Fashion Plates

As many parents have experienced, one of the major perks of bringing a new baby home from the hospital, besides the crying, eating every 2 hours, and experiencing first hand all of the wonderful things that can come flying out of every orifice, is dressing your new little bundle.  If you were a child like me you dressed your dolls constantly, entertained yourself for hours picking out their outfits, and baby clothes are even cuter than doll clothes so the anticipation was killing me.  But when we found out about Aleck’s condition I found myself worrying about what I could possibly put him in.  I can’t bend his arms, didn’t know if I could bend his legs, and then they strapped on a Pavlik harness (click to see picture) which made the idea of getting him dressed at all a total nightmare.  My mom was a real trooper, going out and buying every single gown she could find so we could just slip them on over his head, but even gowns were difficult since we couldn’t bend his arms, so gowns that snapped in the front became the wardrobe of choice in our house.  Though for the first week he was basically just naked except for his diaper.  To sleep he did fit well into those adorable polyester sleep sacks and found myself cooing over how cute and cuddly and how he looked like a “normal” baby in them.  Sometimes I would keep him in them all day long since they were just so easy to use and hid the entire harness.

After removing the harness we began the serial casting on his right leg for his right foot.  The cast went all the way up his leg, and after the casting he was fitted for a hip splint to solidify the left hip in place.  Again, gowns were the main option with a onesie underneath.  No pants, no zip or snap up outfits with feet, nothing with feet.  Once we got used to the splint and cast we found that some jumpsuits and larger footless snap outfits woud mostly snap around the splint giving us another option besides the gowns for Aleck.  This was a huge step up while we were running around Chicago in November & December to have something warmer and of more substance to haul him around him.  I even found myself falling in love with these hilarious 70’s style jumpers just because it was actual clothing on my new baby. Legs seperated by fabric, even though one was covered in plaster and the other one shot out to one side.  Best of all these outfits hid the big ugly plastic splint.  If you just looked at Aleck, at first glance you couldn’t see everything he had weighing him down.

Then at the end of January, when they removed Aleck’s final cast from the tendon cutting, Aleck got his grey shoes, his Ponseti Brace (click to see pic), which are little sandals with buckles that have a bar that attaches to the bottom.  We were finally free from the hip splint and the casts, but the brace proved to be another in a series of wardrobe challenges.  Pants were now an option, but they had to be footless and in order to prevent me from having to remove the brace for every diaper change, they need to have snaps up and down the inside of the pants.  Except for jeans and the occasional pair of baby khakis, baby pants don’t have snaps up and down the inside.  We were back to footless outfits that snapped all the way up and down, long sleeve onesies that had snaps just between the legs, and as Aleck was getting larger we even had to be careful with the onesies themselves.  They have to stretch enough so we don’t have to bend his elbows to get him in them.  Craig still takes them off by pulling them down over his tush instead of over his head.  I’ve found some that have snaps at the color, or even better snaps down the back, and there are some short sleeve onesies that snap all the way up and down, the easiest of our wardrobe options.  Thank god for my OT!!  She offered to modify a bunch of Aleck’s pants in different sizes, adding snaps to them, so we could have a larger wardrobe and not just have him in pj’s all the time, which are really cute but sometimes you want your little man to look like a well put together little man!

Then came the splints.  Some of the splints we’d had since January.  The active splints he would wear to play in, but they were small enough that we could push his sleeves up if he was in a long sleeve outfit.  Then we added the shoulder splints were weren’t really successfully implemented and napping splints to wear while he naps.  Napping or stretching splints are the ones that stretch out his fingers and have been working his wrists into a flexed position so they can be more of a use to him.  We didn’t have to really adjust wardrobe until we went to Shriner’s.  The OT there took one look at Aleck and went right to work on elbow splints.  These will be adjusted regularly gradually increasing the bend of his elbows over time.  They don’t fit over Aleck’s clothing so have to be worn with short sleeves or I have to pull his arms out of his clothes to wear them.  He has been wearing them for about 3-4 hours a day but now the OT wants us to increase the wearing to 6 hours a day which is practically every waking hour he’s not in a bath.  Since he originally got these splints in March we had to make yet another wardrobe adjustment.  Goodbye long sleeve onesies, goodbye long sleeve shirts, and anything else that didn’t give me easy access to his full arms.  Instead I opted for short sleeve outfits and then layered with sweatshirts or sweaters to give him extra warmth but allow me the easy access to those sweet little bows.

While we acclimate time and again to each new phase of Aleck’s treatments, figuring out with every new step what he can wear and what he can’t wear, we’ve gotten wonderful donations from friends of hand me down clothing from their baby boys.  What I’ve learned really quickly is that hand me down clothing is AMAZING.  These babies grow so quickly they barely wear any of it out so most of it is in really good condition.  Plus my friends have terrific style so it’s even more fun to open up the bags and boxes, imagining Aleck in these adorable outfits.  On the flip side it’s also a bit heartbreaking as I continue to pile up clothing that I know he can’t and won’t be able to wear.  The collection of footsie pajamas alone was gut wrenching when you first imagine how adorable and cuddly he’d be in all of these outfits, and then have to toss them aside hoping that there will be another baby in the future who won’t have to go through any of these fashion nightmares.  I feel like I’ve started my own version of a hope chest of clothing for a potential future baby.

Now the greatest challenge is in our sites, and I have to say, I’m starting to get a bit freaked out by what we have to look forward to in August, Aleck’s hip surgery.  On August 29th Aleck will be having his hip surgery at the new Children’s Hospital on Chicago Ave.  The surgery itself will take about 3 hours total and we will be in the hospital for three to four days.  Most of the stay will be about pain management, focusing on making Aleck comfortable and keeping his pain to a minimum.  From the sounds of it he’s going to be hooked up to some really good drugs while we are there and then we’ll have some softer versions of these painkillers to take home with us for the first week home.  Having a baby in constant pain is a very frightening thought to consider and I know it’s going to be exhausting trying to keep him comfortable.   But even more terrifying than the pain is the cast he’s going to be in for the 6 weeks after the surgery.  According to his doctors they will be putting him in a Spica cast (click to see pic) which will go up to his midsection, all the way down his right leg and on his right foot to keep the fixed club foot in place and then probably half way down the left leg.   Yes, clothing is going to be very limited.  Large onsies and t-shirts will be about all we can put on him, and like always they have to be very stretchy or have snaps on them to allow for easy fitting.  But wardrobe is only one very small part of what we will need to be ready for this operation.

The biggest hurdle is the car seat.  According to my sources we should be able to get a loaner from Children’s since there is only one type of car seat that accomodates the Spica cast.  It’s made by Britax, sold by a medical supply company and retails for $500.  The good part is that it will still be useable once the cast is off, but most likely we’ll be renting one from the hospital.  Secondly, what else can we do with Aleck that’s not just him lying down on the floor all the time.  He’s almost sitting up now so by that time he’ll be fully acclimated to sitting up and maybe he’ll have figured out how to move himself around the house by that time as well.  We’ll have this fabulous baby who’s only goal will be movement and we are putting him back in place.  I’ve been reading blogs and thoughts from other parents who have been through this and they’ve found having a bean bag chair to be really useful.  There is a company that makes these special table chairs just for kids in these casts (http://www.ivyrosespicachairs.com/), many of these kids have to be in these casts for months at a time…not so sure why we are so lucky with just 6 weeks.  The tables allow the kids  and babies to sit upright so they can use their hands and arms to do activites while stuck in the cast.  Of course this brings up a whole other host of concerns, like how much will Aleck be able to do with his hands and arms by the time he goes in for this surgery.  Obviously we’d like to get him as functioning as possible and will be able to focus solely on the upper half of his body for those 6 weeks, but finding positions and ways of propping him up so that we can do these activities will probably be our biggest challenge yet.  He may not even fit into the stroller after he has the cast on so we need to think about finding a wagon and padding the hell out of it so we can take him for walks to the park, our favorite summer activity so far.   We haven’t ventured into TV or cartoon watching yet, and frankly I want to put that off as long as possible.  The OTs are concerned that once Aleck gets hooked on technology it’ll be harder to encourage him to play with his toys and engage in his therapies, so I hope that I won’t be turning to Elmo for help during these 6 weeks.  What I know for sure is that there will be a lot of books read and we’ll work on his page turning skills quite a bit.  Thank god for Dr. Suess!!!

The saving grace in all of this is that he’s not having the surgery until the end of August, August 29th at the new Children’s downtown.  Summer will be basically over, the major heat will be over, and he will have had plenty of hours enjoying my parent’s pool.  Hopefully I won’t have to follow some of the measures I read on blogs, cutting up panty liners and sticking them in the cast to absorb moisture, but I might do it anyway just to make sure Aleck is as comfortable as possible.  In the end the amazing part is how adaptable we’ve all become.  Everytime a different contraption, cast, splint, is strapped to my sweet little boy we both fuss for a few days, then it becomes a part of our routine.  We take his splints with us wherever we go and no longer have any anxieties about strapping them on in a room full of people.  Once again, it simply becomes our definition of normal everyday life, which as always, is still pretty far from “normal.”