Tomorrow, Neola will have been in a hip spica cast for hip dysplasia for six weeks.
She only had dysplasia in her right hip, so her bright pink cast is not symmetrical — it’s down to her toes on her right leg, but only down to above her knee on the left. It also goes up to about her armpits in the back, but curves down in the front, low enough that we can see her belly button. Tomorrow she goes back to the doctor to get a new cast (there is a small possibility she will go straight into a rhino brace, but we are mentally preparing for another 6 weeks in a cast.)
I did a LOT of research online before her surgery, so we haven’t had to figure out much on the fly, which I’m thankful for. But just like having a baby, there are things I thought we would use a ton that we haven’t used much, and vice versa. So to parents who are preparing for having a child in a hip spica, I would recommend waiting to buy most things, unless you buy it from somewhere that you will be able to return it if it doesn’t work.
Diapering
This was one of the most daunting things to think about before her surgery, but honestly, it’s not that bad. You get a routine and comfort level with it, and figure out what works and what doesn’t. Her cast has gotten wet a few times (the hair dryer on the cool setting took care of it), and she’s had two decent blowouts that took a while to clean up, but changing just pee diapers is overall very similar effort-wise to pre-cast.
What has worked best for us with how small the diaper opening is in Neola’s cast is 4 steps (this is a fairly common way to diaper in a spica, so if any of this is confusing, I’m sure you can find other resources out there with more information):
1. Perimeter Diapers — We cut premie or newborn diapers in half and tape the cut end shut. We like using 3M Durapore or waterproof adhesive tape. Pull or cut the tabs off the diaper and line the edge of the diaper opening with them, absorbent side facing the skin. Tape the cut/taped end to the outside of the cast. (Our hospital lined the diaper opening with waterproof tape before she came out of surgery. With all the taping and untaping of the perimeter diapers, the original waterproof tape was starting to peel up, so we added a layer of bright pink duct tape over the waterproof tape, just on the outside of the cast.)
2. Incontinence Pad — We have found these to be better than diapers in the cast opening because they are longer and skinnier than diapers. (I read a lot of people just went down a diaper size for diapering in the cast, but with the way Neola is casted and the way the opening is cut, bigger diapers just don’t fit that well.) Because Neola’s cast comes down in the front to just below her belly button, we are able to push/pull the pad all the way up the front of her cast, with 2-3 inches to fold over the cast in front (held in place by the big outside diaper). Then there’s 3-4 inches to tuck in back to cover her bottom. We have tried Poise Regular Length Level 6 and Amazon Essentials Level 6. Both have worked well, but we like the Amazon ones better. You do have to buy quite a few at one time though.
3. Diaper Insert — Most of the time, we also put a newborn diaper over the incontinence pad just for extra protection. It’s not completely necessary though, so sometimes during the day we skip this step (especially when using the Amazon incontinence pads).
4. Big Outside Diaper — Size 7 diapers fit the best over the outside of Neola’s cast. I had read that another mom used cloth diaper covers over the outside of her child’s cast because then they could just wash them, and they were cuter than a disposable diaper. I bought some, planning to do the same thing, but they just weren’t big enough. (Single tear.) But since I bought them on Amazon, I was able to return them.
Other helpful things for diapering: hair dryer, penlight, and fabric scissors for cutting diapers
Bathing / Cast Care
We have used bath wipes from the hospital, as well as Mustela No-Rinse Cleansing Water for cleaning Neola’s exposed skin. Both work fine. We’ve gotten away with only having to actually wash her hair a couple times so far (once was after she threw up and it got in her hair — but thankfully the puke didn’t get on her cast!).
We haven’t had a huge issue with her cast smelling. I mean, it doesn’t smell like a flower garden, and there’s a faint urine smell, but overall, it’s not too bad. I have spritzed the outside of her cast a few times with water and lemon essential oil, then drying it immediately with a hair dryer.
We initially had issues with her cast getting wet (before we started using incontinence pads) and so we bought a Cast Cooler, thinking that would be the ticket to keeping her cast dry (she was often sweaty also when it was still hot outside). But we ended up returning it. It was too big to fit flatly on Neola’s cast anywhere, which meant it didn’t work properly. We haven’t really needed it anyway. The hair dryer works just fine, and we use it at least once a day. Neola enjoys the sensation.
In the past week (knowing that we were close to a new cast), I’ve also let her crawl around in woodchips, pea gravel, and dirt. I just put a sock on her casted foot to keep the stuff from getting in there. Her uncasted leg is often quite dirty.
Eating
I heard about the Nuby Easy Go Lightweight Booster Seat from several other spica parents on Facebook during my research, and bought it ahead of time from Amazon to try it out before Neola’s surgery. We weren’t sure that the belt straps would be long enough to fit around her cast, but they are!
We have enjoyed this as a way for Neola to sit with us at the kitchen table and eat, but she is able to push against the table and tip her chair back. Because we have three other kids and can’t just sit at the table with her all the time while she’s in the seat, we moved our kitchen table so that her chair is pushed against the stair railing, so that she can’t tip her chair over. This seat is also easy to bring along to restaurants. I wish we had more than one!
Neola eats all the same foods now as she did pre-cast, with the exception of super messy ones like spaghetti. None of my kids have tolerated bibs, and Neola is no exception. I bought a bib that had full-length sleeves, thinking that maybe that would help, but she still hated it. Thankfully, she has tolerated a bib “skirt” (it’s really just a wider-than-normal apron that we made ourselves) that we tie from her waist all the way around to the back of the chair. Her shirts still get dirty, but her cast is protected.
Thankfully we haven’t had any issues with Neola being constipated.
Sleeping / Nursing
Neola has been a fairly terrible sleeper her whole life (waking up 4-5 times a night) so thankfully, being in a cast hasn’t made it that much worse. I still nurse her to sleep for naps and bedtime, and then when she wakes up during the night.
At first, nursing seemed a little daunting but I’ve figured out what works for us. The glider we have in her nursery has fabric sides that are roomier and less rigid than a normal recliner so her right leg (the one that is fully casted) can fit down in the side when she’s lying on her side to nurse. When I nurse her on my floor bed in her room, I make sure that her right knee is resting on the mattress and her right foot (the casted one) is hanging off the side of the mattress (but not so far that her foot is touching the floor).
When I need to switch sides when nursing her, I’ve found that spinning her around on her back with her feet/cast away from me is the easiest way. (But that only works when I’m on the floor bed with her.) Otherwise, I have to grab her under one armpit and under one leg, sit her up on my lap, and then switch hands to lay her down facing the other way.
For sleep, she is on her crib mattress next to my mattress on the floor (this is what we were doing pre-cast and it actually has worked pretty well during the cast—we also use her mattress as a diaper changing station). Once she’s asleep, I place her on her back with her butt between two pillows — one is under her head/torso and another under her legs. She doesn’t love having to sleep on her back, but she’s doing pretty well with it considering. Since she wakes up so often on her own during the night, I haven’t had to worry about intentionally changing her position during the night.
For naps, she still likes to sleep while nursing, and we have been able to get her to fall asleep in the wagon. She didn’t initially like the Wallenberg car seat that we are borrowing from the hospital but she’s adapted to it, and will still fall asleep fairly easily in the car if she’s tired.
Activities
Believe it or not, we are finding the activity/entertainment aspect of her cast the hardest part. I’m sure there are unique challenges at any age, but with Neola only being 16 months now, she’s not interested in a lot of things that she would be if just six months older: playdough, coloring, screen time, board games, singing, reading books. She just wants to chew on the books, eat the playdough, break the crayons.
So what do you do with a casted 16-month-old? I’m sure these things won’t work for every child (because every cast is a little different) but these have worked for us:
* Walks / Time Outside — Neola fits nicely on our Radio Flyer push trike, Step2 rollercoaster, and Radio Flyer fabric-sided wagon. She can swing by herself or with us on our circle swing and hammock chair swing. She also fits nicely in our ErgoBaby carrier, and we borrowed a Stokke carrier from a friend that allows to her face out.
* Toys — we rotate toys every week or so, because she gets bored quickly. She has enjoyed puzzles and books (on her own) the most. She doesn’t actually do the puzzles — just plays with the pieces.
* Sitting — We made a Spica table and modified a Bumbo seat, so those are two spots she can sit to play with toys. The Bumbo tray doesn’t work anymore, but we have a big lidded tote bin that is the perfect height for her to use as a table when in the Bumbo. We also use it for storing a lot of her toys. We read a lot of people say that they used a bean bag chair a lot, but Neola hates it. She doesn’t not want to be laying down at all. Thankfully we didn’t buy a new one — we tried her in bean bag chairs we already owned.
* Crawling — Neola figured out how to crawl around a little by about week 2 of the cast. It’s hard work so she ends up kinds of sweaty, and can only do it for about 15 minutes at a time, but she loves this freedom.
* Getting out of the house — Whether going shopping or to a park, Neola enjoys getting out of the house and people-watching. Bonus if it’s a park that has an adaptive swing she can fit in. I also signed her (and me) up for an ECFE class on Mondays, which will give us something new to do.
* Fine Motor activities — we’ve tried a variety of activities that I found online: rescuing small toys from underneath painters tape, pulling pipe cleaners out of a colander, pushing pom poms into a spice jar, mess-free “painting” with finger paint in a ziploc bag. The painting was a total flop. The pipe cleaners were too easy. Painters tape was too until my hubby figured out more elaborate ways to tape the toys down. The only activity that she really still enjoys is the pom poms in the spice jar, and recently, popsicle sticks in a water bottle.
* Eating — Thankfully Neola loves to eat, so we feed her 5-7 times a day. It does get tricky to figure out what else to feed her, though, with all that eating! Her favorites are fruit, applesauce, string cheese, salami, and crackers. Oh, and chocolate.
If she gets recasted tomorrow, we are also planning to buy her a Wheely Bug ride-on toy and modify her Little Tikes swing, so that she has a few more options of activities.
Clothing
Before her surgery, I went through all the 2T and 3T clothes (1-2 sizes bigger than what she had been wearing) that we had saved from Neola’s older sisters, took out all the things I thought would work, and washed them. I brought several things to the hospital in both sizes. I’m glad too, because in general, 2T things are just a little too small. We also discovered that regular shirts don’t work well because of how far her cast comes up in the back — they end up just getting bunched up under her armpits.
So I ended up buying about 4 short-sleeve and 4 long-sleeve 24-month size onesies from Walmart (this fall, their Garanimals brand has some $5 bodysuits with stretchier fabric that have worked really well — the others with more standard cotton fabric just *barely* snap around her cast, though they do work too). Garanimals also has matching skirts for those, so I bought every color they had (a total of 4) in size 3T. I also bought four 3T bodysuits from Target’s Cat & Jack adaptive line (2 short-sleeve and 2 long-sleeve), but they were more like $15 each.
For bedtime, she wears the same things (minus the skirt), and we have found that a regular long-sleeve shirt stays in place okay if layered over a short-sleeve bodysuit. So we do that quite a bit too. Size 3T clothes work the best, but flowy/loose size 2T shirts and dresses work too.
We can’t get even super stretchy things up her legs to her bottom — everything has to go over her head — so bodysuits and skirts have worked really well. We’re going to need to figure out some new tricks though because fall has arrived in Minnesota! I bought some girls-size knee-high socks from Walmart but they were too tight 😢 so I need to figure out something else.
Church Nursery / Childcare
We didn’t need to worry about daycare with Neola since I stay home and homeschool our older kids, but we did want to be able to put her in church nursery on Sunday mornings and for Bible Study Fellowship on Thursdays.
So I made a sticker to put on the back of her shirt that says to not pick her up by the armpits but to make sure to support under her cast. (I just printed a word doc onto full-page label paper and cut them into squares.) We also bring her modified Bumbo to the church, and mention that she can crawl around some, so she doesn’t have to be held the whole time. We tell them to not worry about changing her diaper, and if she’s smells poopy, just page/text us. So far it has gone well with her in the nursery!
Overall
The cast-care aspect of this experience hasn’t been as bad or hard as I had feared, but the rest of the situation has been extremely challenging — mostly because she’s our fourth child. We can only put her down for 10-15 minutes a few times a day. Otherwise, she wants to be held and entertained, and even then, she’s sometimes just frustrated that she can’t do what she really wants to.
Getting school done with my older kids while Neola is around is practically impossible. My wild third child and only boy goes to preschool three days a week. My husband brings him to school and takes Neola along, so I have 45 minutes in the morning to do school with our oldest two, then Travis can usually take Neola in the afternoon for another 30-60 minutes.
Our health insurance covers a “home health aide” so we have been trying to get something going there, but it is [not] surprisingly hard to get anything done with these four kids, who are here, all day, every day. We have survived the first six weeks, but I do think we are going to need to make some changes in order to survive the next six if Neola gets recasted.
Anyway, that has been our experience with a young toddler in a hip spica cast!
Life, Really Blog 