Home almost 4 weeks.
Yesterday was our first appointment with the orthopedic surgeon to check out Kaia's hip dysplasia since she has been home.
It did not go well.
I don't think I've mentioned it on here, but the Pavlik harness that Kaia wears to keep her hip in the proper position is a piece of GARBAGE. It is held on by Velcro that DOES NOT WORK. The 'hook' portion of the Velcro is fine, but the 'fuzz' that it's suppose to stick to doesn't hold. You know that sound that really good Velcro makes when it is ripped open? A loud RIIPPPPPP sound? Well the Velcro on Kaia's harness makes a soft 'piff' sound when being opened.
In an attempt to fix this, about two weeks ago Brian decided to take matters into his own hands. To reinforce the harness he went to the fabric store, bought some of the 'fuzz' that Velcro tabs stick to and sewed it to the harness in order to get it to stay on and not 'pop open' every time she moved. It seemed to be working and the harness was at least staying put.
Which would have been great, except that Kaia's hip has NOT been in the correct position and therefore for the last SIX WEEKS that she has been wearing the damn thing it's been doing exactly NOTHING!!!!
That's right folks. My kid's hip is still dislocated and the harness which was supposed to be 'holding it in position' so that the socket could grow around the ball joint of her leg was set up improperly and was literally holding her hip OUT of position this entire time.
The worst part was when the surgeon popped her hip back into place yesterday Kaia seemed to jerk her whole body and then started to SCREAM. And screamed. And cried. For over an HOUR afterwards. Then she was whimpering and crying out every time she would move and wouldn't let us put her down all afternoon. Both Brian and I cried. It was awful. We felt terrible for her and were so afraid she was in a lot of pain. I gave her Tylenol yesterday and over night and thankfully today she seems much better. I hope I NEVER have to see that again. I wanted to kill him after he did it yesterday. It looked so painful and I was angry that he did it without any sort of pain meds or warning to us that it might hurt her.
What is also crazy is that her legs are in a completely different position now that she is in the harness 'properly'. I can't believe we (and all the medical people who have seen her the last 6 weeks) didn't clue into this.
To say we were upset yesterday both watching our child in pain and to hear how badly this whole "Pavlik harness" thing has been screwed up was an understatement. The problem was that when the orthopedic surgeon set her up in the harness initially he told us it would be fine to take her out for baths and to change her clothes. So we did. Lots. We treated her like a normal baby, who just needed to wear a brace over her outfits. No biggie. However, her hip is SO unstable likely the first time we took her out of the harness all those weeks ago her hip dislocated again and was never put back in place. Yesterday he mentioned "oh, well you might want to keep her in the harness at all times for awhile now".
I am very upset that this doctor never came back to check on her in the NICU after applying the harness. That was 6 weeks ago. You think they might have wanted to check it before now. Also now that I understand how unstable her hip is, it's appalling that the orthopedic surgeon never thought to tell us it might be best if she wore the harness 24/7. In this way we'd have to treat her as though she is wearing a cast, not a brace. Braces come off to wash. Casts do not. Kaia's pediatrician was no help either. She's seen Kaia a few times since her discharge from the hospital and could obviously feel that her hip was out of joint. Why she didn't think that was a problem, when the harness is supposed to be holding her hip in joint so it can grow properly is beyond me.
So, I am now pushing for a referral to the children's hospital where I work. Once we get there I hope we will be fitted for a new harness that has working Velcro (although this harness's Velcro might be just fine now that we won't be opening and closing the tabs so often since we won't be taking if off). I also hope that I'll get more clues as to how to care for a kid who is wearing a body harness instead of the absolutely nothing I've been told so far.
Such as: What clothes are best to dress her in? It's going to get cold here soon and she can't really wear pants. Are there any positions she can't lay in? For example, I've been trying to breastfeed her in the cross-cradle hold...but that puts pressure on her hips and legs, so maybe that's not the best idea? In that case, how should I hold her when I (am still attempting) to breastfeed her? Are there any parts of the harness I can remove in order to bathe her? What if she pukes or poops on it? Do I spot clean? With what? How do I monitor her skin integrity under the booties? Are there any worrying symptoms I should be on the look out for? I read on the Internet that you have to watch to make sure she can still move her leg, otherwise this can indicate nerve damage...but her doctor's never told me about this and I'm not sure if it is an issue I need to concern myself with.
I could go on with my list of questions, but I won't. You get the idea. Basically in hospital they put Kaia in the harness and didn't tell me anything else. When I asked if she could come out for baths they said yes. If I can't take her out of the harness EVER then a whole new set of concerns comes up. Which you think an orthopedic surgeon who has been doing this since 1987 would realize...but I guess not.
It's also sad that in addition to all the problems we've had breastfeeding, we've now lost bath time. And cute outfits. And snuggles without a harness in the way.
Kaia, maybe this will one day all seem like a funny memory of 'when you were a baby'...but right now it's really hard. And sad. And stressful. I just want things to be easy for you. Or at least not so hard.