Furgurnie - These weeks must be tough! The countdown is the worst when you can see the light at the end of the tunnel!!!! And yes, those little bubba legs are just so so cute. Have the moistioriser handy - DD's skin was dry and a bit flaky but a few days of rubbing the cream in and they'd come back to normal.
DD stood up tonight for the first time without pulling herself up and she's starting to toddle between people a little more. Slowly gaining that confidence
Hi ladies,
Sorry it's been so long!
Zara was fitted with the pavlik harness about 5 weeks ago. All is really well. In 2 weeks of having the brace her hip went from 36% to 55% so fingers crossed she will be out of it in 3 weeks at her next appointment. I was so upset about it to begin with but it's really not that bad. I thought it'd be difficult to cuddle her but it's quite easy.
Feeding was a little difficultbut we are managing. I had to put it in perspective as it's a good problem to have. She doesn't have an illness, this is a fixable problem and there are many childrenout there much worse off. Just going to the childrens hospital made me realize just how lucky we really are. I know not all experiences may be like mine though but if anyone has any questions please feel free to ask. All the best to everyone!
I am still reading Corelly and thanks for thinking of me. My little girl and I have been sick ever since her birthday on 8th August so other than a little bit of Facebook, there hasn't been a great deal of computer time for me. I have been following everyone's stories here when I get a chance though and I am so pleased to see so much great progress being made.
We have had an up and down few weeks. My little girl was due for surgery on 11th August but came down with a cold on the day of her birthday. Her surgery was rescheduled to 25th August but because her cold hadn't completely gone, we have been rescheduled again to the 8th September. The hardest part has been the build up each time to just a few days before the surgery date, and then having to go through that whole emotional process again.
We had a follow up appointment with our surgeon not long after my last post to get some questions answered. I'm so glad we did as we learned that the surgery may be more invasive than we first understood it to be. The worst case scenario for us is a pelvic osteotomy, although the surgeon indicated that is not highly likely at this stage. A femoral osteotomy is a real possibility though so we're not feeling great about that.
We also learned that our bub will not be allowed to spend any time on her tummy for the whole 12 weeks in the cast. That is going to be so hard as it limits her even more than we expected. She is pulling up on the furniture and cruising everywhere so it will be a real shock for her to not even be able to play on her tummy or learn to commando crawl in the cast.
The one little piece of good news though was that the surgeon indicated that he didn't anticipate the need for a brace after the cast if all goes well. I hadn't heard of that before (but then I hadn't heard of no tummy time either) but we have our fingers crossed that perhaps she may escape the brace. One step at a time though and we will just wait and see.
Right now our focus is just on trying to be as healthy as possible for the 8th September. I still have my cold and bub still has a bit of a sniffle which is a worry. We have put ourselves into voluntary house arrest in an effort to avoid picking up any other bugs, so fingers crossed that we can finally get things underway. As much as I am dreading the day of surgery, at least there will be a sense of moving forward rather than being stuck in limbo as we have been for the last few weeks now.
I hope that everyone is traveling well and I so enjoy stopping by to read the latest news when I get a chance.
Karma, hope you both get well soon. DD hated being on her tummy while in the cast, so it may be a blessing in disguise for you. We ended up only putting her on her belly for nappy changes - it's far easier to do it on their belly to get the nappy in the correct position. Fingers crossed that no brace is needed. It'd be fantastic if you can get through the 12 weeks and then no further treatment is required.
Kirsten, Olivia's hip results were similar. Hers were 38% at 6wks and 2wks after being in the pavlik they were 55% (that's when they decided to move her into the DB bar). Best of luck for her next apt!
Karma, I hope you and your little girl are feeling better. It must be so hard waiting for the surgery I hope she gets to avoid the brace afterwards
Hi all, just a quick update. Emma is now out of her cast and in a Rhino Cruiser brace. Her skin in places were red raw and she had flakey skin all over, but they are healing up very quickly. She has very little strength in her legs and when she has brace free time her legs remain in the outward frog position. Did anyone else's baby have to do any excercises to increase strength, we haven't been told anything.
Hope everyone is doing ok
Awesome that Emma is out of her cast! DD was exactly the same when she came out of her cast. Her legs remained in the frog position for quite some time. We didn't have any exercises for them to straighten them out and they only really started to straighten when we got rid of the brace altogether. When she started to crawl, she could only commando and she pushed with her toes until she got strong enough with her legs and then crawled properly. Hope that helps
Thanks Corelly, that is reassuring to hear that your DD was the same once out of her cast. It's a little heart breaking to see her legs all floppy!
I bet your DD is walking all over the place by now and keeping you very busy! Enjoy
Hooray for LEGS!!! I am with Corelly, our DD was the same, rest assured her legs will once again return to normal after brace. We were told that no exercises were needed and that our munchkin will do her own rehab to regain strength again, and she has. They do end up with great flexability and really strong toes and arms! Great stuff!
Every step forward is sooo exciting, for our little ones, even more so with what they have to go through to get there. A big "Yeah" to all of them!
I just returned from the doctor and learned that my 2 month old daughter has Hip Dysplaysia. I see the orthopedic doc next friday. I am concerned as I am sure you all were about the basics: breastfeeding, bathing, sleeping, will she fit in her swing, carseat etc. I'm upset but at the same time grateful that it's not worse.
Cailinhsmom - Welcome :-) It's all a bit overwhelming at first, isn't it? I would love to help you out with some hints and tips but my little girl was 11 months old when she was diagnosed, so I'm probably not the best person to help out with how to cope with such a little bub. What I can say though is that the mums on this forum are such amazing women with so much knowledge and support to share, and there is sure to be someone who can help you out with some specific hints and tips. Stay strong for your little bub and visit here whenever you need to vent or just need some support or encouragement.
Well, we are now 10 days post surgery (who's counting though?!?!) and I wish I could say that managing the cast was easier than I thought it would be. The surgery went as well as we could have hoped for with an open reduction to relocate the dislocated right hip. It had started to form a small socket about 6-7cm above the correct position, so we consider ourselves lucky that we didn't need a femoral osteotomy.
Our little girl has been truly amazing and has adapted better than we dared to hope for. The first few days post surgery were really tough for her and she developed a real fear of strangers as everyone that came near her was poking and prodding her. She would burst into tears the moment she heard the door open. It was quite heartbreaking. She seems a little better with that now though so fingers crossed we might be getting through that problem.
Managing the nappy changes in the cast is proving difficult as the surgeon left only a very small gap for the nappy. The nurses kept commenting how small the gap was, which didn't bode well for me managing nappies at home...lol... The surgeon was adamant that she could not be put on her tummy even just for nappy changes, which the nurses actually questioned him on as it is so unusual. He stuck to his guns though and I figure if it means a higher chance of success, I will follow every single challenge he throws at me. Because there is so little room for the nappy though, we have had a few small nappy accidents which I have been really upset about, but I am trying everything I can think of to minimise the chances of that happening.
I have ordered a "Cast Cooler" from the US which gets great reviews for keeping the inside of the cast dry and helping with itching and smell. I will let everyone know whether it makes any difference. The inside back of our cast stayed quite damp because of the no tummy time rule as air wasn't able to circulate. I'm willing to try anything to keep my little girl comfortable and her skin as good as possible for the 12 weeks she is in the cast.
We have our first X-Ray on 4th October so I am desperately hoping that everything has stayed in place and has started to develop as it should by then.
Must run as fish and chips have just arrived. Yum!!
I've had a name change, but I'm still here, same old, same old
Karma - Yay for DD! They just seem to adapt some how, don't they? And we battle along. The Cast Cooler sounds like a great idea. For the smell, we tried to rub baby powder into the plaster (avoiding the openings) and when that didn't work anymore (or we became accustomed to that smell too), a squirt of perfume on my hand and then rubbed onto the cast would help. Very weird that you can't put DD on her tummy for nappy changes, but your doctor obviously has his reasons.
Cailinhsmom - My daughter was the same age as yours when she was officially diagnosed - they noticed that she had a clicky hip at birth, but it wasn't until she was 7 weeks old that the diagnosis was made. Bathing will depend on the severity of her hips - for the first four weeks of our brace, and then into our plaster cast, we were only allowed sponge baths. The brace wasn't to come off at all. Breastfeeding I found to be easy. Still in the same position, but with her legs splayed apart. I would put one leg between hers so that she could rest the leg on top and the leg below I would let dangle - sounds terrible, but after a few days of it and me being stressed and anxious, I realised it wasn't bothering her at all. Sleeping - we put a flat cot pillow under her legs so that they weren't stuck mid air and if you're still swaddling her, we had to transfer into a sleeping bag. After a few nights DD was totally fine with it. In her first brace, she was still little enough to fit into her basinette, but once the plaster went on, she was in her portacot as she was still in our room. As far as the swing and carseat goes, and your pram too will depend on the brace and the size of these things. DD still fit into her carseat in the brace, no problems, not so well in plaster. The pram, we had to convert ours from the pram with the basinette bit on top, straight into the stroller style instead, if that makes sense, as her legs were too wide for the basinette. On our pram we had to remove the handle that goes over their legs (you see toys and things hanging across it), and without that, she fit no problems. Get yourself some socks - children's sizes, not baby sizes and cut the toes off - these will wrap around the bits of the brace that touch her legs and will provide a thicker buffer between the brace and her skin than the gauze strips the orthotic people will give you. Where abouts are you hon? I'm in Melbourne. Big to you. Keep coming in here with your questions, to vent, to cheer, whatever you need.
Calinhsmom - The logistics of it all will depend on the type of brace your daughter is in. My DD1 was diagnosed at 6wks and went into a Pavlik Harness. DD2 went into a DB bar at 12weeks. It depends on their size what they go into. BAthing generally they will not be allowed a bath for at least the 1st 6wks (sponge bath only) then depending on how the progress is may be able to come out for a bath but just depends on the progress and the Dr's preference. Carseat I found Pavlik harness was a little more flexible so DD1 was still able to fit into capsule but DD2 couldn't but did fit into a different rear facing car seat. Breastfeeding I now issues with it just finding a comfortable position - but it does look odd when feeding with a leg sticking up in the air. You will work it all out just takes time.
Karma, hope you both get well soon. DD hated being on her tummy while in the cast, so it may be a blessing in disguise for you. We ended up only putting her on her belly for nappy changes - it's far easier to do it on their belly to get the nappy in the correct position. Fingers crossed that no brace is needed. It'd be fantastic if you can get through the 12 weeks and then no further treatment is required.
I hope she gets to avoid the brace afterwards
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