Healthy Hips, Happy Hearts

Healthyhips

June 2015 – This year, as we celebrate “Healthy Hips Awareness Month”, I reflect on how far we’ve come since the day our sweet boy was born. For those of you just starting your hip journey, as unimaginable as it seems, you’ll reach a point when you look back in awe at the obstacles you and your entire family overcame. You’ll wonder how in the world you made it through without a nervous breakdown, or be surprised you didn’t experience more than one. You’ll watch your little one run for the first time certain you are the witness of a miracle. You’ll look at your husband, (or wife), and know that you are stronger in your marriage now than ever before. You might even look at an ultrasound of your hip warrior’s little brother or sister with a sense of peace in knowing God will get you through should the odds win again.

bigbrother            baby2

Last month, Mason’s X-ray showed proof both femurs are developing and his doctor’s exam confirmed his sweet legs are the same length. We’ll go back in six months for a check-up, and then, God willing, one year.

The end of our hip journey is still years ahead. However, Part I, the soul wrenching, faith finding, suck it up and deal part, has ended. Part II begins with a toddler full of spirit, hard to catch and smart as a whip. It also begins with a new miracle arriving January 2016. Regardless of which chapter or book we’re in, we will always remember the trials that got us where we are. My hope for you is that when you’ve made it to your own Part II, or know someone struggling to make it there, you share your story. God allows us to experience storms so that we can be inspiration for others to see the rainbow.

“Consider it pure joy, my brothers and sisters, whenever you face trials of many kinds, because you know that the testing of your faith produces perseverance. Let perseverance finish its work so that you may be mature and complete, not lacking anything. ”
– James 1:2-4

“We have this hope as an anchor for the soul, firm and secure”
– Hebrew 6:19

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Recovery = The 4 Letter Word

During Mason’s time in his cast, we celebrated his first birthday and his ability to overcome adversity each day. Around week four, he mastered an army crawl to maneuver his way to a favorite toy. After learning the words “momma” and “dada”, “hot dog” came next as he kicked his free leg along to the dance with Mickey. He slept through the night and adjusted beautifully. October 16 approached quickly, and we were back at Scottish Rite to remove what would hopefully be the one and only body cast he’d ever wear.

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Happy Birthday Mason!

Have you ever experienced a 12-month-old deprived of food and milk for more than 14 hours? A 1:00 PM time slot was all that was available. I felt like the worst mom in the world, but knew I was protecting my son from further complications as he went under anesthesia for yet another time. When he was finally called back, I didn’t have to pass him off to a nurse, I was able to walk back with him and hold his sweet hand until he drifted off to a sleep designed to prevent him from experiencing the noise accompanied by cast removal. My husband and I waited in our room for what seemed like forever until his surgeon tapped on our door with a smile that relieved my fears. His hips were stable and he was being fitted for a rhino brace; the cast was gone.

Rhino            Mickey

For the next two weeks, we adjusted to life in the rhino: a brace designed to keep his hips abducted to allow for stability, but one that could be removed for baths and diaper changes. This shouldn’t come as a surprise, but Mason wasn’t phased. He continued to wear the rhino for another 10 weeks at which point we returned for an x-ray to determine his progress. However, something else was brewing in our household, something not mentioned to-date.

Halloween

Halloween 2014 – I underwent arthroscopic hip surgery to repair a labral tear that had been misdiagnosed for two years. In January of 2014, after Mason’s two attempts at the Pavlik Harness, an MRI confirmed a tear in my left hip that had made my pregnancy and mid-twenties miserable. What was the fix? Surgery. Guess who operated? The one and only “hip guy” who was and still is caring for my son. My left hip bone was shaved down to smooth out the bumps (FAI) and to prevent additional tears in the future. I was sent home on crutches for six weeks.

Publix

You may think it’s ironic that I too would struggle with hip issues. My diagnosis was completely unrelated to Mason’s: I had too much hip (FAI), Mason had too little.

“There are times in life when we are faced with situations that seem dark; Situations that cause us to question our faith in the promises we have received from God’s Word. Sometimes we struggle with circumstances in the world that cause us to be distracted away from God as we try to battle and win by our own efforts, ” (Wrestling with God, god.net).

Take a look at Genesis chapter 32: Jacob wrestles with a situation that causes him fear as he prepares to face his brother, Esau, for the first time since he stole his birthright. As his family traveled back to his father’s land, he sent his wife and children ahead of him to cross the Jordan river. Left alone, he struggled with a ‘man’ until daybreak.

“When the man saw that he would not win the  match, he touched Jacob’s hip and wrenched it out of its socket.” Gen 32:25

The ‘man’ pleaded with Jacob to let him go at daybreak, but Jacob refused unless the ‘man’ blessed him.

“…Your name will no longer be Jacob,” the man told him. “From now on you will be called Israel, because you have fought with God and with men and have won.” Gen 32:28

I don’t believe in irony, only in the fact everything happens for a reason. I believe that I was able to take the dysplasia from Mason’s left hip so that we were only faced with surgery on his right. I believe that during the first two months of Mason’s life, I wrestled with the Devil who tried relentlessly to persuade me to give up hope and lose faith in the only being who could possibly see us through. I believe that 2014 was the year I learned more about myself, my marriage and God than I ever thought possible. God never promised a life with out storms, but he did promise the rain would stop.

HOPE

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Spica Cast Must-Haves

Let me open with this: it’s really not as bad as you’re thinking.

With any change to your child’s schedule/routine comes a few nights of lost sleep coupled with tears from both you and your baby. However, I am a true believer that little ones are super heroes with the ability to adapt to life’s changes like champs – my son is tougher than anyone I know.

The first two weeks were the hardest for all of us. It was recommended Mason lay flat as much as possible and that we prevent his hips from flexing, period. My husband and I did everything in our power to follow these guidelines as we were determined our super man would not be confined to that bulky piece of plaster any longer than he had to. Below, you will find what we could not have lived with out for six weeks. I hope you find our tips useful and that you will share with other hip families seeking advice.

1. Family & Friends

If your situation is anything like ours, you likely went from being either a full-time employee/busy stay-at-home mom, to caretaker, 24/7. I would not have been able to keep a positive, calm attitude had it not been for the visitors and help we received. Not only did it provide companionship and breaks for me, Mason LOVED having company and entertainment other than mom. He sensed when I was at my worst, and my anxiety only escalated his frustration. I cannot stress enough the importance of finding time for yourself during a time that is only about your child.

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2. Duct tape

As long as your child doesn’t have a latex allergy, strip that cast of the “waterproof” tape petaled during casting and replace with duct tape. It’s scary at first – you don’t want to mess anything up – but it is AMAZING. If his diaper leaked or the inside of the cast was soiled, I simply wiped the tape or replaced it. I found the waterproof tape used by hospitals was anything but waterproof and replacing it was the best thing I did for Mason’s comfort.

3. Cast Cooler

It’s worth every penny. Using a hair dryer is simply not efficient and doesn’t do the job. We hooked Mason up to the vacuum twice a day to pull out moisture and cool him down. Chillin’ in his bean bag chair (which is also a must), he wasn’t phased by the noise.

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4. Portable DVD Player/iPad/Tablet

As I mentioned, the first two weeks were tough. We couldn’t allow Mason to sit up and play with toys which left us scrambling to find ways to keep him occupied. No, I don’t support the idea of “screen time” for children under two, but when you have a 10-month-old who can’t move, you find any and all cartoons/videos that provide temporary entertainment.

5. The same diaper (and size) used prior to surgery and one size up

I tried everything: preemie/newborn diapers for the inside, lining diapers with maxi pads and panty liners at night, using only maxi pads for the inside of the cast… and then stumbled upon another hip mom’s advice: once the swelling goes down, tear the Velcro closures off your baby’s regular size diapers, tuck them into the inside of the cast and wrap a larger diaper, one size up, on the outside. Once I started doing this, we didn’t have another leaky diaper.

NOTE: Once the swelling goes down (1-2 weeks post surgery), you can actually push the back of the diaper up into the cast as far as it can go. It works best to roll your baby onto his/her side or belly to create space for your hand to tuck the diaper in. We made this into a game… one, two, three, ROLL!

6. Spica Chair

On day 14, we were cleared for Mason to sit up. From that point forward, he was in his Spica Chair. Thankfully, our physician’s practice had two circling around between families that weren’t being used. They are a bit pricey if you have to purchase them out of pocket, but I promise it’s one of the best investments you can make. I will NEVER forget the smile on Mason’s face when he sat up for the first time after two long weeks or how great it felt to pass the chairs on to another hip family in need.

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7. Johnson & Johnson Face/hand wipes

Let’s face it, sponge baths aren’t easy. Once the initial intimidation wore off, it was our new normal. Every other day, I used Johnson & Johnson Face/hand wipes as an alternative and would actually wipe his belly and back as best I could to remove the grime that had rubbed off on his skin.

**UPDATE** Johnson & Johnson just came out with head-to-toe wipes that are much larger than face/hand wipes and would be a great option for cleaning! 

On a different note, here are my tips for sponge baths:

  • Use a warm, damp cloth with your favorite baby wash suds,
  • Wipe his/her face, arms and legs,
  • Follow with a clean damp cloth to remove soap.

My take on shampooing:

  • Lay your super hero on top of a few towels (for comfort and to soak up water) with his/her head at the very edge of the kitchen counter/sink,
  • Soak his hair with water from the sink faucet (the kind that pulls out),
  • Shampoo and rinse as usual, and
  • Immediately place a dry towel under his neck, wrap his head with the towel and pick him up. Wah-laah, the cast is still dry.

8. Stroller

I originally thought I would need to purchase an umbrella stroller to accommodate Mason’s cast. Surprisingly, I was able to position him comfortably with the use of pillows in our Gracco jogging stroller. Every morning, we went for an hour walk and marveled in his majesty 🙂

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7. Febreeze

At each diaper change, I spritzed a small amount of Febreeze (or lavender oil) on the outside of the outside diaper. If the cast began to smell, I’d also dab a little on the inside and makes sure to do an extra “cast cooler” that day.

8. Mother’s Intuition (which should also be up there with #1)

No, we weren’t supposed to pick Mason up for two weeks, allow him to have “screen time”, use duct tape or stick our hands inside the cast. Yes, my job was to ensure my child was comfortable, comforted and was treated like the normal, healthy 10-month-old he was. When it was clear  he had had enough, I picked him up and held him until his tears stopped. When he had to lay completely still, he fell in love with Mickey Mouse. When I found a system that worked, we stuck to it and I wouldn’t change a single thing.

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D-Day

As I compose the chapter that captures the hardest part of our hip journey, I suppose it’s not coincidental the amount of time it’s taken me to gather these words falls during the same month that brought us temporary “normalcy” in 2014 [March].

Labor Day weekend brought with it time to spend with family and the opportunity to savor our last few days of baths and playtime free of the challenges to come. I will never forget what transpired as we went through our bedtime routine the evening of September first. I rocked my precious boy to sleep as tears of worry, anxiety and fear rolled down my cheeks. The thunderstorm that rolled through that afternoon had just calmed, a timing so perfect it’s hard to believe. Before laying Mason in his crib for the night, I prayed for a sign that God would allow the surgery to happen, we would be strong enough to endure the weeks to come and we could finally close this relentless chapter. I felt a slight “nudge” to walk out my backdoor to  calm my emotions and was greeted by a triple rainbow – a clear sign the rain had stopped and the flood would not come again – God’s promise.

We arrived at CHOA at Scottish Rite mid-morning with a child angry with hunger, but more calm than his parents. With my husband by my side, we walked down the corridor which lead to the OR and passed our son to the nurse who promised she would take good care of him. We returned to our tiny waiting area and watched the minutes tick by until we received our hourly updates.

His surgery went beautifully. With an open reduction, part of the tendon which holds the femur in place was removed to allow proper positioning. Our sweet boy was rolled into his recovery room with a blue spica cast and a left leg free to kick as he pleased. I can’t describe the emotions – looking down at your child who up until this point was completely unaware of any abnormality, free to crawl, kick and play as he chose, was now confined to this horrible blue plaster. It was heartbreaking and it completely sucked, but it was our new normal, one I decided to embrace.

The next six weeks my full-time job was Mason (on a different level). My number one goal? His cast would not become soiled and he would be as comfortable as possible. The first week was a challenge, but like most situations, once you accept the reality, you figure it out. Or, with a more positive spin, we “received adversity as a gift with a promise and a purpose.”

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“Consider it pure joy my brothers, whenever you face trials of many kinds. For you know the testing of your faith produces perseverance. Let perseverance finish its work so that you will may be complete, not lacking anything.”  – James 1:2-4

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In the Meantime

March 2014 began what we expected to be the life most new parents in our stage were experiencing. Laughter with out fear of the next ultrasound/x-ray, trips to the grocery store with out bystanders staring at your baby’s harness/cast and pure joy which radiated from our son’s face. July 16th was so far away; out of sight, out of mind.

As the months progressed, Mason began to crawl at lightening speed. I truly believe the weeks spent in a harness only encouraged his determination to move. He began to pull up to standing which revealed a leg length discrepancy that reminded us of what loomed ahead. His personality bloomed and we found we had one very spirited, very happy child. I remember friends and family commenting on his happiness, even with the frequent ear infections that developed each time he caught the “daycare germs”.

On July 14th, mother’s intuition struck again. Mason exemplified his normal signs of an ear infection which was confirmed by his pediatrician. What was different this time around? I had taken the day off to visit my co-workers and introduce them to my son for the first time. I had completed the paper work for another leave of absence certain it would transpire. I had mentally prepared myself, I had all the supplies, I thought I was ready.

Driving back from the office with my son screaming in pain, I received notice his surgeon cancelled the procedure scheduled just two days later as a precaution. For the remainder of the ride, I joined my son and had a complete breakdown: the really ugly, screaming and crying bang the steering wheel kind. When I put the car in park, I knew what I had to do: roll with the punches, God wasn’t finished with me yet.

Rescheduling the surgery wasn’t as easy as I anticipated. With his surgeon out of town two weeks in August, I didn’t think we’d ever move forward. As dates circled around, we visited a new ENT who recommended Mason have tubes placed in his ears. Not only should he have tubes, but why not schedule both surgeries to take place on the same day? Anesthesia would be administered once, hallelujah.

Finally, a date was confirmed: September 2. Mason would have tubes placed and an open reduction surgery, all we had to due was wait a few more weeks.

On Sunday, August 2, 2014, our Pastor, Andy Stanley, started a new series entitled “In the Meantime” with two life lessons for me to learn:

  • What to do when there’s nothing left to do, and
  • Receiving adversity as a gift with a purpose and a promise.

This series revealed to me how to embrace our journey with hip dysplasia. Most importantly, God revealed to me how he would use the trials we experienced to minister to others and ultimately “encourage a growing relationship with Jesus Christ”. How did he use our story? You’re reading it now.

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Curve Ball

We had two months of normalcy: normal baths, normal play and normal diaper changes. I was actually excited about diaper changes: no straps to go under, loop through or avoid. We finally felt we had the experience we were supposed to have. It took a long time for me to realize what we were “supposed” to have was an exceptional experience we were “destined” to live through, one that only God could orchestrate.

Two days before the next chapter of our hip journey, I dropped by Mason’s daycare to collect his things. I opened the door to find reminders that will forever touch my heart and remain in Mason’s room to this day:

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Prior to leaving, the director lead us in a prayer over Mason. I will always remember her gentle words, “we trust in you Lord, for you are the great physician.”

February 28, 2014 – We arrived to Children’s Healthcare of Atlanta (CHOA) at Scottish Rite for a closed reduction surgery. As expected, I was a total wreck. I could not imagine a life with my four month old boy confined to a body cast for 18 weeks. I was overwhelmed, pissed off and reluctant to accept reality. I sucked it up and put on my big girl face knowing that I couldn’t let Mason feel the anxiety radiating from my body. We knew the statistics and the risks, but continued to pray for a miracle.

The memory I have is vivid. Mason was amazed at the bubbles which occupied his attention as the miniature cuff took his blood pressure. I waited until the very last minute to dress him in the tiny hospital gown that waited for him on the over-sized gurney. I kissed both of his legs, hugged him as tightly as I could and passed him to the nurses that I entrusted to protect my baby when I couldn’t. With my husband’s hand gripped tightly in mine, I watched the minutes tick by. Thirty minutes passed and we heard a tap on our waiting room door. If you are a hip mom, only you can understand what this meant: failure.

Mason’s right hip could not be safely placed due to the severity of the dislocation. The tendon, which acts like an accordion, was stretched to a point that prevented his femur from remaining in the hip socket. We were discharged with no restrictions and told to move forward with scheduling an open reduction surgery between the months of nine and 12.

Was I sad? No, I was selfishly thrilled. I knew this curve ball would give God more time to work his miracle and I would continue to pray for it.

#bestill

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Pavlik Harness – Tips & Tricks

As a mother with a “Type A” personality, six weeks in the Pavlik Harness meant I had to find a way to (A) keep it clean and (B) keep Mason comfortable. I spent hours researching blogs and hipdysplasia.org to develop a system that worked for our family. Below you will find five items/tips that made our “harness days” easier.

If you have additional ideas or would like to share this information with other hip families, please include your tips in the comment section and share this post!   

1.  Halo SleepSacks 

One of the most challenging things about the harness was that Mason could no longer be swaddled. At three weeks, he became colicky due to his reflux and it was nearly impossible to calm him at night. Our pediatrician recommended we continue to swaddle his arms and raise his mattress at an incline. The challenge: how could we swaddle just his arms? I swear he was a baby houdini; he could break out of any swaddle. At our initial ortho consult, his doctor recommended sleep sacks to keep him warm during the winter months as they are designed to have a wide opening for the legs. Coincidentally, they are also hip friendly and the infant design includes an arm swaddle. Halo sleep sacks served two purposes for us: (A) The original design was worn over his harness each day which kept it clean, and (B)  We could still swaddle his arms and keep him warm with out pants (Genius).

During the day we unzipped the SleepSack half way so that his legs were free to kick.

During the day we unzipped the SleepSack half way so that his legs were free to kick.

2. Onesie Extenders

Lets face it, velcro straps are uncomfortable. There’s no cushion, they’re scratchy and they’re loud. Mix that all up and you have one unhappy newborn. We tried cutting the tubes off of our little guys socks and encasing the shoulder straps to prevent scratching. The socks wouldn’t stay in place and they continuously unraveled. I stumbled across a tip from another hip mom and purchased onesie extenders. They were the perfect size, provided the barrier he needed and they could be removed and washed if soiled. The best $15 we ever spent.

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3. Onesies

Yes, the harness is ugly and wearing it under clothes would have hidden this fact. However, I learned to snake his onesie through the straps and it seemed to be more comfortable for him (we were instructed to always leave one side secure when changing). Wearing a onesie under the harness helped to protect his skin from scratches and irritation. 7-13-2014 5-17-44 PM

4. Johnson & Johnson Face & Hand Wipes

Mason wore the harness full-time which meant sponge baths replaced bath time. I always wiped his face down with a warm wash cloth, but found Johnson & Johnson Face & Hand Wipes to be a life saver. The wipes saved us time, have the same scent as the tear free shampoo & wash, and this option prevented the harness from getting wet. To wash his hair, I would simply wet the wipe with warm water to allow a more thorough cleaning.

5. Shout & a Toothbrush

At some point, I realized that I couldn’t prevent all soils and stains, especially having a little boy. I spot cleaned the harness with Shout and a toothbrush and wiped the solution away with a damp cloth.

6. (Added 5/31/16): Since writing this post and having our second son, I’ve come across a product that should be a perfect swaddle solution for the Pavlik harness. The Swaddle Strap, approved by the Hip Dysplasia Institute, will allow you to swaddle your little one’s arms only. As another reviewer stated, “I could kiss the makers of this product”!

Please feel free to contact me with any questions.

 

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