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......

Trying to Escape

Maybe I can chew my way out of this thing

Spica Cast - Day 3 - Some Emotions

We flip flop back and forth between being so relieved that Mackenzie is doing so well with the cast and being worried and scared about what the future might hold.  We have read a lot of stories where children need further treatment, often times for year and years, after the cast comes off.  However, there are also lots of stories where the problem is fixed and the child has no hip concerns at all afterwards.  I think a lot of our "worry" stems from the fact that we have never really been told or had it explained to us what the severity of Mackenzie's dysplasia is and how it compares to other cases.

Today I went out to find some onesie's for her in a larger size.  We had been just putting a t-shirt on and pulling it down over the cast but she picks at her diaper so we'd like to cover that up.  I had a bit of a moment in the store when I was looking through all the really cute summer clothes, swimsuits, etc that she won't get to wear this summer.  Then while standing in line there was a "normal" baby about her age with his mom who was waving at everyone and happy as could be.  It made me sad.  I wish my emotions would stop flip-flopping all over the place, but it is nice that I can feel happy, hopeful and optimistic with just one look at my smiling content baby.

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.  

Spica Cast - Day 1

When we got home from the hospital with Mackenzie the first thing we set to work doing was trying to figure out how to keep her comfortable and how we should position her.  We already had our bean bag chair from when she was in the brace.  We also had borrowed another bean bag chair that was actually shaped like a chair from Brice's parents.  We tried her out in that chair and gave her one of her favourite toys, a rattling monkey, and she was just as happy as could be.  I can't tell you how happy this made us.  To see her just taking everything in stride and carrying on like nothing was any different made things so much easier for us as her parents.

We built a little "nest" on the floor with a pillow and a rolled up towel and she laid there happily on her back playing with an empty water bottle from the hospital while we got supper organized for both ourselves and her.  At this point she hadn't had any solid foods since supper the night before.

After supper we put her on her stomach, again building up supports underneath her to try to minimize the pressure from the cast, and to our utter amazement she immediately started spinning herself around and trying to army crawl.  She definitely isn't as fast as she was, she has a little extra weight and a lot less help from her feet, but she can move!

We put her to bed at about 6:00 because she was just so tired out from the day and lack of napping.  After we put her down we finally had some time to process the day and everything that had occurred.  Brice had done a lot of research online reading up about the procedure and what to expect.  I on the other hand would get extremely emotional and I think I was almost in denial to some extent and I was seriously un-prepared for caring for a child in a spica cast.  We set right to work searching online for any products or information that could help us get through the next 12 weeks with a child in a spica.

The first day was emotionally more difficult than we expected.  We took some time to mourn.  We were mourning the loss of our "normal" child, the things she would miss out on being able to do this summer.  The things we will not be able to do.  We needed to take some time to feel sad about the situation.  But to be honest, as soon as we saw our baby who was just as happy and content as ever, we were instantly taken to a good place.  We can do this.  We will  get through it.  Yes, there will be some difficult moments ahead and it will not be as "easy" as caring for a child who is not in a full body cast, but we will make it.

Night 1 in the cast was honestly terrible.  Mackenzie has been sleeping through the night from about 7 pm to 7 am since she was just over 3 months old (minus a few weeks where she was teething like a mad woman) and now woke up every hour from 6 pm until 3 am.  Most of those waking she could be quieted back down with just a minute or two or reassurance from us, she was still mostly asleep and I'm guessing that she would wake up and not be able to roll over like she would normally do and then get upset.  I did end up nursing her back to sleep a couple of times that night.  She slept from 3 until about 5 am and then again from 5:30 to 8:30 before waking up happy again for the next day.

Getting the Spica

Our appointment like all of Mackenzie's specialist appointments was in Edmonton and we were scheduled first. We woke up at 3:20am to get ready, feed Mackenzie one last time and drive to Edmonton to be at the hospital for 6:00am.

Once we were registered and waiting with all the other babies that needed various treatments it started to hit home. We were called into a room where they prepped Mackenzie for her procedure of dye in the hip and possibly a tenotomy. They gave her some tylenol and placed numbing cream on a hand and foot where they would be inserting the intravenous. One benefit was is that she got to wear these super cut way too big prison looking hospital pyjamas!

Shortly after we were taken to speak with the anathesiologist. She was very nice and calm, I am sure this is by design, as it helped us immensely. She notified us that one of us could go in with Mackenzie while she went to sleep if we thought that she might have some separation anxiety or wouldn't want to go with the nurses.  After she left we waited for another few minutes before the nurses came to take Mackenzie to the operating room. They apparently were not told that one of us could go in. They asked for Mackenzie and played with her a bit (Mackenzie seemed to like them) and told us they were leaving with her (we decided this was probably best in the end). So there we were, sans our baby. What to do? Like all good Canadians we went to get a Tim Horton's coffee and bagel.

The wait surpassingly didn't seem that bad. Having confidence in your health team makes that much easier. Besides that our Doctor doesn't like to talk very much, everyone involved has been the professionals they are trained to be. While waiting they gave us a little buzzer/ringer like you get at the restaurant while waiting for your table. It would notify us when Mackenzie had woken up and we could see her. That took about an hour and half.

We could hear Mackenzie before we could see her. She was not a happy camper. Besides the drugs having a negative effect on her temper she was starving as she hadn't eaten since 4 am and it was now about 9:30.  She apparently refused the sugar water that the nurses tried to give her in recovery.  Breastfeeding became a non option when she continued to bite out of frustration, which is not something she normally does. This was really difficult for me (Lindsay).  Not only was my baby in a cast from her armpits to her ankles, I wasn't able to calm her down.  I broke down in that moment and cried along with her.  We had a brought a couple bottles for this very possibility, so we set to work warming them up and she drank from the bottle with no problems.

Soon enough she was calmed down and we were left to ponder her new accessory. It was big, covered more of her torso than we had expected, and was very unwieldy when trying to hold her.  No one really seemed to know what we should be doing, or was telling us how we should now care for our child.  The nurses in the Day Ward did not seem overly familiar with the cast and kept asking us questions.   Calls were put in for someone from the plaster room to come and finish "petaling" the cast, as well as someone from Occupational Therapy to come and go through things with us.  This resulted a lot of waiting around for people to show up and extreme frustration on our part.

Waiting around to see what comes next

Once we got Mackenzie settled down and had a few snuggles we could see that she was extremely exhausted so we laid her down on the hospital bed to have a nap while we waited around.  A nurse kept coming in to make small talk, then the woman from the plaster room arrived and told us the cast was still too wet to petal but she would show us how.  She then proceeded to demonstrate on our sleeping child, thus waking her up, but leaving us with the tape to do ourselves later.

Shortly after noon an occupational therapist came by.  She went through with us how to care for Mackenzie in her cast the best she could: briefly explained diapering, that we needed to change her position frequently, how to care for the cast, Mackenzie's skin, etc.  She looked at our carseat and we figured it would not work for us, so she sent for a Hippo car seat to be brought up.  We used a bunch of foam in the seat as Mackenzie was to small for her legs to straddle the seat but I really did not think that it seemed safe at all.  We went back to our own carseat, again with a lot of foam behind Mackenzie to make her flat in the seat, and finally decided this would be the best option.  Really, it was either that, or no seat at all.  We just needed to finish up the paperwork, pedaling the cast, nurse her one more time and then we could be on our way home.

Brice pedaling Mackenzie's cast

Most of the staff kept commenting to us how great it was to see Mackenzie in such good spirits.  We were told many times that most kids would not stop crying and were very upset for the entire time they were in the hospital after getting a spica cast.  She honestly seemed to be pretty much like her regular self except perhaps a little more on the fussy side as she still worked through the aftermath of the anesthesia.   It helped us a lot

I think we finally left the hospital around 2 pm and started our 2 hour drive home.  Mackenzie was exhausted from the day so mostly slept in the car.  I rode in the back seat with her to try to calm her down when she would wake up and cry.

In the car seat driving home

Life Without the Brace

Mackenzie was loving her new found freedom of not having to wear the brace.  Within a few days she started really army crawling her way around.   Eventually she started getting up on her hands and knees and rocking but whenever she had somewhere to go she pulled with her arms and pushed off her toes army style.

We went swimming a lot as we weren't able to do it with the brace and definitely would not be able to with the spica cast, we went for lots of long walks and just got out and about as much as possible.  We also made sure for her to wear all her cute summer outfits that she wouldn't be able to wear with the cast :)

We got the call the closed reduction would be done on June 21st only just over 2 weeks from our last appointment as someone had cancelled and they had an earlier opening. This made it real. It really meant Mackenzie would be in a Spica cast.

We hugged her and snuggled her as much as she would let us prior to the appointment. She was so happy to be free and moving about, it broke our heart that she had no idea what was coming up and that that freedom would be taken away.

The 8 Week Check-In Appointment

After 8 weeks in the Diaper Splint we headed back up to the city to find out what was in store for Mackenzie.  We were trying to be optimistic, yet didn't want to get our hopes up too high and figured she'd likely have to spend a bit more time in the brace.  We hoped maybe it wouldn't be a full 24 hours a day and we could start weaning her off of it.

Again, our appointment started with them taking a new x-ray of her hips.  We then met with the OT who checked her out and looked at the brace and decided she had grown so much that they would definitely need to make her a new one if she needed it still.

Again we first saw a resident doctor, a different one this time, who checked Mackenzie over rotating her hips checking length of her legs, etc.  He seemed quite optimistic, said he didn't feel much.  We requested that we would like to see her more recent x-ray which is said was no problem and he went to get the Doctor for us.  When the Doctor came in he again, also examined Mackenzie.  He has looked at the x-rays as well.  This is when we got the news that we weren't expecting at all.

The brace had done nothing to help her hip.  Nothing at all in 8 weeks.  He started to explain that he would need to do a procedure called a closed reduction where they put the patient to sleep and under live x-ray with a dye injected in her hip to visualize it better they would attempt to manipulate the hip into the proper placement.  When he said that she would need to be in a Spica Cast after the procedure for 12 weeks my tears started flowing and I had a hard time focusing on anything else he was saying.  He did tell us that if the closed reduction was not successful they would leave her for the time being and they would do a surgical open reduction after she was over a year old.  They would try to get her in as soon as possible for the closed reduction, within three weeks, and told us that she did not need to wear the brace any longer since it wasn't helping at all anyway.

A Nurse Practitioner came in to help us fill out the paperwork that was needed for the procedure, explained things a little more for us, told us someone would call us with a date for the procedure and sent us on our way.