So I took Juno to the ortho today. I haven't been worried about it all since we got such good news last month.
But I didn't even need the radiologist to tell me that her ultrasound looked bad. Last month, her hip was very close to being halfway covered by the socket (it should be at about 60% to be normal). This month it was not even close to being halfway covered. Her hip is even a bit worse than it was when we started treating her for DDH back in December.
So the ortho told me our two options at this point are to put her in a Spica cast, which has a 90% chance of success, or try the Pavlik harness again, which is down to a 30% chance of success at this point. He felt strongly that we should give the Pavlik one more shot before doing the much more difficult Spica cast, so Juno is back in the hated Pavlik harness for four weeks.
I mean, I guess there's a chance the Pavlik will work. It just seems like since it didn't work the first time we tried it, it's not going to work this time either, so we might as well skip it and go straight to something that will work. I just want to get it over with.
I hate to think that my happy, smiley, bubbly (literally, she blows bubbles all the time), cooing little baby is going to be miserable and uncomfortable again for who knows how long.
I hate it. I hate it. I hate it.
And what I'm really afraid of is this: I will be stressed and worried all month. Then, next month, the ultrasound will show just enough improvement to make us think that what we are doing is working. So I'll be happy and excited. Then, the next month, the ultrasound will show it getting worse again and I'll have to deal with these emotions all over again. I seriously just want to put her in a cast so I can deal with something real instead of the fear of something.
That's all for now, folks.
((hugs)) what an awful roller coaster.
ReplyDeleteDear Kate,
ReplyDeleteWe love you and you are in our prayers. I cried for you when I read your post. We're sending all our love and prayers to you and Juno and this time!
So sorry for the setback with your sweet Juno. I hope the pavlik really does the trick this time. Did the Dr say what the success rate would be with the other option if the pavlik doesn't work? I mean wil it be less than 90% the longer you wait?
ReplyDeleteHi Kate,
ReplyDeleteI'm so sorry you didn't get good news today. Please know we have been right where you are at.
Sage made good progress in the Pavlik for the first few weeks and after 3 months they started weaning her off. After 2 months of weaning, I thought our appt in Dec would show she was healed and then we get the crushing news she had regressed and was going in a different brace full time again (as you know, in the German Abduction brace). It was very discouraging.
So, I know the feeling of hearing progress and getting your hopes and then going back and hearing they have regressed. It is a roller coaster ride especially knowing that you have this really happy baby out of a brace.
We have had many rough nights due to the both braces. Sage still doesn't really sleep through the night at almost 9 months old.
All to say, I know every HD case is different, but I do just want to warn you that you don't need to rush into surgery. My doctor claims that doing surgery so young can result in more surgeries since their bones are still developing. We really wanted to try to avoid surgery, so we were willing to give the brace a year or longer. I know many parents get frustrated with the brace, but even after surgery they wear the brace for a few months. I guess I am a firm believer in keeping them in the brace for as long as possible. I know the brace may not work for every baby, but if it means avoiding surgery and staying in the brace longer, we thought it was worth it.
Sage is supposed to have only 2 weeks left in her brace, but I am constantly thinking "what if we go back and her hip has regressed and she is in the brace longer?" I'm constantly checking her leg fat rolls to see if they are even. It is very frustrating and a roller coaster ride, but I am hoping and trusting the Lord will heal our baby girls!
Please know I have been praying for Juno and your family!
Julie
Oh and more more thing...is your doctor just suggesting a cast without surgery? I didn't know they do just a cast.
ReplyDeleteYes, he said that at this age he would probaby not do surgery, just a cast. If he does decide to do surgery, it would be to lengthen a tendon.
ReplyDeleteThanks for the words of encouragement! Prayers for Sage!
Oh, wow, I didn't know that. That is way better then getting major surgery! I will be praying Juno has major progress and will be content in the Palvik so you don't have to think about the cast.
ReplyDeleteThanks for your prayers for Sage. I'll keep you posted!
Oh Kate, I'm so sorry for the sad and hard news. She is seriously such a beautiful baby, though! & what a trooper she is, which is wonderful for her & you!
ReplyDelete