Wednesday, December 3, 2014

Penelope's Clubfoot Journey (part 2!)

I can’t believe how far we have come on Penelope’s Clubfoot Journey!

When we last left off, Penny had just received her second casting. Now she has been through 6 weekly casts, a surgery, a three-week holding cast and is now in boots and bar!

Every weekend for 8 weeks, we made the tedious drive to Santa Monica to remove a cast, see her legs for less than ten minutes and get a new cast put on.

Those ten minutes in between casts have been gold. Each time we would take a few minutes to clean her legs with a warm washcloth, and then I would nurse her.  She always took the castings really well. Often she would get impatient as the second leg was wrapped, and throw a bit of a fit (understandably!)  A handful of times, they allowed me to hold her while they finished, in attempts to keep her calm.

As happened with her first casting, we had a cast slip again, during her 4th casting. We could not afford to make the trip twice in one week again, so she had only one cast for about 2 days.

After that, I had a lot of people in support groups questioned whether she was A typical/ Complex. I had to completely look up what that meant. In general a complex clubfoot is any foot that cannot be corrected using usual methods.

I was informed that Dr. Dobbs (one of the two top Ponsetti trained surgeons in the US) has a facebook page that he is very active on for answering questions. I sent pictures on my daughter’s foot. He agreed that it did demonstrate complex properties but that it was hard to really tell without having seen her from the beginning to chart progress.

Once we got back to Dr. Ziont’s office that Friday, he explained a little more about complex, which has clearly identifiable markers. Some of which include a deep crease at the heel of the foot (which I realized appeared as such on some photos, but was not reality) as well as a distended toe. Neither of which our Penny presented, thankfully.

However, after a second casting, her doctor decided to cast her similarly to how you would a complex clubfoot. He would cast toe to calf as normal, then bend the knee and wrap a few layers thigh to ankle, if that makes sense. After a few wraps, he then wrapped under and around the knee as normal. In the end it looked as if she had a crazy chunky leg, but it would be near impossible to slip out of!

Luckily, this did not seem to bother her any differently than what she was used to.  It had a few added challenges. It put her at a different angle, for one. However, it actually created a deeper seat when holding or wearing her. Unfortunately many of her storebought leggings would no longer fit onto the casts due to the thickness and sharp angle. Although, I had recently started to make my own, which allowed much more stretch!

After application of her sixth cast, Dr. Zionts scheduled her tenotomy for the following Tuesday. I was extremely nervous but I knew she was in good hands.

A tenotomy is a tendon lengthening surgery where they make a small incision and clip the Achilles heel. After all the casts her feet were no longer curled in, but they still had no dorsiflexion (the ability for the toes to stretch toward the shin), which is what the surgery was going to correct.

We knew that she was going to have a follow up appointment three days later that same week on Friday, so decided to stay in Santa Monica the full week. We also all felt more at ease with her being close by afterwards incase anything went wrong. My older daughter, Hailey, was going to be along for the ride as well, although I hated having her out of kindergarten so long.

That Monday, Hailey woke up with a terrible cold. I immediately thought of all the ways this was really terrible. It was going to make for a very long week, but more so I was worried about Penelope catching it and not being able to have her surgery. We also had Penny’s 2-month well baby checkup. Thankfully, they agreed we should delay vaccinations until after her surgery so we didn't have to worry about side effects on top of everything else. They also gave us some surgical masks for Hailey.

While there, we received a call from the hospital in Santa Monica informing us of what time to be there. We were previously told that newborn surgeries are always scheduled for the morning, due to the fasting that needs to be done. So finding out that her surgery was scheduled for 12:45 pm absolutely threw me!

The following few hours were filled with back and forth headaches dealing with the guidelines of fasting. They originally said no nursing the 4 hours leading up, and clear liquids for 2 hours longer. So theoretically that should mean last feeding at 8:45, except then they go on to say, 6am! That would be a full 8 hours in between feedings. It seemed like nothing I was saying was making them understand that their math was off. Finally, they consulted her pediatrician, and she said breast milk, not formula, is mostly considered a clear liquid so it was ok closer to her surgery. We settled on a feeding 3 hours ahead of time.

Although I felt bed, Hailey happily wore the mask in the car for the few hours it took to get to Santa Monica, to avoid getting the baby sick.

The next morning, we woke very early, we to breakfast, and headed to the hospital with a very sick 5 year old in tow. Penny had her last feeding around 9:30am and seemed to do just fine afterwards.

When it was time to go back, I went with the baby alone while my husband and oldest waiting in the waiting room.

I met with her doctor, the anesthesiologists, and the nurses that would all be in the room. Everything was going fine until they tried to take her vitals. They had to take tape a pulse reader onto her ear, which looked pretty darn uncomfortable. After about 45 minutes, they were ready to take her back.

At this point she was now in full-blown tears and I felt just awful. They issued me a beeper like you get at restaurants when there is a wait, and sent me back to the waiting room. We decided that instead of waiting and worrying, we would spend the 30-45minute time frame hitting up the hospital cafeteria.

By the time we were done eating, it was right at about 45m so we headed back. Time was dragging on and on and before we knew it, it had been more than an hour past the time we'd been told to expect to see her. 

Obviously I am now in pure panic mode. The receptionist was able to look in the computer and see that she was out of the operating room but they were waiting for a recovery bed to clear up. By the end we waited nearly 2.5 hours and I was in full tears.  I also needed to nurse very badly. When they called our name, I rushed back to find smiling nurses and a crying baby.

They saw me and were completely confused. I explained to them how long we waited and how no one was telling us anything and after 5 minutes they all had tears in their eyes and one of them hurriedly handed me my babe. She nursed right away!

Her surgery went completely fine. She was already cast so I never say the incisions. She was hooked up to an IV as well as the pulse reader.

After about an hour wait in recovery, they let us take her with us to the hotel. They even let me keep the baby hospital gown!

The drive from the hospital to our hotel is roughly 45 minutes. It took over two hours because we had to stop so many times! I had never seen my little girl in such an awful mood. We gave her some Tylenol, which seemed to help a bit but those first few days were pretty rough.

We had a quick follow up that Friday, and then headed back home. A full week in a hotel definitely made us all miss our beds!

Now we were on a count down to the next big step- getting the casts off! Three weeks later, on Nov 21st, we were heading back to the hospital to switch to 23/7 boots and bar wear.  

For one hour a day, Penny would be allowed a break from wearing the boots and bar. I spent the weeks fantasizing about what we would do with that glorious free hour each day. First on my list was holding her in the shower! I also couldn't wait to kiss her feet, and let her kick at her play mat, and do tummy time more comfortably!

As soon as we walked into the hospital, my stomach fell. It was like our very first visit all over again. While we sat and waited to be called, I started crying. I wasn’t sure how to place my feelings. I should be happy, right? I was happy. But I also felt sadness. She was used to the casts. WE were used to the casts. It was all we had really known of her. Crooked feet and heavy casts. And we were about to see our baby girl in a whole new light, and I felt unready for it. I know that sounds silly.

Thankfully my husband said he understood completely and felt the same. Of course, we know it’s all in her best interest and this is all giving her the quality of life of any normal child.

When the casts came off, I was in shock. Her feet looked so good! She had ankles for the very first time. It was absolutely amazing to see. She didn’t much care for the brace, but I can’t say I blame her. We had to take a few tries putting in on in the office to get the feel for it. We also realized while there that we never thought to bring socks, seeing as that’s nothing we’ve ever had to buy her. Once we had them securely on, she actually didn’t see too bothered by them.

We’ve been on this step for about 2 week now, and I couldn’t be happier! We love our free hour and fill it with as much playing, stretching, bathing and love as humanly possible. She seems a much happier baby and gets so much enjoyment from kicking those little piggies.

I will say that, I assume from being baked in socks and a boot all day, she does not have the yummy baby feet smell. They smell so bad before baths!

My husband loves telling her she looks like she training for the Olympics with her little baby snowboard and can’t wait for a stranger to ask so he has the opportunity to tell them that’s why she is wearing it.

As of yet, we have had no major complications. She did have a decent size bruised looking blister forming on her heal on day 2, but after doubling up on the socks, and really ensuring we were getting the straps as tight as we could (to avoid friction), it seems to be doing a lot better! 

Then just the other night, cast-slipping Houdini stikes again! We woke up to her very pleased with herself in having somehow escaped her braces. This caused a blister to pop. We just cleaned it up, applied a blister band-aid, double socks and put her back in.

There was been a bit of a learning curve in the beginning. There is a bit more work that needs to be done to accomplish baby wearing. I am going to be looking into a more comfortable carrier soon. We still use the Baby K’tan, but I’m not sure it’s the best option with the boots and bars (BNB).

The first few days, she was really skittish of her feet being touched. Sometimes would break into tears as soon as you would, thankfully that has worn off!

I was really worried about nursing, but not much has changed with that, other than that she now has one leg up in the air.

In one of the first few days, I was really beating myself up over a small accident. When putting her boots back up, I had her on my lap, legs pointing away (so I was working upside down) I put her boots on, and then went to connect the bar between, one foot at a time. 

I realized just after clicking in the second heal that I had done it backwards, facing both of her feet backwards! It was the longer split seconds ever while I fumbled to unclick it back off. 

I couldn’t believe what I had done. While it did no harm, I didn’t even want to touch her brace for the next day or so.

We have a checkup in less than 2 weeks, then again 5 weeks after than, and lastly 6 weeks after that, and then we are onto night time only BNB!

My little princess has been through so much already, and some days I just feel so badly for her but she takes every turn with such grace and has managed to quickly adapt to every change without much protesting. 
o I so admire this beautiful baby girl. I also have complete faith in her doctor, and don’t doubt that in a few years, this will all be a thing of the past!

Thank you, Dr. Ziont, and thank you, Dr. Dobbs!  

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  1. It amazing being able to follow along with your journey on here. I can see so much improvement in the look and shape of her feet and legs. Lots of love to your sweet family and an extra hug for big sis.

  2. Oh sweet baby girl. She IS handling everything was grace. At least you can see some of the fun and the bright side (sweet little sleepy snowboarder...your hubby is right). Thank you so much for sharing sweet Penelope's story on Found & Foraged. It means a lot that you would share something so personal with us. Much love and healing prayers to you and your family!

  3. What a journey and what an adorable little girl! Thanks you so much for sharing your post on the HomeAcre Hop, hope to see you again tomorrow! - Nancy The Home Acre Hop

  4. Olympian for sure! How good will that be Dad when you can tell the media that shes been in training since birth and you knew all along :) She must be such a patient soul, all the best to her. Thank you for sharing with us for Sunday Brunch x

  5. She is so beautiful. I know a grown man now that had club feet as a baby and he walks well. This is amazing what can be done and she will never remember it all.

  6. Thank you for posting to Motivation Monday!

  7. Such a gorgeous baby, Jackie! I saw your feature on Boogieboard Cottage and I've been captivated by your story. Thanks so much for sharing. Your courage and tenacity is inspiring! The best to you and your beautiful daughter :)

  8. Thank you so much for sharing this journey with us so openly. It helped me to understand more about the procedure to correct clubfoot and I am sure it would be even more helpful to someone whose child might be undergoing the same thing. Thank you for sharing this excellent family post with us at the Hearth and Soul hop.

  9. What an ordeal you have been through! I am thankful that you have such wonderful doctors. What a precious little girl. Thank you for sharing at What We Accomplished Wednesdays. Have a merry Christmas season!

    Blessings, Deborah