Natalie and Lilie have not been to the doctor in a while, but every check up has been extremely positive. We are pleased with the progress. Both Lilie and Natalie seem to be progressing well. With Natalie being in Kindergarten this year, she comes home talking about how she played on the playground and done some rather active things such as the monkey bars, where you would think that the landing could potentially hurt. Instead, she seems to enjoy it and there is not very many complaints of pain.
We were slightly concerned a few weeks ago when she was talking about her legs hurting, and she pointed to her groin area. However, being so tall and having the same issues at her age, we don’t think it is related to her hip dysplasia. We think it is likely growing pains because she seems to be able to do very active things at times without any complaints at all while sometimes her legs hurt while simply sitting on the couch.
We hope that those that read this blog are still doing well and hope that you have learned something from our experiences!
This week we had a little scare. My wife finally had our fourth child and finally a boy, Caleb is his name. He was born on May 12, 2010. Caleb has been a good little baby other than he has a little bit of acid reflux and so he has been trying to eat a lot. Other than that he has been one of the best babies I have ever seen!
Anyhow, this last week we took him to one of his first encounters with his pediatrician. The pediatrician knows what kind of family history we have with DDH and spica casts so she definitely wanted to take a good look at his hips. She says that she wasn’t able to tell the condition of his hips for sure but he seemed a little bit tight and for that reason it was necessary to get him up to the specialist the following day to get checked out there.
The doctor there told us something along the same lines as the pediatrician. He said that he was a little tight and that he wasn’t confident that he would be okay. So yesterday was a little bit nerve wrecking knowing that we might have a third child with this hip condition. It was nice to be able to come here and just read some of your posts in the forums and to know that there are others still going through a lot of the same things we are.
Luckily, just a few minutes ago we found out that Caleb has normal hips and will not need a spica cast. Still though, we know what its like for those that aren’t so lucky. We will continue to pray and think about those that visit this website to find comfort in what they are preparing to go through or may already be going through.
Natalie recently turned 4. She is growing up so fast and she has no problems keeping up with other kids her own age. You can not tell that she has ever had any kind of surgery or condition. She is getting ready to play her first season of indoor soccer. She is very excited about being like her big sister and playing sports.
We will be taking Natalie back to the doctor in the next couple of months for a final evaluation on her hips. She is not expected to need another surgery, but at this check-up the doctor should make the final decision on whether she will need on or not. They like to do the surgery around the age of 4 that way they are not being held back in school.
Natalie is doing so well. I will update her progress as soon as possible.
Lilie is doing very well in her brace. She has made a lot of progress in the last month. She is now playing in the floor on her own. She can sit up just fine in and out of the brace. She actually likes being more independent. I think a lot of it has to do with always being helped during her 10 weeks in the cast.
She is starting to develop the muscles in her legs. She can stand along the furniture with a little support. She really wants to crawl, but she is still a little stiff on the right side, but she is becoming more and more flexible every day. I am surprised that she is already doing so well. I love to see her playing in the floor like a baby her age should be doing. I am looking forward to see her walking one day.
Lilie will go back in for more x-rays on March 17. She will probably get a new or bigger brace because she is growing like crazy. I will try to update as soon as we get more news on her.
On January 13,2010, Lilie got to have her cast off. She was in her cast for a total of 10 weeks. She made enough progress during the 10 weeks that her doctor felt that she did not have to stay in it for a full 12 like her sister. She was put into a hip abduction brace that she wears for 22 hours a day.
She did very well that day. She was a little stiff and sore though she was still a very happy baby. Lilie was scared to death during the removal of the cast though. I would just recommend being prepared for your child to scream during the cast removal. She did not scream because it hurt, but she was scared. The saw is very loud, and Lilie has never liked loud noises. If your child does not like loud noises, just be prepared for some screaming. She was just fine as soon as the saw was turned off.
The saw that they use to remove the cast does not have an actual blade on it like you see on a table saw. The cast saw only vibrates the cast apart. It will not cut skin, so you don’t have to worry about this hurting your child. The technician is very well trained. Cast removal is what most of them do all day long.
One thing to remember when your child is taken out of the cast, you will want to help support their legs still. Their legs will not have much muscle tone. Lilie’s legs are still very floppy compared to other children her age though she is catching up quickly. She is doing very well, but we did have to support her legs and upper body when carrying her around. One thing that I was told during our first experience was whatever age or skill level they are when they go into the cast, it will be the same when they come out. If they can not sit up before the cast, then they will not be able to sit up afterwords. This statement has been very true. Lilie and Natalie were both stuck at the age they were when they went into the cast. They did progress very quickly though.
Well, we finally got Lilie in for her cast change and actually received better news than we had expected. Originally, we thought we would be waiting until about February to get her cast totally off and changed to a brace. However, the doctor scheduled January 13th as the big day for getting her last cast off.
Anyhow, we have her in her second cast now. We took her in yesterday to get that done. They put some gas on her to make her go to sleep and gave her some other anesthesia (they didn’t do that with Natalie). As you can see in the picture, she wasn’t upset, she was just a little bit dazed still from being under the medication.
The new cast, which you can’t see much of in this picture, goes up higher than the other one. In fact, this one goes up almost to her underarms when she sits up. Also, her left leg (the one that did not have surgery) is out of the cast. The cast only goes down to the bottom of her thigh on that leg. She seemed really happy yesterday evening, but she has a worn spot behind her left leg for whatever reason. We’re hoping it doesn’t cause problems!
Overall though, it would seem that the spica cast changes are extremely easy on the babies. They may not like leaving your arms or may have a little bit of fear of going under any form of anesthesia, but it is actually a simple process. She was in and out within a few hours. Most of that time was just spent recovering from the medication.
Lilie’s hip is looking really good according to the doctor. We are looking forward to the day that she can get out of the spica cast!
Sorry, I know this is pretty lengthy. Unfortunately, we felt like when we were writing this that none of these things could be left out because they are all so important. We hope it is very informative, none the less.
What to Bring To the Hospital
I would not worry about bringing too much to the hospital with you. It will just make more for you to carry around. The hospital should have just about everything that you will need such as diapers (large and small sizes) and food. I did however bring a few bottles for our daughter because she is pretty picky about what kind of bottle she will drink out of. If you have a picky child then I would bring your own. You will also need some clothes to bring them home. You will want to use clothing that is several sizes too big normally. For example, Lilie is 6 months wearing 9 month clothing, but I bought onesies that were 24 months. They still fit a little tight, but they work. You do not want clothing that is too heavy because it may make them sweat. This can cause their skin to break out causing sores which are very painful.
I recommend having feminine pads ready to line the cast with, but you are not going to need them at the hospital. There is going to be a lot of swelling around the incision area that will not allow you get them in place correctly. Use these once you get your child home.
I would also make sure that you bring something that is familiar to them. They won’t feel like playing very much, but that will help comfort them. I would just bring something small like a blanket, stuffed toy, or pacifier something like that.
You will most likely be spending most of your time standing next to their bed so make sure that you wear comfortable clothes and shoes. You will also want money for the vending machines because you may be up in the middle of night and need a snack to keep going. Caffeine can be a life saver during really long nights.
One of the problems that we had was people visiting that had been exposed to illnesses prior to coming to the hospital. I would recommend not letting anyone that has been exposed to any form of flu within the last two weeks to visit especially if it is the stomach flu virus. Our first daughter got a stomach virus from someone and became extremely sick in the following days. They are just too weak to fight off any kind of illness. It also made her cast smell from a mile away.
One thing that we learned this last time of surgery was not to be scared to tell the nurses what you need. They are there to make your child as comfortable as possible. If you feel that the pain medication is not working, do not be afraid to ask the nurse to call the doctor for other options.
Things For Home
One of the best things that you can do for the family is to prepare your home. You will want to have everything cleaned and disinfected for when you come home from surgery. I usually spray all surfaces areas with Lysol that day of the surgery that way when we come home everything is already germ-free.
I would also recommend preparing at least one week worth of food. It will be much easier on you if you do not have to worry about food for everyone. If you cannot prepare food in advance buy frozen foods that are easy to prepare. You are not going to have much time to spend on cooking, even if you and your spouse are working together.
You are going to need some place for your child to sit comfortably when you cannot hold them. The cast is always bigger than you think, so try to find something that does not have really high sides. Most of the time, you will not be able to use a swing, bouncy seat, or high chair because there is just not enough room. We have used a bean bag with both our girls and it works really well.
Buying all the things that you are going to need in advance will really help you when you come home. You are going to need two different sizes in diapers. A small diaper will work for the inside (Newborn to s.2) and a larger size for the outside (size 4 to 6). I also recommend buying feminine pads for lining the cast. It has saved the cast from getting soiled so many times. I buy Stayfree ultra thins with no wings. They are easiest to fit inside and relatively inexpensive. I also use medical tape to hold them in place on the outside of the cast. This not going to look great, but it is a necessary precaution to keep the cast as dry as possible.
I hope that this helps you with the preparation.
Last time we had to go through with surgery on Natalie we had a pretty hard time. Natalie was constantly waking up and would cry every 5 minutes (no exaggeration). They would give her pain medication and would tell us that it could just be an affect of the anesthesia. We didn’t really think much about it until we told the recovery room nurse about that problem. We noticed Lilie wasn’t doing this. The nurse told us that often kids in spica casts will have muscle spasms. No matter how much pain medication you are giving, that doesn’t fix that problem.
You know what, as we looked back that is probably exactly what was going on. The nurses at the time just didn’t know what the problem was and didn’t know how to correct it. So, a quick warning when you go in for surgery and to have a spica cast placed on your child, if your child is waking up and acts like they are in pain every few minutes then this is a good possibility. You can make it known to your nurse and hopefully get some assistance with the problem. More to come about Lilie’s surgery soon!
Well, right after we had some relatively good news it was torn down this week with news that Lilie’s hip still isn’t looking quite right. My wife saw the x-rays and said that even she could see a difference in her right and her left. The doctor may think that she just has a ligament in the way preventing her hip from going into the right location. Either way, she is going to need surgery. He didn’t want to wait so he scheduled it for today and it looks like she also will be in a spica cast. We were trying to avoid this, but it looks like it just couldn’t be corrected with the pavlik harness she had been wearing for the last couple of months.
The doctor won’t know whether he will have to do the open medial reduction like he had to do on Natalie (our older daughter) until he gets in there and gets a good look at what is going on. So, unfortunately, we won’t know until she is out of surgery what type of condition her hip is in and how long she will need to be in the cast. It would be awesome if she could be totally out of it by Christmas, but that is wishful thinking I would imagine! We will try to keep you guys up to date.
Unfortunately Lilie is still in a brace like Natalie was when she got her spica cast off. However, the good news is that we think her hip is in place. The primary purpose of the brace is simply to give the muscles around the hip time to heal up and strengthen so that her hip will be in the socket permanently. The biggest problem we are having right now is the fact that she does not sleep well in it. We have tried to leave her in it anyway, but it is difficult at times.
Overall, we are hoping to get some good news in the next couple of weeks when we go back to the doctor. Her doctor told us that it will be a “make it or break it” type appointment. She will either be out of the brace or need surgery because he does not want to wait until she is too old to have surgery if she is going to need it regardless.
It has been a good thing that we have found her hip dysplasia this early. We always knew that one of the main reasons Natalie needed surgery was because the condition was not found early enough. Luckily with Lilie we were aware of the condition and found it in time so that they could use a harness and brace to correct the problem.
We will be putting up some pictures of her harness and brace here pretty soon. Thank you for all the emails you guys have sent in support!