The Cast is Off!

On September 4th, 10 weeks and 5 days after she had her first cast put on following a closed reduction, our baby became cast free!

Our doctor agreed to seeing us one week earlier than originally planned due to some of our concerns with Mackenzie's cast.  We weren't 100% sure whether or not they were going to take the cast off at that appointment or make us wait until the following week when the cast removal was scheduled.

It never fails that our appointments seem to fall at a time where Mackenzie has missed a nap or could/should have napped in the car, but didn't.  So, she ends up being a cranky mess on top of everything else that is going on.  Yesterday was no exception.

As with all of our appointments we started out with an x-ray.  The x-ray technician this time was less than friendly.  She was trying to get me to hold Mackenzie's free leg in the same position as her casted leg.  Well, at this stage in the game Mackenzie wants nothing to do with laying on examination tables or dealing with medical professionals as a whole.  She was crying and only one parent is allowed in for the x-ray so I was having to try to hold her down and hold her still.  I told Brice that I never want to have to be the one to do that again.  I hate having to try to restrain her and she doesn't understand what is going on and she is scared.  I don't think they got a very good picture because I couldn't hold her totally still while keeping her hands out of the way and her leg elevated how the technician wanted it.

After the x-ray it was back to the waiting room again. Thankfully our appointment was pretty early in the morning so we didn't have to wait too long before we got called back to see the doctor.

You may remember that our doctor was not the one to do this cast.  He was on holidays when it needed to be changed so one of his colleagues did it.  Our regular doctor didn't seem to care for the cast structure or positioning right from the get go, so because of our other concerns with the cast possibly shifting and the leg circulation when Mackenzie would sit on it, he agreed to take it off at this appointment. 

Enter the "cast technitian".  They needed to make cuts along both lengths of the leg as well as both sides of the torso in order to remove the cast.  The "saw" is very noisy so we were given ear protection for both Mackenzie and ourselves.  As soon as she had the ear pieces on she was already upset.  Then when the saw turned on she got more upset.  Then when the saw was actually cutting the cast she was freaking out and crying so hard and trying to get away.  Both of us had to hold her down and move her around so the technitian could make all the cuts.  After that he had to use scissors to cut out the inside cotton part of the cast.  The whole thing maybe took 5 minutes, but it felt like an eternity.  It is a terrible feeling to have to hold your child down while they are so upset and not being able to explain to them what is going on.

We were given some clothes and towels to give her a quick wipe down.  She was stinky!!!

The doctor came back in and told us he wanted to put Mackenzie back in a diaper splint like she had before we did the closed reduction.  He wants her to wear it for 6 weeks full time (except for diaper changes and baths) and then we will re-evaluate.  He tried to examine her once the cast came off, but she was so worked up and upset that it wasn't really possible.  We asked about a different kind of brace as we have never seen any other DDH patients with these splints, but he said that those were for longer term treatment, or something along those lines that didn't make much sense to us.  As we find every time we go there, he didn't do much explaining and was heading out the door as fast as he could.

Cast free, pretty tired, and waiting for the diaper splint to be made.

So, with our very tired, and now very upset child, we headed down to the rehabilitation centre in the hospital to get fitted for the brace by an occupational therapist.  The process seemed to take forever but finally we were on our way with the brace in hand.

Mackenzie doesn't fit in her carseat with the brace, so she got to be totally free for the drive home and slept pretty much the entire way.

I'll update tomorrow with how the first few days have been going in the brace/diaper splint.......it's been a bit rough.

Change of Plans

It looks like Mackenzie's cast might be coming off sooner than we thought.

Last night Brice was playing with Mackenzie on the floor and when he picked her up he thought he heard/felt a "pop".  He wasn't sure what it was though.  Maybe her cast shifting positions slightly?  Then, a little later in the evening Mackenzie was in her sitting position that we can't keep her out of now and I noticed that her leg was turning purple.  She must have been cutting off circulation or something of that sort due to the pressure the cast was putting on her thigh.  Again, not quite sure what caused it.  We monitored it quite closely and it didn't seem to be ongoing.  Also, she was quite cranky yesterday.  That could have been attributed to quite a few things: she is teething again, she has cut out one of her daily naps now that we are back at work and she is doing to the babysitters, and also, she is in a full body cast.  We feel so conflicted because any time she is unhappy we always wonder "does it have to do with the cast?".

So, last night we sent off an email to our surgeon's amazing secretary and asked her what we should do.  He only sees patients in the clinic on Tuesdays.  So with this being a long weekend, we would have to arrange an appointment for this coming Tuesday with very short notice.  She called me this afternoon and said she had shown him our email with our concerns (and a lovely picture of how Mackenzie likes to sit).  And he decided that he probably should see us sooner rather than later.

So now, instead of September 11th, we will be going up this Tuesday, September 4th.  We were told that they will do an x-ray first, but since the cast is supposed to be removed the following week they will likely just take it off while we are up there.

We are excited that the cast is most likely coming off a week early, but also worried and hope nothing major is going on and everything will be alright and there will be no negative consequences to taking the cast off earlier than projected.

Sleep and the Spica Cast

When we left the hospital with Mackenzie in her first cast we were told that we should be waking her up every 4 hours or so to check her diaper and shift her position.  I asked around on a few different DDH forums and the consensus seemed to be "don't wake a sleeping baby!".  If you remember from the post when we first got home, that first night it was no problem.  She wasn't doing much sleeping anyway.  However, after the first week or two she thankfully settled back into her 12 hour nights.  We have never woken her up at night.  We have only had one diaper leak at night and it was nothing too major, and no issues with soreness from the cast.  We figure if she had a pressure point bothering her, or something of that sort, she would wake up anyway.

Sleeping in the crib

Here is how we position her for sleep:  In her crib we propped up one side of her mattress with a few rolled up towels.  This was just to give it a slight angle so that if she did have a diaper leak at night it would drain down instead of up into the cast.  A regular sized pillow was put in her crib for her to lay on from her lower back up.  And a rolled up towel was placed for support under her knees.

Towels under the edge of the mattress

Just a very slight incline at the left

Pillow and towel placment

Sleeping with Daddy.  All you need is a pillow and a rolled up towel.

Sleeping in the Pack n Play at Nana and Papa's - same set up with the pillow and towel

This arrangement has worked for us no matter where we are.  We set up the pillow and towel in the pack n play, or on the bed in our trailer when camping.  The nice thing is everyone always has a pillow and a towel you can use for her to sleep.

Cast Check - 9 weeks down, 3 to go!

We went up to Edmonton yesterday for our cast check for this second cast.  We jokingly, but sorta seriously, asked the doctor to take the cast off.  He said no dice though, needs to stay on for another 3 weeks to make sure it can work all of its magic.  It will definitely be coming off on September 11th.  The countdown is on.

The visit was kind of frustrating.  Everything was fine with the cast.  Therefore, we had to drive an hour and a half to Edmonton and we ended up waiting for over 2 hours in the waiting room before we saw the doctor for about a minute and 37 seconds.

He said "the x-ray looks weird",  due to the angle she was laying for it with the cast.   He also told us that she will most likely be put back in one of the diaper splints after the cast comes off.  He wont know for sure, or how many hours a day that will be for until he gets a good x-ray after the cast is removed.  I also asked about Physiotherapy and his exact words were "I don't want anyone touching her".  Nice.  He later clarified that he meant until he is finished his treatment.

We asked to see the most recent x-ray, as we always do.  And he was flipping through a few of the older ones and made the comment "this is where it was dislocated".  I was confused because we were never told it was dislocating.  In fact, on our first visit I distinctly remember him saying "It's not a normal hip, it's not dislocating, but it's not normal".

So, three more weeks to go and we will be done with this cast.  I just pray that this will be the end of the journey for us and no further surgeries will be needed later.

Her new favorite thing to do is to sit like this. Can that be comfortable?!?!?

Scowl face!  This means "I'm having fun" 

How I Feel About This Waterproof Cast

I HATE it.

I asked the surgeon before she went in for the cast change about the waterproof cast and specifically whether it was equally as comfortable.  He assured me it was and he recommended it.  In fact, he said, you can completely submerge your child in a bath or the pool.  Sounds great!

When Mackenzie came out of the O.R. she was upset pretty much until we left.  I was so happy to see that free leg and I didn't really care about much else besides comforting and consoling Mackenzie.  We rushed to get the cast pedalled despite the annoyance that the tape was not sticking at all.  Later I realized that the cast was likely still a bit wet however the nurse was the one telling us to pedal it, so we did.  I just wanted to get out of there.

When the Occupational Therapist came to check out our carseat situation I also asked her about the waterproof cast and any special care instructions that would be different than her first cast.  She said that while you "can" get the kids wet with no damage to the cast she would not recommend submerging them in water.  The concern would be whether or not the cast would fully dry out on the inside.  This was a concern I also had in the back of my mind so we made the decision that we wouldn't do anything differently than we did when she did not have a waterproof cast.  Sponge baths will continue for another 6 weeks.

The main difference with the waterproof cast is the inside and"stuffing" material of the cast.  Unfortunately it is really hard to get a photograph of the inside of the cast.  In her first cast the inside was cotton and it seemed to be a solid piece of cotton with a layer of "stuffing" between that and the fiberglass.  This cast the "stuffing" is almost a plasticy mesh type material that is long strips wrapped around.  This makes the pedalling terrible because the tape will just stick to one of the layers or pieces of this mesh and that can be moved quite easily.  Pieces end up moving, coming up out of the cast, and worst of all, allowing the tape to stick to her poor skin.

This shows how the tape and stuffing come out the top of the cast.

The inside layers stick to the skin and pull away from the fiberglass

We have also been having a more difficult time with diapering in this cast.  It's not the best for shoving the smaller diaper inside as it is not as loose as the first cast in that area.  We can just fit a size 3 or 4 (depending on type) around the whole outside but it tends to shift down off the cast onto the leg that is free and then can gap and we have had a few pee accidents leaking out of the cast.  At night we do the double diaper, but during the day we just make sure to change her frequently and adjust the diaper if it seems to be shifting.  We had a large blow out after she had been in the carseat and poop got up the back of her cast.  We cleaned it out the best we could and ended up cutting out part of the inside piece that we couldn't get clean and then just taping it back into place.  We are doing the best we can.

At the end of the day, I definitely would NOT go for the waterproof cast again if given a choice.  Given the fact that we still wouldn't get her wet.  There are no plus sides to the cast and a plethora of negatives.

Look What I Can Do!

Sorry for the bad phone quality, but I didn't have time to grab our camera.  Mackenzie has started pulling herself up on the stairs, window sill, whatever she can get her hands on. Then she cries because she gets sort of stuck in that position and can't get back down.  Crazy girl!  

What About Work?

This question came up on the DDH Facebook group I am a part of so I thought it might be worth while to do a quick post about what we are doing.

We are so blessed that I am still on maternity leave (until August 29th) and because Brice is also a teacher he only had three more days left of work before summer break when Mackenzie got her first cast.  Therefore we were both able to be home with her for two whole months during the cast time.  We will both be back at work though at the beginning of the new school year.  When we found out she would be getting the cast, we immediately started planning and trying to figure out what we would do when the time came to go back to work.

A few of our options were:

• take an unpaid leave from work so one of us could stay home with her until the cast came off
• have Brice's mom come out and stay with us for the few weeks in September that Mackenzie will still have the cast (she is a retired school teacher); or,
• send her to the dayhome that we had lined up already

It took Mackenzie probably about a week and a half to two weeks to get used to being in the cast.  At 9 months old she adapted incredibly well.  I doubt she even remembers what it is like to not be restricted by the cast.  After that week and a half to two weeks she got back to sleeping well and being back to her regular happy self.  If you are a parent who is not able to take an extended leave from work to care for your child in a spica I would suggest trying to take at least two weeks when they first get the cast.  

Especially now that Mackenzie only has one leg casted, but even before, we were so impressed with how well she was doing.  Diaper changes were not nearly the nightmare we expected.  She crawls around and plays independently.  She is honestly just her regular happy self.  This made our decision to both go back to work much easier.  

The original plan was to have Mackenzie's Grandma come and stay with us for the 2-3 weeks she would still be in the cast.  After that she would go to the dayhome.  However, with the ease of caring for her in the cast, we decided to leave the decision up to her day home provider about whether she would like her to start there from the get go.  She seemed to be quite willing to take her despite the cast.  We went and visited her the other day so that she could see what the cast looked like and how Mackenzie adapted with it.  She had done a bunch of research online as well, and like us was impressed with how well Mackenzie was doing.  She told us she would be happy to take her.  In fact, she seems more concerned with dealing with Mackenzie's dairy allergy than the cast.

So, rather than have Mackenzie have to make two transitions, first with Grandma and then to the day home, we decided to go straight to the day home.  We are hoping for the best come September!

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!

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.

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.

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.

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

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!

One week down, 11(ish) to go

We have survived the first week of Mackenzie being in the spica cast.  Here are some random thoughts and tidbits from the week:

• Each day seems to take forever, but the week went by *fairly* quickly.

• We don't actually know for sure how long she will have to be in the cast so the count down is a little anti-climactic.  We also have not heard back regarding any of our questions for the surgeon. 

• She has started rubbing the hair off the back of her head like a newborn baby because instead of being able to roll over in her sleep she turns her head back and forth, back and forth.  This is exacerbated when she is crying.  I hope she doesn't rub it totally bald because she is already a little lacking in the hair department!

• It's really difficult because she can't tell you what is the matter.  When she cries I never know if she is uncomfortable, the cast is bothering her, or if it is just something "regular".  She seems to be a lot more cranky and irritable than pre-spica.  

• Sleep has been terrible!  She has always been a great sleeper (12 hours through the night since about 3 months old minus a few weeks during teething) and now she is waking up several times in the night.  Often she will be awake for an hour and a half at a time in the middle of the night and nothing seems to help unless one of us just holds her and lets her "play".   When I put her down for naps she literally clings to me and starts crying as soon as she sees the crib.  

• Yesterday I finally went through her closet and dresser and had to pack up so many cute clothes that have never been worn and she will never get to wear.

• Snuggle your babies and don't ever take that for granted.  She is really difficult to hold, let alone cuddle well.  She has never really been one for cuddling, but now its not even an option.  Her cast comes up so high that I can't even rub her back to try to comfort her when she is upset.  

• Her resilience is astounding.  She is pulling herself all over the house.  Brice is trying to "teach" her how to roll over and she did it once on her own on the third day in the cast.

• In a very scientific experiment I weighed myself with and without her and she is about 20 pounds with the cast which is only 2 pounds heavier than pre-cast.  She feels about 10 pounds heavier.

• Thankfully she loves the stroller so when she is especially cranky and refusing to sleep I just throw gentle place her in the stroller and go for a walk.  I'm dreading the hotter summer days where this won't be an option.

• It's tough to work through the feelings (this is Brice writing). The lack of sleep and her crankiness is getting to me. As I was telling coworkers, I understand some kids don't sleep well at  night, I could live with that or I could live with the Spica (at least I tell myself I could), but both is just unruly. I blame the cast for everything. If she's cranky, it's the cast, if she wakes up, it's the cast, if she cries, if we can't go for a walk because it's hot, if I can 't go for a beer after work, if I have a bad day, etc, it's the CAST. One week down. 

Diapering in the Spica Cast

Diapering has not been nearly the ordeal that we thought it was going to be.  We had read a lot of stories about people and their struggles with diapering and keeping the cast clean.

We are fortunate in that I think our "diaper hole" in the cast is much larger than a lot of other ones we have seen.  Mackenzie was wearing a size 3 diaper before the cast and we are able to fit a size three diaper on her pushing it up into the cast in the front and the back.


**I have taken off the pictures showing what Mackenzie's cast looked like due to inappropriate comments being made.  If you have questions or would like to get more info please let a comment with an email address I can contact you. 

We are using either the Pamper's Baby Dry diapers in size three or Pamper's Swaddlers in size 2 inside the cast.  I also had Pamper's Cruisers in size three on hand, but they are bigger than the Baby Dry ones in the same size for some reason and are more difficult to fit inside the cast - as I learned the hard way during a mid-night diaper change.

I cut (or rip) off the tabs of the diaper that goes inside the cast because they are unnecessary and I feel like they are adding bulk and could get scratchy for Mackenzie inside the cast.  I usually start by pushing the top of the diaper up in the front of the cast.

Step 1: Push the top front of the diaper up into the cast

Then I pull it around and sometimes I can get the back tucked in by just turning her slightly on her side and without rolling her over.  Otherwise I roll her over onto her stomach so that her weight shifts off of the back of the cast and then push the back side of the diaper up in to the back of her cast.

Roll over and do any extra wiping that may be required

Step 2: Push up the diaper into the back of the cast.

We then layer a larger diaper (size 5 is what they gave us in the hospital and that seems to be working well) over the tucked diaper and do it up on top of the cast.  I make sure the "ruffles" of the diaper are next to her skin and not resting on the cast for extra leak catching protection.  We reuse the large diaper for as long as it holds up and doesn't get spoiled, usually one whole day.

As you can see in the pictures we have a folded up towel on top of her change pad to help support her head and neck when she is on her back on it.  Very high tech!

Dad practicing his "spica tricks",  but a good view of the larger diaper

We are only about a week in but so far we have had no leaks into the cast and no accidents at all.  Again, I think we are probably lucky in that Mackenzie's bowl movements tend to be quite solid.  Pre-cast we never had the dreaded "poo-spolosions" that a lot of parents talk about.  Our hope is that we don't start now!   Mackenzie is also not a heavy wetter.  We have never had any issues with leaking though a diaper at night and that continues to be true.  When she does wake up in the night I will occasionally change her diaper if it needs it, but quite often she goes 12 hours overnight in the same diaper with no problems.

Spica Cast - Day 5

Yesterday was our first day on our own as Brice had to go back to work.  Lucky for us he is a teacher (so am I, but I am still on maternity leave) so we will both be home for all of July and August.   We just have to get through this week.

Mackenzie decided that napping wasn't for her and was quite fussy.  She always wanted to be held or directly played with.  She would also start crying as soon as I went in her room and got even close to putting her down in her crib.  I found myself constantly wondering if it was just "regular baby stuff" or if it had something to do with the cast.

We tried to play outside on the deck for a little while but shortly after getting out there I felt a few sprinkles of rain and that's no good for a baby in a cast!

She seems to be quite happy in the stroller so we went for a walk in the morning and again in the afternoon we walked down to pick up Daddy from work.  The day had been overcast all day and then shortly after we headed out the sun started shining.  It got hot fast.  By the time we got home Mackenzie had fallen asleep, but was drenched in sweat.  I felt so terrible.  We are really going to have to be diligent about not letting her get too sweaty in the cast.   Sorry friends, I'm going to be wishing for cool weather this summer.

Our Regular Stroller - Bumbleride Indie - works great

Just a pillow behind the back and we are good to go!

In the afternoon I did manage to get some smiles and giggles out of her.  It's amazing how that giggle and those teeth can just brighten up my day.

 I think we must have lucked out on the second night where she slept straight through.  Since then she has been waking up a few times a night.  Last night she was awake from about 4 until 5:30.  Again, not really sure what is going on.  We let her fuss for a bit, when she started crying harder I nursed her, but same thing that she would start crying so hard when we would put her back in her crib.  Finally Brice went down and just sat beside her crib for about a half an hour until she fell asleep.

Today I'm thinking about venturing out of the house - maybe make a Superstore run to pick up a few things.  I'm just not sure if I'm ready for all the stares yet......

Spica Cast - Day 2

The first full day home in the cast!

Despite the terrible night we had she woke up happy and content to play and seems like her regular happy self, which is so great to see.

Again, we set right to work finding products and advice to help make Mackenzie more comfortable.  We have ordered her a chair from IvyRose Spica Chairs and it should be shipped sometime next week. Mackenzie doesn't fit in the high chair we purchased when she was in the brace, so she doesn't have a lot of options for sitting upright.  Right now, one of us holds her on our knee while the other feeds her for meal times.  This chair will hopefully be used as a highchair as well as a play area for her.

We also ordered a Cast Cooler after seeing it mentioned several times by other "hip" parents online.  I think one of our biggest issues is going to be trying to keep Mackenzie cool this summer while in a full body cast.  Hopefully this will help provide some relief for her.

Brice went out and bought a ride-on trike for Mackenzie at Babies R Us, the 3 in 1 Smart Trike.   She can be strapped into it and seems to be very secure and allows her to be upright.

We also set up a "play gym" system with her bean bag chair and Baby Einstein play mat.

But she is also perfectly happy to just scoot around on the floor and play with her toys:

We took the legs off her Activity Table and she still loves it!

Army crawling around

We felt like we had so many questions that remained unanswered from when we were in the hospital.  So when we phoned to book the follow-up appointment that will be in a couple weeks, I mentioned that to the Doctors secretary.  She is so amazing and gave us a few options.  We could tell her the questions and she would ask the Dr and get back to us.  We could email her them and she would email us back with his answers and we could also call his Nurse Practitioner to ask her the questions as well.  We decided to email her the questions so we are waiting to hear back now.  

We also went for a walk with the InStep Bike Trailer that also converts to a stroller.  It only required the slight modification of adding a pillow for support.  For us this is great because it allows us to get out of the house when it is cool enough outside that we don't have to worry about Mackenzie getting too sweaty in her cast.  

Night #2 she slept straight through the night without waking up at all!  We had set our alarm to change her position half way through the night but either it didn't go off or we were so exhausted from the previous couple days that we didn't hear it.  Her diaper wasn't too wet so all was well when she woke up, happy again, in the morning.