Tuesday, July 31, 2012

The 6 Week Cast Change

Who knew a person could be so happy about their kid being in a cast?!?!

The actual cast change itself did not go so well in terms of Mackenzie's happiness.  However, we are so so so happy with the cast she came out of there with.

We had to be at the hospital for 7 am this time so didn't have to get up until 4:30 instead of 3:30 am like last time.  I got Mackenzie up, fed her one last time, loaded her up in the car, picked up her Auntie and hit the highway by 5 am.

I felt so much better about everything this time going in.  I knew where the best place to park was.  I knew where I was supposed to be going.  I knew what the procedure would be when we got there.  I also knew that my baby would for sure be coming out of there with a cast on.  I was much better prepared.

After we checked in at the Day Ward we had to wait in the waiting room for awhile before they called us back to take Mackenzie's weight (kinda silly with a huge body cast), give us some lovely striped hospital pyjamas, took her blood pressure and put the numbing cream on her hand for the IV.


She must remember being there last time.  As soon as any nurse would come near her and try to touch her she would immediately start crying and freaking out.  

After she was suited up, we headed back to the waiting room for what felt like forever.  She was chattering away, entertaining the room like usual.  But then she started to get tired and cranky.  Finally we were called back to the OR holding room (that's what I call it, it's basically just another waiting room in a sightly different area).   The surgeon came to talk to us.  He was not our usual surgeon due to holidays, OR closures, yadda yadda yadda.  I actually really liked him.  He came right over and crouched down to Mackenzie and said "hi" to her.  Then listened and answered as I pulled out my phone with my list of questions.  The anesthesiologist touched base with us.  Then a resident that would be working with the surgeon, then a nurse.  Finally we were ready to get the show on the road.  

Mackenzie would not even consider leaving with the nurse so I had to go with her into the operating room.  Of course she started crying and getting upset as soon as I laid her down on the table.  I had to hold her arms and head down as they used gas to calm her.  As soon as she relaxed they told me I could leave.  I'm happy that all went quite quickly.  It would have been hard for me to watch much longer.   

My sister and I headed across the street to pick up the necessary Tim Horton's coffee and a bagel and yogurt to sustain us until we would be able to get something else to eat.  And then we commenced to waiting some more.  I don't know why, but it felt to take forever this time.  Maybe I was expecting it to be a lot faster than last time.  It definitely wasn't.  Finally our lovely pager went off and signalled that it was time to go back to the recovery beds to see Mackenzie.  

She didn't seem to be quite as upset as she was the first time when we got back there so immediately I was hopeful.  She also had one entire leg free from any sort of cast!  I was so excited.  I scooped her up as quickly as I could despite all the cords still hanging from her arm and tried to settle her down.  I brought a bottle this time after the disaster of attempting to nurse her last time.   She would drink a little and then cry and drink a little and cry.  She was very agitated and upset.  A nurse brought a popsicle for her to try which she took a few sucks of but then just went right back to crying again.  Nothing seemed to settle her down.  Our nurse gave her a dose of Tylenol and I just walked and bounced her the best I could despite her attachment to the machines.  They wouldn't unhook them until she had successfully kept her bottle down.  

**photo of new case removed due to inappropriate comments

I was planning ahead this time after waiting for what felt like FOREVER last time for the Occupational Therapist to show up.  Before Mackenzie even went in for her procedure I asked the nurse to call OT and tell them we would be needing someone to bring up one of the Hippo carseats to get us set up.  I always felt quite uneasy about the safety of the foam rigged carseat set up we had going on with the first cast.  

A free, but scaly leg
Maybe I jumped the gun a little bit because our OT showed up while Mackenzie was still very very upset.  I was happy to see Chelsea again, she was the same one we had last time and was one of the few people in the hospital to give us any peace of mind last time.  She said with only one leg casted Mackenzie's own carseat would probably be better.   And we actually only needed a small piece of foam behind her back and one under the knee of the casted leg and we were good to go in what looked quite safe.  While Chelsea was still there figuring out her paperwork the doctor stopped by and told me that everything went really well and that her hip was stable.  Come back in 6 weeks to get the cast removed.   

We asked about the waterproof part of Mackenzie's new cast.  The doctor said you could totally submerge her in the tub or pool.  The OT suggested that she wouldn't do it herself because she would worry about not being able to get the skin completely dry under the cast.  It is nice peace of mind though to know that if she has a big mess we can wash the cast.  It is not a Gortex liner, the cotton part of the inside of the cast is more of a plasticy foam type material.  Seems like it is comfortable.  I hope she feels as comfortable as she did in the non-waterproof type.  

With all the technicalities out of the way, we now just needed to wait for Mackenzie to settle down so we could head home.  She did manage to finish a bottle and would occasionally get distracted by cords, the mirror, foam, or Aunties funny faces, and would settle down for short periods of time but she always started back up again.  Especially if a nurse tried to come anywhere near her.  Except the nice nurse who blew bubbles for her and played peek-a-boo.  She liked her!  

Auntie Julie and I pedalled her cast the best we could while I held Kenzie and Julie stuck the tape.  I think the cast was likely still a bit wet because the tape was not sticking very well at all.   Once the pedalling was done I nursed Mackenzie and she finally seemed to settle back down to her regular happy self.  We loaded her up into the car and she slept the entire drive home.  

She is so happy to have her leg free.  She kicks and kicks and kicks it all the time.  The skin is quite scaly, we will need to make sure we moisturize a lot.  I could not be happier with the cast we came away with.  She is fitting in her regular high chair (the one we bought to fit the brace), rode in a regular shopping cart.
I fit in a shopping cart again!



Sunday, July 29, 2012

Things People Say

One thing I have noticed is that people will come up to you in many different places and ask you about your kid when they are wearing a full hip spica cast.  I was somewhat prepared for this, thanks to advice from our chiropractor as well as reading some experiences on other hip baby blogs.  I am still flabbergasted that complete strangers feel the need to come up to you and ask you questions about your child.  We would never, ever, do that.  We might wonder to ourselves what happened, but would not go up to someone and ask them about it.  I supposed it is just different people's personalities.  And I don't really mind most of the time.  I feel like it is good opportunity to educate people on DDH.

Here is just a sampling of things we have heard:

In a cupcake shop - "Oh, is that for her hips?", then goes on to explain they had another regular customer who came in all the time with their child in a spica cast for her hips

In the airport sitting and waiting to board our plane - "If you dont mind my asking, what is the cast for?"

Several different waitresses in restaurants when they notice the cast -  "Oh....what happened to her legs?"

Two old ladies as we walked by them with Mackenzie in the stroller - "Oh my goodness!" -- they didn't say anything specifically to us, but the exclamation was definitely loud enough for us to hear.

A receptionist in the bank while Brice got money out of the ATM was making small talk and asked "How is she doing with the cast" this was without ever asking what it was for.  Near the end of the conversation she mentioned she knew someone else whose baby had DDH.

"What happened to her leg(s)?" is definitely the one we get the most often.

"Did she break her legs?" a lady asked me as I waited in line to pay at the grocery store.

When Mackenzie first came home with the cast Brice was feeling a bit down and a coworker noticed.  She said to him "well, you know it could be something way worse".  Which is true.  It could be.  We know that.  However, it still sucks.  And you need to be allowed to mourn.

When she was in the diaper splint I also got a few interesting ones.  I was carrying her on my hip in Costco one time and a lady asked "Is that thing so that it makes them easier to hang on to when you're carrying them?" - Nope.  But it actually did make her easier to hold onto :)

Also, at my drop in Breastfeeding group a mom asked me what it was for.  After I explained she said "oh, I thought it was for attaching toys to so they don't get away from her".  She got a serious side-eye from me for that one.  Yes, I put my daughter in this awful contraption to attach toys to the velcro.  Yeesh.


Thankfully we have yet to experience anyone being completely rude to us.  Brice and I joke that if someone said something like "what did you DO to your baby?" (which I read actually happened to someone), that we would spin a story like "she wouldn't stop crying, so we threw her down the stairs". In reality, there is no way I could pull that off with a straight face.

We do get some stares and I always watch people to see them turn and say something to the person they are with after they walk past us.  It honestly doesn't bother me as much as I thought it would.

So, if you are curious, ask away.  I will tell you our story.


Wednesday, July 25, 2012

Cast Change is Coming Up

Mackenzie's 6 week cast change appointment is coming up soon.  Exactly 6 weeks would be August 2nd.  However I hadn't heard anything yet and I called the hospital and apparently they are having some issues finding a surgeon and OR time due to people's holidays, OR closures, etc.  That does NOT make this momma happy.  When I called on Monday the secretary to our surgeon told me that she was hoping to be able to get another surgeon to do it on the 30th.

This is terrible for two reasons:

1) I would much prefer our surgeon to be the one to do the procedure.  We have talked to him a lot about how things are going to go, asked a million questions, and he is the most familiar with Mackenzie's specific situation.

2) Brice is leaving tomorrow for Costa Rica and will not get home until late the evening of the 30th.  This means that I would have to go by myself up to the hospital with Mackenzie.  Thankfully my lovely sister has agreed to come with me if that ends up being the case.


I did not hear back from the hospital yesterday so I plan on calling and harassing them this afternoon to see what the plan is.   I like to have a plan and not knowing well in advance stresses me out.

We also are not sure if we want to go with a waterproof cast as they mentioned we could have.  Unless it is equally breathable and comfortable, we would likely not go with it.  My understanding is that we obviously would still not be able to give Mackenzie a bath or anything of the sort so then I'd just be essentially keeping it dry all the time for fear of being able to dry it out after getting wet.  Also, we have been lucky enough to not have any smell issues with the cast thus far so I'm confident we can do that again for the next cast.


I am not tech-saavy enough to figure out how to put a poll in so leave us a comment below about what colour cast Mackenzie should get next.  They seem to have almost every colour under the rainbow.  Should we stick with purple?  Go with the obvious choice of pink or something entirely different?

Update:  Monday it is for the cast change!  Because that's 4 days earlier than the 6 weeks, hopefully we can lose 4 days at the end when it's time for it to come off!!!

Monday, July 23, 2012

Ivy Rose Spica Chair

The day we got home from the hospital with Mackenzie in the spica cast we went straight to work searching online to find out how to make her as comfortable as possible.  One of the things that kept coming up again and again were Ivy Rose Spica Chairs.

Stephanie makes absolutely beautiful chairs custom built to each individual kid's cast.  Every spica cast is different and may even vary from one cast to the next in the same child due to getting the hips in the most stable position for that individual.  After some conversation back and forth via email we decided on a basic "jelly-bean" chair.  While there is the option to have your chair personalized with Stephanie's beautiful paintings we were in a hurry to get the chair as soon as possible and honestly didn't have the brain power at that point to decide on a design.

We were told that there were two other chairs that she had on order to make on Monday but that our chair would be built and shipped on Wednesday.  We received it that Friday so we only went 1 week in total without having it.  And very much appreciated the rush to get it to us.

We decided on purple for the chair.  It has a painted table top and on the reverse side is chalkboard which would be lots of fun for a child a little older.  It was personalized with Mackenzie's name on the back of the chair and a nice message on the chalkboard.


The seat is cut out to accommodate a child in a spica cast so that they are able to sit upright.  There is a "seat belt" type strap to hold the child in place.


Mackenzie uses the chair for all of her meals if we are at home.  When she has finger foods I put down a plastic placemat on top of the table to protect it a bit.  She also plays in there regularly as her only other option is to be laying on the floor on her stomach.  We try to keep her off her back when she is awake because she sleeps on her back.



Her new favourite game is to take the toys from the chair and drop them over the side.  Usually she starts with the table full of toys and in about 10 minutes it is empty!



This chair has been amazing.  I don't know what we would do without it.  Thank you Stephanie for building these chairs for our Hip Kids.

I only wish we had a more portable one so we could take it with us wherever we go.

My hope is that we will be able to pass this chair on to someone else who can use it when Mackenzie is finished with it.  It was quite expensive to have it shipped up to Canada and hope that it can be used and loved by someone else after we are finished.


Friday, July 20, 2012

4 weeks down!

We are 1/3 of the way finished with the spica and only 2 weeks away from our cast change (which we still don't have an exact date for yet, I need to call the hospital).

I can't believe how quickly time has gone by.  The first day home we didn't think that we would even make it to day 2.  We have settled into our new "normal".   And it really is pretty normal.

I'm still ready for it to be September 13th.


Thursday, July 19, 2012

Leaving on a Jet Plane

We have returned from our 9 day visit with Mackenzie's Nana and Papa in Victoria.  All in all the trip was a success.  And really not that much more difficult than I think it would have been without the spica cast in tow. 



The foam padded carseat
I think I mentioned here before that she didn't fit properly in the Britax Hippo seat, the special carseat that they make for kids in spica casts.  So instead we have her regular Evenflo Triumph seat that we bought to fit her brace and it is doctored up with a bunch of foam underneath her.  We brought that with us and checked it at the main luggage check in the airport.  We also brought our Bumbleride Indie stroller with the pillow underneath her and wheeled her through the airport in that and gate checked it right at the plane.

Hanging out in the stroller waiting in line for fish and chips!

Both on the way there and the way back we were able to get the third seat in our row "blacked out" so that no one else would be sitting with us.  People are pretty accommodating when they notice that your baby is in a full body cast.  On the way home the attendant checking boarding passes and ID's even came to our seats in the waiting area and got ours from us and checked us in early so we could board the plane before they even called for pre-boarding.  How is that for service?

Of course in the airports she was up to her usual tricks of being as cute as possible and was entertaining everyone around us.  Makes you feel pretty good when despite everything people are just going on and on about how cute your child is.

The flights themselves were pretty short.  Just over an hour so it wasn't too long to try to entertain her.  On the way there she spent about 20 minutes playing with Daddy's face, and another 20 minutes shaking a wipe around.  She also like looking at and touching the TV screens in the back of the seats.  We took turns holding her.  We also laid her down for a bit on the middle seat between us but that was short lived as she couldn't see everything around here and wanted to be upright.



We definitely missed the spica chair at Nana and Papa's especially for feeding her and keeping her entertained while we ate.   But we made due.  One person would hold her while another fed her.  And Nana and Papa had enough new interesting things to explore that she seemed to be ok to just hang out and crawl around on the floor most of the time.

Checking out the seat life at the Aquarium
We went out to eat in several restaurants and just brought in her stroller and had her sit in there while we ate.  She doesn't like to be in it when it's not moving so there were a lot of snacks being given out to keep her occupied long enough to scarf down the food.  We toured around the Inner Harbor of Victoria, went to the Aquarium in Sidney, took in an Imax movie and Mackenzie even spent a full 24 hours with Nana and Papa while her mom and dad jetted on the ferry over to Seattle for a day.


For sleep she slept in a pack n play with the same adaptations as in her crib at home.  A pillow under her head/neck/upper back and a rolled up down under her knees.  She slept the best she's slept since the cast there!  Grandpa claims its because of the heavier air at sea level.  Whatever it is, I'll take it.

Passed right out!
I wish we had a quick short answer to give people when they ask about Mackenzie's cast.  Through the airports as well as on many of our outings in Victoria we were constantly being asked about it.  The quickest response I have come up with is just to say "She has hip dysplasia.  Her hip didn't develop properly so they did a procedure to put it in place and the cast is stabilizing it".

All in all the trip was a total success.  We had a great time and Mackenzie just rolled with everything like she always does.

Tuesday, July 10, 2012

Camping in the Spica

This past weekend was our first time camping with a baby and our first time camping with a baby in a spica cast.  I imagine it was a bit easier to deal with the spica part since we had no previous experience of what camping with a baby would be like.

In true Mackenzie fashion, she took it like a champ.  She loves being outside so she really enjoyed that aspect of the trip.  We brought her spica chair with us and she would eat her meals there.  Our bed doubled as a diaper changing station.  We went for lots of walks.  And, besides that she didn't ever want to go to sleep for fear of missing any of the action, she slept through the night right until 7:30 am both nights we slept out there!
Having some snacks in the spica chair

The only negatives really were that this weekend was the hottest one yet so we left a day early and on the last day spent some time in our friend's air conditioned trailer to try to avoid her getting sweaty.   There were also a ton of mosquitos so when she was outside she was either in her stroller that has the net or I doused her in lots of California Baby bug spray.
Strolling with mosquito protection
All in all I'd say the weekend was a success!  We are looking forward to hopefully doing some more camping later in the summer.

Cooling off with some water and no clothes
Some crawling time in the trailer

Thursday, July 5, 2012

2 Weeks Down!

We have survived two weeks in the cast.

Things are definitely getting better.  Better because we have an end date in sight.  Better on the sleep front (more about that to come in a later post).  Better with Mackenzie being mobile and playing independently.  Better because we got our amazingly awesome Ivy Rose Spica Chair which I will be posting about later as well.  And better because we seem to be figuring out life in this cast.  And I'll tell you what, it's really not that bad.

The face doesn't show it, but she really does love this chair.

We are heading out camping for the weekend.  Should be interesting.  Our biggest concerns will be keeping Mackenzie cool enough and keeping her clean.  We are bringing along the spica chair!  Our friends have air conditioning in their fifth wheel so she may be hanging out in there if it gets really warm.

After that we are flying to Victoria to spend some time with Mackenzie's Nana and Papa.  We are looking forward to a little bit of a parenting break as well.

9 Months old already!


Tuesday, July 3, 2012

Cast Check-in Appointment

Today we went back up to the Stollery for Mackenzie to have her follow up appointment.  We were supposed to go back after 3 weeks in the cast, but we are heading out to visiting her Grandma and Grandpa in Victoria so they said to come back a bit early.

We were dreading some news along the lines of her hip being out and the past 11 days being pointless in the cast.  Or that she was going to need to spend 6 months in the cast.  Or that she would still need surgery.  Or something else terrible since it seems like we only get bad news when we go there.

Thankfully the appointment was quite uneventful.  Like all our appointments with the orthopedic surgeon it began with a wait in the jam packed waiting room.  Then we had an x-ray.  Then back to the waiting room to wait some more before finally going back into a room to wait some more for the doctor to come in.  Mackenzie was hamming it up and entertaining the entire waiting room.  I don't know what it is about her, but she just sucks in people's attention and holds it.  Must be her cuteness!

Got a sticker from the x-ray tech.  Which I crinkled and then tried to eat and then cried when mom took it away :)

In the examination room we saw yet another resident doctor.  The third one.  Every time a different resident.  He asked us a few questions.  All things that they should know from Mackenzie's chart like when her reduction was, when she would be getting the cast off, etc.  Then he left to go get the surgeon.   I'm all for teaching and learning, but it gets to be quite frustrating.

The surgeon came in and told us that everything looked good on Mackenzie's x-ray.  Her hip is in place where it is supposed to be.  We then pulled out our extremely long list of questions and corralled him into answering them.  We got a lot of good news.  She will be in the cast for 12 weeks, but only 12 weeks.  After the 12 weeks she will go into a brace and how long she will need to wear it will depend on how well she continues to develop.  He said her case is about middle of the road of what he has seen.  Not the most severe by any stretch, but also worse than some that he sees.  He hesitated to give us the numbers for her acetabular index.  It seemed mostly to be due to the in accuracy of x-ray in infants and also that if she is at a slight angle when the x-ray is taken (and she apparently was this time) that can skew the numbers.  He mentioned the number 33, but I don't know if that was what she is at or he was just throwing it out there as an example.  I also saw the number 42 on one of her earlier x-rays they showed us.

He told us that if this closed reduction and the brace following it doesn't completely fix her hip we will just play the wait and see game until she is about 4 years old and if she needed surgery they would not do it until that point.

We go back in about 4 more weeks and she will get her cast changed.  The doctor said depending on the stability of her hip he may be able to put on a shorter cast that would not go up so high on her chest and may also only come to her knee instead of her ankles.  But they will have to check things when they get her back in the OR.  The nurse practitioner who fills out the paperwork also told us she would ask for a waterproof cast for Mackenzie for the cast change, so that's exciting!