Preparing for your Baby’s Hip Surgery – Top 10 List

In honor of Baby Hip Health Awareness Week, here is a  Top 10 List of things I recommend you do before your baby has a surgical intervention for DDH:

  1. Learn all you can about DDH ~  Read through the International Hip Dysplasia Institute’s great website. Get Betsy Miller’s book, The Parents’ Guide to Hip Dysplasia, and read it, too. Scour for all kinds of information about treatment options available and what DDH means for your child. The better informed you are, the better advocate you will be for your child’s health. When I found out about Sara, I talked to anyone and everyone I could think of – anyone with any kind of medical background. I talked to my PT, Chiro, friends, family of friends, doctors, pharmacists – I cast a wide web for information and it helped me more than you can image. Start talking to everyone you can think of to learn as much as you possibly can. I can’t recommend that enough.

2. Research surgeons ~Unfortunately, not all surgeons are created equal. I highly recommend you ask for referrals and get a second opinion. Don’t be afraid to ask your  potential surgeon a bunch of questions. If you aren’t sure what to ask, check out the very extensive list here. Sara’s surgeon said I was welcome to email him questions (because at the time of diagnosis I went brain dead and couldn’t think of a single thing to ask) but I did – I emailed him a very extensive list with close to 30 questions. His response: “Mrs. Marine, I can’t type. Can I call you?” And he did. Three times. Despite his helpful demeanor, we got a second opinion. In fact, we asked him who he would recommend if someone in his family had to go through this. And we went to see that doctor. We drove 6 hours for our second opinion and it was so worth it. In the end we ended up right where we started, but I was only able to feel confident in our decision because I asked question after question, met with another highly recommended surgeon, and asked more questions. In fact, I didn’t just ask the surgeon questions. I asked his nurses. I talked to the anesthesiologists, and the after surgery care crew. It wasn’t until I asked all of those people all of my questions that I felt able to make an informed decision. It took a lot of time and effort, but I don’t regret one second.

3. Network with DDH survivors ~ Join the hip-baby yahoo group. Connect with a group on facebook, find other people who have been through this to help you out. You’ll make some great friends on these groups and you’ll be glad you have them for support. I have a lot of links for support groups here. Connect with a few people and get their email addresses, cell phone numbers, friend them on facebook, get their twitters (can I say that?). You are going to be glad you did! As much as other people will want to help you out, most people just don’t have a clue unless they’ve been through this themselves. One of the things that helped me most was texting a survivor mom while my baby was in surgery. And I’ve been there for other moms. It still hurts to talk about this some times but it’s so helpful to have people there for me and to be there for other people. Connect!

4. Donate blood ~ Find out if you (or someone in your family) can donate blood for your child. DDH surgeries are sometimes so long and so complicated that blood transfusions are necessary. But you’ll only know if you ask, so add this to your list of questions to ask the hospital.

5. Enlist help ~ You’re going to need help. Especially if you have other children at home. My mother drove up from Missouri, my sister flew in from Seattle, and my mother-in-law and sister-in-law all helped, too. With three additional children at home, we needed every ounce of help. My MIL went with us to the hospital. My mom kept the other kids until it was time to pick up my sister from the airport. At that point, my sister-in-law took over with our kids, and my sister (a family doctor) met us at the hospital with my mother just as Sara was headed to recovery. We were incredibly lucky and able to go home the day of her surgery. At home, I really needed all the help I could get. My mom and sister cooked, cleaned, entertained my kids while I devoted all of my time and energy to Sara. She needed all the help she could get for a few days. You’ll be very glad you found extra help – even if you only have one baby.

6. Gather supplies and prep meals ~ Some things you just won’t be sure about – how your baby is casted and what that means for diapering for instance. But it does help to be prepared. Here is a list of supplies that helped us. Karen talks about how she prepared here for her daughter’s second operation after she found out 2 weeks post surgery that her poor baby’s hip had slipped back out while her daughter was casted. Having meals prepared ahead of time saved me more than once. I do a lot of cooking for the freezer and was very glad to have lots of bread and meal components ready to go once all of my help left. I tried really hard to keep up good nutrition throughout this ordeal – but it was only possible because of good preparation.

7. Prepare your child for surgery by boosting immunity and visiting a chiropractor. I am not normally a germaphobe, but the few weeks prior to Sara’s surgery, I stayed clear of germ infested areas and took extra precautions to boost her (and my) immunity. After working through a scheduling nightmare with our massively overbooked surgeon, the last thing I wanted was for Sara to be sick on surgery day and have her surgery postponed.  I’m also a huge advocate of chiropractic care. We made sure to take Sara to see our chiro to help her body stay aligned – I’m not sure if this had any impact on her easier surgery, but it could have.

8. Do something special with your other children, if you have any. ~ Not only is the mess hard on you, it’s also hard on any other kids you may have. I spent so much time researching and crying and hiding, that my other kids were {slightly} neglected. We tried to do something special with them before Sara’s surgery and I made sure to buy them gifts that I gave them the night before we took Sara to the hospital. They got nice artist supplies and created a lot of really nice artwork while we were gone. I felt good about that and they’re always glad to get new things.

9. Enjoy your child ~ Allow your baby to do something fun. The weather wasn’t that great leading up to Sara’s surgery and I was avoiding germ infested areas, but I made sure we went outside to play. We went to the park and I let her climb all over everything. The night before Sara had her surgery she spent 2 hours going back and forth from bath to shower and back to bath. That’s not something she would normally have been allowed to do, but I knew she would not have another bath for 12 weeks. And my girl loves baths. Truth be told, I was very worried about how she would cope without baths. And rightly so. After she became mobile in her spica cast, I had to make sure the bathroom door was tightly shut when her siblings were bathing – more than once she tried to climb in the tub, cast and all!

10. Take pictures ~ Before my baby went in for hip surgery I wanted to make sure we had up to date family pictures. I also wanted pictures of just her. I wish I would have taken pictures of her legs – I’d love to compare the unequal thigh folds before and after. I wish I would have gotten a picture of how uneven her legs were when she was on her diaper changing mat. I’m very glad I got a video of her walking prior to surgery, but in hindsight, there are a few photo shots I didn’t get that it’s just too late to do now. Think about what you might like to see befores and afters of and make sure you get plenty of pictures and videos!

Again, please share if you’ve been through this. What things did you do prior to your baby’s surgery?

Supplies for Hip Spica Cast – Post DDH Surgery

In honor of Baby Hip Health Week 2012, here is a list of supplies that came in very handy for me while my daughter was in her spica cast:

1. Bean Bag Chairmy #1 MUST HAVE! You need a place for your baby to hang out and she won’t fit in many places anymore. A bean bag chair works great! Sara often fell asleep in hers and her surgeon said to keep her in a half reclined state as much as possible during her recovery.

2. New Boba 3G Baby Carriermy #2 must have! Since Sara didn’t fit in the grocery cart, I had to have some where to put her during shopping excursions. The Boba was big enough for my husband to carry her and easy enough to use for me to get her on and off alone – a big necessity.

3. Baby legs- very handy for cold weather since pants don’t fit. I highly recommend baby legs – if there’s no bar on the cast. I found a great sale and stocked up. My favorite pair were Halloween ones with bones on them – they were our good luck legs for healthy hip growth.

4. Shirts, onsies, flouncy dresses in one-two sizes larger than her normal size. Some of her old clothes fit, but not well. Going up 1-2 sizes seemed to do the trick. I stocked up on some clothes at Goodwill so I didn’t have to worry about them being ruined by the spica cast.

5. Duck Tape – sure wish I would have seen this MIZZOU duct tape while Sara still needed it…Duct tape came in really handy for “freshening” up her cast and a variety pack of duck tape was one of the favorite Christmas presents my kids received. Can you say country kids?

6. Moleskin – see if you can get some from your doctor, but if not, you might want to buy some. It comes in super handy for protecting not only baby’s skin, but also YOURS!

7. Incontinence pads, diapers of various sizes, flash light, hair dryer – diapering’s tricky in the Spica. You might want to have a variety of supplies on hand as you figure out how to diaper. The flashlight is a MUST HAVE to check for skin problems hidden under the spica. The hair dryer also helped me out more than once. I blogged more about diapering and supplies here.

8. Baby Advil & Tylenol – helpful right off the bat when the pain is bad (we gave this in between her doses of prescribed meds). There is some evidence of Motrin impairing bone growth, so check with your surgeon before you give lots of does of Motrin.

9. Medicine droppers and a notebook to keep track of meds – we had 3 different prescribed medications and alternated them Advil and Tylenol to manage her pain. Keeping track of when what was due was immensely helpful.

10. Prince Lionheart Wheely Bug – a super toy! Sara loved wheeling around on this – in her cast and in her brace. And so did several other hip children we have connected with.

11. On-The-Go Booster Seat – handy because your baby most likely will not fit in her high chair.

12. Spica Chair – a lot of people really recommend these chairs. Honestly, they didn’t work that well for us. Our surgeon wanted Sara to remain more reclined on the bean bag chair, and I just had a hard time getting Sara in and out of the spica chair. She always wanted to be on my lap anyhow. You can order a spica chair, or get instructions and build your own.

13. Car seat – you’re also going to need a wide car seat. Our hospital loaned us one to use. There are programs to help you afford one if you can’t get one from the hospital (Steps in the UK).