Sunday, March 8, 2009

Dr. Roy Rubin Orthopedics

Throughout Kennedy's hip treatments we have been fortunate to have Dr. Roy Rubin and his staff taking care of us. Since her diagnosis Dr. Rubin has been patient and understanding with our concerns and frustrations, answering all our questions - often several times. He thoroughly explains Kennedy's treatments & options, explores methods to reduce the radiation she's exposed to, is gentle with Kennedy's exams - she even likes him, is a perfectionist in surgery (gave us a great cast), is reassuring during treatments, and his apts even run on time and aren't rushed (often spending up to an hour). Even more amazing, Dr. Rubin is always available via home & cell phone as well as email! We couldn't be happier with our doctor!

Just as wonderful are Dr. Rubin's staff. The physician's assistants, Amy and Mike, are always helpful and really care - returning calls, answering questions and stopping in to visit Kennedy during our apts. Also, Dr. Rubin's schedulers, Megan and Katie, are very helpful and always enjoyable to talk with - providing us with information regarding procedures and appointments. We are truly lucky to have such wonderful and caring people helping Kennedy during her hip dysplasia journey. Thank you for your continued support!

Friday, March 6, 2009

Helpful Hip Sites

Throughout our hip journey I have come to depend on a number of sites for information and support. I hope these sites help you through this journey as they have helped me.

Post Op Procedures

With Kennedy, each of her procedures have been done as outpatient since we wanted to bring her home and make her comfortable. I really felt that staying in a hospital would freak her out and do more harm than good. Therefore, following each procedure, there are some requirements before we can leave. Although our experience has varied slightly with each time we are usually in recovery for about an hour - a little longer with the open reduction. The nurses monitor Kennedy's oxygen levels, blood pressure and breathing (listening to her through the stethoscope). She's usually hooked up to the IV until they feel she's hydrated enough and it's usually encouraged for her to eat something light - whether she nurses or has a bottle of apple juice. Also, during this time Dr. Rubin and the anesthesiologist brief me regarding how the procedure went, what to expect and when to call them. Overall, the post op procedures are fairly simple and we're out of there pretty quickly - thank goodness!

Going to Sleep!

Each time that Kennedy has been put under has been roughly the same experience. For her comfort and mine, I have accompanied her (and her ribbon blanket) to the operating room and participated in the process. With each procedure, I sit in a chair holding Kennedy while a gas mask is put tightly over her face. She has yet to enjoy this so I sing and talk to her while she cries into the mask. It usually takes about a minute or less for her to relax and fall asleep. We then transfer her onto the bed and I kiss her on the cheek.

*An important note here is that they will start the IV (& monitors) after you leave the room. First they will try to start an IV in the hands, then in the foot or the head (sometimes the dr prefers the head over the foot since the foot location can interfere w/ the casting). During the recasting and the open reduction we were lucky enough to have the IV in her hand and it was put in her foot during the closed reduction. This last time (for removing the cast) the IV was actually placed in her neck since other locations were proving difficult. However, as freaky as that was it's still preferable (in my opinion) to the head. During each procedure the possibility of having Kennedy's head shaved w/ an IV really freaked me out - she's got such great hair!

As a mother, it has been great to be involved as they're putting Kennedy to sleep. I've always coped with situations by trying to educate myself and attempting to understand what is happening (thank you internet). Therefore I find this involvement theraputic and reassuring. Despite it's emotional toll, I would recommend that you take this opportunity if it is offered.

Post Procedure Swelling

One thing I really wasn't prepared for with the closed or open reductions was the swelling and discoloration that is caused to the diaper area. With both procedures Kennedy experienced swelling to her genitals, especially after the open reduction. With these procedures you can expect for some swelling to occur, usually on the affected side, that can last (in my experience) up to a week. With Kennedy's closed reduction the swelling was mild and only lasted two to three days but the swelling from the open was much more significant, making diapering difficult for the first couple days. But, after four to five days the swelling resided and was almost gone by a week's end.

The first three to four days following the open reduction, Kennedy was so swollen that I was unable to stuff the inside diaper up the front opening. During this time I used panty liners to line the cast opening and, although I don't recommend using them regularly, they were a big help in protecting the cast by providing a barrier between the cast and her skin. Considering the diarrhea that Kennedy had post op, the panty liners were a real blessing the first week. So, although I discourage their use regularly they were helpful in avoiding disasters immediately following surgery.

Open Reduction

Overall, our experience with Kennedy's open reduction was better than expected. First of all, the surgery was very long - about 6 hours from start to finish. Boy was that nerve-wracking! Kennedy's hip proved to be most uncooperative and actually fell out of socket during the first casting. Then Dr. Rubin wasn't happy with the second cast, so Kennedy had a total of three casts during that time. When she was out of surgery and in recovery Dr Rubin explained to us the difficulties of the procedure and how she may be facing a longer casting time or an additional cast after this. Then, I was able to go visit Kennedy and console her as she was waking. She really wasn't too uncomfortable or distressed as she was waking and we were able to leave about an hour & a half later. I will say I was so concerned about her being in pain that I was diligent about administering medication (Tylenol w/ Codeine) as guided for the first 3-4 days. Upon leaving the surgery center we rushed to Roseville Imaging for Kennedy's CAT scan which showed positive results for the hip's positioning.

The first couple days Kennedy was real tired - with the anesthesia slowing wearing off and under pain medication. She didn't appear to be uncomfortable during the day and was content as long as she was being held. However, first nights were pretty grueling. Despite how groggy Kennedy was she wouldn't actually sleep - just lightly rest. Therefore, I was unable to put her down and we spent the whole night with me holding her in the rocking chair. However, it slowly got better. During the first night I could only put her down for 15 minutes before she'd start crying but the second night improved to 30 minutes and the third night she was able to sleep on her own for a couple of hours. After that improvement I started reducing the Tylenol she was receiving, administering it mostly in the evenings and in preparation for night. My husband was absolutely wonderful during this time, caring for Kennedy in the evenings and mornings so I could get my sleep and be ready for whatever the night would bring.

By a week's end I would say that the swelling in the diaper region had gone down to almost normal and she was entirely off medication. Kennedy also adjusted well to being back in a cast and regained her happy disposition. Additionally, we were glad to pass through the experience without any infections or surgical complications.

Friday, February 27, 2009

Waking from Anesthesia

So far Kennedy has had 3 experiences with anesthesia (3 more than I've ever had - poor girl)! I wanted to dedicate a post specifically to anesthesia since each experience has been different - varying from calm and relaxed to frantic and terrifying. Therefore, don't take your child's initial reaction post surgery as what life will be like for the next couple months or you'll be jumping off a ledge. With each procedure, once Kennedy was detatched from monitors and IVs, dressed and being carried out the door she immediately relaxed and was more like her normal self.

A possible side effect that we've experienced is a raspy throat. With Kennedy's first procedure she had a real raspy voice/cry for the first two days. However, this really didn't seem to bother her and, aside from me fearing she had caught a cold, it was forgotten pretty quickly. For the following procedures I mentioned it to our anesthesiologist and we haven't experienced it since.

Closed Reduction Procedure

Kennedy's first hip procedure was done on Nov 24th 2008 as an outpatient procedure and it was a closed reduction and spica cast. We arrived at the Sac Surgery Center at 6 am and after she was prepped for surgery (blood pressure, oxygen levels, weighing, betadine scrub, baby gown and I don't remember what else) we were ready to begin at 7 am. I was able to accompany Kennedy into the operating room and assist with her being put under by comforting her while he pressed the gas mask to her face.While being gassed she was very unhappy and cried, but it only lasted a minute and then she relaxed (still clutching her ribbon blanket). We then laid her on the table and I was brought into the waiting room. I definately advise bringing an assortment of materials (books, magazines, breast pump) to occupy youself as the wait is grueling.

Once Kennedy was out of surgery and waking up, Dr, Rubin came and told us that the reduction had gone well and he was happy w/ the results. He then took me into Kennedy's recovery area where she was pretty upset . Her throat was very raspy while she cried but when I was able to pick her up (it's pretty awkard at first) and hold her she calmed down quickly. We were probably in recovery for about 45 minutes before the nurses started reviewing cast care with me and getting us ready to leave. Once we were ready I was able to put Kennedy's first spica outfit on (start with a really easy one!), give her a snuggly blanket and leave! Kennedy was still pretty heavily sedated so she slept all the way home and was pretty relaxed and comfortable when we got home - she even slept for 2 hours, waking up right in time to leave for our CAT scan.

Kennedy continued to be drowsy through the evening, which I believe made the initial adjustment easier on us all. At bedtime I started with the Tylenol w/ Codeine dosing to make sure she was comfortable and she slept well those first couple nights. After the first couple days I discontinued the Tylenol use and she started having some really bad nights. Therefore, I suggest continuing to use medication during the nights for about a week following any procedure since discomfort is always harder to ignore at nights then with the daytime distractions.

As with just about anything the time leading up to the procedure was worse than the actual experience. I'd had visions of never sleeping again, my cute funny girl becoming an unhappy monster, and of not being able to put her down - ever. Although we have experienced days like this, life in the spica has been so much better than I had imagined. I remember sitting with Kennedy the evening of the closed reduction and being just amazed and relieved that she was actually smiling and playing with her "Get better" balloon. If these past 4 months have taught me anything it's that life really does go on.

Sleeping Positions

In order to help Kennedy sleep comfortably I padd portions of her crib according to her cast position. First of all, I layer 5 or 6 flannel receiving blankets to support her back and head where the cast ends. Then I fold one of Kennedy's soft and cushy blankets in half and layed it over the receiving blankets and down where Kennedy lays. I also use more receiving blankets or towels to prop up her loose left leg and under her right foot so she doesn't dangle where the cast tapers off. With each different cast I have to play with the positioning of the legs and propping of towels but once I get a good position it is easy to continue. This method of propping her up really helps her sleep better and be comfortable through the night, especially since she really can't move.

Although Kennedy has never been a tummy sleeper I realize there are many babies and children that prefer sleeping on their tummies. Several parents on the message board have had this problem and have posted pictures of their kids sleeping on their tummies and how they were able to make it comfortable for them. If your child prefers sleeping on her/his tummy I recommend you visit this site for ideas on how to make this possible.

Thursday, February 26, 2009

Dressing for a Spica Cast

To tell the truth, clothing is one of the hardest issues I had (and still have) with the dastardly spica cast. Kennedy had just grown into the 6-12 month size and had so many cute clothes that it still kills me how little she's gotten to wear them. I often joke that once we're done w/ this we'll have a spica clothes bon fire in the back yard - anyone that's gone through this is welcome to join us!

However, there are answers to the spica clothes question and once you figure out what your child can wear it's not too hard. First of all it, again, depends on your cast. With the legs positioned spread in the spica cast all clothing must be snapped on or put on over the head. Also, since Kennedy's cast has the stability bar it's more difficult than other casts. When she was first casted she was wearing size 6-12 months and I found that buying clothes size 12-18 months is what fit the cast best. I had to roll up the sleeves but it worked for the legs, bottom and chest area. For daily & sleep wear (in the winter time) I used fleece sleepers that snapped up entirely up the legs and the front - these proved the easiest to take on & off. But, they really weren't all that cute. So, for occasional cute days I got a couple pairs of overalls that had snap up legs and some cute onesies so Kennedy had her dress clothes that were a little harder to get on - but still really adorable!

For spica casts without the stability bar dressing is much easier - mostly just clothes in larger sizes that go on over the head since no outfit will go on legs first with the legs spread as they are. A lot of people also use baby legs under dresses or with onesies as a cute cover up over the legs.

For clothing made spicifically for spica casts and pavlik harnesses you should visit You may also visit the message board for more clothing suggestions!

DDH Car Seats

It really seemed to me that everything changed once Kennedy was diagnosed with DDH - including her car seat! Of course when Kennedy was born we'd gotten the cute little car seat that snapped into the great luxury stroller. It quickly became obvious that it wasn't going to work anymore so we needed a new car seat that would accomodate her cast. You should first check with your doctor for his/her preferences but there are a couple car seats that people have used that have been recommended. Kaylee's doctor, Dr. Rubin, recommended the Sunshine Kids Radian 65 and Radian 80 and it has worked great for us but here are a couple of the car seats that people have used and recommend:

Sunshine Kids Radian 65 and Radian 80, Britax Hippo (made specifically for hip dysplasia) and Britax Marathon

Tummy Time

The possible tummy times will vary wildly depending mostly on the style of spica cast that you get. As you view people's experiences on the hip baby message board you will notice that some children are decidedly immobile while other kids are crawling around and even attempting to walk while in their spica casts. With Kennedy she was most definately immobile. She hadn't been crawling when she was first put in her spica at 9 months so she didn't know what she was missing - which probably made the adjustment a little easier. Also, with the stability bar connecting in front of her knees she would have been like a little stink bug if I'd laid her flat on her tummy. However, even with these difficulties we did have a variation on tummy time. I would lay Kennedy over my leg (similar to during diaper changes) or over some pillows with toys in front of her for her to play. Although she had never liked tummy time as an infant she enjoyed this play time and difference in both view and position. It also made her a little less dependant in her play time which she seemed to enjoy. I would certainly advise continuing some kind of tummy time (depending on what your cast will allow) to provide different entertainment as well as continuing to use some of the muscles exercised while in this position.

Kennedy's Blog Mission Statement

Why am I doing this?
In early November 2008 my 9 months old daughter, Kennedy, was diagnosed as having Developmental Dysplasia of the Hip on her right hip. I was obviously shocked and distressed. As this journey began I was worried, frustrated, terrified and mad - at what Kennedy and I were about to experience, how complicated life was about to become, how unhappy I thought Kennedy would be...everything. However, through time I discovered the resources I needed to move foward, in the form of emotional support through the hip baby message board as well as the necessary gear to keep Kennedy entertained and happy. As life has carried on, I want to help impart some of my successes (and failures) to other parents currently experiencing my same concerns. I hope you gleam some useful information from my experiences, and if nothing else know that you're not alone and that the light at the end of the tunnel isn't always attached to an oncoming train! Good luck in your own hip journeys!

Kennedy's History

Kennedy was diagnosed with mild DDH (Developmental Dysplasia of the Hip) of the right hip in early November 2008. By Nov 24th she'd had a closed reduction and was put in a spica cast with a scheduled cast change five weeks later on Dec 29th, with an expected 12 week total cast sentencing. Her spica cast started just under the armpits and went to her left knee and her right foot with a stability bar at the knees. On Dec 29th we took Kennedy in for her recasting and although the procedure seemed to go well, her CAT scan the following day showed that the hip had slipped out of socket. We took Kennedy into the dr's office that afternoon, had the cast taken off and were scheduled for an open reduction just 3 days later on Jan 2 2009. Kennedy's open reduction was sketchy as Dr. Rubin was having difficulty keeping the hip in place while casting but she came out of the surgery with a great cast and her hip in a good position - thank goodness! Now Kennedy has been in this same cast for 10 weeks and is scheduled on March 13 to possibly have a new spica cast, a bachelor cast or a brace. Obviously we are crossing our fingers for the brace but, like everyone else, we'll deal with what we're given and move foward. Sometimes it's just about moving foward!

Feeding your Hip Child

For feeding I just used the bean bag chairs and, once I received it, Kennedy's spica chair. I also would have her daddy hold her in his lap at the breakfast bar to bring her up to a counter top. However, if I were doing it again I would purchase one of the possible high chair/booster seat options that are out there.

For your references, these are what others have recommended:

First Years On-the-Go booster seat, Stokke Tripp Trapp high chair and the Chicco Polly High chair

For more information you can search the message boards and ask around.

Wednesday, February 25, 2009

Entertaining your hip child

At the beginning of this journey, I was most afraid of having an unhappy baby. I wondered how I was going to keep Kennedy happy, how I was going to entertain her. I joked that at the end of her casting she wouldn't have bathed & neither would have I. With a lot of help we have settled into a routine that works for both of us. Kennedy is happy and I'm not too crazy (although it varies from day to day). A lot of parents recommend many different items to help entertain your child. One thing to keep in mind is what kind of cast you're getting. Kennedy's cast has a stability bar between her knees, attached to the front of the knees, which made it impossible to use many of the carriers that others recommend. However, I will mention what worked for us.

First of all, we bought a new stroller that would accomodate her cast. What you want to look for is a smaller stroller that has a shallow seat and will accomodate spread legs. However, you will learn that while something may accomodate one cast the next cast may require a little tweaking. With Kennedy's second cast her legs were a little wider spread so we stuffed a pillow into the back to push her further foward and then seat belted her in to keep her there. We kept the pillow there with Kennedy's third cast because the cast had more of a reclined position so the pillow kept her in a better strollering position. This stroller has proven to be invaluable and is well used. Kennedy always finds strollering outside to be fun and a great distraction so it has gotten us through a lot of rough days.

We also use two bean bag chairs, one in the bedroom area and the other in the living area, so I don't have to lug one around while carrying Kennedy. This is a great way to put Kennedy down with a toy so I can get a few things done (shower, eat, go to the bathroom...). In the beginning I would pull the bean bag chair up to a low coffee table so she could have some toys on the table and play. That was great although it was easy for her to slide from a sitting position to a reclining position and the toys fell off the table easily. Overall, the bean bag chairs are great and also invaluable for day-to-day living. I also used Kennedy's old bouncy chair from time-to-time although it didn't handle her weight well - I think she was just too big for it!

Probably the best purchase is our watermelon Ivyrose spica chair. We received our about 6 wks into our spica experience, with 9 wks to go. After 2 days with the chair I didn't know how we'd survived w/out it. The chair is built and designed by a mom with two spica girls and made to fit a variety of cast positions. I know the creator of Ivyrose spica chairs is undergoing some business changes involving upcoming federal laws so I'm unsure of the availability of her chairs but I highly recommend visiting her website and looking into getting one of her chairs to help you through this experience. Her website is:

Here are some items other people recommend:
strollers: umbrella strollers, Bugaboo Frog stroller, Mia Moda Cielo stroller,
BabyTrend Expedition LX jogging stroller
baby carriers: Mei Tai carriers, Ergo baby carriers, Hippychick hip seats
ride on toys - cars, trains - for spica casts without the stability bar

You can also visit and for more ideas regarding how to entertain your child while in their spica cast!

Trial & Error: My Diapering Nightmares!

Like everyone else, I've had my shares of troubles with the dreaded spica casts. Kennedy only had her first cast for 5 weeks and it was a dirty smelly one. I was embarrassed and sad to see how she was covered in horrible diaper rashes. I attribute my first cast failure to several mistakes - not regularly changing her diaper at night, not wiping out the inside diaper opening during diaper changes and not tucking the back of the inside diaper into the cast (it was a very tight opening - I should have used the spatula trick). After the cast change I became diligent in all these areas (hubby says I'm obsessed) and Kennedy is still smell-free after 10 wks in this cast.

My second mistake was lining the cast opening with pantyliners. Many women petal the opening with pads or moleskin and have great results. However, I was not one of them. I'm sure my technique was wrong but I would never mess with that again. In my experience, repeatedly taking the pads off caused the tape to tear away from the lining and the cotton inside the cast became soaked in urine and Kennedy just reaked. I was devestated that the cast stunk and all my efforts had been in vain. However, with a lot of time and effort it was fixable. I simply took all the tape off and used a blow dryer on the cool setting to dry out the inner lining (between the gortex and the fiberglass). Once the lining was mostly dry I blotted it with a little white vinegar on my fingers to neutralize the smell and then blew it completely dry. I did this while laying Kennedy over my legs for optimal working room (it was just in the back) and had many toys in front of her to occupy her while I worked. Luckily, Kennedy actually fell asleep since it took me about two hours to dry her completely and tape her back up. I am happy to report that although it was a terrible experience, we survived and you would never have known it had happened. Drying her out while blotting vinegar worked and she didn't smell after that!

Cleaning your child and the cast

Another tip for keeping your child clean and smelling good! I recommend reaching down the front and back of the cast daily to keep your child's skin in good condition and the cast clean. Every morning I rinse out four baby wipes in warm water and clean Kennedy's skin and the inside of the cast. To do this I lay Kennedy on her back across my legs to have access to the inside of the cast. With a warm rinsed wipe I reach down the top of the cast, pretending to tickle Kennedy so she'll find it fun, and clean her skin. Then I'll take another wipe and rub the lining of the cast to clean it out after the night. After I do the front I'll lay Kennedy across my legs again on her tummy and do the same with the back of the cast, reaching down and wiping her skin and the inside of the cast. I find this helps in keeping her skin in good condition and it's just another step to keeping the cast clean and smelling good. I use baby wipes because they are the easiest thing to reach down the cast, being strong and thin. I rinse them out first because I don't like the chemicals being on Kennedy's skin full time like that. I hope this helps!

Nighttime Diaper Changes?

Firstly, your success in keeping a spica cast clean and smell-free hinges on frequent diaper changes, ideally every 2-3 hours. During the day I have been diligent regarding changing Kennedy's diapers regularly and know this has lead to my success in keeping Kennedy clean. However, I have often faultered in changing her diapers during the night and this lead to utter disaster with her first cast. Although she was only in her first cast for 5 weeks (half the time for her current cast), towards the end of that time she smelled awful and I was very eager for her cast change. After the cast change I vowed to change her diaper regularly at night as well. During this cast, I typically change Kennedy's diaper twice at night. She goes to bed in a new diaper and then gets changed around midnight & 3 - whenever she wakes up during these times. I understand how difficult it is when all you want to do is sleep! To help me remember I would put the diapers and pads together before bedtime so it was all ready - I also didn't wipe the cast out then unless it was necessary so she would fall back asleep easier. Although many women say that nighttime diaper changes aren't needed, I believe it's important to have at least one diaper change to help prevent moisture from wicking up inside the cast because while the moisture can get everywhere, there are only so many places we can clean out.

Having said all that I never woke Kennedy up for diaper changes, she regularly woke up 2-3 times at night while in her cast. I do not know if I would have been as diligent if I was having to wake her up for it (it would have been hard enough to wake myself up!).

Mastering Diaper Changes

There are several different methods to diapering that people swear by but everyone will agree that diapering is one of the trickiest and most frustrating aspects of the spica cast adventure. After several failures (that I explain in other posts) I've settled into an approach that has worked for Kennedy and I for the past ten weeks. One of the most important steps is to reinforce the tape petaling around the cast opening to help prevent tears in the gortex lining and leaks into the cast material. The best way to do this is to petal the opening w/ duct tape (you can find colored tape at craft shops if you prefer), approximately 2" strips, starting with the inside of the cast and wrapping around the edge to the outside of the cast. This way, as you wipe the interior of the cast during diaper changes, you don't need to worry about the integrity of the lining. Otherwise, tears can occur in the lining and the original tape can come undone, leading to leakage into the lining and a smelly cast (see in "diapering problems" post).

Diapering should consist of a smaller diaper lined with a pad (either for female uses or inconstinence) that is tucked into the cast along with a larger diaper over the cast to hold it all in place. Personally, I prefer using Stayfree sanitary pads because they don't have wings to mess with and you can buy them in regular for daytime use and heavy for nighttime use. In my experience the inside diaper will be a size or two smaller than your normal diaper and the outside diaper will be a size larger. For example, Kennedy is now 1 year old, about 17 lbs and regularly uses a size 3 Pampers diaper. With her I use the size 1 Pampers Swaddlers diaper (extra soft against her skin) for the inside diaper and the size 4 for the outside diaper. Tucking in the inside diaper can be tricky and frustrating but it will get easier and everyone develops their own technique. An important tip is to try and smooth out the back of the diaper between your child's skin and the cast since this section is especially tight and bumps and wrinkles can be uncomfortable and lead to welts (that's why I use the softer Pampers Swaddlers). I've always used my fingers for this task but many people use the wide end of a skinny spatula if it is especially difficult. Typically, the outside diaper doesn't get much use and I usually only change it in the morning.

The best way to keep your child's spica cast clean and smell-free is to change the inside diaper frequently, ideally every 2-3 hours. This will help prevent the diapers and pad from getting overloaded and moisture from wicking up inside the cast. Another way to keep your cast clean and smell-free is with diligent cleanings at each diaper change. While changing diapers I go through a lot of wipes. To keep the cast as clean as possible I run a wipe the length of my finger all along the inside of the cast, as far as I can reach. This helps ensure that nothing has wicked up or crept up inside the cast. To clean out the back of the diaper opening I lay Kaylee face down over my leg (with a toy in front of her so she can play) while I run a wipe along the inside. This way I can fit my fingers inside and reach as far in as possible. Additionally, I then blot the inside with paper towel to keep the area dry and, again, to prevent moisture from wicking up inside.

I know there are a lot of other methods out there but this is what has worked with me. I welcome you to take from my methods what you will and adapt it to accomodate your own situations. If you have any questions or problems that arise I encourage you to post on the Hip Baby message board as there are many parents with spica experience willing to help!