Friday, April 27, 2012

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 

Thursday, April 26, 2012

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.

Tuesday, April 24, 2012

The More Things Change...

In the last year our lives have been radically changed.  We’ve had to deal with the stress and fear that has come during a pregnancy with problems.  We’ve had to struggle with the loss of sleep and stress that occurs when your child must live in braces and casts after their first week of life.  And we’ve had to wrestle with what that means for a family and for a marriage.

Through it all, Heather and I have realized just how “easy” we have it compared to many people.  We see people suffering through terrible, and often unfixable, things.  We’ve seen the horrible things that can happen in this world to kids.  And our hearts break because of it.  However, it has also made us hesitant to talk about Eli’s clubfeet at times.  It sounds as if we’re complaining.  And we’re not really complainers.  As terrible as all of this has been, we know (better than most) just how much worse it could have been.)

It’s also easy to begin to believe that clubfoot isn’t “really that big of a deal.”

Sadly that illusion was shattered last week when we were told that Eli’s heel is not developing properly.

In many ways, this news was the hardest to take.  When we were told he had down syndrome, Eli was nothing more than an idea.  When we found out he had kidney problems, he was just a name.  (We wanted to give him a name early on, so that through all of the pregnancy problems he would have a name and therefore an identity.)  Even when he nearly died during delivery he still wasn’t there to know.  But now…now… Eli is part of our family.  Now he has a personality.  He laughs.  He cries.  He demands food.  He plays.  He sleeps.  And he drools.  A lot.

We love him tremendously.  And hearing more bad news is that much harder to take.

Each time you hear bad news from the doctor you go through a grieving process.  And that process is so much harder when you know the little guy.

We don’t know what all of this means for Eli.  We know surgery’s a possibility.  We know that it might work itself out.  We know that it could lead to a permanent disability or just a minor inconvenience.  We’re back to where we were 6+ months ago: not knowing.  And in some ways, that’s the worst part as a parent.

As we figure out what this means medically for Eli and our family, we just ask for prayers, because doctors are awesome, but God is better.

Friday, April 6, 2012

Guest Post: Reaching the milestones

Daddy catches Jamie in the act of standing in his crib for the first time!
Daddy catches Jamie standing for the first time
One of the biggest worries parents of children who have clubfoot face is, "Will my child reach the crucial developmental milestones the same as other children?"  That could be one of the strongest motivations behind choosing to pursue treatment in the first place, or being complaint with the bracing - the big "What if" factor.  What if my boy's foot reverts because I didn't give him the full 12 hours of bracing a day he was supposed to have?  What if she doesn't improve enough if we don't have the tenotomy?  These concerns are normal and show how much we care for our little ones.  The important thing is not to get bogged down in worry.

Trust your doctor to guide you along the right path to get your baby developing normally.  And if you don't trust your doctor, trust me, the biggest worrywart of them all!   My baby did well with holding his head up and rolling over pretty early, but I was really concerned about how he would do with standing.  Since Jamie has unilateral club foot, I wasn't convinced that his right leg would be as strong as the left leg.  When he came out of the casting process, I saw a visibly corrected foot as well as atrophied muscles.  And, how in the world would he be able to stand when wearing a brace 23/7?  But just a week before he crawled at 7 months he learned to stand in his crib.  And, praise the Lord, he was taking his first steps a few months later at 11 months.  I'm still wondering about how night time potty training is supposed to work with a brace, so I'll let you know how we deal with that.  :)

Your baby WILL be able to sit up, roll over, crawl, and walk in his or her own time.  So if nothing else, trust in the strength and resilience of your precious baby.

Oh, and get a Roomba.  Seriously.  They are the best inventions for busy parents ever.  You'll see what I mean when - and I mean when! - your baby starts to crawl.

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.

Tuesday, April 3, 2012

What to Buy for a Baby with Clubfoot?

When we found out that Eli was going to be born with clubfeet, it raised a bunch of questions.  But perhaps the biggest (non-medical) question we had was: what do we buy?  What do we buy when it comes to clothes?  What do we buy when it comes to high chairs, car seats, and beds.  We had no idea.  Would the bar interfere?  Would Eli need extra safety precautions?  And unfortunately the intenet didn’t provide a lot of specific advice (nor did our doctors.)

Eli, Deep in Thought
We spent a lot of time trying to figure out what the best thing to buy for clubfoot was going to be.  And while I’m sure we don’t have it all figured out quite yet, there are a few things we know for sure:

1.  DO buy extra socks.  You'll want them for the braces to help protect the feet.

2.  DON’T buy pants - pants just encourage you to take off the braces.  Which then encourages you to not keep the braces on.  Instead buy one-piece “snap-up” jumpers and long-sleeved onesies.  (And for the record, parents are encouraged to wear pants, you get funny looks otherwise.)

3.  DO buy strollers / high chairs that have a “swivel” arm.  Some strollers and high chairs require that you “slide” your baby under the bar.  This works well until they begin to grow.  In our case, Eli was in 12 month clothes by his 4 month birthday.  With his bar on, he was easily taller than some 2-year-olds.  He just became unwieldy.  Not to mention heavy.  Being able to open and close a stroller arm made it so much easier getting him in and out of the stroller.  This is the stroller / car seat we use.

4.  DO buy extra long changing tables.  The changing tables we bought for Eli were a bit on the short side.  We have an old house, so we have smaller rooms.  To accommodate this, we bought smaller furniture.  We never dreamed how quickly Eli would grow and how quickly he would start banging his braces on the ends of our furniture.  His changing table looks like a beaver gnaws on it at night.

5.  DO buy pipe insulating foam.  Buy a piece of foam (it comes in a variety of sizes from Home Depot or Lowes) and place it on your child’s brace.  This helps with saving the floor and your furniture.
6.  DON’T buy sleep sacks.  Maybe this one is a personal preference, but Eli hated the confinement of sleep sacks.  Some people say their kids like them, but Eli couldn’t stand them with his casts or braces.  He was already feeling confined by the leg brace (especially the Mitchell bar), the sleep sack just put him over the edge.

7.  DO buy nightgowns.  I’m sorry Eli.

8.  DO buy a thick bumper pad for the crib.  With all the kicking that will happen, the padding will help protect the crib and your baby.

9.  Do buy extra cotton to put into the tops of the casts.  Even when the casts are done correctly, as your baby moves and kicks the cotton slowly wears away.  This can lead to “sharp” edges around the tops that dig into the legs.  We also found that Eli grew so quickly that some weeks even the weekly casting probably wasn’t fast enough to prevent the tops from digging into his chubby little legs.

10.  DON’T buy pink shirts for Easter pictures.  Again, sorry Eli, I couldn't stop your Mom.

Why does all of this matter?  Because as a parent of a kid with a disability, you need all the help you can get.  This isn’t about consumerism, or buying things because you feel guilty.  It’s about setting yourself up, and therefore your kid, for success in dealing with clubfoot.

Going into this I thought I could toughen up.  That if I just manned up enough, I’d be able to force my way through all of this.  But what I’ve realized is that if I don’t do things to make compliance easier on my part, I’m going to take the path of least resistance (in this case, that’s called non-compliance.)  The fatigue, the stress, the frustration will get to you eventually.  So spend the extra money if you can afford it (it’s cheaper than getting more surgery).  And it’s also cheaper than going insane from stress.  Although possibly not as much fun.