearing the bar.

One of the worst parts of the treatment process was the tenotomy - such a simple procedure, but so hard for the parents to handle!  The picture above shows the scar on his right heel from the surgery, which has been about that lightly visible since he initially healed.

The best part of the treatment is the freedom that it has given Jamie - he is a happy, goofy, loving child during the day and not too unhappy at night either.  I actually always assumed that he couldn't really walk in his full get up and the only reason he was able to stand in his shoes and Dobbs bar was because he was standing on the soft surface of the crib.  To my surprise, it turns out he can walk on solid ground too!  Maybe as we start to look at potty training in the next year it won't be as hopeless as we thought! 

Speaking of hope, it is my hope that seeing these pictures will encourage any of you currently in this club foot journey with your child.  We  are maybe a year ahead of some of you - which in baby development terms is a drastic difference, but believe me, I remember in excruciating detail the beginning of this walk.  So see my baby's scar, red marks, extra skin, and big smile, and look forward to the day that is coming when you will be there too.

This is a guest post from Victoria, who has been a bloggin' machine for Faith Feet & Love.  She's previously written an Our Story feature as well as sharing some advice about the Importance of Humor when dealing with clubfoot.  We want to thank Victoria for writing such an awesome guest post!  If you'd like to write a guest post, please contact us for more details

A Mothers Guilt

There aren't many things that make a mother feel more guilty than when you are told your child is going to be born with a birth defect or some other medical issue. What is even harder is admitting to family and friends that your unborn baby has issues.

For me, there was an incredible amount of shame that came with Eli's diagnosis. I wanted to cry (and often times did) after I was finally able to tell people about Eli's health issues because that person would follow up with the dreaded question, "What causes that to happen?" Their questions somehow implied it was something I did in my pregnancy to make this happen to my child. That I didn't do what I was supposed to prenatally to give my child the best shot at a healthy life.

I thought I did everything possible to insure I had the perfect pregnancy. I stopped taking the medication I was prescribed for my epilepsy because of the risk of birth defects that are associated with it. I went to my first prenatal appointment 2 days after I found out I was pregnant (I was THAT excited!) and just 5 weeks along. I took my prenatal vitamins, I followed a very strict pregnancy diet, and gave up my Starbucks habit.

Spiritually, I thought I had crossed every T and dotted every I. Just one year earlier, I went on a 10 day mission trip to Mamelodi, South Africa. An experience that dramatically changed the course of our families spending, the way we lived out our families legacy, and my life forever.

I was part of not one but two small groups. My husband and I committed a substantial amount of money to our church's campaign to help fund rescuing girls from sex slavery, helping our friends in South Africa get the healthcare they need, and help our neighbors in Cincinnati get out of poverty. Both my husband and I spend time volunteering and pouring into others.

Surely after all of this God owed us a perfect baby and a perfect pregnancy right?

Truth is, God doesn't work on a barter system. If we do X God doesn't guarantee Y. We live in a messed up broken world.

I have had to learn and accept that God's grace is enough.

It's by His grace that Eli "only" has clubfoot. It's by His grace that Eli was healed from the potentially life threatening kidney problems he was diagnosed with. It's by His grace that we were able to have the best doctor in the delivery room, at the perfect time, to save Eli from dying during delivery.

We were given the perfect baby. He was just wrapped in a different package.

It wasn't until recently that I was able to admit to my husband the guilt I carried throughout our pregnancy and the embarrassment I felt for having a baby with a birth defect.

I was even reluctant to post pictures of Eli on facebook that showed his feet for fear of judgement from others.

I had some deep rooted guilt/shame/fear going on.

Once I accepted that we live in a broken and fallen world and that God really does love Eli more than I could possibly ever imagine, I was able to let go of some of that guilt.

I'd be lying if I said that I still don't feel those twinges of guilt each time we have to put Eli's braces on and he cries. When those moments arise I have to remind myself, as hard as it is for me to imagine, that God loves me and Eli far more than I ever could and that He is using this for something amazing.

And for our family, that is enough.

Bracing for Clubfeet

Nothing so far prepares you for The Bar.  And sadly we’re not talking about the one that serves alcohol.

At some point your child will be given shoes and a leg bar.  The most common type of bar is called the Mitchell bar.  It’s essentially one metal rod that connects the two feet together.  It’s important because it keeps the feet situated and secure. 

Yet at the same time, it’s the most terrible thing you will experience.  Why?  Because your baby, even with the weight of the casts, likes to kick his legs independently of one another.  Our son calms himself by kicking his legs.  When we attached a heavy bar between them, he was not only unable to move his feet independently, he was unable to move them at all.

Now some babies respond well to this.  We’ve been told that some kids even like wearing their shoes.  For Eli, he despised every minute of it.  In fact, he actually stopped eating for the first 2 days we had his brace on.  He lost about a pound of body weight. 

What I wished we had been told is just how hard it is as a parent to adjust to the bar.  Especially when your kid is nearly inconsolable.

So here’s some tips to get you through this if you’re experience is like ours:

1.  Stay Calm.  Trust me, I know how hard this is.  I’m telling you this with only sleeping 20 hours in 5 days.  But your baby knows when you’re upset, and it doesn’t help him any to get worked up.

2.  Check his feet.  We found that our shoes weren’t sitting right on his feet.  And while the brace shop didn’t want to hear our complaints, we forced them to listen, and got it resolved.  Hopefully you’ll work with a more cooperative / understanding brace shop, but make sure his feet are fitting properly in his shoes.  (Sadly you really won’t know what “properly” is until you’ve tried to put his shoes on a few times at home.)

3.  Be an Advocate.  We may have over-reacted at times to Eli’s response to his shoes.  But you know what?  It’s better to over-react than not react.  We’ll gladly look like fools if it means Eli’s being protected! 

4.  It does get better.  I hate it when people tell me this, because it’s not what you want to hear.  But it does get better. 

5.  Trust your instincts.  If everything seems wrong, maybe it is.  Go be an advocate and call the doctor.  Force them to see your baby.  No one can diagnose over a phone, so trust your instincts.

The good news (for us) is that we switched out of the Mitchell Bar into the Dobbs brace, and that made a world of difference.  But all of these things were still important for Eli as we've still had complications with his braces.  

We Made It!

Today is the day I never thought would come. It’s been highlighted on every calendar I have for months now. Eli is going from 23 hours a day to 12 hours a day! 

When Eric and I got the first call from our OBGYN 10 months ago about potential problems with our unborn son my heart broke. After our level two ultra sound confirmed Eli’s bilateral clubfoot I sobbed. I would wake up in the middle of the night in tears. I was a complete and utter hot mess! All I could think was, “What did I do wrong with this pregnancy? How could this happen? How are we going to do this?” 

The first thing I noticed when Eli was born was how crooked his sweet little feet were.  I couldn’t believe how completely adorable they were. I was almost able to convince myself in my postpartum insanity that somehow we wouldn’t have to get them fixed because they were just too adorable to mess with. It’s amazing the crazy thoughts that pop into a mother’s head when she is trying to avoid her child going through such a long, grueling, seemingly barbaric treatment. 

A week after Eli was born; we took him for his first casting. Eli cried. Mommy cried. Daddy had allergies. It was horrible.

 

On our way out, they handed us a list of our upcoming appointments. My heart sank.  Even though we were told ahead of time about the weekly castings, there is something about seeing a long list of upcoming appointments that causes a Mom to get a little choked up.

It wasn’t until we removed his first set of casts that I was starting to think, “This might be worth it. I might be able to do this.” 

I mean look at that progress!  In just one week! 

 

But after just one night without the casts his feet had already turned back in. 

As the weeks drug on, appointment after appointment, there were still those times that felt we were never going to get through this season in our life. 

Even our 7 year daughter recognized how difficult this journey has been.

24 weeks later, here we are. We made it! Even though Eli still has a long road ahead of him as we work through the issues with his right heel and some of his other strength issues, God has pulled us through another hurdle we never thought we could make. 

Throughout this journey, from the moment we first sat down in the car after getting Eli's diagnosis, this has been the song that has gotten me through. Strong Enough 

Our Story: Blake Emily's Clubfoot Story

My husband and i had been trying to get pregnant for over a year with no luck at all. i would constantly think i was pregnant but test after test proved me otherwise. after a year went by i stopped stressing about it and just decided to go with flow. a couple months went by and the way i found out i was pregnant was totally at random. we found an unused pregnancy test left over from when i thought i was pregnant previously. i took it just to throw it away and get rid of it but it came back positive. i was in complete shock. i bought 3 more - they were all positive. i was so in shock that i took a blood test to REALLY make sure i was. and i was, 100% positive. i cannot tell you how happy we were. negative test after negative test really starts to take a toll on you as a woman. you feel like you're not doing something right or maybe you'll never be able to have a baby. i'll never forget that moment when it came back positive.

All of our check ups had been great so far. everything was right on track, our baby was developing beautifully. at our 20 week ultrasound appt we found out we were having a girl! we were so excited! dresses, headbands, tons of pink coming our way! :) ultimately we didn't have a preference on a gender, as long as the baby was healthy - that's all we cared about.

At our next OB appt everything looked great again, heartbeat was strong, blood pressure good, everything was golden. towards the end of the appt our doctor said the ultrasound tech noticed something in the 20 week ultrasound that we need to follow up with. that's when she said club foot. i had never really heard of it before, i thought it might have been like duck feet, something mild no big deal. the doctor said following up is just protocol and 9 times out of 10 "it's nothing." sometimes the baby's feet will be pressed up against the uterine wall so it makes the feet look a little squished and that was most likely the case. so, we made an appt for a follow up at a doctor's office that specialized in ultrasounds. we didn't think much of it because the OB was so confident that it was nothing, and we had nothing to worry about - AND if it was club foot, it's totally treatable no big deal.

We went about our week and went to the scheduled ultrasound appt. walking up to the door i don't remember exactly what it said but all i remember seeing was "high-risk pregnancies." okay, now i'm starting to get a little panicked. i'm not feeling at ease. i just want this to be over, for the ultrasound tech to tell us, your OB was right, everything is perfect and be on our way.

That was not the case.

A nurse came in a did the 1st ultrasound, then the doctor came in and did it again (just to be certain she didn't miss anything - part of their protocol.) He finished the ultrasound and we were just waiting for him to say, she's fine, you can go. instead he confirmed she did have clubfoot. he said it's actually bilateral club foot. my head was spinning at this point - i was asking myself a million questions at that moment. how did this happen? did i do something? is she okay? what do we do now? what is club foot actually?? i was thinking a million things all while trying to hold back tears. i was terrified for my baby. what was going to happen now?

He said with bilateral club foot it could also mean she would have other genetic issues as well. down syndrome, spina bifida, and a bunch of other stuff that was swirling around our heads. he started talking about heart issues, brain issues, the works. he suggested getting an amniocentesis asap since i was over the suggested date at getting one. and gave us business card to talk with their genetic counselor about the amniocentesis. let me just say overwhelmed does not even begin to describe the feeling we had. we went in thinking it was nothing, the 20 week ultrasound was just misread and it's fine...we ultimately decided right then that i wouldn't get an amnio. in my opinion they are WAY too risky and whatever test came back wouldn't change the way we felt about our baby so there was no point for the test. the doctor said we would have to come every 1-2 weeks to make sure the baby stays on track with her growth. not what we wanted to hear. we left that office feeling so defeated. it really felt like a blur to me, leaving the office..walking through the parking lot..then i just broke down. i didn't even make it to the car. i sobbed. i sobbed my eyes out. my husband held me and told me everything was going to be okay. stupidly, i went home and googled bilateral club foot. let me tell you right now, DON'T DO THAT! stupid idea. it showed every extreme, every horror story imaginable and it just made me freak out even more. my husband banned me from googling it and eventually i stopped stressing out about it. google can sometimes be an evil thing.

We went to the weekly appointments at the "high-risk pregnancy" facility and each time she was progressing right on schedule and her heart looked "beautiful" as the doctor put it :) they always did an in-depth look at her heart when we had these appts - because we were told with bilateral club foot the heart could have a lot of issues linked with that. but thankfully, each time she was looking wonderful. at about 30 weeks or so we decided not to go to the appts anymore, she was looking great each time - we felt everything was going to be okay. and honestly, the ultrasounds were insanely expensive and we just couldn't afford those in-depth looks anymore.

Throughout the pregnancy we found out what bilateral club foot was and what we would have to do to correct her feet. we met with her future orthopedic doctor while i was still pregnant to go over what needed to happen when she was born. Which included casts for 6-8 weeks (each week she would get new casts) then possibly surgery depending on how her feet were progressing, then braces.

Her due date was approaching fast and it came and went. with a little help from pitocin (and an epidural of course) our perfect baby girl, blake emily, was born at 6:24am feb 8th, 2012. 8lbs 3oz and 20in long of amazing-ness :) i remember looking at her little feet and thinking they were so cute. so curled inward. so perfect to us.

Her orthopedic doctor said within the first 10 days is the best time to start the casts so we went in when she was 9 days old. my husband had to hold her down while the nurse helped the doctor applied the first casts. they kept saying how strong she was throughout the process. she was kicking her legs as hard as she could to fight those casts and my heart just broke for her. she screamed like you would not believe. after he was finished they left the room and my husband and i just cried...cried at what our baby has to go through. and for the next 3 days she cried non-stop. i mean non-stop. it was insane. NOTHING would sooth her. she would cry during feedings, when we held her, in her sleep. just constant. we ended up going to the ER to have her casts removed because we were convinced they weren't on "right." after they were off she was a different baby - content. we waited another week before going back to have them put on again. when talking about it now with my husband i think WE were the ones not ready for the casts. we didn't know how it would be with a newborn baby in general, let alone a baby with casts. it was just too much too fast, for all of us.

So, we went back to have the 1st set re-done and i don't know what happened in that week but she was A LOT better. i'm talking night and day difference. we had to give her tylenol that night but she was nothing like she was the very first time. and each week just got better and better. don't get me wrong - the process was still horrible. she still screams bloody murder when they're putting on the casts. but when we get home she's totally fine. she has her moments where you can see that she just can't get comfortable and it frustrates her but it's not insane crazy. and she still moves her legs like it's no one's business. she's going to have some muscles on her :)

 

We're on her last set of casts (thank god). she had to have a tentomy which went wonderful and she is doing amazing. her feet look great and we can't wait for the casts to come off and actually clean her cheesy toes haha. after these casts she'll wear braces for 3 months 23 hours a day then just at night for a few years. it's a long process definitely. and has been challenging for us all. for the regular joe hearing us describe the corrective process, it sounds like a breeze - no big deal totally simple. but, if you're not experiencing it first hand - taking her to the appointments, dealing with the fussiness from the casts, bathing challenges, clothing challenges (goodbye cute newborn pants/shoes), constant questions from people about it, their poop sometimes getting on their casts!, the financial anxiety, the strain it can put on your marriage and everything else that comes with it, i'm sure it does seem like a breeze to you. it's not. sure we've gotten used to it. we deal with it. but it's still hard. we take it day by day.

But i will say, even though it's hard, i would not change her for the world - even with her "deformity." i would go through it all again 1,000 times to get my perfect baby girl. all of the pregnancy emotions, the ups and downs, the anxiety and fear, all of it. i would do it all again in a heartbeat because she is perfect to us.

Thanks to Amanda for contributing to the Our Story feature for Faith Feet & Love. If you've got a story about dealing with clubfeet, or just want to share success stories, tips, or pictures, please contact us for more details.