Tuesday, February 28, 2012

How to Help a Baby after Clubfoot Casting

I’m not sure there are any tips to help when bringing a child home with clubbed feet after a visiting the doctor for a new set of casts. It’s rough on the kid. And it’s rough on the parents. (Truth be told, probably rougher on the parents!). But there are three tips that we all-too-slowly discovered.

1. Give a dose of Tylenol before the casting appointment. Obviously get your pediatrician’s approval first. You’ll need it for dosing requirements anyway. We found that once we could give Eli Tylenol, it made a huge difference in his behavior during the casting session. He was a lot less likely to scream in holy-terror. He was also a lot less likely to cry uncontrollably at the doctor’s office. This let us actually talk to the doctor and encouraged them to stick around the room longer to answer our questions. (Although they might not actually admit it, no one wants to be in a room with a screaming baby!) It also helped with the next tip we discovered…

 2. Casting gives your baby gas. I have no idea why. Maybe it’s all the gulping of air from crying. Maybe there’s special gas intake valves on infants feet that we don’t know about. But whatever the reason, Eli had terrible, terrible gas pains after the castings. It took us three weeks of trying to figure out what was wrong with his casts to discover it wasn’t his casts but his stomach! We gave Eli gas drops (which you can buy just about anywhere). However we’ve been told they are simply a placebo effect for parents. And while that may be so, it made us feel better and seemed to make Eli feel better. But that’s the irony of a placebo effect - maybe it was all in our heads!

3. Your baby will still cry because he’s hungry, tired, or needs changed. Your baby still has other needs. It’s easy to fall for the temptation to only think of the casts as the problem. But they aren’t. In fact, they likely aren’t the problem. Don’t forget to feed your baby, change her, or burp her. It sounds like this should be obvious, but as a parent you become so sensitized to the casts, that you assume they are the reason for everything. (This is when your brain is your enemy.)

There are probably other tips that can help within the first 24-hours of bringing a baby home from your casting appointments, but these three helped us maintain our sanity. Or at least pretend to maintain our sanity! How about you? What tips have you found useful?

Friday, February 24, 2012

Superhero

Today is a special day in our family. Today we are celebrating my husband’s 35th birthday. My husband often worries that he hasn’t “done enough” with his life. That he is wasting his potential. That he isn’t living up to the person God intended him to be.

On July 1st of last year we found out that Eli was going to be born with club foot, kidney issues, and potentially Downs Syndrome. I remember sitting in the doctor’s office sobbing uncontrollably. And there was my husband, the rock. Holding me, letting me know it was going to be ok. God would get us through.

Appointment after appointment, ultra sound after ultra sound, there Eric stood. Holding my hand. Protecting me. Assuring me that everything was going to be ok.

Fast forward 19 weeks. November 7, 2011. Delivery day. Our OBGYN chose to induce my labor. With the potential issues Eli was going to have, Dr. Riley wanted to be the one who delivered him. Just in case.

Thank God Dr. Riley was there. Our delivery was far from easy. There was a point we almost lost Eli. I will never forget the fear that shot through my body when the room suddenly filled with about 20 nurses and the delivery nurse threw an oxygen mask on my face. Something was clearly wrong with Eli. And there was my husband, remaining calm, holding my hand, drying the tears that were rolling down my face, and assuring me everything was going to be ok. God would take care of Eli.

Eric was right.

Everything is ok. Everything is ok because I have Eric. Through every appointment for Eli, my husband has been there. The rock of our family. The calm voice of reason. Our spiritual leader.

Our daughter Isabel asked my husband a really funny and telling question on Wednesday morning. She said, “When you go to work, are you really sneaking off to be a superhero?” It’s funny because what she doesn’t realize is, just because her Dad doesn’t wear a cape and fly through the air, it doesn’t mean he isn’t a real life superhero. Or maybe Isabel does realize her Dad is a superhero and that’s why she asked?

I get to wake up next to my superhero every morning. Our kids get tucked in every night by a superhero.

I can’t think of many things to say that you’ve done better with your life than to be a superhero to your wife and kids.

There is no doubt I am married to an amazing man. A superhero to be exact.


Thursday, February 23, 2012

What We Did For Valentine’s Day (Part 2)


While going out for the first time in months was a great experience.  What has been even better is getting Eli his new brace.  We started out with the Mitchell Bar (essentially one solid piece of metal that locks his legs together - it’s like a straight jacket for his feet.)   This bar seems seems to work well for a lot of kids.  But definitely not for Eli.  He went from being a happy baby, to crying non-stop. And worse - he actually stopped eating for a few days, and it was all we could do to get him to eat any food.
Unfortunately we had many problems with the brace shop (the company responsible for fitting and manufacturing Eli’s braces) and it took us about a month to get the new brace.  This meant that we had several weeks of no sleep, extreme fussiness, and exhaustion.   Both on the part of Eli and ourselves!
But all that changed on Valentine’s morning when Eli got his new braces.  In the past, doing anything to his feet, whether it was the Mitchell bar, or just getting new casts, meant that Eli would spend the next 24 hours screaming, with big alligator tears rolling down his cheeks.  Talk about heartbreaking! But with the new braces, he cried for about 5 minutes while he was fitted, and that was it. 


It was love (or at least tolerance) at first sight!
Of course that’s the genius of the new brace (called a Dobbs bar).  The Dobbs bar allows Eli to bend his knees and move his legs independently of each other.   In fact, he spends most of the day kicking his legs! Something that we never hoped would be possible.
After everything he’s been through, I don’t think I’ll ever get tired of seeing him kick his legs.
And frankly, this was the best part of our Valentine’s day.

Tuesday, February 21, 2012

What We Did For Valentine’s Day (Part 1)


One of the hardest parts of having a child with a disability (whether short-term or long-term) is the toll it takes on your marriage.  At first my wife and I didn’t really acknowledge this fact. We did what we usually do: buckle down and get things done. (I’d normally say we “maned up”, but for some reason my wife doesn’t like me describing her like that.)
But you can only push for so long before you simply run out of energy.
And that’s where we’ve found ourselves.  Exhausted.
That’s why we decided to make Valentine’s a special day.  But because Eli was getting a new brace (more on that later this week) we had to celebrate Valentine’s Day a day early.  Which of course, we wrote about last week.
It’s pretty amazing just how quickly you can lose a personal connection with your spouse. So as my wife and I went to J. Alexander’s (a very under-rated restaurant) we spend a few hours just talking and reconnecting.  It’s something that we haven’t done in far too many months.  And if we’re going to be honest, our relationship has really suffered because of it.  That was only part 1 of the Valentine’s event.
Since we don’t do anything half way in this family, we had a special valentine’s dinner with the kids on Valentine’s Day.
Let me just say that there’s something wonderful about coming home and seeing your wife home early and busy preparing homemade chocolate covered strawberries and steak for dinner.  (I get hungry just thinking about it now!) 

Yes, this is really what we had for dinner.
Of course, in our family, Valentine’s Day is about pictures (so is Christmas, Easter, Thanksgiving, Halloween, Arbor Day, 4th of July and Tuesdays.)  So we took a few of those as well. 

This is how we spend Valentine’s Day.  One part reconnecting with each other, and one part celebrating as a family.  How did you spend Valentine’s Day?

Thursday, February 16, 2012

Feelin’ the Love

With new babies come the unexpected. One of those “unexpected things” is just how little time you have to spend time with your spouse. Alone. Uninterrupted. Just the two of us. That happens with having any baby. But especially a baby born with health issues.

Eric and I have become so wrapped up in taking care of Eli, running him to the hospital, and trying to catch any sleep we can, that we haven’t had the time to spend just building into our marriage. That’s what made the Monday before Valentine’s Day so special.

It was such a wonderful surprise to come around the corner to find this:


What was written in that card is what made my heart skip a beat. “Tonight lets’ celebrate! I even got a babysitter!”

My super sneaky hubby arranged for a family friend to come over and watch the kiddos!! Be still my beating heart!

The entire night I walked around with a big knot in my throat, fighting back the happy tears.

We enjoyed dinner and drinks at J. Alexander’s. The food was delicious, the drinks were wonderful, but the best part was reconnecting with the man I love more than my words could ever define. It was then; I realized how much I have missed Eric. How much we have let our kids define our relationship. How important it is for parents to make time to work on their marriage, fight for their marriage, and invest in their marriage.

The hour and a half we spent at dinner was the best hour and a half I have had with my husband in months.

It is true what they say; having a child with medical problems does take its toll on a marriage. We are living it. But we also know what it takes to make it thrive. Surprise your spouse with a babysitter. Leave them a love note. Give them that extra kiss before they leave in the morning.

Break the monotony of ongoing stress, medical appointments, and taking care of the kids. Recharge your batteries by loving on each other. I guarantee you will be better parents because of it.

Friday, February 10, 2012

Some Things Can't Be Prepared For

There are some things that you just can’t be prepared for before you become a parent.  One of those is how much time you spend talking, analyzing, and thinking about poop.  That’s right.  You spend your entire life becoming a sophisticated traveler of the world.  You work your way up the career ladder.  You learn to (as the psychologists say) “self monitor” what comes out of your mouth.

Then you have a kid and spend most of the time talking about their bowel movements.
Ah progress!
Whether you’re prepared for this or not, one of the side effects we had with Eli was extreme constipation.  (He will love this blog post when he’s 16 and trying to get a date…)
We didn’t know how to deal with it other than, shall we say, let things work their course.  But towards the end of the casting phase (at about 8 weeks old) we discovered that he seemed unable to “work” out his uh…business, because he couldn’t bend his knees.
This led us to actually move his legs up and back as if he was doing little baby squats.
Now let me say this: I’m not a doctor. I don’t play one on TV.  I don’t even have a cool looking lab coat.  All I can say is that this helped Eli a lot.  Especially when he was extra gassy. Is this all a result of the casts?   Or is it simply part of who Eli was, and it would have happened regardless?  Frankly I have no idea.
But for us, this helped make him a happier little pooper.  And really, isn’t that what life is about?
Well that, and the fact that in 18 years, his girlfriend is going to LOVE this post!

Wednesday, February 8, 2012

Take Time to Enjoy Your Baby

One of the hardest parts of dealing with a baby with club feet is that you feel as if you’re on “emergency patrol” all the stinkin’ time.  Taking care of a baby is hard enough, but once you introduce a challenge (like club feet), it becomes so much more.  And while club feet isn’t as serious as cancer, down syndrome, or a thousand other things, don’t fool yourself into believing that it’s going to be “easy.”

It’s not.

Dealing with club feet is hard.  Whether it’s dealing with casts, clothing choices, lack of sleep, or sores from the braces, as a parent you feel as if you’re on the go all the time.  This is only increased by weekly (and sometimes bi-weekly) trips to the hospital or doctor’s office.  Just the logistical feat (ha!) of dealing with clubbed feet is enough to make you stress.

Somewhere, in the midst of this, you need to find a way to enjoy your baby.  For us, Eli wakes up two - three times a night.  Sometimes because he’s hungry.  Sometimes because he’s wet.  But usually because his feet are bothering him (whether it’s because he’s in pain or just in an “I-can’t-sleep” position, it can be hard to tell.)

I’ll be the first to admit I cringe when I hear him crying at night.  I hate getting up.  But what I’ve also learned is that those late night feedings / "comfortings" are my favorite times with him.  There’s nothing to distract me.  I can sit an listen to him breathe, or watch him eat.  And as a parent, there really is nothing better.
 
Trust me, I despise getting up every night - but I also love that time with him.  Yet, I don’t want to lose out on this time.  So I’ve decided to enjoy it the best I can, because in a few months it will be gone.  And I’ll never get the chance again.  And trust me, he’s already growing up too fast!

So take time to enjoy your kid.  Even if his (or her) health problems keep you up at night!

Friday, February 3, 2012

Having a Baby with Club Feet

There are few things worse in life than finding out there’s something wrong with your unborn child.  That’s where we found ourselves halfway through the pregnancy.  But the longer we were kept in the room after the first ultrasound, the more suspicious we became.  Eventually the doctor came in and said, “We believe your child has clubbed feet.”

In that moment time froze.  I still remember how silent everything felt. 

But that moment in time changed the course of our lives.  It made us struggle with what we believed.  How we would live.  And what mattered most to us. 

Out of that came the idea for this blog.  We wanted to create Faith, Feet, & Love as a way to help other parents cope with the same news we received.  (About 1/1000 babies is born with club foot.)  But we also found we needed a place to take action.  So much of caring for a baby with club feet is passive.  There’s not a whole lot to be done other than wait. 

So for our sanity, and hopefully yours, we present the lesson’s we’ve learned from a baby with club feet.  We invite you to join in the conversation, and share your stories too.