That is fantastic news! I have appointment with Summer on Monday - her brace has now been on for a month! I hope we have the good news that you did! Fingers crossed!
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That is fantastic news! I have appointment with Summer on Monday - her brace has now been on for a month! I hope we have the good news that you did! Fingers crossed!
Hi,
I just found this site tonight and so I am new here. I'm so happy I found all of you to talk to! Just wanted to share my story and talk to some of you ladies for support. My baby is one month old and has the pavlik harness on for 7 days now. They heard the "click/clunk" the day she was born but don't perform ultrasounds at the hospital for that so I called to make an appointment at Children's hospital and they told me I had to wait until she was 14 days old. The day that she got the harness on I was an emotional mess and could hardly pay attention to what the doctor was saying because I was crying so much. This is my 1st baby. I also feel mad at the ob doctor at my visits throughout my prenatal care because she was SO sure that the baby's head was down and let me go 10 days overdue. I had an u/s 2 days before I delivered that showed baby in frank breech position...the same position that she was in at my last u/s 4 mos. earlier. Now both of her hips are messed up. I am absolutely dreading the next brace or next steps that will come after she gets the Pavlik harness off. Do you all know of any baby that had the hips corrected with just the Pavlik harness? Also if your baby wore it did you still put her in her swing or bouncy seat? Did you hold her close to you? I'm just not sure on how to handle her with this harness on...I don't want to interfere with what it is trying to do. Also did you take it off to bath her/him? I have to take it half way off to changer her tee shirt. Sorry for rambling and I hope to hear from some of you soon! Thanks for reading!! Lesa
PS--I hope I am doing/posting this right...I'm not too good with the computer...lol
Hi Lesa - I know it's hard - I too cried for the 1st 24 hours when my daughter was put in her brace. Fortunately she only had a slight click in her left hip ( It was picked up by my G.P when she was 6 weeks old) We went to the Children's hospital (Melb) and they said it was a bit early to put her in a brace and to go back at 12 weeks. At 12 weeks we had to put the brace on. It was not the same one your baby girl is wearing, so perhaps some of the other ladies on the site can help you out with those questions. Let me reassure you it will get easier for you. I remember crying the first time I tried to change Summer's nappy, and I also felt awkward holding her. You will work it out though - and be reassured that your baby is not in any pain! I know that the orthotist at the Melb children's hospital are fantastic - and were happy for me to call them or visit at any time - so make sure if you have any questions you ring your doctors and ask! Summer was able to have her brace off for an hour a day - so that was her time to have a play / kick around and bath.
We went back to the hospital last Monday, the docs were very pleased with the progress and Summer only has to wear the brace at night for another month and hopefully after that we can remove it for good! I do know someone whose baby girl wore the pavlick harness from birth and now at 4 months has moved on to the db bar which will hopefully fix things.
Hope I have helped in some way. I'm not an expert, but sometimes it helps to receive reassurance that everything will be ok.
Lesa - I can completely understand how you are feeling but it does get better. My DD was breech and so had a routine ultrasound at 6wks which picked up hip dysplacia. By 7wks she was in the pavlik harness. The great thing is if it is picked up early like it has been the pavlik harness should be able to correct it. DD was in the harness full time (no bathing allowed just sponge bath) for the first 6 weeks, then allowed out about an hour a day for the next 6 weeks. Then it was just for night time use for a few weeks and by that stage it was fixed. We went for a review 6 mths later and now don't need to go back till she is 5 for another review.
So given it has been picked up really early you may only for looking at a few months in the harness and no further treatment. Fingers crossed. The Children's Hos Melbourne were fantastic.
In terms of closeness, just try and treat her as if she didn't have the harness on I know it is difficult but you get use to it quickly, I found other people more worried about handling her, they just didn't know how to hold her but I encouraged others to hold her and found the best position to hold her was straddled over 1 leg.
If you have any questions please just ask me, more than happy to answer your questions. But you will figure things out quickly.
First of all thank you for responding. When my baby cries or gets upset her legs go straight out to the side and get really stiff....is that normal? Anyways the ortho doctor had told me something about the NEXT brace she will be in. Like I said I was so upset the day that she got the harness I could hardly even hear let alone pay attention to what the doctor was saying and needless to say that the baby's dad wasn't there with me. So I am guessing that this Pavlik harness isn't going to correct it if he is already talking about the next brace that she will be in. I am just so sad for my little one and not to mention that I am going through this alone because her dad is a jerk and I get no emotional support from him. This is very hard for me. All he can say is that the baby is fine and that I worry too much and he gets mad at me if I get upset. I can't express to him how I feel or how worried I am for her. I have to keep it all inside because he gets mad at me. I can't talk to him.
Do you think it's ok to have her in her car seat or her bouncy chair or swing. These things kind up "cradle" her and scrunch her up...if that makes sense.
I just want to thank you ladies again for responding. I really needed someone to talk to.
LESA
Oh Lesa - I feel for you! I know how upset you are feeling, and it doesn't hurt to have a cry. Be assured that the brace is only going to do good. It might take time, but in the end it will be worth it. I was a worrier like you. I thought I had done something wrong, then I was worried about her developing properly ( rolling etc) But you know what - we are mums and it's ok for us to worry and be upset. The way I looked at it in the end, was that at least the problem was being fixed now and not when Summer was older and more aware. Summer is in the different brace ( the DB Bar) but she was still able to sit in her car seat and her swing. I think as long as the top of the hips / legs are in position it should be ok. If you're worried about stuff go back and talk to the doctors too. Are you in Melbourne? If so the children's hospital are fantastic. Keep your chin up - things will get easier. I am here to chat to at any time!
Lesa - she will be fine to be in the car seat, the back straps on the harness means her legs can't go in to far anyway. I didn't use a bouncy chair as she didn't fit properly in the one i had and I avoided anything that let her legs 'hang' ie a swing but that was just me. She spend alot of time on the floor or me holding her.
I'm sorry to hear the father isn't being supportive but trust me it will get easier.
Hi Everyone,
StaceyLee- It was good to hear Summer only has to wear her brace at night now. I am glad that everything is going well.
Lesa- I am sorry to hear that your little baby has been diagnosed with hip dysplasia. I am sorry that I can't give you much advice about the harness as because my daughters dysplasia was not picked up until she was 4 months (only in the right hip) she went into a spica cast for 3 months and then a brace for 2 months after that. I month full time allowed to take it off 1/2 an hour each day for a bath and then 1 month only having to wear it at night. I to cried for days when it first went on but she adapted to it so well and although she was quite difficult to hold and carry at first I eventually got used to it as well. We were able to put her in a car seat we just had to slightly modify it so she could fit in. This was done by the hospital before we left. I never put her in a swing as the cast weighed 1kg which would have pulled down on her and I just avoided those sorts of things while she was in the cast and the brace. Anyway she is now completely out of her brace and has been for two weeks. We have to go back in three months just to monitor it. So even though hers was picked up later then what they like in total she was only in the cast and brace for 5 months which at first seemed like a life time but actually went relatively quick. Hopefully because your babies dysplasia was picked up early she also wont have to be in it very long.
I hope this is of some help and I wish you all the best. I am sorry you don't have the support of the babies father so I am happy to help if you have anymore questions! But it is true, it does get easier!!
Monica
Hi ladies,
How is everyone??
Monica and StaceyLee what kind of brace was your daughter put in? I was told that mine will be put in an abduction brace after 3 more weeks in the Pavlik harness which the doctor told me that her hips are improving.
Does anyone know anything about the abduction brace. They showed it to me at my appointment the other day. i was wondering if it will be harder to get adjusted to ....will it restrict the baby's movement more or less than the Pavlik harness? Is diapering going to be harder?
PS--I am from the United States. Are you all from the USA or from Australia?
Thanks,
Lesa
Bridee,
thank you for the words of encouragement.....
i sure do hope it gets easier. sometimes i feel like a single mom.
much appreciated!
lesa
don't feel that way, there are a lot of people around you that are showing care and paying attention to your baby.. those who were willing to help you out, by the way where's your husband?:
Hi Lesa,
I am in Australia. Hayley didn't go into a DB brace or a pavlik harness after her cast. She went into what the cast technician said was called a 'broomstick' because it had a thin metal strip from ankle to ankle. They made a mould of her legs in the position that a pavlik harness places them in, with plaster and then made the brace with a type of plastic (it was pretty plastic that had mauve butterflies all over it). It went from the top of her thighs to her ankles and we just slipped her legs into it and then velcroed it up. I tried to google it to see if they had any pictures that you could look at but I couldn't find any. I hope this makes some sense and I also hope you and your DD are doing well and that it is getting easier for you. It is Mother's day here tomorrow so if it is in the US as well I hope you have a great Mother's Day!!
Monica
Hi All,
I am new to this forum and signed up especially to say thank you to everyone for sharing your stories. My baby girl was breech and as a result has hip dysplasia in the left hip.
We were advised to have a 'routine' ultrasound of her hips at 6 weeks (which is when the dysplasia was found) and the same day this was performed, not more than 3 hours later our baby girl had a pavlik harness fitted. I was an emotional mess for 48 hours after it was fitted and when I finally composed myself and researched the harness and condition, I came across this forum. Reading your stories and feeling your strength through your posts, I felt much calmer about my baby's situation and I guess it was a 'relief' to know we were not the only parents going through this and my feelings were normal.
Our precious baby is 8 weeks old in two days and we've had the harness on for 2 weeks tomorrow (yes, I'm counting down the days!!). We're not sure how long she will need to wear the harness (24 hours, 7 days a week), other than being advised the average length of time babies wear the harness is 12 weeks.
All the best to everyone, Natalie
Hi Natalie
We are in the same boat. Was your baby "frank" breech? How bad did the doctor say her condition is?
Mine was frank breech for a long time and due to that both of her hips are bad. She has been in the Pavilik harness for 22 days. At our last visit the doctor said that her hips were improving!!! I was sooooooo relieved to hear that because I always expect to hear the worst. So that should make you feel a little better knowing that this harness actually does do it's job. In 2 more weeks we go back and she gets another ultrasound and the doctor said that she will probably go into a brace called an abduction brace. I will have to give you more details when the time comes for that.
So hang in there... things are going to get better for us!
Does she wear it 24/7? How is bathing going for you? Do you undo the harness to bath her? I undo the top and sponge bath her and then redo the top and then undo the bottom and sponge her legs really quick because I am afraid to have it off too long.
Keep in touch and let me know how it is going for you guys and your little one.
Lesa
Hi Everyone,
I am new here too. Our little girl is also in the pavlik harness and has been for 4 weeks on monday, she was not breech so there is real explanation as to the cause of her hip problems. We were lucky that it was picked up when she was four days old. She did not get the harness on till she was 5 weeks as they wouldn't u/s her until she was 4 weeks old. We only bath her once a week at the hospital we cannot remove the harness at all, we just sponge bath her daily. We are working in six week blocks so only a couple more weeks till her next u/s, at this stage our paed thinks she will have it on for at least 12 weeks but we just have to wait and see.
I'm glad I found this forum/thread there is not much out there about what 'real people' go through with this.
Its great to read a few of your babies are getting to the end of their tretment with good results and are now out of there harnesess'/casts :D
Steffy
Hi there,
I have been reading your posts - I took my 8mo dd to the doctor this morning as one of the girls at childcare noticed she has one leg longer than the other. When I was looking at her last night, it seems so obvious and I can't believe I didn't see it before. Anyway, the doctor confirmed there is definitely something wrong with her right hip and suspects dysplasia.
I can't stop crying - I've been reading all the various treatments and they all sound awful. She is already so active - crawling and following her older brother around, and I can't bear to think this is going to come to a halt very soon. We are seeing the specialist next week so will find out more I guess, but I wondered if there were any questions we should particularly ask? I know I'm just going to be in tears the whole time and won't take anything in.
What are the treatment options? I keep reading about all the braces and casts and they all sound horrible, especially the spica cast!
Thanks,
Bertie
Hi Lesa,
Hope you and your little one are doing well.
Yes my baby girl (Sienna) wears the harness 24/7 and sounds like we bathe her like you do your little one. I was concerned that we weren't able to clean her bottom etc. adequately by sponge bathing, so we bought a 'hose' that connects to the bathroom tap to wash those areas (which works really well without getting the harness wet).
We are seeing a hip specialist on Monday, so I'm hoping he will tell us more about the severity of Sienna's condition and also perhaps give an indication of how long the harness might be needed. The only indication we have so far is the Dr who did the initial ultrasound indicated Sienna's condition wasn't 'that bad' and could only tell us that most babies wear the harness for approx. 12 weeks. Our paediatrician didn't comment on the severity of the condition at all (which I can understand) and referred us to the hip specialist.
Good to hear your little one's hips are improving with the harness.
Take care,
Natalie
Hi Lesa,
Hope you and your little one are doing well.
Yep my baby girl wears the harness 24/7 and it sounds like we bathe her as you do your little one. We ended up buying a hose that fits onto the tap to wash her bottom etc (without getting the harness wet). Not really sure of the severity of Sienna's condition just yet...we have an appoint. with a ortho surgeon this coming Monday. All we've got to go by is the Dr who performed the initial ultrasound indicated Sienna's condition isn't too bad, so I'm keen to hear the 'hip specialist' opinion. And I'll be armed with questions this time, as I was in shock and too emotional to think after the ultrasound/ harness was fitted.
Sienna has had the harness on for three weeks now and we had a routine appoint. the day before yesterday with the orthotist who fitted the harness...the positive news is he was happy with the harness (loosened the straps on the left leg a little...hooray!) and also said the ortho surgeon might want Sienna to go into a different type of harness/brace, so I'm keen to find out more next week.
Take care,
Natalie
Hi Lesa,
I've tried to reply three times now and for some reason the forum is not saving my posts :(
Hope you and your little one are doing well.
We had our first appointment yesterday with an orthopedic surgeon who reviewed Sienna's ultrasound films and manually felt her hips. He believes her left hip would have been dislocating at the time she had the harness fitted (3 weeks ago) and the good news is he could not feel it dislocating yesterday (yay....some progress!!). We are having another ultrasound tomorrow to ensure the hip is being held in the correct place by the harness and if all looks ok we continue on and have another ultrasound done in 4 weeks time and see him again in 4 weeks. He believes Sienna will have the harness on for 3 months.
Yes Sienna wears the harness 24/ 7 and it sounds as though we bathe her as you do your little one. A tad frustrating doing the whole sponge bath thing...how exciting it will be when the harness comes off and we are able to give a proper bath! We bought a hose that attaches to the tap in the bathroom sink which makes it easier to clean her bottom etc without getting the harness wet.
Take care and chat soon.
Natalie
Hi Natalie...
Glad to hear you have some progress being made!
Isn't this ridiculous what our babies have to go through! But I look at it this way... she is perfect and healthy in all ways but just has to get past this one little obstacle. And things could have been way worse. At least this problem is fixable!
We had our third ultrasound yesterday. Baby has had the Pavlik harness on for 6 weeks. Yesterday we took it off and the doctor put on an abduction brace. He said she will wear this for 3 months. She had the Pavlik on for 6 weeks. The only good thing about it is that I get to see her little feet and calves that I havn't seen since she was 2 weeks old. This brace is hard foam, plastic and velcro straps. It has to be removed for all diaper changes but has to be kept on 24/7. So as soon as the diaper is changed it goes back on. It only goes around her belly and legs. It's difficult to put back on. She can't fit in her carseat/stroller, her swing or her bouncey seat or basinette...that is bad!!! Anyways I guess traveling with her will be kept to a minimum since I would have to remove the brace to travel with her...and it's to be kept on at all times.
Doctor said that her hips were really bad. He told me that this ultrasound showed that her hips were securely in their sockets...so I asked him if this meant that she wouldn't have to have surgery or be put in a body (spica) cast and he couldn't tell me "No". So now I am upset because i thought since the hips were in the sockets that this brace would be the end of it.
I just want my baby back to normal so I can hold her normally, bathe her normally and she can wear all the pretty clothes that she has.....which I'm sure I will have tons and tons of clothes to give away that still have tags on them. I want her to be able to roll over, crawl, etc, etc.
Anyways, sorry for rattling on and on. Keep me updated on your little girls situation and I will keep you updated on mine. We have to go for an X-ray in 4 weeks. I am praying for the best! :pray:
lesa
Hi everyone, My name is Sharon and I have a 10yo daughter Jordyn who was diagnosed with hip dysplasia when she was 14months old. She is still experiencing problems. Like many of you I have cried bucket loads of tears and gone through exactly what you are all talking about, hip spica, braces etc. I would really interested in talking to anyone who has an older child going through operations in the hope of correcting her hip. I really wish I had found a site like this years ago!!!!!
Sharon
Hi Sharon,
I was sad when I read your post! Back when she was diagnosed how long did she go through treatments? What all did they do back then to help her and did they say that everything was corrected when her treatments were done or has she been having problems ever since? Sorry for all the questions but just wanted to hear more about your little girls ordeal. Poor thing, I hope she isn't in pain.
Our baby was just taken from the Pavlik harness and put into an abduction brace and my baby's dad was just saying this morning that he hopes she doesn't still have problems when she gets older and I told him that's why we are going through all of this now so that she doesn't have problems down the road and now I read your post about your daughter. I didn't think this whole hip dysplasia was so difficult to correct...
Well I hope things get better for you and sorry I couldn't give you any support on having to deal with this in an older child. MIne is only 8 weeks old so it is just the beginning for us.
Good luck and keep posting........
Lesa
Steffy,
How is progress going for you? I just read your post. Did your little one go for the next ultrasound yet? If so what did it show??
Mine just had one 2 days ago and the dr. said her hips had been REALLY bad but they are in their sockets now. She had the Pavlik harness on for 6 weeks but got it off after the u/s and is now in the abduction brace which he said has to be on for approx. 3 months. He also couldn't rule out surgery and spica cast (my worst fear). I hope yours gets corrected with just the harness because this brace is difficult and she can't fit in her car seat or anything.
Keep us posted!! Hope all goes well!!!!
Lesa
Hi Bertie,
Just read your post. I am sorry to hear about your little one. Just rest assured that things will get better. At least they found it now and not when she was older. There are so many different treatments for this... She may just have to wear a brace for a while to put the hip back where it should be... babies can even walk in some of these. It may take a few months to get that hip where it should be but like I said at least she is only 8 mos. old.
I am terrified by that spica cast thing as well!! But from all that I have read it seems as though children adjust well and cope with it rather well. Just do all the research that you can on this so that when the time comes you will be prepared by whatever route the doctor chooses to take to correct the problem.
I only know of the Pavlik harness, the abduction brace, surgery then spica cast also I have read about traction. Do your research and be prepared. I feel your pain and your fears.... it's hard I know but keep posting so that you can get support from everyone.
Good luck!!!!!! It will get better........
lesa
Hi Lesa, It was really good to hear from you and ask me any questions you want,that goes for everyone out there. Jordyn wasnt diagnosed till she was 14months and she had surgery to put the bone back into place and was in a hip spica for 8 weeks. She learnt to stand, flip herself over and crawled so much that the plaster on the knees started to wear out. She was then in a brace for many months. Everything was really good until she was 4 and they discovered that the socket wasnt covering the ball joint enough so she had corrective surgery and was in a wheelchair for 6 weeks. At 7 they discovered that the leg bone was growing too long and pushing the hip up and did more surgery, again wwheelchair for 6 weeks and then crutches for 6 weeks. They inserted pins anda plate to stop the bone growing and give the other leg a chance to catch up. She had the pins out 2007 and by xmas that year i could see the same thing happening again. She had more surgery July last year, more pins and plate, w/chair, crutches. She is due to have it all out later this year and hopefully it wont happen again. Please Please understand what has happened to Jordyn is in the minority, we were told these things could happen and unfortunately they did. It has been extremely tough on her but her strength and courage has astounded me. She will keep having to go back to the Childrens Hosp till she finishes growing. Her one thing she has a problem with is she has never met another child with a similiar problem in her age group. Lesa stay positive, like I said our situation is not usual with hip dysplasia. Sharon
Hi Bertie, Just read your post and I understand exactly what your saying. The best advice I can give you is write down your questions and take them with you to the doctors visit. Also if someone else can go with you who can talk to the doctor if you cant and ask what you want to know. Your baby will adjust, Jordyn had been walking when she had her first operation and adapted fine. LIke I said to Lesa she learnt to crawl etc.
You can still give your a baby a cuddle and play with her, I found the worst thing was how heavy she was to carry around. Good luck and I am thinking of you Sharon
Hi Lesa,
I'm sorry to hear you are almost 'housebound' for 3 months with the new brace on. Is there somewhere you can hire a car seat or pram from that your baby girl will fit into with the brace? Would be nice if you could lead some sort of 'normal' life, or it might be hard to remain positive (it's hard enough knowing our babies are in a harness let alone being housebound!).
I feel your pain and worry about having to face surgery or different types of braces in the future; like you I thought the pavlik harness would fix the problem. Until I read Sharon's posts.
I completely relate to your feelings of simply wanting your baby back to normal so you can hold & bathe her and dress her in all kinds of different clothing. Sienna also has a wardrobe full of gorgeous girly things which she cannot wear. But just think, after all this is over with and our girls are doing really well, we will forget about all the difficulties we faced with this issue :)
Chat again soon,
Natalie
Hi Sharon,
After reading your posts I just wanted to let you know I feel for you and Jordyn...what an ordeal! I didn't think that so much surgery and treatment would be needed to fix a child's hip. It must be difficult (and exhausting) to see your little girl go through all this. I'm sorry I don't know anyone in a similar situation as you...it would be nice if you and Jordyn had others you could chat to about it all.
I really hope that when the pins come out later this year that Jordyn's hip is fixed and you don't have to face this all over again.
Take care,
Natalie
HI Natalie,
It was really good to hear from you. Yeah I have cried lots of tears but there have been just as many good times in between the surgeries. Jordyn as amazed me with her
attitude she wants to write an essay about her experience with all of this for school, which for her is a positive step. Last years op hit her hard and I can think finally the
acceptance is happening, before that i think she was too young to really understand the whole situation.
I wasnt trying to scare anyone with Jordyn's story and I am sorry if i did.
Good luck with everything and I would like to know how it all turns out, keep smiling, take care
Sharon
Hi every one,
WOW - how time flies, I didn't realise that last time I posted was just after Easter! There are a few new posters - welcome -
Sharonw its great to chat to someone who has 'been through it all' even though your journey hasn't ended I'm sure you can offer some great advise and tips. Jordyn sounds like a trouper, it is surprising how well kids adapt. Hudson does even seem to care that he is in a spica cast, he plays on the floor with his trains. He wore through his last cast like Jordyn did (we got told off) so this one we got more fibreglass added after a week but he's still wearing through this one too.. oh well
My son just turned 2 on Friday, he has been in his 2nd spica cast for 3 weeks now. His first one was on for 6 weeks. We get this one off in 3 weeks and he'll get measured for a Bachelor Brace - which I have no idea what it is as I can't find images of it on the net. I imagine Forrest Gump lol. Then he will be in another cast for 2 weeks while the brace is made then will be fitted with the brace. From what little they can tell me he will be in it 24/7 with an hour off a day for a bath (can't wait to bath my boy properly). They may allow Hudson to take it off for longer as time goes on but they can't promise anything.
Lesa - i can totally understand about the not fitting into anything. We had to hire a car seat and had that modified to support his back. We had to have an extra large wooden thing attached to his pram to support his legs, we had to break the front bar off the pram to be able to get him in. Hudson wouldn't fit into a high chair with his first cast at all, this one isn't as wide so we can fit him in his high chair now.. just.
Things I was surprised with...
- that Hudson never cried.. once :clap:
- Hudson could commando crawl instantly
- how heavy he was
- how much ppl stare and how many comment that they have been thru the same
- that they saw the cast off while he's awake, he did shed a couple of tears but was fine after he could see what they were doing
- how hard it is to feed a child that can't sit in a high chair and cant sit on your lap
Sorry its a bit of a novel, I just have so much to say =]
Hello All,
Sorry it has been a week or so since I posted... also, there seem to be 2 hip dysplasia threads (both of which I have posted to at different times) - is there any way we can get the two combined?
Well, update for us - we went to see the specialist last week and had everything confirmed - nothing unexpected. Olivia will have her leg/hip pushed back into place (he is hoping to avoid surgery) and then will go into a Spica cast for 12 weeks. He was hopeful that will do the job, but will reassess at the end whether she would need a brace for a while after, although he did say that if she did it would just be over night.
Unfortunately she is not scheduled to have everything done until 22nd June, which means another 2.5 weeks of waiting. I feel like it has lulled us into a false sense of security, as everything is back to normal, I'm not feeling sad as 2.5 weeks seems like AGES to enjoy my beautiful little girl being active and happy. I kind of wish we could just get on with it though - I think the anticipation is the worst thing!
I have some practical questions though:
- in the spica cast, what position will she be in? Is she ramrod straight, or sitting or in between (reclining)?
- I read that children in spica casts were ok in bugaboo strollers and stokke high chairs (both of which we are lucky to have from my elder child) - has anyone had experience with either of these? What prams were you able to use?
- Re changing nappies - where / on what did you change them? I don't think Olivia will fit on our change table when she's in her cast.
- What should she sleep in? Will she fit in her sleeping bag? Or even if she does, would it be too hot for her in the cast too (2.5 tog)?
- My specialist said it was a completely painless procedure, but I have read that they get muscle spasms and cramps etc, which I don't think sound painless! Did your children get these and how did you deal with them?
Sorry for all the questions - and I'm sure I'll have more later!!!!
Hope all your beautiful babies / children are doing well...
Bertie
Hi Bertie,
Thought I could answer a few of your questions. My boy Hudson is in a Spica Cast - the term was for 12 weeks with a change over half way through. I will imagine they will do the same for you, it allows for growth and p`ulus by the end of 6 weeks its starts to smell a bit.
We will have to have the brace as well, but we have been told it will be on for most of the day - but Hudson is a little older than your girl.
In terms of what will he cast be like... well there is no definate answer, this 2nd cast was different from the first. They say it all depends on how the hip will sit, that is how the cast will go. Hudsons first one was ver wide and his legs were bent and there was a bar between the ankles. The cast went from just below the rib cage to his toes.
The second cast isn't as bad, its not as wide and his feet are free, there is still a bar between his legs though. There was a little girl about 1 - 1 1/2 getting a cast at the same time, hers was only down half one leg and one full leg to her toes and then up to her rib cage, there was no bar on hers.
See my previous post about car seats, prams and highchairs.
We have no problem changing nappies. We have one of those foam change mats from Target and he fits on that fine. With nappies we use a new born one tucked into the cast and a larger one for the outside to hold the smaller one there and to catch overflow. (got that tip from someone here) we use huggies newborns and baby love on the outside. We only change the outside one twice a dy o average but will change the newborn one every 3 hrs or so. We don't wake him to change him at night and he will wet through to the big nappy.
Hudson sleeps normally in his cot with a pillow to support his legs. We dress him in a all in one suit with no legs as he tries to take his nappy off. We dress him in t-shirts or jumpers over that. Being a girl you could use dresses.
when the first cast as put on Hudson was quite dopped up with morphine, this was due to them having to 'nick' the tendon to manipulate the leg so the hip joint was in place. he was quite bruisesd and tender in this area for a good month but would only cry "ouch" when we tucked his nappy into his cast. Other than that he wasn't in any pain.
I think if you do a lot of research and look up pics of spica casts you won't be as shocked.. this is what we did and I have yet to shed a tear as I think we were quite prepared for it - good luck with it all and feel free to ask as many questions as you like
Lizy
Hi Lizy,
It was good to hear from you and hear about your little boy Hudson. I agree with you kids adapt so quickly and find ways to do things easier. Jordyn has surprised us over the years with things she has said and done. It hasnt stopped her, she has done horse riding, skating and the Doctors have all said go for it.
Bertie when Jordyn was in the hip spica I used to change her on the floor with a towel under her and in the cot. I used to buy nappies from the factory outlet and used a large size and then put a sanitary pad in as well. This seemed to work well. At night when she went to bed in her cot we used to support her legs with pillows and then turn her over during the night so she wasnt lying in the one position all night. Our doctor suggested this. Another thing we found really useful was a beanbag to sit her on and also to feed her, I found this the easiest way.
Sharon
Thanks for your replies Sharon and Lizy. I have been looking at loads of pictures on the internet - that's what upset me most in the beginning, as they were a shock thinking of my poor little girl like that, but I have been telling myself that it could be something so much worse, and at the end of the day she will be fixed (hopefully!) and won't remember this time at all. So hopefully it won't be too much of a shock when we actually see her after she has the cast put on...
Both of you mentioned that you supported your childrens legs with pillows when they were sleeping - so I assume that their legs are slightly raised (or if they were upright they would be in a reclining position?) - Sharon - you said you turned Jordyn over to change her position - could she lie on her tummy? Olivia likes to sleep on her tummy best...
Also - I think I'm ok with what Olivia will be wearing during the day (have been buying her loads of tops and body suits that are 1 size too big - at least she will be able to wear them later on too!!), but what do they sleep in - do they fit in a sleeping bag, or would that be too hot with the cast on?
Thanks,
Bertie
Hi Bertie,
It was good to hear from you. Jordyn was in a sitting postion but her legs were further apart than they normally would have been if you were sitting. We used to dress her in dresses or big tops, never pants, but her op was in february and it was stinking hot. At night we used to just cover her with a light blanket to keep her warm. Ask the hospital would Olivia get too hot in a sleeping bag, the nursing staff are used to helping parents, and know a lot tips to help you. We have had the best help at the kids hospital with car seats and other questions.
Jordyn didnt mind sleeping on her stomach, we used to prop a thin pillow under her stomach for support, she barely used to wake when we turned her. I found she slept a lot more once we got her home, quite often found her asleepon the floor for a good couple of hours. We would put pillows under her head and tummy and she would sleep for a couple of hours.
As hard as this is you both will get through this, she wont remember anything, you will but I look it as another one of lifes challenges and kept strong for Jordyn's sake.
If i can help you with anything else just let me know.
Take care Sharon
Hi All
Wow what a great site, I wish I had found this site when my son was younger.
Zac was diagnosed at 5 months and underwent surgery at 6mths. he was in a hip spica for 6 weeks followed by 6mths in a brace. He is now 2y4m and we are back to the surgeon in September. We have been told he may need further surgery (60% chance) so fingers crossed.
Bertie - In response to car seats/prams, we were able to hire a seat (Safe and Sound Maxi Rider) from the hospital, we then decided to purchase one and were able to by an extension for the buckle that comes up between the legs (also from the hospital). Zac was able to use this seat (with a small pillow for extra back support) while in the spica and brace. We found the 3 wheel pram we had was fine we just need to removed the front bar and use a small pillow. As for clothes he didn't fit into any bottoms as the cast was bulky so he just wore large tops and socks. Hope this helps, Good luck.
Hi Sharon and Zacsmum (and everyone else!!)
Well, we have 4 days to go before Olivia gets put into the cast - ugh! The poor little thing has been miserable the last couple of weeks too - she has about 3 teeth coming through, and now has a stinking cold as well. I'm just hoping she gets a bit better before Monday, as at the moment I'm not sure whether the hospital would let her in - green snot galore!
Just wondered if there was anything we should be preparing / buying to get ready for Olivia? Should we buy some smaller nappies for in the cast / bigger nappies for outside the cast? Or should we wait until we see her? I'm not sure what sizes to buy? I know the hospital will help us with the car seat etc, but it's the little things I'm worrying about now... I'm still not sure what she's going to sleep in too - I don't think she will fit in her sleeping bag anyway, but it does get pretty cold overnight...
Also - did you go with your children into where they get put to sleep? I have a friend who told me it's really upsetting and better to get daddy to do it, but I want to be there for her...
Oh well, at least from Monday we can start counting down to when the cast comes off - at the moment, the anticipation is the worst thing!!
Thanks,
Bertie
Hi bertie,
in regards to going to theatre - kids are like adults in that every child goes "under" differently. So sometimes it can be distressing - in that they cry/scream, thrash about etc - or else they can just calmly go... it's really up to your family - some dads don't cope well either!
In regards to what you'll need - it's probably best to wait and see - the staff at the hospital will be able to help you out with any specific questions/equipment etc.
Kids usually adapt really well to changes - it's us that don't cope as well!! As hard as it is, try and keep a positive attitude which will help your DD as well.
HTH!
Hi Bertie,
I know exactly how you are feeling, the days before Jordyns first operation I was a mess, probably partly hormonal as well,
I was pregnant and had bad morning sickness.
I hope Olivia is getting better. I did go in with Jordyn for the anaesthetic, it was one of the hardest things I have ever done. I held it together until she was under and the doctor sent me out and then I cried. You will be amazed how strong you can be, I couldnt have sent anyone else in with Jordyn I had to doit and the older shes gotten we have given her the choice who she wants to go in with her and its me. I have to be strong, Losing it in front of her isnt going to help her.
I had bought nappies before hand but not many until I knew what size I needed. For her sleeping get a big blanket and use that in the cot and put a warm top on her. If you are staying in hospital with her make sure you go outside and get some fresh air and take breaks. I will be thinking of you and I wish you both the best of luck and take care.
Please let us know how it all goes
Sharon
Hi Bertie
All the best to you and DD on Monday. It's such a roller coaster of emotions seeing your baby in the cast, I remember having some very dark days, especially the first time his nappy leaked into the cast (I was devestated). But DS was amazing, it didn't seem to bother him at all, in fact he managed to pull that cast around the floor as he played with his toys, and always with a smile.
As for things to take to hospital I found the 2 hospitals Zac went to (1 to put cast on and 1 to take it off) were a bit short on nappy sizes. They had enough to cover us for the first day, however then I got my mum to pick up the sizes we needed on her way to visit. As long as you have someone to do some running around for you it should be fine. Chances are you won't want to leave.
For Zacs 1st opp he was only 6mths so they didn't get us to come in as he was happy to go with the nurses, for the 2nd however my DH went in, he said it was hard as Zac put up a bit of a fight. When he came out he was very upset.
Also not sure if you are breast feeding, but if you are you will need to bring a bottle to express. When Zac came out of surgery and wanted a drink I couldn't pick him up as the cast needed to set so I ended up having to lean over him in the middle of the recovery room trying to get him to have a drink, not to mention I was exploding form not being able to feed him before the opp.
I hope this helps, I am more than happy to give you as much info/support as possible, so any other question please ask. I didn't have any info and it was all such a shock and happened to fast. We only went to see the specialist the day before and were booked in the next day for surgery as they had a cancellation. So no time to prepare anything.
Good luck for Monday, will be thinking of you.