Free at Last!

April 4, 2013 was the hardest day we'd ever had as parents. It was the day that our sweet Katie was placed in her spica cast, and we began this journey of hip dysplasia. Here we are now: 14 weeks, four new teeth, hundreds of diapers, multiple sponge baths, hours of army crawling, and the cast has finally come off! She is free!

I have looked forward to this day for SO LONG. 98 days to be exact. Today was a day I was nervous about because it was the day we would find out if our journey was coming to an end, or if we were going to be opening a new chapter of treatment. I am happy to say that her X-ray came back perfect. She came home without a brace, and we have an appointment in 6 weeks for a follow up X-ray to make sure her hip is still in place. Am I nervous about it?  I'd be lying if I said I wasn't. But, I am choosing to trust in God and in His plan. He got us through this, and I believe that He will keep her hips secure and in place.

Katie was not a happy camper during the cast removal. She cried her eyes out. Naturally it was hard to see, but at the same time we were so excited for what was happening that our hearts were not as broken as they've been in the past while watching her cry at the hands of DDH.  A few minutes of a saw buzzing away, a few more minutes of scissors cutting apart the inner lining, and then there they were--the most perfect little legs and thighs I had ever seen. People had prepared me for a hideous sight, but Katie's little legs looked amazing. A small patch of flaky/scaly dead skin, but that was it. Her doctor said we win the prize for cast care.  He was bery impressed with the condition of her skin.  One bath later and her legs are looking as good as new.

Right now her legs still naturally fall into the froggy position, and they will for a while. Eventually they will go back to normal. We need to not lift her up by her legs when changing her diaper because her tendons and tissues are still doing their work. We also are to not to force her legs into any position. We need to let them do their natural movements. But if she wants to stand, she can. If she wants to kick, she can. Basically, anything she is comfortable doing, she can do. And she's already army crawling all over. She seems surprised by how much easier it is to move. She ended up rolling onto her back already, too, and it really caught her by surprise!

Everything about tonight was perfect. I got to bathe her, I got to put lotion on her entire body, and I got to nurse her, holding her close to me.  But, best of all, I got to hold her and rock her to sleep for the first time in 98 days. She felt so perfect and light and cozy. I'm so in love with my precious baby all over again.

 Free at last, free at last, thank God almighty she is free at last!!!

The cast had just come off, and I was able to put her in a favorite outfit of mine! She still looks a little shell-shocked from what had just occurred.

Five more days!!

13 weeks and 2 days. That's how long Katie has been wearing her cast. 5 days. That's how long we have left. 2:15 PM on July 11th cannot come soon enough. I can hardly believe that we have been on this journey toward healthy hips for Katie for this long, and am so thrilled to be so close to the end. Katie has adapted fully to life in her cast, and we are now baby-proofing since she is crawling everywhere. Yes. Crawling.
Katie's doctor is optimistic that she won't need a brace when the cast comes off. Please pray that this is indeed the case. We would like nothing more than to be able to move forward with our lives, and make DDH (developmental dysplasia of the hips) only a party of Katie's medical HISTORY, and move forward with her life as an adventurous, curious, crawling machine.
Throughout this journey I have read so many stories of moms who knew something was wrong, but pediatricians gave false assurances that everything was fine. These women now have babies/toddlers whom have endured multiple procedures and operations. I feel blessed to have had a doctor who humored me and gave me the X-ray. He was wrong. I was right. My intuition has hopefully helped to make Katie's journey a short one. I firmly believe that ALL newborns should be given the ultrasound at birth to check for DDH. They charge us to check for their hearing, so they should check for this, too. It would be so simple. It would save so much pain and frustration for families.
Thank you to the friends who checked their babies' hips. I am so happy that all of your babies' hips are healthy!
Final thought for you mommies out there...please don't use the bjorn. It does not support the hips. If your child has loose hips (which you have no way of knowing), it could cause the hip to slip out of the socket. I feel certain that this is what happened with our sweet Katie. Use the ergo. It supports the hips. It is recommended by orthopedists for healthy hips.
Five more days...

First ride on the carousel. She loved it! 

Cast Change and FINAL Countdown!

We had our cast change on Friday for our hip little Goldenbaby.  We were secretly hoping that it would just come off for good, but, alas, that was not the case.  The doctor did confirm that things are going well and the cast is indeed doing its job--insert silent cheer--but unfortunately it still needs to be on for 6 more weeks.

Katie was a trooper and came out of anesthesia much easier this time.  I think she was used to the cast, so she wasn't as scared or freaked out about her inability to move.  I also knew how to hold her, and was able to nurse her comfortably--something we couldn't do last time.  ALSO, we were actually at CHOC this time, and not just the Outpatient Pavillion, and so I felt we were given MUCH better care.  The nurses seemed to know more about what they were doing, were more sensitive to Katie, more sensitive to me, and just better overall. 

I hate this cast, I really do.  But, Katie is becoming mobile in it--she even rolled over while playing on the carpet the other day!  I was shocked to find her on her back, and she seemed shocked, too!  Katie moves herself around, rotating like a little turtle in a shell.  She's the sweetest baby, and makes my heart melt.

I can't wait for July 12th so I can give her a big warm bath, kiss her fat juicy thighs, and feel nothing but squishy baby skin when I hold her. 

Hip Dysplasia Awareness Month

June is hip dysplasia awareness month...I know it's not June yet but I have lots of friends with babies right now, so I feel compelled to do this now.  So, mommies, check the legs of your babies. Do they seem to be the same length?  Good. Next, lie them on their backs and lift up their knees with their feet flat on the ground.  Do they come to the same height? Good. Next, check their fat juicy thighs. Are they symmetrical to each other?  Because they should be.  And, finally, how is their development? Are they rolling over/crawling/walking on schedule?  If not, and you suspect something is wrong, ask for X-rays. For reals. If they are on schedule developmentally, but any of the other indicators are there, call your doctor and ask for an X-ray.  A pediatrician is not going to catch it. Not trying to scare anyone. Most babies don't get hip dysplasia, but mine did and so I'm so much more aware (obviously) and want everyone else to be aware, too!  My pediatrician thanked me for being so proactive because he don't catch it. Our orthopedist told me it went undetected because it was so mild. Had I not educated myself (thanks google) Katie would still be undiagnosed. Educate yourselves. Check your babies. 

Four weeks down...

We have had the spica cast for one month as of tomorrow!  Katie has been such a trooper, and life seems to have gone on as normal.  I will say that time seems to be dragging.  In many ways I can't believe it's already been 4 weeks, but in many more ways it feels like we've had this hunk of pink junk for forever!! In four more weeks we will go in for her cast change.  At that time we will find out how much longer we have to have it in our lives...we are hoping and praying for good news on that day!!

Katie's Papa Mike purchased her two spica tables--one for home and one for at the babysitter's house.  They arrived and have made a WORLD of difference to Katie's daily life...and ours!  She is able to sit up in her table and play with her toys, and stays entertained for a much longer period of time.  We are SO THANKFUL to Papa Mike for his generosity!!  And thank you to Ivy Rose Spica Chairs for making the tables for us!

Her name is written in Disney style...of course! We will be adding Minnie Mouse stickers soon!



 

Playing happily!

Big brother was so excited for her new table, too.

 



Teeth!  We have teeth!  In the past two weeks Katie has gotten her first two teeth!  Our little baby is growing up so quickly. 

Hard to see them, but they're there...along with a shirt full of drool!

She is eating up a storm.  She LOVES the food that I make for her.  Yep.  I've turned into Martha Stewart in my spare time and am doing something I never thought I would do: I'm making my own baby food.  I used to mock the people who do this (I never understood why anyone would make that which is packaged so nicely and conveniently at Target and sitting on the shelves just waiting to be purchased.)  Well, now I know.  It's so easy to do.  It tastes better.  And it doesn't take any time at all. So, I apologize to all of those whom I previously judged!!!  I was wrong!  But, I'm not judging those who buy theirs either.  I totally understand both sides now.  ;-)  Making her food is the one thing I can control in her little life right now, so it makes me feel happy to be able to do it for her!

Picture of first carrots...she is much less messy when she eats now. :-)

 

 



Prayer Requests:  That the next four weeks go by quickly, that her X-Ray on cast change day (May 31st)shows miraculous healing and that the cast can just come OFF instead of being put back on (hee hee), and that Katie continues to be so easy going throug all of it!

Praise reports:  Katie has been amazing.  She has adapted better than we ever could have hoped or prayed for. And, the outpouring of love from friends and family, and church family.  On Sunday a church member laid his hands on Katie and prayed for her healing.  I was so touched and felt so blessed.  God has shown us so much through his mercy and grace during this time.  For all of this we are truly thankful.

One Week Down...

Well we survived the first week!  Katie is such a trooper.  I'm fairly certain that she believes this cast is just now a part of her body.  She doesn't seem phased by it at all.  She is back to sleeping through the night, and she has still figured out how to move around in her crib.  She's like her big brother in that respect! 

She began at the top of the crib, and woke up, unhappy, at the bottom!  Little stinker!

 

Diaper changes have been a breeze, feeding has been successful...I'd say we've mastered this spica cast pretty well.  Don't get me wrong, I still don't like it.  But, I can live with it.  It's only for a short while.  We will survive!
This week we ordered her spica table--thank you to her Papa Mike for buying it for us! And it will be arriving sometime next week.  I cannot WAIT for it to arrive.  Play time is difficult for a baby in a spica cast because they need to move around a lot--I think she just gets uncomfortable in her various play positions.  We've been getting creative though, and it's been working....but the Spica Table from Ivy Rose Spica Tables will be a life saver!

Someone took over our favorite chair!

 

Doctor's Visit:  We had a visit to her doctor this week, and we scheduled her cast change.  (They change the cast mid way to adapt to her growing body.) It is scheduled for May 31st, which is 8 weeks post the original procedure.  We had originally thought it would be at 6 weeks...so this feels late.  But, I trust the doctor...since he has 38 years more experience than I do.  We were able to talk to him about her procedure, and he said that it went really really well.  He absolutely feels that the procedure will be a success, and even thinks that she won't need the brace after the cast comes off--BUT, he did say that it ultimately depends on her body and her healing.

I continue to pray that she won't need the brace afterwards. 

Gift from a friend--it's perfect. 

Thanks for the continued prayers for our family!  People keep telling me that I'm so strong--I'm not strong, GOD is strong, and your prayers giving me strength!  

7 weeks until the cast change! I uploaded a new app for my phone.  It's my new favorite app!

Three is a Magic Number

Day three. Such a better day. Katie slept well last night only waking once, and today she took two great naps. She seems to finally feel comfortable in her new "skin."  I was able to get out of the house to watch the big kids play soccer while my mom watched our Hip Goldenbaby.  I'm even getting back into my workout routine after being sick for over a week (emotionally and physically--but mostly physically--just ask the lady who moved away from me today at Caleb's soccer game while I was coughing) I'm starting to feel like myself again. I am 100% certain that it's because of the hundreds of people who are praying for us. There is such power in prayer. My dear friend sent me these Bible verses today:
Philippians 2:13
For it is God who is at work in you, both to will and to work for His good pleasure.
Proverbs 3:5-6
Trust in the LORD with all your heart, And do not lean on your own understanding. In all your ways acknowledge Him, And He will make your path straight.
I gained so much comfort and felt the strength provided in these words. I don't know why we have to go through this journey, but I am going to trust in God's plan for us and for sweet Katie.

Sleeping soundly with her nigh-nigh

Spica is a Four Letter Word

This whole experience has been a whirlwind of emotions.  It began a couple months ago when I first googled her little fat thigh.  My first emotion: fear.  Please don't let her have what Google is telling me she has.  My second emotion: devastation.  I can't believe she has it, and I can't believe she is going to be in a cast for three months.  My third emotion: Relief.  The procedure is done.  She is on the road to recovery.  My final (current) emotion: Anger/frustration/disappointment.  Angry that we have to be going through this at all, frustrated that this is our reality and I can do nothing to make time go faster, and can do nothing to help her feel more comfortable, and disappointment that she won't be able to proceed in her development like I'd imagined she would back when I first learned I was pregnant.  It's exhausting having so many emotions, and I'm trying really hard to stay positive.  I mean, the fact is, she's in the cast.  This is happening.  This is her reality.  This is our reality.  So deal with it. So, I'm dealing with it. (A lot of prayer helps to deal with it!  And there was a lot of praying going on in the middle of the night last night!  "I can do all things through Christ who strengthens me.")
The first night in the spica cast did not go well.  Poor baby girl was not comfortable. She woke up several times in the night needing to be held. To add insult to injury, she seemed to develop pink eye, and her left eye was stuck closed at about 1:30 in the morning.  A warm compress opened it right up, but I mean really, doesn't the poor girl have enough to deal with right now?! (Incidentally, breast milk DOES in fact clear up pink eye.  Thank you, Google.)
Katie did surprisingly well all day today.  She had a great time playing with her toys, and even tried to move around while on her tummy.  She obviously can't roll over, but she kept trying to pull herself up, (to no avail), and she mastered the art of turning her body around in circles.  I wouldn't be surprised if she found a way to creep while in her cast.  She'll be one buff little baby if she does figure that out! I was really pleasantly surprised by how seemingly unaffected she was today while playing.  It was great to see!
Naps were a challenge.  My mom bought a memory-foam pillow for Katie, which she seemed to enjoy. It's just still hard for her to get/stay comfortable.
My mom figured out how to make Katie fit in the high chair, so that was a bonus.  I was able to feed her carrots to her without having to seat her in my lap.  That felt great!
Bedtime tonight Katie was exhausted because she's not napping well.  It still took her a while to fall asleep, but she finally did.  She woke up a few hours later and it appears that her cold is back.  Poor kid can't catch a break right now.  On went the humidifier.  Praying hard that tonight goes on to be a better night.
Today's confession (although I don't think it's much of a surprise to anyone reading this):   I don't like the spica cast.  I hate how it feels while I hold her, I don't like changing the diapers with it (although I am becoming quite the pro, and Katie seems to like being flipped over during diaper changes), and I feel terrible that she can't sleep comfortably while wearing it.  People keep saying that it will get better, and since these people have had their own kids in spica casts, I'm going to choose to believe them. But, for right now, spica is a four letter word.  And I can't wait for the next 82 days to be behind us.
Lord, give me the strength to endure this experience. Help me to remember my bountiful blessings.  Please take care of my sweet angel tonight and help her to get a good night's sleep.  Amen.

Flowers from my mom!

Getting creative with cushions (boppy pillow!) to keep her comfortable.

Bean bags make for a cozy chair

Beautiful flowers from our dear cousin Carol and family!

Sleeping on the memory-foam pillow

The flowers with balloons that came for the kids!

 

Procedure Day

This was probably the hardest day of my life.  I wanted to just take my little girl and run away with her...but she would still have hip dysplasia if I did that, so that would be no good. 
We left for the hospital at 7:45, and the fun began.  Katie was in such good spirits, and charmed every person who met her. 
She took a nap on me while we waited for the doctor to arrive, and I just held onto those sweet little legs tightly, knowing that it would be a while before I'd be able to snuggle with them again.  It was a very emotional morning.  Dave and I took turns being the strong one.  It seemed that when one of us felt overwhelmed with emotion, the other one would take the practical "it's only a cast, it could be so much worse, this is a good thing for her" approach. 
At 10:30 the nurse carried her away...and I lost it.  I can't quite explain why a cast being placed on her little body brought on so much emotion.  It's only 3 months.  She is perfectly healthy.  It truly could be so much worse.  But yet, this has been a very emotional experience.  The thought of not getting to hold my baby close, give her a bath, or just set her down to play with her toys for three months is an emotional challenge.  The thought of the delays that she may face, not getting to watch her crawl at the same age that her brother and sister did...but I digress.
The hour passed by quickly, and soon the doctor arrived to let us know he was done.  As we walked back to the recovery room, the doctor gave us the good news that her hip was not actually completely dislocated like the x-ray had made it appear.  This is a good thing!  It was only partially dislocated, with the socket in the shape of a J opposed to a C...if that makes sense.  So, her hip has been relocated, and this time spent in the cast is supposed to turn that J into a C, and allow time for the tendons to strengthen.  The doctor seemed very optimistic.  There is a possibility of a brace for three months for Katie after the cast comes off.  We are praying for no brace. Please pray that the cast does the job. 
What followed was the most difficult and most emotional time of the entire day.
We walked toward the recovery room, but before we even arrived we could hear her.  She was beside herself.  There were two nurses trying to hold her/console her.  She was arching her back and just wailing.  It was devastating.  Then the immediate realization that I couldn't just pick her up and hold her close struck me. I didn't know how to pick her up.  She had this cast on her and I could not figure out how to manipulate it.  I finally had her in my arms, and was instantly struck with how hard the cast was, and came to terms with the fact that this was as close as I'd be able to hold her for a while.  My heart hurt at that moment. 
Holding Katie in my arms I tried to feed her.  She was starving, I knew this.  She hadn't eaten since 5:30 in the morning.  But she was still coming out of the anesthesia, and she was just out of it.  She couldn't focus on anything.  She would not feed  from me.  I was kicking myself for not bringing in a bottle for her.  Dave went out to the car to get a bottle of milk that I had pumped that morning.  In the meantime, a nurse brought some glucose water for her to drink from.  It settled her down, and then I was able to nurse her.  She also took the bottle after that.  I told you she was hungry!  I think it also brought her comfort. 
Following that, the nurses then had to tape her cast all around her diaper area.  This was to provide a water barrier in case of any accidental leaks.  Cue angry child.  This seemed to take forever.  Katie was beside herself.  Dave and I were beside ourselves.  My heart hurt some more.
Finally, that part was done.  Finally Dave was able to hold his baby girl.  Finally she was able to fall asleep.  Poor little girl was traumatized and she found comfort in her daddy.  It helped both of them--it was very traumatic for her daddy to see her so upset.  He felt very helpless at that moment.
We were able to borrow a car seat from the hospital since Katie will no longer fit in her infant carrier.  We will have the car seat for as long as we need it, and then will return it to CHOC. Katie woke up right before we left and was MUCH happier.  She was back to her old self, which was very reassuring to her mommy and daddy.  My heart started to hurt a little less.
We piled in the car and made our way home, ready (or not) to face day one of life in the spica cast.  We were faced with the fact that Katie would not fit in her exersaucer (I had hoped she would, but alas the opening is too narrow for her new froggy legs), and the fact that sleep in the crib is not going to be easy.  We experimented with pillows.  We will see how that works.
So...Day 1 is done.  Hardest day ever.  It can only get better. 

 

Daddy with his little girl

 

Daddy comforting Katie

On our way home

First nap with cast

View from the nursing mommy :-)

Trying to figure out how to play with toys now

Playing on the floor

Long day

Must remember this.

The Night Before the Closed Reduction...

It's the night before the closed reduction.
I was so strong for every moment before bedtime.  Then it was time to start the bedtime routine and it really hit me that this was happening tomorrow.  I realize that it's only 3 months and that we aren't talking about forever.  But this is my baby girl.  And she's going to be uncomfortable and everything about taking care of her is going to get a little more challenging.  Add that to working full time with three young children, and it's just a tad overwhelming.  But, it's doable.  And I will do it.  And soon it will be second nature and all will be good.
But right now, at this moment, it's hard. 
Our 6 1/2 year old has had a high fever all day today.  Our 4 year old has had a low grade fever all day today.  The 6 1/2 year old has felt so sick, but was such a trooper.  The 4 year old has been the most well behaved that I think I've ever seen him.  I am praying hard that Katie does not wake up with a fever.  If she does, then we have to postpone the procedure.  Again.  And, I really don't want to postpone it.
Please pray for the health of the big brother and sister.  Please pray for the health of Katie.  And, please pray for the anxiety that I am feeling over tomorrow.  My husband is a rock.  He's staying so strong.  I don't know how he's doing it. 
Tomorrow begins at 5:30 AM when I have to wake Katie to feed her.  She can't eat 4 hours prior to her procedure, so she needs to be done eating by 6. The procedure is at 10:15 AM.
Tomorrow begins our jouney. 

 

 Enjoying her last bath for the next three months!

 

 

 

 Enjoying her last nap without her spica cast!

 

 My motto for the next three months

 

 

 

I found these jammies in her drawer for sizes 6-9 months.  I hope they still fit her in July!

 

 

Spica Table

I've been doing a lot of research online, and it seems that these spica chairs/tables are life savers for parents with children in a spica cast.  http://www.ivyrosespicachairs.com/rockinchairs.htm  She will custom design them for you--I think we'd have to go with a Disney theme.  It can't be ordered until after her cast is put on because it will be made custom to her cast measurements. 
But with the spica table comes the answer to where to sit her for solid feedings, and where to sit her so she can play happily--she may not fit in her exersaucer after her cast is put on, and she LOVES her exersaucer. 
Now to invest in some dresses for her, and I think we'll have the answer to what to dress her in, too...
It's slowly all coming together. 

Cast eve eve

So many people have done this for me the past several days. These reassuring words and the hundreds of prayers that have been said for us have really helped to ease my mind. One more day until the big day...

Our Journey Begins

A couple months ago I noticed that our baby, Katie, had an extra fold on her left thigh.  At first I thought it was cute, but then I thought I'd google it...I love to google things.  It instantly brought up something that made my heart sink:  hip dysplasia.  Surely this could NOT be what Katie has.  This must just be a coincidence.  Then I noticed that her left leg seemed to be shorter than her right leg...again, this MUST just be in my head because I'd read about it on google.  Nothing you read on google is really accurate, right?  People always say, "Don't google.  Just call the doctor."  So...

At Katie's 4 month check up I mentioned the extra fold and the leg length to her pediatrician.  He really felt that there was nothing wrong with her hips, and thought her legs looked fine.  But, after spending an extended amount of time looking at her hips and legs, he gave us the paperwork to go get her x-rays at CHOC.  Well, I put the paperwork on the shelf and kept putting it off.  It was always in the back of my head, but I think I was scared of what it was going to show me.

At 5 months old, I finally took her to get the x-ray, because I knew that if she did have it, treating it sooner is far better than later.  A few days later we got the call from the doctor that her leg length was equal (big relief, because how do you fix that?!), but there was "questionable evidence of hip dysplasia", so we were referred to a pediatric orthopedist.  I called right away, and two days later we were sitting in the office of Dr. Weinert.  He looked at her x-rays and immediately pointed out the problem:  Katie's left hip is not sitting in the socket.  It is caught behind a tendon and can't go back into place.  He then went on talking and it was all just a blur.  She has something called DDH:  Developmental Dysplasia of the Hip, and she was born with it; it just went undetected.  Then he says that he needs to move the hip back into place (Yes!) and then will need to place a cast on her body to allow it time to heal (Noooo!!!!!)  The cast, he goes on to describe, will completely cover her left leg, go across her waist, and cover half of her right leg, just above the knee.  While she has the cast on, the tendons will be strengthening and tightening, so that they'll be able to hold the leg in the hip socket when the cast is removed...in three months.  Yes.  Three months.  Three months with a giant body cast on our sweet, precious little girl. 

So, here we are.  We've had several days to let this sink in.  We aren't excited about it.  We have a lot to figure out:  Clothing in the cast, sleep in the cast, playing in the cast, eating in the cast, bathing in the cast, and diaper changes in the cast.  The cast.  Our  5 1/2 month old baby is going to be in a cast. 

I have read so many blogs and joined a couple facebook support pages.  I have decided to blog our journey because maybe our experiences will help someone else just like others have helped me. 
Katie, our "hip" Goldenbaby, will have her closed reduction (that's the name of the procedure to move the hip back into place--closed means he doesn't have to open her up to do it) on Thursday.  It will be an outpatient procedure, but she will be going under with anesthesia.  Please keep us all in your prayers.  Here's some pictures of all of our Goldenbabies. Oh how we love them so.  They are our pride and joy.