Hip Dysplaysia Support Group #2

[Miss.September]

Furgurnie - great to hear Emma's surgery went really well. Her surgery sounded exactly like my DD's except we waited a week before we had the MRI. That's fantastic that the cast only needs to be on for six weeks look after your own back in that time, these munchkins get heavy suddenly in these casts! Unfortunately it is against BB guidelines to post photos on here, other than in a signature, but a lot get around it by making facebook friends. I think you can link to your facebook albums or an off-site photo share site, like flickr, but you'd have to ask one of the administrators how. We too stuck by the "rules" with nappy changing for the first few nights, but for us, DD ended up more unsettled after that so we stopped and let her go right through the night. It worked fine for us.

[MummyNaomi]

Hi Everyone and a big welcome to all the new Mums joining the forum

Pink Fairy - How are you going leading up to the surgery, it must be difficult with it getting closer, but I bet you wouldn't mind it to be all over and done with too. Re child care, my DS fortunately came out of his brace a month before he started child care, but the centre told us they have had infants previously with braces and the carers were fine and more than happy to look after the little ones no matter what, glad your centre is supportive I hope DD enjoys her upcoming birthday!

Furgurnie - glad to hear Emma's op went well (and Mum and Dad did well too by the sounds of things). My DS was only ever in a brace and we were very fortunately not having to go through surgery or spica's but nevertheless its an emotional journey isn't it? Agggghhhhhh a hospital room with 3 babies - not the most restful place for poor Emma to recover, glad to hear you got to go home quickly!

Madcat - hehehehe poor DD worried about her legs being chopped off What an adorable munchkin!

Karma - Welcome and like the other parents, I hope you find some support in this forum, I certainly have, especially in the beginning when it was all an emotional blur and we were adjusting to life in a brace etc. I dont think anyone else can truly understand how you are feeling unless they have lived it too. I hope Aug 11 comes (and passes) quickly for you and it all goes smoothly, it will be a tough day no doubt!. Sorry you are still trying to get some questions answered, I cant believe your surgeon cant just take 5 minutes to return your call!! Grrrr

Jackie - good luck for your appt in August. Our orthopedic surgeon was quite conservative also, but now that we are brace free (and all is very well hip wise), I am very glad. My DS was in a brace for 6 months as the angles of his acetabular needing correcting and compared to others in similar situtions it seemed our treatment was quite long, but I guess I'd rather be in the position we are now (HUGE IMPROVEMENT) and we dont have to go back to a check up for 12 months were originally we were expecting 6 monthly xrays so we are very very thankful to our awesome surgeon, so have trust in them What brace is your DD in now?

MummyNaomi, an enormous thank you to you, you are one special lady.

You're a dag Corelly, but I love ya anyway! Like Corelly, I have had HEAPS of support from this forum and now that our journey is over (and hopefully stays that way), I hope I can somehow replay the support by being here for others - and yes Karma, Corelly is a wealth of DDH info

Hope all your bubs are happy and healthy and keeping away from all these winter colds

Naomi

[Miss.September]

LOL Naomi - one of my rare mushy moments :P

[jacksnjeff]

Hi Ladies,

Hope you are all having a lovely start to the weekend. I was until my worst fear became a reality. Just had a spider on my neck. Alot of tears and shaking was involved and thank goodness dh was home. I now have major heebie jeebies. Yuck!

Karma - That is a great attitude to have about the date being set for the 11th. The sooner it is the closer you are to be able to put this all behind you. That was probably the only positive about having our surgery the next day, so I couldn't stew and stress on it. But the major negative as you said is that I couldn't prepare for anything or ask any further questions. That is fantastic that you will be able to have a big 1st birthday celebration prior to casting. Our DD was 1 on the 19th July, but we delayed her party and she will be sharing a big party with her sister who will be turning 4. I am hoping we get good news on the 17th August as their party is 22nd August.

Corelly - Fantastic to hear that your DD is in the all clear. What an amazing feeling that must be for you, your partner and your bubba. With your brace, did they reduce time in it, or go straight from wearing it full time to not wearing it?? I am hoping and praying that next appoint we go to night time only, but am not holding my breath. At our last appoint in May, he got her x-ray up and went though it with us in detail. Her right hip was at least half the size of the left and it was also very obvious the major difference in her left ball joint to her right. I guess I am just worried with how different it was that I am hoping for too much and setting myself up for disappointment. I hate the not knowing, if only I could be told that by the end of AUgust your journey will be over, but I logically know that we are waiting for bone to grow and ossify and no-one knows how long it will take.....

Karma - Sorry I am all over the shop today, but I did feel unprepared for my dd surgery cause that was taken out of my hands. If you could get an appointment I would do that. As Corelly said, write them down and take them with you. My brain goes to mush and I have to write it down to remember what to ask.... It is very frustrating when you do only have a couple of questions that could be answered in minutes and they won't do that. We have never had a CT or an MRI. We have had 2 ultrasounds and 2 x-rays. She also had the arthogram whilst in surgery so that would be another x-ray.

Furgurnie - Fantastic to hear how well everything went with Emma. They are such little troopers aren't they. From a selfish point of view, I sometimes think it is harder on the parents than the kiddies. My DD cast was purple which was a shock. I always just assumed plaster was white. lol That is fantastic to hear that she is sleeping well too. Both my girls have always been fab sleepers, but when Isabelle was in the cast, we were up to her every couple of hours, which unfortunately for us lasted the whole time in the cast and the first couple of nights in the brace. We did try everything but to no avail. I did hear one tip after we came out of the cast and that was to have pillows filled with bean bag balls for the babes to lay on in bed, as it contours to their whole body and supports it where needs be. This may or may not work.... Also great to hear that Emma will only be in the cast for 6 weeks. Woohooooo!!! Hope everything is still going as well as it can.

Pink Fairy - Great to hear you're in Sydney too. We went to The Children's Hospital at Westmead and they were fantastic as I imagine the one at Randwick to be. Goodluck with yours. What date were you booked in for?

MummyNaomi - Thank you for the welcome. Fab to hear that you're at the end of your journey too. I cannot wait to hear those words. I keep telling myself that it is a good thing that he is conservative, but I just want this over. I feel completely cheated with my second bub and feel we and she has missed out on alot. I feel ungreatful saying that, because in the grand scheme I know it could've been sooooo much worse. With your brace, did they gradually reduce time, or did you go straight from full time to nothing?? The brace DD is in is pretty much the Rhino Cruiser but not as thick. I am pretty sure I heard our surgeon say that it is an inhouse design. It is a velcro strap about an inch thick that goes around the waist with an upside down metal V that has an inch thick velcro strap around each thigh. Hope this makes sense.

Hope everyone is enjoying their weekend, it is quite a nice winters day in Sydney.

Warm wishes
Jackie

[jacksnjeff]

OMG, I am so sorry for the essay ladies, didn't realise how long it was....

xx

[Miss.September]

LOL Jacksnjeff! Don't apologise!!!

As for time in the brace - we went from being told it was going to be 8 weeks, and then once we hit that and were told it had to stay on, I think I stopped asking. We had monthly visits after that. When we were told to make changes, first it was allowed to come off for an hour morning and an hour in the afternoon, and for baths. Then, during summer, we were told if we wanted a day at the beach, don't fret, leave it off for as long as we were there. Then when it could come off for good, we had to leave it on for nights for three weeks and then it was OFF FOREVER!!!!!!!!! So it was on from early August to early Feb all up.

[MummyNaomi]

Jackie - Bailey wore his brace 23.5hrs per day - every day for 6 months. We took it off and gave him a bath each day (and had a 30 min swimming lesson once a week in his brace free time but we weren't allowed to paddle his legs or anything - only movement that he made). Then we had an xray when he'd been in the brace for about 5 months and the surgeon said everything was going really well and to take the brace off at the 6 month mark and come back 3 weeks later to be xray'd and see how he was going brace free. So no, unfortunately the time in the brace didn't lessen, it was always the 23.5 hrs. We cheated though, the day we were supposed to take the brace off was a sunday, we took it off a day early so we could enjoy our first weekend brace free - so we were one day short of 6 months.

I know what you mean about feeling cheated, I still feel a bit that way, I'm annoyed and angry that half of my babies first year (and his first xmas and birthday) were spend in the brace. To be honest I think I'll always feel a bit this way. It's unfair and it just plain sucks! And yes, our lot in life could be worse, but you know what, this is the situation we have to deal with and at times it feels like the end of the world. Don't dismiss you feelings, they are completely vaild, and why shouldn't we all wish we had brace free babies with perfect hips? Its not too much to ask. Hang in there babe x

[furgurnie]

Hey guys,

Today was another great day, I am SO happy that things are going good, I just hope it stays this way. My mothers group got together and bought Emma a Lamaze doll and some cute clothes to go over her cast. It’s so lovely to know people care.

Corelly- my back is already aching because of the weight of the cast, need to start doing stretches!! Last night 4 hrly nappy changes went well, but I agree, we will probably get to the stage where she could go all night. I hate going in to wake her, she looks so peaceful! Did you just use newborn nappies inside the cast or a poise pad (or similar) plus nappy overnight? Was the cast pretty tight by the end of her time in it? It’s a pity we can’t put photos up, Emma looks quite cute in her spica! I’m happy for people to look me up on facebook if interested, just search Rebecca van Geyzel.

MummyNaomi thanks for your message, it is an emotional time to know that your child requires treatment to fix their hips. After the 12 month check up, how often will you see the ortho surgeon and for how many years?

Jackie- I agree, this process can be harder on the parents than for the child. Emma seems to have adjusted quite quickly, but it breaks our heart to see her in the cast and not able to sit up, roll over or simply kick her chubby little legs. Yes we are lucky that she is still sleeping well, I don’t cope well at all with no sleep! We use a small pillow with beanbag balls, it does a great job of making her comfy.

[Miss.September]

We used newborn nappies on the inside of the cast with all the tabs cut off with a larger crawler size nappy over the top of the cast. We found that we could actually reach the inner nappy at the back through the top of her cast which made it a lot easier for us to get it into the correct position. The cast got a little bit tighter as she got bigger, but nothing major, she was only in it for five weeks and we didn't have any growth spurts in that time.