Friday, November 4, 2011

Ilfeld Brace

Addison has had her cast off now for about a month and  a half and she is doing just great. She has adjusted well to the Ilfeld Brace but I have to admit, because we have control over how long she wears the brace we are not exactly vigilant with ensuring she is in it 20 hours a day. When your little one has had to endure two surgeries and wear a body cast for 3 months of her new little life, you hate to confine them in anything longer than you have to.
Just hanging out, wearing her brace
Just after her brace came off we took her on her first family vacation to Park City, UT. She did so good on the long car journey down and back, we were so impressed with how easily she traveled. When we got to our resort in Park City we made the most of the pool as we had not been able to give her a bath let alone take her swimming during the hot summer months, so we spent as much time the pool with her as we could...and she loved it!

Our little bathing beauty


We just love watching her kick her little legs!

We have been giving her lots of floor time in hopes that it will stimulate her stalled motor skill development. Most of the time we give her brace-free floor time but on the occasion that we do put her down on the floor in her brace, little monkey that she is, she figures out a way to roll (very awkwardly) with the brace on! It doesn't look like it would be all that fun to me to try and move around in that brace, so most of the time she is given her floor play time without her brace. She is now 8 months old and has really fine tuned her rolling skills. She moves around the floor by rolling herself to where she wants to get. When she is rolling around on the floor, you can see in her eyes that she really would love to crawl, she just can't figure out how to tell her body how to do that yet! Sometimes she gets frustrated when she is trying to reach a certain toy or grab the cat's tail and can't quite reach it, and can't quite figure out how to get to where she needs to be in order to grab whatever she wants...but we know she'll get there soon enough!

"I really really wish I could crawl!"


Thankfully her brace works in her stroller too

Just over a week ago, her grandma taught her how to sit on her own and she was pretty proud of herself indeed with that little development! Now she can't get enough of floor time, showing off to everyone her mad sitting skills. Her dad was a little melancholy about her new found sitting skills, it is just one more milestone that indicates to us she is growing up and will soon no longer be our little squishy baby. I can't imagine how he is going to feel when she actually does start crawling!

Look what I can do Mom! I'm pretty smart!

Eventhough we are supposed to have her in her brace most of the time, we don't...but we take extra care to ensure that she is as frog-legged as possible at all times! Poor thing probably wonders why we are forever adjusting the angles of her legs! Thankfully she sleeps well in her brace, and has come to see it as part of her sleepy time routine, as soon as the brace goes on she knows she is in for a nap or bedtime, it is kind of funny how she reacts by rolling to her side and putting her thumb in her mouth, preparing herself for sleep!

Getting some snuggles with daddy before bedtime

We don't have another appointment with her orthopedic surgeon until mid-December, that will be 3 months post- cast removal and we are not sure what will happen at that appointment. I suspect they will want to check the angles of her legs, etc. and ensure all is looking good...but whether that will entail an MRI or an x-ray we are not too sure. Our ortho has indicated that she will likely be in the brace until her first birthday...so here is hoping that timeline works out and after her first birthday she will be free.

Sunday, September 25, 2011

Moving Right Along

It's been almost a week since Addie had her cast removed and she is doing so great. I was a little bit worried when I first saw the Ilfeld brace as it looks pretty silly and I wondered how anyone could stand wearing such a contraption for 20 hours a day. Needless to say our little girl has just taken it all in stride, just like everything else she has had to endure these last months.
Our brave little girl enjoying some tummy time, cast and brace free

As luck would have it, the week Addie got her cast off has been great due to the Indian summer we are experiencing. So our little girl has finally got to enjoy some sunshine! With the 4 hours of free time we have each day from the brace we try to give Addie as much play time as we can. When we lay her on the floor without her brace she just has a great time kicking away and trying to roll herself around. She is doing great to lay on her tummy and keep her head up, she loves to roll from her tummy to her back and back onto her side trying to reach the toys spread out around her. She plays like that as long as we let her, and she just has a ball.

Just loving her tummy time

We have also been giving her baths, which is such a treat for her dad and I to watch her splash around in the tub. We were so happy to find that she still loved her bathtime, it had been so long since she had had a bath we were not too sure how she would handle that, but sure enough, as soon as we put her in the tub she was splashing and giggling like crazy, just having the best time.

Splish splash Addie still loves her bath
We are still a bit nervous with her legs and hips when she is out of the brace, afraid of dislodging them and having to go through the whole operation and casting ordeal again. I think that is probably how parents of all spica kids feel. Addie's dad is going to call the surgeon this week to just double and triple check that we don't need to be concerned about this. We have kept her out of her baby carrier and the jolly jumper until we talk more with the surgeon...but all in all she is doing great.
So happy to kick those little legs, finally!

Wednesday, September 21, 2011

Cast Free!

All smiles the last morning of her spica-dom
Yesterday Addison went in to have her cast removed. Her dad and I were very much looking forward to this day, but we were also very anxious as we did not know what to expect at all. We arrived at the Stollery Children's Hospital bright and early, and the x-ray technician came out to tell us that he wasn't sure whether they were cutting the cast off prior to x-ray or leaving it on...he was just waiting on word from Dr. Dulai. About 20 minutes later they ushered us into an exam room, handed Addison and I a pair of ear muff type ear protectors and asked us to put them on.

Not sure who decided these were baby size ear protection!
They explained they would be taking the cast off and then doing an x-ray to determine next steps with respect to her hips. Addie's dad and I tried to keep the ear muffs on her, but she was not a fan of them...and as soon as they fired up the cast saw, the tears began rolling down her face.

Just after the cast had been cut with a saw, Addie was inconsolable
For those of you not familiar with cast removal, our cast was removed with a hand-held cast cutting saw that was very very loud and as they proceeded to use it to cut her cast off, it vibrated the cast a lot, which is what I think scared her the most. Once they have cut through the cast, they then take a large pair of snippers, crack the cast open and cut away the soft cotton lining. The whole cast cutting procedure probably lasted a total of 5 minutes but it felt like 5 hours because Addison was so upset by it. She was crying so furiously that her little face turned 7 shades of purple and crocodile tears were streaming down her little face. She was completely terrified.

Cutting through the thick cotton lining, trying to comfort her
Once the cast had  been cut through, they wrapped it back on her with a tensor bandage to hold it in place until it was time for the x-ray. So they sent us back out to the waiting room where we desperately tried to take Addison's mind off of the whole thing. Once back in the waiting room, she calmed down quite a bit, her face was all blotchy from crying her heart out...and she was whimpering a little.

Phew! We were both glad that was over
About 5 minutes later they ushered us into the x-ray room. Only 1 person was allowed to accompany her, so I went with her this time leaving her dad and grandma to wait out in the waiting room. They laid her down on the x-ray table and slowly began to remove the pieces of the cast. Having been in that tight fitting cast for 12 weeks, this made Addison a bit uncertain and she began to cry again. The tech asked me to put on the lead apron and hold her in place for the x-ray. She was x-rayed on her back with her legs splayed out in frog position. All in all this was much easier on her than the cast cutting itself, but she was still very scared and uncertain what all this was about. Once the x-ray had been completed, we were asked to wait back in the waiting room again, and then shortly after that were brought into another exam room and asked to wait for the doctor who would share with us the results of the x-ray. At this point, Addison was clinging to me for dear life in desperate need of some comforting. About 15 minutes later, a resident popped in and asked to examine Addison. She laid her down on the exam table and did a quick hip check. She said that Addie's hips felt good, but that the surgeon would be in soon to let us know what the x-ray looked like. When Dr. Dulai arrived, she said that the x-ray looked great and that she was very pleased. She gave us a prescription for the brace she would need to wear and indicated that in most cases what they do is double the age they were when they went into the cast to determine the duration for wearing the brace. Because Addison was about 3 months old when she went into the cast, Dr. Dulai indicated that she may be in the brace for another six months but she said that she hoped to have her out of it in time for her first birthday (hooray!).

After the x-ray we enjoyed watching her kick, kick, kick those newly free legs!
We laid Addie down on the table and put her in her first pair of pants since she was first cast so many months ago, and it was a great feeling to see and cuddle her little legs. Suprisingly her legs were in great shape too, they didn't look terribly atrophied and only had a little bit of dry skin - much better than what we had anticipated! What we were also able to notice was how tall she had gotten while in that cast. She is long and lean just like her daddy (another good thing). She is still wearing the size 2 diapers she wore when she first went into the cast, they are a little short so we still need to double diaper her with the 3 over top just to hold everything in. Her legs are so skinny that the size 3 diaper is just to big at the leg opening. Our girl is going to be a supermodel for sure with her build ;-)

Thank goodness I am all done here grandma!
After all that she was so tired out that we took her home for her first cast free nap in three months. It was great to lay her down in her crib and let her sleep comfortably with no need for extra padding or wedging or anything - something we are not used to at all! When she awoke we passed her from grandma to daddy to me for extra snuggles before heading out to get her brace fitted.

First cast-free nap in 3 months was GOOD!
When we arrived at the shop of the fellow who was going to build her brace, he knew as soon as we walked in that we had been sent for an Ilfeld brace, I guess Dr. Dulai sent us to the right man for the job! He took a few quick measurements and sent us on our way, telling us to return in about an hour and a half. When we returned he had the brace ready to go. Addison was not impressed when we laid her into her new brace, but we suspect that had more to do with the fact that another man was manhandling her and she had had her fill of strange men for the day! When he tried to do up the brace around her midsection he quickly realized he had made it too large for our skinny little girl...so off he went to adjust it. When he came back, he slipped it on her, made marks on the velcro to help us understand where to adjust it to when we are putting it on, gave us a demonstration on how to adjust it for wearing over different thicknesses of clothing and that was it. It is a brace very similar to the pavlik harness she was initially in but is much more user and baby friendly. It can be worn over her clothes, removed for changing and, the big bonus is that we can remove it for 4 hours a day (which means we get to cuddle our baby, and just our baby, for 4 glorious hours a day. What a good feeling!

Addie with her main man in her Ilfeld brace

Later that evening we ran a nice warm bath for Addie in our big whirlpool tub. Her daddy put his swim gear on, sudsed up the bath and turned the jets on and she had so much fun splashing around, it was ridiculously cute. She was so excited, she didn't want to get out of the tub and it felt so good to know that she was half way done and could go back to enjoying her bath time!

She had a blast in her first cast-free bath
Now that she has been in it for a few days, we have settled into a new routine...and it is so much better than the cast! She can now use her high chair, sit without assistance in her stroller, we have been able to remove the padding from her swing...everything just seems so much easier! She is sleeping great in it and it really does not seem to phase her at all. BIG RELIEF! She is a little more flopsy to carry around as she needs to work to build up her back and ab muscles so she is strong enough to sit on her own again, so we are giving her tummy time each day to try to help with that. All in all, we are so grateful that the surgery was a success, the cast has done its job and we are one step closer to ensuring our little girl has good hips.

video

Tuesday, September 13, 2011

Final Week of Spica-dom

Our little beanie baby - playing the day away
I can hardly believe it has been three months of spica already! On the other hand it has felt like forever. I can't remember my little girl pre-cast...and I am certain that she doesn't remember life before spica. Can't believe that September is here already! Where has the summer gone? Oh - that's right, Addie and I spent the majority of it in the basement and strolling air conditioned shopping malls. Needless to say I am very happy that Addie's cast will be off soon (or at least we hope it will be!). We are not entirely sure what will happen at our upcoming appointment next Monday...but we are hoping for cast removal and brace fitting all in one day. And if the universe is really cooperating with us, perhaps we will even be able to get a brace that we can take off for short periods to bathe and change her...and we would feel like we won the lottery if she didn't have to wear the brace for too long! I suspect, however, that they will want her in the brace for another 3 months...and I guess that kinda makes sense. Why go through all of this and take the risk that the hips could slip out again?

Her favourite place - in her handy sitt chair surrounded by toys

Her second favourite activity - eating in her handy sitt chair!


Addie has been doing great lately, except for the past few days it seems that she has caught a cold and perhaps (it is so hard to tell!) really begun teething. She fusses when we try to feed her, and is chewing very aggressively, has a runny nose, the sniffles and is just generally a little more cranky than usual...very unlike our happy-go-lucky baby. So, I hope that if it is a cold it goes away fast and that if it is a tooth...it pops through very very soon so we can all resume regular sleep cycles in this house! Thank goodness for her new kermit the frog toy...the ONLY thing that would soothe her last night.

Showing kermie who's the boss!
In other news, we have been using a loaner carseat from the Stollery Children's Hospital here in Edmonton, where Addie had her surgery and we were told way back that once the cast comes off, we will need to return that...so, in anticipation of that, we have purchased a new carseat for her. We were so happy with the Britax Hippo that we purchased the Britax Advocate for her to ride in from now on. It is a convertible carseat that will work both rear and forward facing until she is 65lbs...she has gotten so long during the last three months that we were certain her little infant carrier was no longer going to do, and because it is a bucket seat, it certainly won't fit her if she is going into any kind of brace! So...the carseat arrived today via FedEx and tonight we will see if hubby can get it installed and maybe take her for her first ride in it! We tried it out in a local shop here in town, but ordered it online (much cheaper!)...so we are pretty confident she will fit!

Addie's new ride - in pink, of course!

You would never know she had a cast!
We are hoping she likes it because in just over two weeks we are taking a very long road trip with her to Park City, Utah for a little r and r for the whole family! If she doesn't like this carseat...that is going to be one LONG car trip!

We are almost there little girl, one more week and those legs will be movin'!

Wednesday, September 7, 2011

Less than two weeks to go!

So it occurred to me today that our journey in the spica cast is almost over...we hope! We have an appointment on September 19th with the surgeon in the plaster clinic and have been told the cast is coming off...what follows that, we are a little uncertain about as we don't have a lot of information. The surgeon indicated before her first surgery that once the cast comes off Addison will then go into a brace. The brace that we have been told she will most likely go into is called the Ilfeld brace...and again, we have next to no information about that. We are not sure if that brace will have to stay on her 24 hours a day / 7 days a week or whether we can take it off to bathe her. We also don't know how long she will need to wear the brace, whether it can go over her clothing or under...so many questions. Needless to say we are a bit confused as to what comes next. We are, however, very much looking forward to the cast coming off but, at the same time, are a little nervous about it. We are not sure how Addison will feel about having her cast removed, as she is quite adjusted to life in the cast...and really, at this point, does not know life before the spica cast! Will she be able to sleep in her brace? Will the brace bother her more or less than the cast? I guess we will just have to wait and see and, like the spica, take it one day at a time when the time comes.

Addison also had her follow up today with Dr. Olson, the pediatric plastic surgeon that removed the extra bit of skin near her right ear. He took a quick look at her scar and indicated that everything was looking great. They biopsied the skin they removed from her ear and it was, as he suspected, just a little bit left over from the formation of her ear. So that was great news. And it was great to tie up that loose end.

Now we just need to make it thru the next week and a half...and we will be onto the next phase of this journey with Addie and her clicky hips!

Thursday, August 25, 2011

Happy Half-Birthday Angel!

Addison's big debut - just a few hours old
This week marks Addie's half-birthday! We can hardly believe how quickly the time has passed. In those six months our little bean has survived the scare of a possible blood infection, a pavlik harness, has almost (fingers crossed) done her full term in her spica cast...and despite all of that has grown into quite a little personality whose smile melts your heart and whose mere presence can light up a room.

1 month old - very sleepy!

On the more fun side, she is the smiliest baby around, giggles when we make funny faces at her or talk her language to her. She blows raspberries constantly, loves her hello kitty doll, her sophie the giraffe and will chew on anything you put in front of her. She likes to spend time in her crib, surrounded by all her stuffed animals with whom she holds court - chatting away as though telling them what her latest and greatest discoveries have been. She has a rainbow maker in her room that just transfixes her every day at 5 o'clock when it lights up her room with little floating rainbows from floor to ceiling. 
2 months old - more alert!


She LOVES bananas but is not crazy about mangos, peaches, avacados or pretty much anything that is NOT a banana. Recently she decided that grandma's homemade apple sauce was ok too! Our little one has almost been weaned and relishes a good bottle of formula. She is finally starting to get some tufts of hair - even a little tiny bit counts, right? She loves her Treehouse cartoons - especially Guess with Jess and Dora the Explorer. She has started to get a little shy with the men in her life, but then on other days has all the smiles in the world for them. 

3 months old


Nobody is as good as her daddy. If he comes home from work and doesn't immediately interact with her, she gives it to him good by screaming at him until he gives her his undivided attention. 

4 months old - just before her surgery

4 months old - days following her surgery


She is so curious about everything around her. She loves being outside and particularly enjoys watching the leaves of trees rustle in the wind. She goes on long walks with her mom and dad in her baby bjorn carrier and delights at the world around her by offering small little coos of acknowledgement and approval. She is definitely an animal person and gets such entertainment out of watching the antics of her dog, Finn, and her cat, Furious.

5 months - only has eyes for daddy
Above all else, she is the joy of our life and continues to amaze us every day with how brilliant she shines. She is an inspiration to us and is the bravest girl we know. We love you angel and can't wait to see what the next 6 months with you in our lives will bring.

Happy half birthday angel!





Sunday, August 21, 2011

A Good Night's Sleep

Well, as Addison nears her 6 month birthday we decided it was time for our little sparkle to move into her own room (and out of mom and dad's - hooray!). Until she was 4 months old, she slept with us in our bed...and made a very good little warmer! Once her cast went on we moved her to her playard bassinet that was located right beside our bed. Last week we decided to make the big transition. We figured this might make for a few cranky nights of her feeling abandoned and alone...but we were wrong! Last week I laid her down in her crib, head and torso propped up with a crib wedge and lots of blankets to make her bed a little more comfy as she can't reposition herself at night...and to my surprise she not only went right to sleep, she had a two hour nap! Success! So that very night we put her in her crib and she slept really well, only waking once, around 4 am for a bottle. So this was the real test, would she go back to sleep after her bottle and change, or would she lay awake wondering where the heck she was? Again...she went right back to sleep.

Hubby and I were so impressed with the independence our little girl was showing, but at the same time we are both a little melancholy because it just means she is getting older and we so desperately want to hang onto our little baby. She is so happy in her new room that for the past three nights, she has slept 12 hours straight, no early wakings. Her dad and I, meanwhile, are still waking up in the middle of the night...so it seems we are the ones with transition problems as we are still trying to get used to it! The first night she slept all the way through her dad woke up in a panic, asking "Is she still breathing up there?". When you are used to having her right next to your  bed, it does take a little getting used to!

Last night I was watching her from the baby monitor set up in our bedroom, and I noticed that the poor thing still tries to turn over onto her side in the middle of the night but the cast keeps her firmly anchored on her back. However, it seems she has figured out a work around, she simply turns her torso to the side, inserts the thumb into her mouth and sleeps, half twisted, blissfully unaware that the cast is anchoring her down.

So after all we heard about how hard it is going to be to get her sleeping in her own crib after having her co-sleep with us it turns out we have disproven that in the last week! As for our worries of her feeling abandoned and alone by putting her in her own room... it looks like we are the ones left feeling abandoned and alone...while she sleeps peacefully in her big girl bed in her big girl room.

Tuesday, August 16, 2011

Summer Fun in Spica

Before my husband and I had Addison we used to delight in the fact that we could just pick up and go where ever we wanted. Yes, we had a dog and a cat that required some tending to but thankfully we had many friends or family willing to take them on if we chose to get away. We knew adding a baby to our life would change that somewhat but we promised ourselves that we would not let that change our social lives too much if we could help it. Well, like many things, that changed a bit when we got Addies HD diagnosis.

A simple trip to a friend or relatives house, even if it is just for a day, seems like a major undertaking as Addie requires a great deal of luggage to travel with her now (what a diva!). We have a bag for her changing supplies, a bag for her bedding, her Handy Sitt chair, her cast cooler AND the usual stuff that comes with an infant - formula, bottles, clothing, etc. It takes a full hour just to get her stuff packed up.

Unlike any other baby out there, diaper changes are a bit more involved, especially if the cast area gets wet while you are away from home! We need to pack not 1 kind of diaper but 2 plus abdominal pads. We also need to throw into the diaper bag the waterproof tape, the moleskin, the blowdryer AND the wedge to prop her up for her changes.

With her portable Handy Sitt chair and all her toys at grandma and grandpa's house

Then there is the stuff required for her naps! She needs her crib wedge and all the padding of her usual blankets and the one we use to prop up her little feet to help make her comfortable with her sleeping where ever she goes.

Her chair is very portable so that is an easy one to throw in. All this packing and unpacking is crazy...and definitely not what we had envisioned day trips being.

However, once we arrive at our destination and get her all set up, it is so worth it because the day just goes so much smoother. She can sit and visit with everyone, we can put her down for a nap (most of the time!) when she needs one and she sleeps comfortably. Because there is so much to pack for these trips it also means that we end up leaving little bits and pieces behind everywhere we go as I can't keep track of it all once we unpack it!

The cast makes a useful handle! At a recent family gathering, enjoying all the attention.

Summer means a lot of outdoors type events in Canada because that is our nicest time of the year, so most of us tend to want to be outdoors during the hot summer months from June-August. The biggest challenge we really have then is one that we cannot pack for - keeping her cool. Even moderately warm days can overheat our little one so we have to constantly watch her for signs of heat exhaustion and try to make sure when she naps there is a cool enough spot somewhere for her to rest. I am terrified that I am going to mistakenly overheat my poor little babe. I am sure I am a bit too overzealous when it comes to this, but I just keeping thinking how miserable I would be in a body cast...let alone if I was HOT and in a body cast!

Even though I moan about the packing and unpacking...it is worthwhile because Addison loves our little day trips. She is such a social butterfly...especially if those trips involve visiting her cousins or her grandparents. So I will just learn to love the packing...and maybe I will get better at remembering to bring it all back with us too!

Taking it all in at a family picnic...again, that Handy Sitt chair goes EVERYWHERE, indoors or out!

Friday, August 12, 2011

Message Board Advice

Like most parents dealing with the unexpected diagnosis of hip dysplasia, not knowing anything about the condition I went right to google as soon as I found out. What was this condition my little girl had, what do I do about it, what is the long term prognosis, how am I going to deal with a baby in a harness/cast/brace? So many questions were swirling around in my mind.

What I discovered was that there were a lot of other parents out there dealing with the same situation...and so I spent a lot of time chatting with folks on some of the message boards and hip dysplasia groups out there. There are a lot of folks who are so compassionate and caring and giving of their time to answer all the questions of a newbie to hip dysplasia and to them I owe a LOT! Those groups provided a lot of support and advice at a very uncertain time in our new parenting lives!

However.......

<rant>
I have become kind of jaded lately. We are now half way through our spica experience and baby, baby's daddy and I are much more comfortable and confident in our situation now than we were at the outset, so we have settled into life with hip dysplasia much more reassuredly. I still visit the message boards in search of new tips and tricks, but also to chat with those newbies just dealing with a recent diagnosis as I remember all too well how frightening that was, how scared we were and how we just needed a little reassurance. What I am dismayed to see are all the fear mongers and argumentative folks that exist on these boards. Parents seeking advice are given it, but some of it comes in negatives. Want advice on something -- one parent will say one thing, then another chimes in about how wrong the other parent is and what the more sensible solution will be.

The other ones that irk me are those who disparage the advice of doctors. Maybe I am spoiled in Canada with having doctors I can trust, and while I do agree you need to be inquisitive and seek a second opinion if you are not sure - what good does it do to plant the seed of doubt in a parent's confidence in their medical team? It is difficult enough navigating all the specialist appointments and just getting through this with our precious little ones. Where does this need to discount each other's experience and advice come from? I am afraid that this probably just causes more anxiety for those newbies to HD. I truly believe these folks just need to hear what others are doing and then make the best decision based on their own instinct, and all of us board crawlers need to understand that...and remember back to how we felt when we first got the news. There is not one of us that has the best answer - we just know what we would do and what works for our own unique situation. What I have learned is that there are so many varying degrees to HD that we can't possibly assume that what works for us will work for everyone .

So here is my plea - for all of you message board crawlers out there who think you know best. You don't. Please remember that. Only the mom and dad of the little one know best. All they need from us on those boards is our compassion, our experience and our support. There. I said it. I'm done. And maybe I should take a break from those boards for a while.
</rant>

Thursday, August 11, 2011

PDA

In our case we get public displays of affection, but we also get public displays of anxiety, anger and even acrimony. Yes, taking a 5 month old out in public in full body cast can often elicit the oddest responses from total strangers.

When Addison and I venture out, we typically do so Dr. Evil style with me wearing Addie in her baby bjorn carrier. Because she is up and facing forward we get a lot of smiles and coos from total strangers wanting to meet or cuddle her. She soaks it right up and for the most part loves the attention! However, sometimes we do have odd encounters.



Mini-me + Dr. Evil

Addison + Daddy

A few weeks back, I was out at a local department store looking for some good walking shoes...as Addie and I do a lot of walking around these days (seems she has become quite an outdoorswoman). Out of nowhere this woman appears, I kid you not, right in front of my face and gasps "What did you do to your baby?" I am sure people on the other side of the city heard her gasp. Sheepishly I had to explain the situation and reassure this woman (convince her maybe?) that I am not a bad parent. As unnerving as these kinds of encounters can be, at least that woman had the decency to confront me about it. That kind of situation at least allows me to respond and share Addison's story and in some small way help to spread knowledge about hip dysplasia in infants.

The people that really irk me of late are what I call the gawkers. Seems where ever Addison and I travel, they are there. Silently staring and judging. I wonder if these people realize that their face is betraying them because the staring is often accompanied by a look of shock and often disgust. I think that many of them assume that I am a delinquent or abusive parent and that I must have done something to my poor baby. Hip dysplasia is something that is not commonly understood by folks, and they are so unaccustomed to seeing a baby in a body cast that they can't help themselves from jumping to conclusions. I just want to yell at them - "Yes! I got drunk and fell down the stairs with her! Happy now?" Most days I take it in stride, but there have been moments where the gawkers have really gotten to me. On those days I tend to feel like not even leaving my house, but that's not fair to Addie because she loves our little outdoor adventures.


Hanging out at home, away from the gawkers

There are a lot of compassionate folks out there too who approach me and in a very concerned tone ask about why Addison is in the cast. To those folks I am happy to explain the situation and am always responded to with "will she be ok?" and genuine care and concern.

So, if you are out and about and happen to see a baby in a body cast - don't automatically assume that the parents could have prevented it. Be kind, ask about it if you must but by all means please don't stare and please don't judge.
Spica babes need love too!

Wednesday, August 10, 2011

Spica Sleeping

Sleep is a much discussed topic among new mothers...how much sleep is your baby getting, is she sleeping thru the night yet? How many naps does she take? Is she sleeping in her crib yet? Well, this all takes a different slant when you have a baby in a body cast.

Before her closed reduction Addie and I had come to an agreement on the sleeping arrangements. Her dad and I tried for the first few weeks to have her sleep in her own crib, in her own room. However, after three weeks of poor baby waking every hour or so in need of comforting, only to get her back to sleep and try ever so gently to lay her back down in her crib to have her wake 5 minutes later crying out for comfort...well, we decided that something had to give. We would not survive the sleep deprivation this was wreaking on our lives! So, after one particularly bad night where no matter what we did Addison would not go to sleep, at 3 am in the morning I finally broke down and brought her to bed with me. Wouldn't you know it, she fell right asleep snuggling face to face with me. And so it went, until she got her spica cast.

The first night home she co-slept with us as she had done for the past two months and did not stir.  In hindsight I now realize this was due to the pain meds they had her on! For the second night was not so peaceful! She just could not settle. So that next day I decided to try an experiment. We had purchased a playard for Addie before she was born, thinking it would serve as the bassinet until she was ready to sleep in her own crib. From day 1 Addie wanted nothing to do with that playard/bassinet. We would lay her in it and she would immediately start screaming. Turns out our newborn was just a cuddle bug in need of body warmth! Prior to her surgery we did not make much of an effort to get her on any kind of schedule, we were so devastated that she was going to have to endure surgery and casting that we wanted to spoil her a little and so we let her dictate what she wanted. Being the happy baby she is, she wasn't too demanding and her needs were totally achievable so we said schedule be damned!

Just waking from her mid-morning nap in her playard
After that second night home following her surgery, I decided to give the playard another try. Sure enough, I set her down in it for a nap and she went right to sleep. She was now ready for a little independence. I think the stay in a hospital bed helped to expedite that somewhat, but we were pleased all the same. So, we moved the playard into our room, put a crib wedge in it to help prop up her head and padded it with lots and lots of blankets to help make it as soft as we could. That same night following the successful nap we put her down to sleep in the playard...and wouldn't you know it...she slept peacefully.

While I am happy to report Addison is, for the most part, a great napper...night sleeping is a bit of a challenge for her. When I chatted with my doctor about this issue, she simply told me that until Addison is out of the cast and able to reposition herself on her own Addison will likely continue to wake every 3 hours or so. Not the news or advice I had been hoping for as by mid-afternoon I am generally a zombie due to midnight, 3 am and 5 am wakings!!

Now, I mentioned earlier that before her cast went on, we were on no particular schedule but a funny thing happened on the way to the spica cast. Almost immediately following her surgery and casting, Addison started to develop her own schedule. Pretty soon, the time of day she needed her naps, her meals and her bedtime began to get more consistent. It really surprised me! It got so good that prior to her cast change, Addison had a few nights where she slept the whole night through (success, or so we thought!).

We try to socialize Addison a lot, so we take her to visit relatives and friends as often as we can but we have noticed that this does, indeed, disrupt her day to day routine. Following her cast change, sleeping has been a little more unpredictable again. She is still in her playard and continues to wake at midnight, 3 and 6 am for feedings but we are thinking that once the weather starts to cool a little, we will be moving her to her own bedroom. Our bedroom, where her current bed is situated, is in our basement so during these hot summer days it is much cooler for a baby in a cast. Her room is on our upper floor and while our house stays fairly cool, it still is likely more comfy for her to remain in the dark, cool basement for now. She is fast approaching the 6 month mark, so I am going to have to get the transition to her own room underway, we want to achieve that before then.

Adjusting to the Hippo Car Seat

Much happier in her Britax Hippo car seat
Well, I am happy to report that the days of loathing her Britax Hippo car seat are gone. Addison has become more and more accustomed to the car seat to the point where she now enjoys great naps in it on longer journeys (yay!). In hindsight I realize that it was probably her incisions that bothered her in those early days, not the car seat!

We found that tethering toys to her car seat helps her pass the time happily
One unfortunate thing about the Hippo car seat is that it does not have any place to attach car toys to...so we have used teething rings to tether toys to the Hippo seat for Addie to play with during car rides. We also bring along a few stuffed toys for her to play with in her seat and have installed a mirror that allows both her to look at herself (something that always brings a smile to her little face) and also allows us to keep an eye on her in the backseat!

We have had to customize the seat to allow Addie to fit. We have padded the back with memory foam and added a head rest for her to make it a little more snuggly.
The seat was loaned to us by the Stollery Children's Hospital, where Addison had her closed reduction, and it seems to me that it is meant for a larger child as we have had to pad the back of it with memory foam in order to position Addie far enough forward to sit properly in this car seat. We are very thankful to the hospital for loaning it to us, because we had no idea what we were going to do for a carseat for the duration of her spica-dom!

Playing away with her tethered toys
On particularly long car-rides one of us will sit in the back of the car with her as she has a tendency to lose her toys and get bored. With mom or dad beside her, she generally plays for a little while and then is able to easily fall asleep in the car seat (which is great news for her mom and dad who are no longer arriving at destinations with a tired and cranky baby!).

Now that we are 7 weeks into the spica cast and have a date set for follow up with her surgeon in mid-September...I am beginning to wonder what the next evolution of car seat will be? I am pretty sure she won't fit in her bucket seat we bought to use with her as a newborn...or maybe she will? I have heard lots of stories about babies who are quite sore following cast removal which makes me wonder if I will need a bigger car seat...and then there is the brace that she will be placed in following the cast removal which will keep her just as splayed out as in the cast. It might be time to start investigating new car seats!

Tuesday, August 9, 2011

Spica Logistics

Diapering. As new parents, we expected to do our share in the diapering trenches, but we were not prepared for just how involved this would become with a baby in a spica cast! When we first brought our daughter home from the hospital we quickly learned how many diapers a little sparkle can go thru! We soon became diapering pros, Addison's dad took great pride in his diapering abilities and after a few explosive situations and a lot of laughter we both had figured out that it wasn't all that bad! So when Addison went into the hospital to get her spica cast to correct her hip dysplasia we had no idea what a production diapering would become. And so we continued our diapering education!

Within an hour of her surgery, Addison had a major diaper situation going on. I had read a lot on line about how parents of kids in spicas dealt with diapering so I went into her surgery day with some information and from what I had read I fully expected the nursing staff in the recovery room to have "petaled" her cast with water-proof tape. However, as the nurses wheeled her out of the recovery room the first thing they told us was that they had administered morphine for Addie because she was inconsolable in the recovery room. As a result, they had not even put a diaper on her as she was too upset and they suspected it was a bit painful due to the incisions made in her groin during her surgery. So, there she was, spica cast on but no diaper in the cut out where the diaper was meant to be! So, while her dad and I tried to comfort her as she came off her sedative, we didn't really pay much attention to the diaper situation. As any parent knows, it is hard to see your child in pain so diapering was the last thing on our minds. It didn't even occur to us how yucky that would be if we didn't deal with it ASAP. So, of course, she had a blowout. And I mean a good one. It went up the front of the cast, up the back of the cast and all over the hospital bed. If it wasn't so difficult to see her in such pain, we would have had a really good laugh at how ridiculous it was!

Her dad and I just looked at each other in desperation and scrambled to press the nurse call button! Surely they would know what to do! How wrong we were. I don't think the nurses see many infants in spica casts. She brought us some wipes meant for sponge bathing infants and we went to work wiping down our little girl and her bright pink cast. Once we had the worst of it wiped up, we decided we needed something to help soak up the wetness. The nurse brought us some abdominal pads which we stuffed up her diaper, then we placed a smaller diaper inside the cast and a larger one over that! Over the next few days, we got more and more comfortable with the whole diapering situation. Once we were home, and with a little practice and trail and error, we got it down to a science.

At first we thought a maxi pad would be the perfect situation to help dam up the diaper area in the back, as we had a few incidents of explosions that went all the way up the back of the cast. Because you can't actually fasten the inner diaper closed, it is very loosely stuffed inside the opening, leaving lots of room for accidents inside the cast. So, we thought, a maxi stuck to the inside back of the cast would be the perfect solution. We started out putting that in place first, then placing the smaller diaper over that, and then the larger diaper over that. What we soon learned was that with the combination of the glue on the back of the maxi and the moistness and warmth of the diaper area in general, the glue began to make the casting very very sticky and difficult to work with. Not to mention, when we would turn Addie over to complete the diaper process, the cast began sticking to her back...not much fun for her. Back to the drawing board. We went in search of something different and found cloth diaper liners at our local drugstore. Perfect, we thought! They were very long, so we cut them in half and began putting those in the back of her cast, then the smaller diaper, then the larger diaper. Within about a day, she developed a nasty rash. Turns out when you cut those disposable diaper liners in half, the materials used to make those liners super absorbant also gave our little peanut a horrible allergic reaction. So...we decided to return to the abdominal pads we had used in the hospital.

What we also found was that Addison needed a bit of help too as she had to lay through what had now become a 5 minute diaper change job. So we adapted her change table as well. We purchased a pregnancy wedge for her change station to elevate her back during the whole process and make her a bit more comfortable. Because the changing process had become that much more involved and more time intensive we decided we also had to rig something up to entertain her while we fussed over cleaning the cast and diaper area so we got a mobile that we could hang above her as we worked on keeping her clean. These worked great.

The arsenal required for a simple diaper change these days!

We get a LOT of questions about how, exactly, we change her. So here it goes, step by step. Hopefully this will answer some questions and maybe help other parents who have babies in a spica.

1. We lay her on her back on her change table, back cozily propped up a bit on the wedge and ensure she is in reaching distance of her mobile (so she can entertain herself). We then remove the soiled inner diaper, leaving the larger diaper underneath her in case she decides to do some business in the middle of the change...which happens very frequently!


Getting ready for the diaper change

2. We wipe down the front of her diaper area with either a pre-moistened, alcohol free wipe or, if she has a rash, a washcloth with warm water. We then use a blowdryer (yup, you read that right) to dry the area completely.

3. We then flip her onto her tummy and  repeat the cleaning and drying procedure in that area.

Clean and dry!

4. Once clean and dry, we take an 8x10 kendall tendersorb abdominal pad, which we have cut in half, and stuff it up the back of her diaper, leaving just a bit overlapping on the outside diaper area.




Placing the cut in half abdominal pad


5. We then take a size 2 diaper, which we have cut the fastening tabs off of, and stuff that up the back of the diaper, over the abdominal pad. That gets the back done!


Size 2 diaper over the abdominal pad

Make sure it is tucked in well
6. We then flip her over, and stuff the front of the size 2 diaper up the front opening of the cast taking care to ensure the leg area is not bunched up by smoothing out the leg ruffles and tucking them into the legs of the cast.


Flip her over and tuck in the front of the diaper to the cast area

Make sure it is tucked in well
7. We then take a size 6 diaper and put that over the whole cast, to hold the smaller diaper and abdominal pad in place...and we're done!


Place the larger, size 6 diaper over the whole cast to hold everything in place

Now, as you can imagine...this is not an exact science and there is plenty of room for disasters! To keep the area as clean and dry as possible, we also have lined the cast opening with waterproof tape to help delay cast breakdown when the area gets wet. Because waterproof tape is plastic and we felt not all that comfortable against baby's tender skin, we also found moleskin in the foot care section of our local pharmacy and decided to put that over the water proof tape.  After trying a few different brands, we decidd that the Dr. Scholl's Moleskin Plus Padding roll is the best.
http://www.drscholls.com/drscholls/productSearch.do?method=doProductDetailsLookup&searchArg=84

It provides a nice soft surface against Addie's skin. When the moleskin gets wet or soiled, we simply peel it off and apply new moleskin as needed. It takes quite a bit of time to petal the cast opening area with waterproof tape and moleskin, but it is worth it! I find it is best to do this in the mornings when Addie is much easier to get along with in general. She is very patient in the morning. If we have to do a spot replacement of the moleskin later in the day, I get her dad to make faces at her or sing to her as I do it which helps to pass the time and calm her down a bit.

With a little patience, a lot of trial and error and even more laughter, diapering has gone from something we initially dreaded to something totally manageable. Just another interesting part of having a baby in a spica!