Yesterday was LMI's hip ultrasound. It was scheduled to be done at the children's hospital. We are very fortunate that my city has a world renowned hospital that specializes in all things children - but, going there for your child is extremely overwhelming. The hospital looks like what every place dedicated to children should, big bright colours, kid friendly wall murals, friendly people and fun things for children to look at and play with. Not to mention, high quality excellent doctors.
I haven't been to this hospital in many many years - probably not since I was a child myself and so going there as a mom was an experience I won't soon forget. Even though we were only there for a non-invasive outpatient procedure, we were still there and it was quite scary.
The ultrasound was not bad at all. In fact, LMI had a huge smile on her face while she was smeared with the cold blue jelly on both of her hips. I left feeling optimistic about the results, but two hours later the pedi called with the news. Immature left hip. LMI needs to be seen by an orthopaedic dr and will most likely be fitted for a Pavlic harness.
I am beyond devastated.
As an IFer, I can handle a lot. I got through all the shit that was thrown at me - and remember, there was a lot. But this is my child. I ache when she suffers. I know in the grand scheme of things, this is not that big a deal, but for right now I am upset. I am just so sick of constantly being faced with challenges, can't I have a break, just once?
Today I am choosing to have a pity party and snuggle with LMI, tomorrow, I will pick myself up, do all my research and be ready to attack hip dysplasia with all I've got. LMI, you have nothing to worry about, your mommy is on the case.
-R.
P.S. if you have any experience with Pavlik harness I would love some specifics.
I'm sorry to hear it wasn't the ideal result :( It is so hard to hear such things as a new mom. I don't have a personal experience with it but my best friend growing up had this as a baby. I think she had to do a cast for a few months (one leg) so it is good they have what sound like better options now. I hope the follow up is easier on you. Good luck and I agree a pity party with lots of cuddling will be good for you both.
ReplyDeleteI read your blog all the time and don't usually comment, but this one hit home. My youngest niece had hip displasia to be in the cast for several weeks. I'm not sure if that's the same as the harness, but it was still difficult for them. But honestly, it seemed upsetting for everyone except my niece. She was maybe 9 months old when she got it on and 13 or 14 months old when she was all done (she had to be in a brace for a while after the cast) and you'd never seen a happier kid. It was amazing. She even learned to crawl and walk with the darn thing on! This stuff is often harder on us as parents than it is on them... kids are so darn resilient. But I know it's hard and frustrating that she has to have such a setback at all -- it's NOT fair. But you will rock out that research and she will have the best possible care. Good luck!
ReplyDeleteI'm sorry that she has been diagnosed with this. I commented on the first post you wrote about LMI possibly having this. I remember hearing the news that my daughter had it and bawling in the car while she cooed happily in the backseat. I felt like I had been through enough due to infertility and how unfair it was that my daughter now had to go through something as well. It was just too much. And it sucked going through it, but looking back (my daughter is almost 4) it was such a blessing that it was so easy to cure, with no surgery (though I know some cases do require the full cast/surgery). She adjusted so well, there was almost no difference. The thing that was hardest for me was the fact that my baby's soft back that I'd been rubbing now had a strap covering it. It took me awhile to get used to that. Other than that she slept well, traveled well, played well and did everything a 3 month old does. She got it when she was 3 months old and got it off at 4 months, but then had to go back a few months later for other braces.
ReplyDeleteHer pediatrician was the one who noticed the clicking and referred us for the ultrasound and then we did the ortho through Texas Children's.
At first I was very self-conscious of taking her out in public in the harness. I'd wrap her up in blankets or cover her body if she was in her carrier. Towards the end of the month we were at a restaurant and some kids were curious and I talked to them and their grandparents about it and I was amazed at how good it felt to just be open and explain it (since it really isn't all that well known I've found).
The braces that she got later on were for night use only and even at 6 months adjusted so well. She'd go right to sleep and flip herself over when she wanted. It hurt us to put it on her every night but she did so great. I remember having some bumps when she'd get sick or would get teeth, so we just didn't put it on that night, but she had it on for the majority of the time she was prescribed it. She was 13 months when we were done with the brace all together. It was longer than I had hoped and longer than we were told it would be, but the doctor said that this is the perfect outcome with no surgery.
I found some pictures of her in the harness of everyday life. Other people holding her, sleeping on her Daddy, falling asleep on the changing pad.
https://picasaweb.google.com/Aggiedjc/Brace?authuser=0&authkey=Gv1sRgCPXOitbamtCHNQ&feat=directlink
Here are posts about her brace starting at 6 months. I wasn't blogging when she was in the harness:
http://autumnmakesmesing.blogspot.com/search/label/brace
I feel like I could talk and talk about it, and I probably have talked enough for now. But if you have any questions, I'm happy to talk some more.
I don't know a thing about the harness, but I am so so sorry you are facing this additional hurdle. my thoughts go out to you.
ReplyDeleteMo
Poor little thing! I don't know anything about it but I am interested in what you find. As always, my thoughts and love are with you!
ReplyDelete*hugs* Just for reference, I was the anonymous commenter who talked about hip dysplasia on your previous post.
ReplyDeleteDon't worry about having your pity party. Of course it sucks to have to be dealing with this. I think it must be harder to find out later too. My daughter was diagnosed more or less at birth and went into the harness at two weeks. It was almost weirder having her out of it.
I might just dig through my notes and photos and do a full blog post on hip dysplasia, but here's a cliff notes version on the pavlik harness.
It looks overwhelming when you first see it, this massive tangle of straps but you get used to it incredibly fast, and it seems to be typical for doctors to put marks on where you fasten it with a sharpie. It's padded with cotton-wool-stuff where-ever it touches the baby.
Personally speaking, my daughter wasn't one whit bothered when it was put on. She used to kick like crazy when it was off (for her bath and some changes), just relishing the freedom to stretch her legs out, but that was all.
Once it was removed permanently, she had some sleep issues, because she would kick in her sleep and wake herself up.
I found it weird to hold her at first, but I soon got used to it. I had no problem carrying her in a moby wrap in her harness either--can't speak for any other baby carriers.
I also felt self-conscious when out and about with her in public at first, but again soon got used to it. Nobody ever asked, and I got into the habit of explaining automatically if I was talking to another mother. It did mean she was obliged to recline in a very unladylike position, but we found that funny after awhile.
Worst thing about it, hands down, was how gunky it got. My daughter was constantly spitting up, and despite my best efforts, it was constantly getting doused with sour milk. There was no easy way of cleaning it either. I tried hand washing it once, but all that fleecy padding took forever to dry, and I ended up having to put it back on her still wet. Ugh. But you don't get a spare so you can wear one, wash one. Ask your doctor for advice about washing; maybe they'll be better about that than mine was.
Clothing is also a pain. Because my daughter had it in her infancy, I ended up putting a short dress over the harness, leaving her legs bare and covering the lot with blankets. At least dresses are an option for girls! I found that I could use those all in one sleeper suits as well, if I put her in a large one and left the crotch unbuttoned.
Obviously, if I put the harness on over her clothes, I could dress her in anything, but that made changes such a hassle, I preferred to put clothes over the harness. (Changing the diaper is perfectly doable--you'll struggle the first couple of times and then get the swing of it.)
The harness comes with little booties, so at least you won't need to worry about socks--but you'll miss her feet. Take pictures now! That said, I have a friend who just cut the booties off her harness, after checking with the doctor, so she could see her daughter's toes again.
Finally, if you swaddle to sleep, start looking for alternatives. I couldn't find any kind of swaddling solutions when I had my daughter in harness (but I've since heard of swaddle straps, which might work?), and I ended up switching to sleep sacks--she's in them to this day. These are also a great option for keeping warm when out and about, although I never used them like that.
Good luck! It sucks, but it doesn't last that long. I wanted to incinerate our harness by the time we were done, but I tucked it away, and I'm looking forward to getting it out to show her many years from now. It's a rather cool little souvenir of her babyhood.
My mother, grandmother and sister all had it. They never caught it with my grandma until she was an adult and she suffers now. My mom had numerous surgeries as a child but is fine now. My sister wore braces for maybe a year and is also fine now.
ReplyDeleteI'm sorry you are all going through this, but I am glad they caught it early and that there are women out there who can offer you support. (hugs)
ReplyDeleteLove,
Maddy
hey - this blogger just linked to me and when I clicked over, I saw that they were posting on this very thing! so wanted to pass along : )
ReplyDeletehttp://anembarrassment.blogspot.com/
I'm so sorry for an additional hurdle. You are entitled to a pity party for sure, and then you're right--you'll attack this with the gusto you've attacked everything you've had to battle. Hang in there, hon.
ReplyDeleteI know nothing about hip dysplasia, I'm sorry I can't help there. But I wanted to say I'm sorry, and I totally hear you about aching when your child does. It is so tough. I know you'll do all the best things for her, and you both will be ok in the end. But, ugh! It does suck.
ReplyDeleteThis sucks. I don't know anything about the harness but it sounds from other commenters that babies seem to tolerate it well. I hope LMI's time in the harness is short and goes by quick. Hang in there.
ReplyDeleteLMI is a lucky little girl to have you on the case. I'm sorry you are going through this,but I know you are going to do everything in your power to take great care of her.
ReplyDeleteOooohhhh noooo! I believe Danielle of HappElly Ever After (a blog I follow) her daughter has Hip Dysplasia. She was online ivf.ca and that's how I met her. I am sorry you've hit ANOTHER bump in the road R...you've certainly had your share. But here's hoping this bump will be over soon. Another mom you might want to connect with is AuntieEm...her twin daughters both carry the same bone disease she has and already at less than 8 weeks old have suffered each 8 leg fractures...and will continue to do so until they are 5 years old. Anyway...just thought you might want to reach out to some mom's who have been in your shoes. Take care...
ReplyDeleteI was actually born with developmental hip dysplasia and spent the first 6 weeks of my life in the 1969 version of that harness. Obviously, I don't remember too much of that experience but if it makes you feel any better, it completely cured the problem and I was none the worse for wear. Apparently, it's an issue that's more common with girls than with boys.
ReplyDeleteI know how you feel though. I had a complete meltdown last week after DD had to be hospitalized with jaundice. It really was no big deal, but I was exhausted and stressed out and it broke my heart leaving her alone under that stupid light at only 3 days old, with that ridiculous blindfold, which she hated. She got used to the blindfold and eventually stopped crying but I think the experience was harder on me than it was on her. Hang in there!
Oh R, you didn't need this added stress. And I am sorry LMI will need to be restricted by a harness. But I am glad that it has been caught and that an effective treatment has been suggested. I am hopeful that there is help for her that's available. Hang in there, dear friend. Just take it one moment at a time.
ReplyDeleteYes...i do know someone...on ivf.ca
ReplyDeleteher name is designerbug (she's a vet of the site) and her baby had the EXACT same problems. email her and you will get tons of support.
jen
f_stop_genie@yahoo.com (my email)
Just realized that LisainSK also sited the same lady as i did. Definitely contact her - she's a great person and a great resource. if you email me (f_stop_genie@yahoo.com) i can send you a link....
ReplyDeletebut have no fear - her daughter is now in perfect health. it feels alot more intense than it is....your lmi will recover and be just fine.
Oh yea R, a person failed to will need this specific additional anxiety. Using this program . i am sorry LMI should be confined by the funnel. But I am delighted who's continues to be found knowning that very effective treatments has been suggested. I am positive that there's assist on her you can do. Stay, precious good friend. Simply take the idea a single instant at the same time.
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