3-Month Recap

I can hardly believe that it's been three months since Charlotte first transitioned to her boots and bar! It has been an exhausting three months, and I won't lie, it has NOT been easy.  However, Charlotte is doing well and I'm pleased with how well she's developing.

At just over four months, on October 17th, Charlotte rolled over from her back to her belly with her brace on! She had been getting so close and trying very hard in the weeks leading up to it, and she finally got it that night! Before long, she was rolling in both directions all over our living room floor. At five months old, she started pushing herself up onto her hands and knees and rocking back and forth.  She hasn't quite figured out crawling yet, but I know it's just a matter of time.  I'm okay with her limited mobility right now, and honestly, am in no rush for her to be ALL over the house.  She's now 6 months old (as of yesterday!) and she's sitting up on her own for the most part. She topples occasionally, but she can sit unassisted for several seconds at a time.

Charlotte practicing rolling over at just over 4 months old.

Charlotte getting on hands and knees preparing to crawl.

Our sweet, happy girl in her shoes.

Our journey has not been all smooth sailing over the past three months.  Charlotte has not slept well ever since being placed in her boots and bar, and regularly wakes four or more times every night.  It's more frustrating because of the fact that toward the end of her castings, she was sleeping through the night and now she hasn't done that in 3 months.  It's exhausting, to say the least.  I can't figure out if it's her shoes, her gassiness, or her just being a poor sleeper.  In reference to the gas, I've noticed that Charlotte gets really uncomfortable, especially at night, because she has trouble passing gas through the day.  I'm assuming this is because her brace does not allow her feet/legs to move separately, hindering her ability to move gas bubbles through her digestive tract.  After adjusting my own diet (since I'm still nursing her) and talking to her pediatrician, we decided that she's just a naturally gassy baby and are hoping that going to part-time wear will help her be more comfortable.

Charlotte has a follow-up appointment next Tuesday with Dr. Jex at Walter Reed National Military Medical Center to check out her progress.  We are hopeful that he will "clear" her to go to part-time wear at this appointment so that she can get more free time from her shoes.  I'll be sure to post an update after that appointment. Until then, prayers are always appreciated!

Charlotte Jane, 6 months old.

Update: 2 weeks

Charlotte has been in her boots and bar for two weeks now, so I thought I'd update everyone on how she's doing. The first several days (and nights!) were dreadful. She was so upset and uncomfortable and her right heel kept slipping out of the shoe. I was having to re-thread her straps a few times a day, and I was worried about the "extra" time she was spending out of them when I had to do that. I called Dr. Jex's nurse and, after talking with him, she scheduled us to come in for another appointment that Thursday (one week after the initial placement in the brace).

Dr. Jex recommended leaving her sock(s) off in order to get the shoes put on tighter. I didn't like this idea because after just the first day in the brace (with no socks) Charlotte developed a small blister on her toe. I was worried that she would get many blisters and be even more uncomfortable. We went downstairs to the orthotic & prosthetics clinic and the orthotist was great! He gave us a size smaller shoe (000) and said to put her sock back on. He also narrowed the length of the bar which helped it fit in her car seat better. It still took a few days after getting the new shoes for her to fully adjust to the brace, but she was no longer slipping out of the shoes which made me happy!

Disclaimer: I'm not advising anyone to go against the instructions of their doctor. I am not a medical professional and cannot give medical advice. 

We got into a routine of allowing free time just before bed, with a bath every other night. We've been keeping her out for about 30 minutes each day, and she absolutely loves it! She is always so happy during free time and even happier in the bathtub! She even rolled from her belly to her back for the first time during her time out of the shoes earlier this week. 

Charlotte enjoying her brace-free time!

While I never expected this transition to take nearly two weeks, I'm so proud of how well she's doing. I won't lie and say it was easy. It was far from easy. Many times, I felt like such a bad person forcing my crying child into the "contraption" that is the brace. Many times, I cried right along with her. I lost a lot of sleep and probably wasn't the nicest person to be around. However, I know it's in Charlotte's best interest and she'll thank me someday when she's older. I'm looking forward (but NOT rushing) to seeing her walk, run, play sports. Watching her run around with her brother or her friends, teaching her how to ride a bike, and seeing her just be a normal kid!

I don't think I'll ever be able to fully express my gratitude for the treatment she has received. I'm thankful for the loving God that I serve who is answering our prayers through the hands of doctors. I'm thankful for the MANY people who have prayed for and encouraged us thus far. We couldn't do this without all of you! We love you all!

Graduating to the Boots & Bar

Charlotte had her last cast removed this morning at her post-op appointment with Dr. Jex.  The doctor sent us downstairs to the orthotics & prosthetics clinic to pick up the brace and then we went back up to his clinic so he could show us how to put it on.

It was so nice to see both of Charlotte's feet/legs for a little while, and I could tell that she enjoyed being out of the cast.  Unfortunately, her right leg is very sensitive to the touch, having not been exposed to any sort of feeling for so many weeks.  She cried at even the slightest touch and I felt like she was a fragile newborn all over again.

Charlotte after her last cast was removed before being placed in the Mitchell shoes & Ponseti bar. 

Before we left, Dr. Jex showed me how to put her shoes on.  Her heel has to be completely down and back in the shoe in order for it to fit properly.  The shoe has three leather straps and Dr. Jex explained that the middle strap is the most significant one for keeping her foot in the "down and back" position.  He called it the workhorse strap and stressed the importance of getting it nice and tight.  He doesn't want her to wear socks for the first few days until we can get the hang of getting the shoes on correctly; he wants us to be able to check her toes for circulation. Charlotte was over tired and not a happy camper.  I felt so bad for her.  She cried and screamed the whole time with big crocodile tears rolling down her cheeks.  Then, Dr. Jex wanted me to put the shoes on while he observed to make sure I was doing it correctly.  I felt like even more of a monster, trying to hold her foot still while tightening the straps, and she continued to cry the most heartwrenching cry I've ever heard.

I know that this treatment is for the best and that it's necessary for her to live an active and healthy lifestyle.  I also know that she will only have to wear this brace for a very short period of time, relatively.  All that said, it doesn't make hearing your baby cry any easier.  I felt like crying with her.  Fortunately, I know she is strong and she will adapt to this new phase just as she has before.  She's an incredibly brave little girl and I'm so proud of how well she has done thus far.  I can't wait to share this blog with her someday when she's older so she can see just how far she's come.

Relaxing at home in her boots and bar. 

Bathing Beauty

Pretty girl getting ready for her bath. 

Before having a baby with club foot, I never could have imagined all the things that parents of "normal" babies take for granted. One of those things is giving your baby a bath. When my first born (Rowen, now almost 3 years old) was fussy as a baby and all his needs were met, sometimes I'd give him a warm bath to help soothe him. The lavender scented baby wash and warm water had a calming effect that would usually settle him down. 

With Charlotte, it's not quite so easy. I can't just let her soak in the bath because her cast can't get wet. Fortunately, she's been a fairly content baby and I have only desired to be able to give her a soothing bath a couple of times. Still, she gets sweaty and spits up sometimes so occasional baths are necessary. I wanted to write this post to explain briefly how I go about bathing her and keeping her cast dry. 

My infant bath tub has a mesh hammock-like insert that's used for newborn babies. This little device has been a lifesaver when it comes to giving Charlotte a bath. I usually just fill a small bowl with warm water and sponge it over her body while she lays (fully supported) in the hammock. Her cast sometimes dangles over the side of the hammock and other times he holds it up. Either way, the water washes off of her and into the bottom of the tub, but her cast is elevated enough that it doesn't get wet. She actually loves bath time and it's a great way to help her relax before bed. And who doesn't love the smell of a clean baby?!

The hammock helps support her body while still keeping her cast away from the water. 

If you're the parent of a child with club foot and have other tips and tricks for making everyday tasks easier please comment below or email me at ydid4.7@gmail.com. Or if you have questions about certain tasks, ask away! Charlotte and I are still pretty new to this journey, but I'm happy to share the things I'm learning along the way. I hope this blog is helpful and informative to my readers. 

Surgery!

Charlotte underwent surgery for her club foot this morning. The procedure, known as an Achilles tenotomy, was very quick and everything went well. We arrived at the hospital just past 5:00 this morning and she was scheduled for the first surgery of the day at 7:30am! We spoke to several people in the holding area regarding the procedure itself as well as anesthesia. The doctors and nurses we talked to had to discuss all the risks associated with this type of surgery. 

Mommy & Charlotte before surgery.

Had to wrap Little Miss to keep her calm. She was definitely getting hungry by this point since she hadn't nursed for over 4 hours. 

I walked Charlotte back to the operating room and laid her on the table. They put a gas mask on her and she was asleep within just a minute or two. I gave her a kiss and was escorted out to the waiting room. It was such a surreal feeling leaving my tiny baby behind in the (very capable) hands of complete strangers. Thankfully, the surgery was very quick and we were back together within an hour. 

Finally resting. 

Charlotte was NOT a happy camper upon waking from the anesthesia. She wouldn't even calm down enough to nurse and I felt so helpless! I think she wore herself out because she eventually dozed off for a little bit. They monitored her oxygen level for about 30 minutes and then moved us to another area to wait for discharge papers. In the second area, they removed the IV from her hand and she was much more comfortable after that. 

The IV is out and she is much more comfortable!

We were discharged around 9:30 and headed home. She is now resting peacefully and I hope we can all get some rest this afternoon (it was an early day for Mom and Dad, too). 

Resting at home. 

I am thankful to have this over with, and I pray that Charlotte isn't too uncomfortable over the next few days. She will be in this last cast for 3 weeks to allow her tendon to heal and complete the correction of her club foot. Thanks to everyone for thinking of us and praying for Charlotte! We appreciate and love you all!

Her 6th and final cast!

P.S. Happy birthday, Daddy! Love, Charlotte

A Letter to my Baby Girl

My precious Charlotte,

I love you. I tell you that hundreds of times a day, but I want you to know that I mean it with every cell in my body. You are a perfect gift from Heaven for whom God trusted me and your Daddy to care. We are so thankful He chose us to be your parents. 

This journey with your feet is going by so quickly. I'm so grateful for all that God is doing through the doctors and I know that He will continue to see us through this process. I'm praying, especially, for Him to be with us in the morning as you go in for surgery. I'll admit, I'm nervous. You're so little at just over 10 pounds. You're so fragile, so innocent, so perfect. It's hard for me to think about placing your life into the hands of strangers and just "hoping for the best". If God is teaching me anything through this it's that I must trust Him with things that I cannot control. Someday you'll understand just how hard it is for a woman to give up control. 

My sweet girl, we're nearing the end of the first leg of this journey. You've been so amazingly strong and brave. I can't tell you enough just how proud I am of you! You have made this process easier than I ever dreamed it would be with your strength. I know we still have a long road ahead, but I trust that God is with us and I know that He has given you the power to overcome this. I love you, sweetheart. 

Love,

Mommy

Last Serial Cast

Charlotte and I returned to Walter Reed this morning for what we hoped would be her last cast before surgery! We removed her current cast and I nursed her in order to, as Dr. Jex puts it, fill the tank. I had also pumped some milk again and brought a bottle along to give her should she get fussy during the casting. Dr. Jex came in to evaluate and stretch her feet and our hopes were realized when he decided to schedule her for surgery next Wednesday! 

Charlotte's feet after the removal of her fourth cast. 

Her foot is looking great!

Dr. Jex placed her new cast and talked to me about her procedure next week. He explained that they will use a needle to cut the Achilles' tendon in her right foot and place her final Ponseti cast. She will wear that cast for about three weeks to allow the tendon to heal from the surgery. He also discussed with me the risks associated with this type of procedure and the possibility of relapse. While he said it's unlikely, if we slack on brace-wear, relapse is a possibility that I should be aware of. 

Charlotte's last serial cast!

After talking to Dr. Jex and filling out some paperwork, Charlotte and I headed upstairs for a pre-op appointment. It was pretty simple and consisted of meeting with an anesthesiologist and a pediatric nurse to discuss some little details of the procedure. 

I'm excited that she is "ready" to move forward in this journey (progress is always a good thing), but I'm also nervous about the surgery itself. My baby has to be under anesthesia and she can't nurse for 4 hours before the procedure. I'm worried about how she'll handle the "sleepy gas" and also how she'll feel afterward. I know I need to give these fears over to God and He will protect her. She is, after all, His child and He wants nothing but good things for her life. Knowing these things gives me peace in this situation and there really is nothing better than feeling God's peace. 

Just because I can, here is Charlotte's 2-month picture complete with stats!

As always, your prayers are appreciated so much! I'm so blessed to be surrounded (both physically and via the Internet) by such supportive and loving people! God bless you all!

Moving On Up!

Charlotte's treatment is going so well! Praise God for His faithfulness in this process! She had her third cast removed this morning, and aside from some minor skin irritation, her foot is looking great! Dr. Jex even mentioned the likelihood of moving up her surgery! He thinks she will only need one more cast (after the one she had put on today) until her tenotomy. I'm so excited!

Charlotte's foot after the removal of the third cast. 

Her fourth cast: 8/6/13

Right now, the timeline looks as follows: next cast on August 13th, removal of cast and tenotomy surgery on August 21st at which point she'll be placed in her final cast for 3 weeks. Then she'll go into her Mitchell boots & bar for 3 months of 23/7 wear. All of this is still tentative and may be pushed back slightly depending on how the next couple of casts go. 

Thanks, as always, for your continued prayers! 

Third Time's the Charm

Or not. Charlotte cried again today while getting her third cast put on. Fortunately, she did great (again!) for the removal portion of the appointment, but as soon as Dr. Jex started stretching her foot for the new placement, she got upset. She wasn't as upset this week as last, and we didn't have to stop halfway through to nurse. 

This is her foot after the second cast. 

This picture shows how her foot is starting to point more towards the outside of her leg. 

The correction process is going really well as far as I can tell. I can see that her foot is starting to rotate toward the outside and pointing down and out more than up and in. This is very encouraging and Dr. Jex said she may only need 2 or 3 more casts before her tenotomy. I'm so relieved to know that her foot is responding well to the treatments.

Charlotte in her third cast. Her feet are starting to look more alike!

Contrary to the first two weeks, Charlotte has been feeling pretty well today. She had periods of crankiness, and I could tell she was a bit uncomfortable at times, but overall she was fairly pleasant all afternoon/evening. I just kept her close to me (an excuse to use my new homemade woven wrap) and enjoyed her sweet little cuddles!

Using our homemade woven wrap for the first time!

As always, thanks to everyone who has been praying for her and for us through this journey. Your support and love are helping us stay strong and have a positive outlook on the situation that God has put us in. We are truly blessed!

Strangers

It was bound to happen sometime. Actually, it's happened several times since Charlotte got her first cast almost 2 weeks ago: a stranger asking "what happened".  I know they mean well and that they're just curious, but there's always a part of me that gets defensive thinking that they are insinuating that somehow my newborn got hurt.

Sometimes, when I'm feeling particularly witty, I feel like saying, "Oh, she was just playing too hard at the playground" or "She forgot to wear her non-slip shoes at work". But I don't. Instead, I try to inform them about what clubfoot is and explain how treatable it is. I often feel like a broken record, repeating myself to new people all the time. Maybe I should carry a business card full of information about clubfoot...

The truth is, I like it when people ask about her cast. It gives me the opportunity to talk to them about her and about clubfoot. Often times, people have heard of it before but don't really understand what it is. I enjoy explaining it to them and teaching them something new. I hope to help raise awareness of it, not just here in the U.S., but also around the world. It breaks my heart knowing that there are children in other countries who are left immobile because treatment for clubfoot doesn't exist where they live. So, until children everywhere can receive proper (and fairly inexpensive) treatment for this defect, I welcome any and all questions from curious strangers. 

P.S. Check out this website if you're interested in helping fund a project that will focus on clubfoot treatment in other countries. 

Round Two

I took Charlotte back to Bethesda today for her second cast. First, they had to cut off the old one. I was nervous at first, but then the technician explained that (somehow) the blade only cuts when it comes in contact with hard surfaces, so it wouldn't cut her skin. She was such a trooper and didn't cry one bit while the technician was cutting it off. 

Unfortunately, I can't say the same for the rest of the appointment. Charlotte was quite upset the whole time Dr. Jex was stretching her foot and placing her second cast. We even had to stop halfway through so I could nurse her, but that only calmed her down briefly. I felt so bad for her and for the doctor, because I'm sure it was difficult to properly place a cast on a squirmy, crying baby. 

She was even more uncomfortable today than after her first cast. A dose of Tylenol and several nursing sessions later, she's finally down for the night. Hopefully, we can both get some sleep. 

Leg Warmers on a Budget

Leg warmers are such a great accessory for babies with casts! They keep the casts clean and, more importantly, make them look A-dorable!! But those simple little things will run parents anywhere from $10-20 (or more) per pair! I want my princess to look cute rockin' her casts, but I can't afford that! Thankfully, I have a sewing machine and the internet!

I found a great tutorial online that showed how to make leg warmers out of crew cut socks (or knee-length socks for a larger size warmer). Charlotte and I headed out to Target to pick up some socks! We found some great patterns at just $3 a pair!

I made 4 pairs total in about 2 hours time! That's 8 individual warmers and since Charlotte only has one cast, that's enough for 8 days of wear (or less if they get dirty, and let's be honest, she's a baby so they probably will)! And I still have 4 more pairs of socks yet to convert! That means she'll have 16 leg warmers for less than $25! Frugal Momma win!

Easing Her Discomfort

Charlotte was really having a hard time getting comfortable yesterday afternoon. She would rest briefly and then wake up crying in what seemed like pain. We knew she would need some time to adjust to the cast, but it really stinks when your baby is in pain and you feel helpless. 

After dinner, Zach figured out the problem. Her little left foot was rubbing up against the rough, plaster of her cast and it was scraping her. We put a sock on her left foot and a leg warmer over her cast and she fell right to sleep and slept the rest of the evening. She even went to bed without much trouble and slept all night, waking only to nurse a couple of times. 

I'm so grateful that we (might) have figured out what was causing her so much discomfort. Hopefully, we can keep her happy and comfortable while she continues to adjust to this new phase. As always, thanks for your prayers for our precious princess!

The Adventure Begins

Charlotte Jane Lotz was born on June 11, 2013, at 3:08 PM. She weighed 6 pounds 9 ounces and was 19 inches long.  She was perfect in every way, including her right clubfoot.  

On Friday, July 19, 2013, Charlotte received her first cast at Walter Reed National Military Medical Center by Dr. Jefferson Jex.  Dr. Jex began the appointment by explaining how her treatment would be completed, which matched up with the Ponseti Method.  He guessed that she would need 5 or 6 casts before the surgery to clip her Achilles tendon.  She would then be in a cast for 3 weeks and, finally, be put in a brace for 3 months of all-day wear and nighttime wear until age 5.

With the help of his assistant, Dr. Jex began placing her first cast.  The process took about 20-25 minutes and Charlotte slept through the whole thing! She was such a champ, and we're so proud of our tough little girl.

Dr. Jex explained that her casts should be changed weekly, so we have our next appointment scheduled for next Friday.  This cast will be removed and a new cast will be put in its place.  Dr. Jex will manually place her foot in a further corrected position prior to placing the next cast.  This process will continue until her foot reaches a correct position.

Charlotte has been somewhat uncomfortable this afternoon as she adjusts to having this big, plaster cast on her leg.  Hopefully, it will only take a day or two for her to get used to.  I would like to say Thank You to everyone who has been praying for her and for us as we begin this process.  Your prayers are being heard and we appreciate them very much!

The Ponseti Method

This is a quick post describing what is known as the Ponseti Method for correcting clubfeet.  Taken from Ponseti International:

With our treatment these structures are stretched with weekly, gentle manipulations. A plaster cast is applied after each weekly session to retain the degree of correction obtained and to soften the ligaments. Thereby, the displaced bones are gradually brought into the correct alignment.

Five to seven plaster casts extending from the toes to the upper thigh with the knees at right angle should be sufficient to correct the clubfoot deformity. Even the very stiff feet require no more than 8 or 9 plaster casts to obtain maximum correction. Before applying the last plaster cast which is to be worn for three weeks, the Achilles tendon is often cut in an office procedure to complete the correction of the foot. By the time the cast is removed the tendon has regenerated to a proper length.

To prevent relapses, when the last plaster cast is removed a splint must be worn full-time for two to three months and thereafter at night for 3-4 years. The splint consists of a bar (the length of which is the distance between the baby's shoulders) with high top open-toed shoes attached at the ends of the bar in about 70 degrees of external rotation. A strip of plastizote must be glued inside the counter of the shoe above the baby's heel to prevent the shoes from slipping off. The baby may feel uncomfortable at first when trying to alternatively kick the legs. However, the baby soon learns to kick both legs simultaneously and feels comfortable. In children with only one clubfoot, the shoe for the normal foot is fixed on the bar in 40 degrees of external rotation. During the daytime the children wear regular shoes.

Credit: http://www.ponseti.info/clubfoot-and-the-ponseti-method/what-is-clubfoot/ponseti-method.html

The Backstory

Our daughter Charlotte was, quite honestly, a big surprise! We weren't trying to have a baby when I found out I was pregnant, so the big 'ol plus sign took us a bit off guard. However, we quickly fell in love with the amazing little life growing inside my body. It was so wonderful to be pregnant again, and I was really enjoying feeling those tiny flutters inside my belly. Those perfect little flutters...

On January 31, 2013, we headed to the hospital for our 20-week anatomy ultrasound.  This was also the day we would find out if we were having a boy or a girl.  We had both been feeling like it was a girl, but I was hesitant to get my hopes up. When the ultrasound tech said those words ("You're having a girl") I was elated! I immediately started picturing pink and bows and frills! Zach, not so much, but he came around.

A few days later, I received a phone call from my doctor that no parent ever wants to hear. There was an abnormality on your ultrasound. It appears that the baby's right foot is a clubfoot. I'm going to put in a referral for you to be seen at Walter Reed in Maternal/Fetal Medicine. Umm, what? There's something wrong with my baby? What does a clubfoot mean? Does she not have toes? Can it be fixed? Will she walk? Is it a sign of a more serious abnormality? Is it my fault? These are just a few of the questions that flooded my mind as my eyes filled with tears.

Over the next few months, I was seen for regular ultrasounds at Bethesda to more accurately diagnose the clubfoot and rule out any other problems.  I did my research on the internet and learned that clubfoot is a very treatable birth deformity.  This, along with my faith, gave me peace in the situation.  We continued to prepare for our princess's arrival.