Brace Free (for all the wrong reasons)

This post is months overdue – which seems to be my blogging trend. Honestly, after our appointment I didn’t feel like talking about Hip Dysplasia at all, I’m mentally done with this. Unfortunately, Maura’s hips are not done.

Back in June, we had our follow up appointment. We had been in the brace for 20 weeks, 12 full time, and 8 more 18-20 hours a day. I went in to that appointment knowing that slow progress, or even no progress was a possibility. Sure enough, the Dr. confirmed my fears that her hips hadn’t progressed. What really dug into my heart though was that because of the lack of progress he thinks it’s “more likely than not” to need further surgery around age 2.5/3.

Then we got the news we had been hoping to hear – she can take the brace off during the day. This news was bitter sweet. Every time I see those sweet little legs, I don’t get to feel joy that she’s improving. I feel disappointment. I feel fear. I feel sadness.

We have a follow up again in September. We are hoping that walking deepens her hip socket on it’s own, but I don’t know how likely that is.

  • Above, is our series of X-Rays. Beginning with the top left image (pre treatment), her right hip (shown on the left side of the image) is dislocated. The ball of the femur is under developed and therefore seen smaller on the xray.
  • In the bottom left image (post reduction and 12 weeks cast) the hip hip is in the socket and the bone above is begging to grow downwards as we want it to. Essentially, because her other hip is healthy – we want the two to look alike.
  • The middle image is 12 weeks of full time bracing. You can see that the bone above the femur is slowly coming down, but isn’t symmetrical yet – at this point our Dr. felt 10% chance of surgery.
  • In the image on the right, our Dr. said he doesn’t see any progress. This is the image that shot our chance of surgery up. I struggle with this image. I keep looking back at it, and am convinced I see growth. I’m hoping that I’m right, and that at our next appointment it will be more obvious. Trying to stay hopeful.

I’ll leave off with some pictures of my brace free child doing brace free things. She is normal, and we’re going to let her be normal until we can’t. She will continue to do normal kid things, and we will keep pushing hip dysplasia into the backs of our minds until we either can’t, or we don’t have to.

 

Pre-appointment jitters

Maura’s next hip follow up is tomorrow (June 6, 2017). She has now been in the rhino brace just under 20 weeks (12 weeks full time, and 8 weeks 18-20 hrs a day). I was excited for our last hip appointment because I thought I knew what to expect. Our previous doctor had been very set on 12 weeks full time, 12 weeks half time as the standard protocol for treatment after the cast. Our new doctor holds different opinions on treatment. I was devastated 8 weeks ago when I expected to hear  that we were free during the days to wear cute clothes, show off our little legs, and do what every other kid does for the warmer spring months – instead I heard “She’s doing great, you can start taking the brace off for 4 hours a day!” I must have given the doctor a look of death because he immediately said “or 6, more won’t hurt…. and longer for special occasions”

I knew this was a possibility. Our doctor back in Oregon told us that many doctors hold different opinions on treatment protocols when it comes to bracing and that there isn’t any research to support the differences. And, I have searched through every research database I have access to – and he’s right – I can’t seem to find anything. :Sigh: It’s not that I wasn’t happy to have more free time, but I felt like the light at the end of the tunnel went out. Without a specific timeline, how do we know for sure when this journey will end? I guess we don’t. So here I am, trying to prepare for our next appointment. Will we get the news we want to hear? or will this journey drag on and on.

Appointment prep questions:

  1. Is her progress still in line with your expectations?
  2. How are we measuring progress? What is our end goal? (I asked this question last time and was disappointed in the response I got of “I’ve seen lots of hips and we’re just looking for more improvement” You know what I didn’t find in my research? an article that recommended “eye ball the xray and go with your gut” grrr, better ask this question again!
  3. Is the chance of future surgery still approximately 10%?
  4. Are there any activity restrictions or recommendations?

I’m sure I’ll think of more by tomorrow, but for now that sums up what I need to know. Wish us luck!

 

 

Life in the Rhino brace

We have been almost full time in the Rhino brace for about 3.5 months now, longer than we expected with quite a bit of time to go. I wanted to wait to share our experiences until we really had a grip on living with the brace, and I can definitely say it has become no big deal. I don’t like it, I can even say I hate it, but what I really hate is not being able to wear cute clothes with summer quickly approaching.

The first weeks were a bit rough. Maura was very weak after her 3 months in the spica.

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Few hours post-spica removal.

She couldn’t sit up on her own and her legs seemed to flop in every which way. One of her very first tantrums (and really one of her only ever) was when she tried to sit up and couldn’t. In the cast it was like she knew the cast was keeping her from sitting up, but when it was gone and she still couldn’t, she was really upset and frustrated – to the point of hitting her head on the floor and pulling her hair – poor kid. I ended up bathing with her in the tub for about 2 weeks, it took that long for her to get sturdy enough to sit alone. We also couldn’t fit the brace in her car seat as we were told we would be able to. The ortho did give us permission to take it off for car rides, which is great – but not fun in reality. I was taking the brace off, putting her in the seat, getting where we were going, putting it back on often in a parking lot, doing our errand and then repeating to go home, or repeating several times to do multiple store errands! We didn’t get out much during the first few weeks…

We had a follow up appointment and X Rays 2 weeks after the cast came off. Maura’s hip was looking great, very stable in full range of motion even under light pressure. Her acetabular index had gone from 48 degrees to 35 (we wanted under 30 at 6 months, and closer to 20 by age 2). Her ortho declared “Perfect Progress” and expected further improvement with the brace. Woohoo! We also brought up our concerns with the sizing of the Rhino – to which he agreed to let her try on a larger size. The nurse assumed it would be way to large, but to her surprise it fit very well. In the larger size brace Maura was able to move around a lot better, mostly due to the ability to now bend at the waist. Think – jeans that fit compared to a waist band two sizes to tight! The new size also allowed her to fit in her carseat!!! That made life a lot easier.

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A week or two post spica 

Once the sizing was right, Maura started right in trying to find her legs and get moving again. She was able to army crawl, as she did in the cast, immediately. The second day in the brace, she even pushed herself into downward-dog briefly while dancing to Sesame Street! Over the course of weeks, her knees started getting more underneath her and her crawl became more normal opposed to the army crawl dragging her legs. Though her legs don’t move individually, she seems to tilt her pelvis back and forth allowing her legs to take turns and move her forward. It took about 2 months to sit up straight, legs in front of her while in the br

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2ish months post spica

ace. I’m not sure why it took her so long, but maybe a combination of weak core and needing even more strength to counteract the pressure of the brace pulling her back. I really don’t know, but once she mastered
that her milestones really started to take off. Almost at the same time, she started not just pulling herself to stand (she actually did that within 2 weeks of cast off), but pushing on things that would move like the rocking chair or boxes. Now at 13 months old, and out of the cast for 3.5 months – she is standing unassisted for a few seconds at a time and even took a few independent steps tonight!

I think the brace is easy, but only because the spica was rough. If we hadn’t done our time in the cast, I don’t think I’d have the same opinion. But, here are some tips and tricks to make things work…

Verify that it fits properly! Ask to try on different sizes if you can. This made the world of difference for us.

  • We still use our Spica table for meals. We tried using the booster seat we used during the spica days, but found that Maura’s core strength wasn’t enough to sit up in it without the cast. Now, she can use the booster but there was a good 2.5 months that there was no way.
  • The Velcro will wear out, way sooner than you expect it to. I bought a large role of Velcro from JoAnn’s and reinforce the straps every few weeks with fresh sticky Velcro. I attach it with thin strips of colored duct take.
  • You can also extend the straps using the new Velcro or with felt. If there is any rough side of the Velcro exposed it will scratch your forearm and leave scars. It’ll also ruin any clothes (on you or them) that is woven.
  • You can use a fine comb to comb out the fluff that will immediately collect on the brace. I usually comb it well, then use duct tape to pull the remaining fuzz out. It’ll never come completely clean though – keep your expectations low.
  • Put towels or blankets under the brace if you’re going to let your kiddo sit on anything that could scratch, I keep a dish towel in my diaper bag.

 

 

Hip Hip Hooray – It (was) Cast off Day!

Cast off day was actually January 24th… I’m apparently a month (plus some) late getting to posting this. 

Ready to get this thing off!

We were warned that getting the cast off would be pretty traumatic, and it was, but we recovered quickly. We were also warned that Maura may be in pain from stiffness or sensitive skin- but she wasn’t at all. Here’s a run fown if the appointment:

The appointment was at the clinic and scheduled as a follow up. We got there and a nurse came in to remove the cast. We came with distractions and sound canceling headphones but neither helped. We were instructed to hold her on her side, not ideal for her to play with my phone and she could see what was happening. She stayed calm until the saw touched her cast, it vibrates so even with the noise muffled- she freaked. She ripped the headphones off immediately (waste of only 15$ thankfully). The next 15 or so minutes consisted of holding down a flailing and thrashing baby with all our strength. The nurse said she’s the strongest baby she’s ever seen! The fiberglass was double thick, and each cut had to be made twice- it felt like forever and I’ve never seen Maura so upset. It pulled at my heart, but part of me felt joy at the same time. I couldn’t wait for this day! 

Once the cast was off I was scared to touch her. The nurse had to tell me it was ok to go ahead and pick her up. She felt so tiny, but LONG, and extremly floppy. Happy to report her little leg rolls were still there! To hold her was like holding a giant newborn. Her core was just very out of practice. 

Sweet freedom!

Her skin was red around her thighs and casted knee, very flakey – like a peeling sunburn- but she didn’t act sensitive. I had given her a dose of Tylanol in the waiting room, but she didn’t seem to achey either. What I wasn’t expecting was the fiberglass from the cast got all over the table- which really roughed up Maura’s skin as she thrashed in it. She had a very bad rash on her shoulders, upper back, and arms. When I bathed her at home, I let water run over it without rubbing it. I was nervous that glass particles could still be on her. (I don’t think there were, or the running water took care of it). I then blotted prescription hydrocortisone cream on it and it cleared in a couple days. I’d recommend keeping a long sleeve on, but pulled up to protect if you have a wiggly kiddo. 

The nurse had a washcloth and sink available to wash her while we waited for our ortho to come in, but I couldn’t set her down. She was emotional and I couldn’t get enough of her body snuggled against me. 

The ortho came in and did a physical exam. Moved her legs around gently. Her hip felt very stable! Since we were getting ready to move cross-country, he ordered xrays and a follow up in 2 weeks. He doesn’t do them that day since they’re typically very stiff. He usually waits 12 weeks to check progress, but wanted hard evidence of where we stood to pass to our new doctor. He said she looked in fantastic shape and that the nurse would come back in to fit her rhino brace- to be worn always except diaper changes and baths. (And due to my concern about a carseat, he said as long as her legs have wiggle room we could take it off for the car). 

The nurse returned and helped us dress her. I brought several outfits just in case She was too stiff for pants, but super stretchy leggings worked great. (Izzie & Owie brand are awesome!)

We got our carseat installed by the hospital’s safety center right before our appointment (didn’t want to keep a hippo and have to ship it back west when we moved? Not sure theyd even have let us… so we bought a new Britax Marathon.) Unfortunately, the brace didn’t let her bend at all to fit…. so off it came already. *more on that soon… turned out to be the wrong size brace!

All in all, stressful but exciting day. Next up: 12 weeks full time in a rhinobrace followed by 12 weeks half time! Rumor has it it’s a breeze compared to the cast, and since I’m writing this a month late- I’ll agree! 

Cast Change Day

Cast Change Day – the half way mark for many hip babes is a big DDH miletone. I wan’t quite sure what to expect, so if you find yourself in the same boat: here is our experience.

The cast is changed very much like it was put on – in the operating room, under general anesthesia. We were called two days in advance to set times for our procedure. We again had the first procedure of the day – our hospital does it in order of age. We had a 6am check in time, and an hour and a half drive to the hospital meaning we had to leave the house around 4am (to be safe… you know 4 am traffic or an ocd mom…). Lucky for my husband, he was returning from a work trip at 1am – plenty of time to rest up 🙂

I woke Maura to get her last feed in at 3:30am, and we took off shortly after. We were taken back pretty quickly, and the routine was the same as the original Closed Reduction. The main difference for us, was that this time there would be no arthrogram (dye injected to see the joint alignment). They would cut the old cast off, check the stability of the hip, do an MRI, and put the new cast on. Easy peasy.

She was taken to the OR again without a fuss at 7am, and we were called back by 8:30 I’d say (I can’t remember exactly, but it was short). The first procedure, Maura woke up a bit ‘drunkish’ from her anesthesia, but not upset. That was very different this time. Maura woke up inconsolable. She cried for about 40 minutes straight and wasn’t soothed by anything. This caught me off guard… they told us it was a possibility the first time around, but because the first time went fine we didn’t expect it. The nurse explained that typically it takes 30-40 minutes to wake up out of anesthesia, but Maura seemed to force herself half way awake within 5 minutes. This was most likely due to not having any pain meds for the procedure, the pain meds slow the waking process. She was awake, but had no idea where she was and didn’t recognize me. This crushed me. Finally she started to calm down and because her old self around that 40 minute mark. She nursed, and then was fine, and even playing peek a boo and giggling as we went through the rest of the routine.

This time, I brought my duct tape and moleskin with me. As soon as we were able, I broke out my own diapers and got her set to a degree that I felt comfortable driving the house and a half home! Unfortunately, I found a lump in her cast that I wanted taken care of before we left. We had to wait for the surgeon to finish his second procedure of the day before coming back which ended up to be about another hour or hour and a half. The OTs came to re-fit the car seat, which took about 20 minutes instead of the 90 that it took last time. I spent the rest of our waiting time putting duct tape and moleskin on the cast – the parts I was satisfied with. Maura was back to her self, so she read ‘Where is Baby’s Bellybutton?’ in her hospital crib for a while, waved to the staff as they walked by, and played some peekaboo with her blankey. While I did that, my husband took the car seat down and had it reinstalled with the Safety Center. (Our hospital has a Safety Center, they loan out car seats and help install them, they also sell baby proofing gear for a low price.)

The surgeon finally came back out, and sawed off the end of her cast to remove the lump and give her foot full range of motion since I had explained how mobile she had become in her first cast. From check in to check out we were there 4 hours, which it could have been much shorter. All in all, it went ok. I’m glad to have made it across the hump! And, since I’m writing this weeks later… we adjusted very easily to cast #2, and are even more mobile in this one – crawling, rolling both ways, pulling up to stand!

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New clean cast! I got fancier with pink polka dot duct tape this time 🙂

Diapering and basic Spica cast care

Basic Spica cast care isn’t quite as complicated as I originally thought – you really just need to achieve two things and however you do it is fine. 1) Protect your child from the cast, and 2) Protect the cast from your child. The following steps are how I did those two things…

First: before you even leave the hospital – touch and get to know that cast the best you can. Don’t be afraid of it… it’s coming home with you, and once you’re home your stuck (unless you go back). Run your fingers along the edges, run them around the inside as far as you can touch. Can you get a finger in the whole way around? Are there any pressure spots that could rub? Is it sharp!? Does it look uncomfortable for your child? I have heard horror stories about casts being too tight to eat or grow in… you don’t want that at all and if you have any concerns, voice them before you leave. We had a lump inside our cast at the bottom neat Maura’s ankle. I knew she’d be crawling, and I knew if she moved that foot around the lump would hurt. We had to wait, but our surgeon came back into our room with a cast saw and cut the leg shorter for us. You couldn’t see the lump, but I checked and they were glad to fix it. If there are sharp edges that touch your child, moleskin them immediately – before you leave! (*** I actually emailed my Dr. in advance and said something to the extent of “I’m concerned about hygiene, the health of my daughter’s skin, and her growth during this time, is there a way to address these concerns when you apply her cast?” He called me, and went over his way of putting the cast on and leaving enough room etc. all Dr’s are different, but talking to your Dr. in advance is a good thing if you’re worried about anything***)

Second: As soon as you’re home, waterproof the entire diapering area with waterproof tape (I use duct tape). They say ‘petal’ – that just refers to a method of taping. I tape a small strip (3-4 inches long, and about 1 inch wide). I first stick it to the outside, then tuck it under firmly careful not to stick to baby’s skin. Overlap the next piece a bit to make a seal, and keep going until you’ve gotten all the way around the diaper area. You can have fun with colorful duct tape if you like – makes the cast look happier. ** You can see it below, the purple duct tape… I apparently deleted the photo of my pretty pink polka dot tape over our purple cast.. oh well**

Third: Moleskin any edges that will touch your child’s skin or rub. I usually moleskin the entire top edge around the torso, the bottom of the legs, and portions of the diaper area that a diaper doesn’t come between. (Maura gets a rash from duct tape, so anywhere the tape will touch her I cover… most of the diaper area gets separated from skin by a diaper, so it’s not the whole thing.) Now you’re set 🙂

Diapering in a Spica cast was by far one of my biggest concerns. Anyone with a baby knows that diapers aren’t completely reliable, even when worn correctly – let alone when ‘tucked’ in place and not velcroed. Add on the pressure of knowing that if poo escapes, the cast can’t be taken off and thrown in the laundry! The first morning in our cast, we got poop in it. Not a blow out, but a smudge about the size of a nickle right at the front of her hip (trouble zone number 1). The first several days after that, I constantly was thinking about poop… I couldn’t leave the house if I weren’t sure that he had pooped all she could possibly poop for the time being without being panicky the whole time spent out. What if she pooped when we were out? Could I bring the vacuum out in public to use our trusted Cast Cooler? No… Could I bring a hair dryer and enough wipes and camp out in a public rest room long enough to get her clean!?!? Probably if I had to, but I really didn’t want to! Ahhh. The only way to ease this fear was to come up with a method that worked several times in a row and I grew to trust…. So – here is my method and also the supplies I consider essential, and things I’ve learned. As of now – 10 weeks in, we have only had two minor poo escapes, both which were cleaned out successfully. At our 6 week cast change, the surgeon gave me a “Top 10% for Cast care.” Type A for the win!

Supplies:IMG_7516.JPG

Duct tape and Moleskin: for protecting the edges of the cast and for protecting your childs skin.

Diapers: One size for inside, 2-3 sizes larger for outside the cast. You won’t know exactly what sizes work with your cast until you try… The best you can do is have a couple different ones on hand for the first day or so. Your hospital will give you some, but they don’t always have the best ones for the job. We use her regular size 3, but switched to Pampers Swaddlers for inside the cast. They are the smoothest and thinnest, but still absorbent. The elastic waist of our usual Huggies little Movers prevented them from staying in place across her back because we CAN’T velcro them on… (some people say they can, our cast comes up too high for my hand to reach down that far on her hips, nor do I want to wiggle around an unstable hip).

Wipes: Just tons of them incase of a poo escape, you most likely have them anyways, just don’t run out.

Mini Flashlight: Since you won’t be plopping your kid in the tub for an extended period of time, you want to see any minuscule spec of poo that may have gotten tucked away in a little crease or on the cast. You also want to see any red or irritates spots on their skin before they get worse. Maura gets little rashes from the duct tape, if I see any pinkness, I cover the duct tape with moleskin on that spot. You can also get a good view of skin deeper under the cast once the cast loosens a bit. Otherwise you have no way of knowing if their skin is irritated or worse, breaking down (which would require an emergency cast removal).

Q-Tips: I can reach a bit deeper when needed with a qtip. Especially the hip creases, hard to get a finger and wipe inside for a thorough clean.

Cast Cooler: This is a plastic wrap that connects to your vacuum. When the vacuum is on, itsucks air through the cast drying in and cooling it. A warm wet cast (from sweat or urine) is going to allow bacteria to build up and stink. We love our Cast Cooler but some people say their babies hate it due to the noise of the vacuum. Only you know your child, but if you can get them used to it – DO IT! (you can google it). Maura loooooves it. We use it nightly and she ‘reads’ while I run it. The photos are from the very first day in our cast and she was exhausted.

Hair Dryer: Some people say they use a hair dryer instead of a cast cooler – it doesn’t compare. I DO use one daily, but more for damp skin and creases than the cast.

Toys/Books/Entertainment: Diaper changes can take much longer than they used to. Once you get the hang of it, they aren’t bad – however, if you need extra time to clean up or re-tape etc. Babies get bored. I watched a 40 minute youtube video (I fast forwarded some) in which a lady demonstrated changing and taping and this and that and her child just stayed there…. that is NOT my kid! I form a toy barrier to keep her entertained because within a day – our changes looked like her naked butt scooting away while I chased her on my hands and knees! I have a mat with a blanket over it on the floor. Her knees are too wide to put her on her belly on the changing table.

Now for the Method:

Some notes:

*We have a larger diaper area than many other casts I’ve seen. For smaller spaces, people recommend “Hip sticks” – basically a stick that helps hold the diaper smooth while pulling it through a tighter space. I can’t speak for them – but many do.

* As our cast has loosened, we had some leaks at night. Nothing major, I can prevent it by pushing diaper #2 over to the side we tend to leak on…

* You WILL HAVE TO IMPROVISE… no one else’s system is going to be perfect for your kid and your cast. Knowing what works for others gives you things to try until you do find what works.

 

 

 

 

Spica life, Week One

One week down, four weeks and 5 days to go… until the count down starts over for another 6 weeks. We scheduled our cast change for December 21st. At least we’ll smell nice and fresh for Christmas!

I’m trying really hard to embrace each day, and not wish it away, but people were right when they said this would be hard. It breaks my heart to see my baby frustrated or uncomfortable and not be able to do anything about it. I’m tired from the middle of the night diaper changes that I thought were over after the newborn stage, I’m sore from the constant holding of an awkward 20+ pound baby who doesn’t want to get down on the ground anymore, I’m tired from the stress and the emotional roller coaster of Spica life. At this point, the absolute hardest thing is not being able to snuggle. Maura usually lays on my lap, with her head against my chest and dozes into a nap. With the cast, we can’t get that close position down and trying usually ends up with an over tired, frustrated, screaming baby who just needs to be held tight – but can’t be. It is getting easier though.

img_6527After a little experimentation, and necessity, and buying a million different sizes and types of diapers, I have a system of diapering that is working for us. It’s held up impressively a few times, and makes me feel ok spreading out the changes a little bit longer over night. If she goes down at 7pm, I can change her once about 12:30/1am and then not again until 5:30/6 when she wakes up. I think I’ll do a full post on that soon, once I’m really sure it’ll hold up.img_6529

We purchased a Cast Cooler. It attaches to your vacuum, and basically sucks air through the cast to cool it and dry it. The idea is to reduce heat/moisture reducing bacteria and odor. I was nervous about the noise of the vacuum, but Maura didn’t seem phased. She actually smiled at me, and put her head down to relax!! I consider this a success AND it dried the cast well after our first accident.

img_6512Breastfeeding is NOT a comfy as it was. But it’s doable. I was worried about it pre-cast. So I’m including a photo, just to show those who are worried how we manage it. (haha the sock! We hadn’t yet figured out how to keep that leg warm… we’ve since gotten some better socks.)

Maura mastered the army crawl within 48 hours of being placed in her Spica. Although she tires very easily, it makes her happy that she can still maneuver around and find her toys. (I wrap a soft blanket under her legs when she’s on the floor, and she zips around really well – also saves the hardwood).

Every day, Maura acts a little more like herself. She’s regaining her confidence, she giggles often, naps well.

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This face sums up week 1.