No Hips In... Again

We went in to Wednesday's operation excited to finally have both hips in place and officially start down the road to recovery.  After arriving at Doernbecher at 6 am, everything was going smooth and she went back into the OR right on time.  We were told the left hip was going in no matter what.  They were certain that the right hip would have made some progress.  After an hour we got a call from the OR nurse that they hadn't even started her 2 hour procedure, they were still working on positioning after the arthrogram.  We knew that wasn't a good sign.  10 minutes later, we were asked to wait in the consultation room... the room we've never been in but watched parents go into to privately discuss bad news.  Both surgeons came in to let us know that her right hip had made no progress.  It is too loose and the tendons just won't tighten back up around it.  We had the option to "roll the dice" and just keep pushing, but both of our surgeons recommended giving her a break.  They were afraid they could be causing more harm than good and putting her at high risk for AVN.  After 6 weeks of a Pavlik harness, 6 weeks and 1 day in a spica cast, and going under general anesthesia 4 times, we are back to where we started, with 2 hips out.  We were heart broken, again.  We couldn't have asked for 2 better doctors who were empathetic (one of them actually has been in our shoes with his own daughter), informative, and intelligent.  When she is 12 months, we will check in again and start coming up with plan E.  The next round will be when she is between 12 to 18 months old.  It is so frustrating to wait and know that we will be taking a mobile toddler and casting her again.  It is terrifying to know that there is no guarantee that things will work out the way we hope.  In the meantime, we are enjoying our cast free baby (and car bed free!).  We are so happy to hold our baby girl without a few inches of plaster in between us.  I've already been shopping and bought lots of fall clothes and leggings.  I signed her up for 6 weeks of swim lessons starting next Friday.  We've given her 3 baths in the last 2 days.  It's amazing how much more you enjoy the little things, when they've been taken away from you.  Rilynn isn't quite back to her old self yet, but she's a tough little cookie and I know she'll bounce back quickly.  She was in a lot of pain the first day and is still pretty sore and fussy.  She wants so badly to be active, but is cautious in making movements because her legs are still tender. 

Q & A 

What about crawling and walking?

We were pleasantly surprised that she can still learn to crawl and walk, just like any other kid.  If she does walk before the next round of procedures, she might have a little more sway to her booty.  

So why do we need to address the issue if she can still walk?  

Eventually, it will be very painful to walk with your hips out of socket.  As a child, she would end up with arthritis in her hips and would need full hip replacements before even reaching adulthood.   Babies and children heal faster and stronger than adults do. 

Have you considered getting a second opinion?

We’ve had 3 already.  Yes, we are looking into seeing if there is a doctor somewhere who specializes in DDH hip surgeries because this is not your typical case of DDH.  However, we feel pretty confident in our surgeons’ talent and knowledge and like that there is a team of them working together.

Are her legs skinny now that she’s out of the cast?

Ha ha ha!  Has Rilynn ever had skinny legs?  Nope! Those thighs are as chunky and yummy as ever and we love them to pieces!  

Where did we get her super cool purple chair?  

It’s for spica cast babies only!  Special ordered, custom made by a saint.  That chair saved our sanity and was worth every penny.

Thank you for all of the prayers, thoughts, unexpected cards, and messages.  Rilynn has a great team behind her and we are so appreciative of everyone's support.