Spica Cast Must Haves

We've done some trial and error experimenting to find just the right things needed to take care of our hippy girl.  For the first few weeks I felt like I would buy her anything to keep her happy, distracted, and comfortable.  Here's what's worked for Rilynn (age 6-7 months) so far:

Contraptions-

1.  Ivy Rose spica cast chair.  It is worth every penny!  Rilynn was so depressed and frustrated until this was delivered.  Stephanie, the owner, is amazing.  We got the jelly bean with her name on the back.  She can play with all of her toys and LOVES that she can sit up right.  She spends hours in this thing every day.  It has been a life saver.  http://ivyrosespicachairs.com/ 

2. Bouncy seat, any old bouncy seat should do.  Ri prefers ones with toys hanging down.  

3. Bean bag chair- it isn't her favorite, just because she'd rather be sitting up right, but lots of other hip kids love them.  She tolerates hers while I get ready in the morning. 

4. Keekaroo height right high chair

  

Sleeping-

1. Airconditioning- Our little one gets super hot in her cast, especially in the summer heat.

2. Memory foam pillow for head and shoulder support

3. Super soft pillow to support their back and legs.  It molds to their body and provides great support

Diapering-

1. Poise pads ultimate absorbency.  She can go 12 hours over night and still have a dry tooshy in the morning.  Maxi pads did not work for us unless we wanted to change her diaper every 2 hours.  

2. Newborn diaper- goes over the poise pad so any minor leaks leak onto the diaper instead of the cast.

3. Big diaper (we use size 5 or 6) over the whole thing.  The Honest Company is expensive, but they have super cute patterns and since most of her onesies no longer fit (even the super big sizes) and she only wears 1 big diaper a day, I justified it.  

4. blow drier- to keep skin in the area fresh.  We use it during most day time diaper changes.

5. Lots of wipes to keep the smell away.

6. Wedge pillow, I use my pregnancy wedge to prop them up under the changing pad.

7. Spatula because if you have a blow out like we did, you will be scraping poop out of every little cranny in the cast.

8. Head lamp or flash light to help find the poop in the crannies.

9. Mole skin to put on the hard and scratchy cast around the diaper area (and other areas as needed).  It is called pedaling.  You cut strips of the mole skin, and layer them around the cast.

10. Duct tape, cool designs and colors are a must, to put over the mole skin.  The mole skin adds padding, but it is not waterproof and will absorb urine if you don't tape over it.  If you get the tape far enough into the cast, it also protects the lining against leaks.

Out and about-

1. Travel booster seat- We have First Years on the go booster seat and it is fabulous.  

 

2. Stroller- she still fits in our Graco jogger.  I've heard some parents use umbrella strollers, but she doesn't fit in the one we have.  

3. Ergo baby carrier

4. Hiking back pack.  Depending on the angles, your baby might fit in one.  Rilynn LOVED it in her pink cast with only one casted leg, but once we casted both legs, she no longer fit.  

4. Car seat- Well the Britax Hippo car seat is supposed to fit most kids in the spica... but if you are like us and your child does not fit, ask about borrowing/renting a car bed.  We HATE the car bed because it gets hot, she has to lay down which she hates, and it isn't exactly convenient.  But, you can get from point A to point B.

Other-

1. Big kid leggings cut into leg warmers allow Rilynn to scoot around our hardwood floor. 

2. Cast cooler http://www.castcooler.com/ we use it at night before bed and it really helps to keep the sweat out.  

3. Patience.  This is going to be a stressful and emotional time for your child, your family, and you.  Ask for help when you need it.  You have good days and bad.  Understand that other people won't relate to what you are going through and they don't mean to offend you.  We still only have 1 hip in and we don't know when our hip journey will end, but it will.  

2 weeks of spica

Warning: this post has lots of venting.

It has been 2 weeks since our little Ri girl had her right hip open reduction and we welcomed the spica cast.  1 week to go until her left hip.  I'd love to say that it hasn't been so bad, but in all honesty it has.  I keep trying to stay positive and find things to look forward to, but it seems like every time I find a positive, Rilynn cries out of frustration or discomfort which breaks my heart.  I don't need a pitty party, if you feel bad for someone, feel bad for out poor little babe; but I think being honest is the most healthy way to answer people's questions.  

FAQ

How is she? 

Frustrated, but she is happiest if we are holding her.  She does not like to lay down for long and most of her contraptions keep her slumped over since she can't bend at the waist and she doesn't fit quite right in her high chair, modified Bumbo, or swing. I just ordered her a custom made purple spica chair (yes they have special chairs just for the cast) with her name painted on the back and I cannot wait to get it.  http://ivyrosespicachairs.com/ is where we ordered from.  I'll keep you posted on how it goes when we get it; I've heard it is a miracle chair.  We change her position every 30 minutes or so.  Don't get me wrong, she is happy, but not as happy as she was.  There are more tantrums and tears than ever and seeing her unhappy is the hardest part.

When will it be over?

We don't know.  We are hoping she is cast free mid October, but we don't have a date yet.  After that, she might be wearing a rhino cruiser which is a plastic brace over her hips that keeps them in place.  Maybe 23/7, maybe just at nights, maybe not at all and again, we don't know how long.  As far as when do we get to hear "she has healthy hips", unfortunately that's years away.  Hip dysplasia is a waiting game and I HATE waiting.  First we wait to see if her hips stayed in place after her open reductions; if they don't more surgery.  But I have a feeling that won't be necessary.  Then, we wait to see if her sockets grow around her femur head, because if they don't we go back to the OR.  Next, we wait to see if she gets AVN (avascular necrosis) which takes 6 months to a year to diagnose after being out of casts and braces.  When Rilynn is fully grown and her hips look and feel great, that's when we get the good news of healthy hips.  In the meantime, she will have x-rays every few months for a while and then every year to check everything out.  

How is she sleeping?

Horrible.  Our worst nights are when she wakes up every 30 minutes.  I've slept on her floor once already.  Our best night was only 4 times.  I have to change her diaper at least once anyways so sleeping through the night isn't realistic, but I'd love to get back to her predictable routine of a single 3 am feeding.  We don't quite know what it is that wakes her up.  It could be discomfort from being unable to change positions or it could be muscle spasms from the cast.  Many other parents have experienced the same thing.  Some kids do just fine, some kids get used to it, some kids continue like this through it all.  She is propped up with a pillow under her fitted sheet for comfort and the keep pee and poo out of the cast.  It is safe, there's not a chance in hell that she could roll over and suffocate herself.  We also have our bedroom AC unit in her bedroom to keep her cool in her hot cost.  

How do you change her diaper?

It takes time, but until yesterday I would have said it was easy.  I consider myself a clean person and since I need some positive goal to work towards in this stupid situation, I wanted to have the cleanest spica cast out there.  I was well on my way to that award and feeling pretty proud that I had mastered the diapering and then there was the incident.  Long story short it took Travis and me 50 minutes, an entire bag of Costco wipes, and a spatula to clean her up and in the end, she still kind of smells like poop.  So much for my award.  Wet diapers are easy though.  We wipe her and the inside of her cast (which is stylishly taped up with zebra print duct tape because it is easier to clean than the cast lining) turning her from front to back, blow dry her on the cool setting until everything is dry, tuck a poise pad inside the cast, add a newborn diaper tucked over the poise pad incase of leaks and to "catch" the pad if it becomes heavy, and secure both of those with a size 6 diaper over the whole thing.  Sounds complicated, not so bad as long as it's just wet.  

How are we?

Hanging in there. Some days are way better than others. I couldn't do it with out Travis, the best dad Rilynn could ask for.  Weekends are so much better with his help and presence.  It is easier to go out and do normal things with both of us and I am happier with him around. My parents took Rilynn (and Josie too) for a full 24 hours last weekend which was such a great break from the stress and allowed us some much needed Travis and Steph time which we took full advantage of on the boat, beer tasting, eating out, and sleeping.

Music is always a good distraction for Ri.  Every time I hear The Hokey Pokey on Pandora I laugh because that really is what her life seems to be all about.  We put her right hip in, then the right hip came out, we put the right hip in... Thank God the song doesn't say it comes out again.  

I really am trying to stay positive even though this whole post has been me complaining.  I try to find things to look forward to and here's what I have so far:

Holding her without a huge piece of plaster between us.  

Seeing her chunky thighs again.

Giving her a real bath.

Swim lessons when we are cast free.  Hopefully we can start in October if she doesn't have to be in a brace all day.

I'm pretty sure we are having a cast off party and Travis wants it to be Castaway themed.  

Her Halloween costume that won't include a cast.

Watching her relearn how to roll over, eventually crawl, and WALK!  If we hadn't been so lucky to find her hip dysplasia so early, we would have found out when she wasn't able to walk.  Now, although she will very likely be walking late, she will be able to walk.  

Rilynn's Story

At 6 weeks old Rilynn had an ultrasound done on her hips to check for hip dysplasia because she was breach, female, and first born.  The only risk factor she didn't have was a family history.  I honestly thought it was just routine and nothing would come of it, but driving home from the appointment I got the call that both of her hips were fully dislocated.  I didn't panic, I thought it wasn't that big of a deal.  I went home and did some research and the panic began.  I was reading horror stories of things that could happen to my baby that could possibly impact her entire life.  On Tuesday she went to the orthopedic surgeon and they put her in the Pavlik harness.  I was devastated.  It didn't turn out to be so bad; by no means was it convenient and what I wanted for her, but not horrible.  After 2 additional ultrasounds and 6 weeks later, the harness came off without success.  We went on to live life with a "normal" baby for 3 months dreading the day of her closed reduction.  It came, we had 2 hours of joy thinking her closed reduction had worked, but later that day her MRI showed that her hips had both come out again.  3 weeks later we had her first open reduction on her right hip.  So many other families have blogs that have helped us either find comfort in knowing we aren't alone and there can be a happy ending or in tips and tricks for the spica cast care.  I hope that our blog helps others out too.  

6 weeks old day 1 of Pavlik harness.

5 months old after closed reduction.

4 hours after being in the cast we found out her closed reduction failed.  Dr. Renwick removing the cast.

Just shy of 6 months old day of right hip open reduction.

Successfully have 1 hip in place.

Car bed after the Hippo car seat loaner from the hospital didn't work.