Friday, January 21, 2011

this is real

{I've been wanting to post about my initial feelings after Juno was diagnosed with hip dysplasia for a while... but I haven't been able to word things right until now. At least, I hope I'm wording this right}
Logically, I know that hip dysplasia, in the grand scheme of things, is really no big deal. It's easily diagnosed, easily treated, and Juno will have no lasting effects after her treatment. I am so grateful for this and I'm so grateful to live near one of the best children's hospitals in the country. In fact, I'm careful to never say she has "health problems" because I feel like that makes it seem much more serious than it really is.
However, even though I know there are worse things to deal with, that doesn't necessarily make this easier. It's still hard. Hip dysplasia has changed everything I do with Juno--how I dress her, how I feed her, how often I can bathe her, how she sleeps, her happiness. It's a lot of little things, but added all together it is a bit overwhelming.
I've really struggled with my feelings over the past month. To be honest, I've gone through a bit of a mourning process since Juno was diagnosed. I've mourned having a "normal" baby and being able to do normal things with her. I wouldn't change my darling girl, but I would change our situation if I could. And on top of wishing things were working out differently, I've struggled with guilt because in the end I do have a very healthy little girl and I don't want to seem ungrateful for that.
In the past few days I've had the chance to talk to a few dear friends and neighbors about how I've been feeling, and to my surprise, they completely understood the mourning I've gone through.
These feelings are valid.
It's ok to mourn after a diagnosis that changes your life.
And it's ok to ask for help, which is a lesson I finally learned today.


Adam and the Girls said...

I found your blog through Kathryn Anderson (hope that is o.k.) You grew up in my Mom's ward in Nashville and I was interested in seeing how you were doing in Utah.....Anyway, after reading this, I wondered if you wouldn't mind my comment.....your feelings are very valid. Even though there is a treatment for this, I am sure it is still very difficult to have this situation at hand. My 2nd daughter had an ultrasound for this same condition, but she checked out to be was a tough day for me though. I was very nervous. I hope you continue to express your emotions (it is healthy to do this) and that you will find comfort from our Savior and your family/friends very soon. Take care. ~Jeffi

Julie Nickerson said...

I commented on your blog before. I just wanted to reach out to you because I saw your comment on the Hip Dysplasia Group on Baby Center and that your doctor sounded like he wanted to rush into surgery.

I would encouraged you to get a second opinion. My daughter, Sage, is almost 7 months old and has been in a brace since she was 4 weeks old. She made great process at first in the Palvik but then made no progress in it from 2-5 months. My doctor moved her to the German Abduction Brace and she made huge process in 3 weeks at 6 months old. Most doctors would say that is too late (and would have given up on Sage, but her doc really believes she can avoid the surgery) and if you read on the group a lot of babies have already had the surgery by Sage's age. Sage's doctor has been doing this for 30+ years and she says too many doctors rush people into the surgery. She says it is actually better to wait it out and be in the brace as long as possible. And I believer her since Sage is finally making progress at 6 months.

Your feelings are valid and it is totally ok to let yourself mourn. It is good and healing to admit it and embrace it.

Being in the same situation as you, I totally understand your pain. I just wanted to let you know I am here if you want to email me. I have gone through the same emotions as you.

Praying for your precious Juno.

Christie said...

Oh, Kate! It makes me sad to know you're going through this but even more sad that you feel guilty. Somebody else may have a baby with what you think are worse problems but there are also babies 100% healthy. It just isn't good to compare. Juno's hip problems are real and it's okay that it's hard for you! I mean, it's not "okay" but it's okay for you to mourn them. We think about you guys a lot and hope Juno and your family both get whatever help you're in need of.

abarnold88 said...

I found your blog while searching for information on how to deal with the pavlik harness. I completely understand your feelings. My second daughter was diagnosed at 4 months right around the the end of the year. It was a really hard adjustment to make, and I cried a lot. She had also already been diagnosed with reflux at 6 weeks and had been on Zantac since then. It was working until we got the harness.She was getting up at the least every 2 hours at night and was not sleeping during the day at all. About a week and a half after being in the harness her pediatrician switched us to Prevacid (which is more expensive) and it has made a big difference. We have about one more week before her next ultrasound to see if she has made any progress.
Basically everything that you described in your post is exactly what I have been feeling too. So you are not alone in feeling this way. I really appreciate reading your posts about it, and I also really liked the tip about dressing her in babylegs!

Kate said...

Thank you for your sweet comments--they all made me cry. Tempe and Helena probably have forgotten what I look like when I'm NOT crying! The good thing about this whole experience is that I've learned how many people care about our family. I'm truly grateful.

Jamie said...

Oh Kate! I am a little behind with blogs, but I wanted you to know I am thinking of you! We have had mild issues with our little Zachary... He has been in physical therapy for 6 months and is *behind* in development. These are things a parent never wants to hear. We know it's not serious and that it's only gross motor, but I think it's difficult to accept that your child needs more help than you can give them, and that they have to be uncomfortable to be treated (among other things...) I'm finally accepting that THIS is OUR reality and that we're all ok, but it has definitely been an adjustment. We love you guys and I hope that my ramblings let you know that I feel just a little of what you are going through. Juno is still a perfect little baby and she is so lucky to have such a great mommy (and family)!

The Backman's said...

Hey it has been too long I didn't even know you were pregnant let alone already have two month old. She is way cute!! That must be really hard, but I know how strong you are and you'll get through it. However, I totally think your feelings are valid. I hope things improve for Juno!!
I'm not sure I have your email, but here is mine and you can email me and then I will have yours to send you my address.

Jonny said...

I love you Kate! We are praying for Juno. Feel free to complain about this--I am sure it's very difficult! -Rach

Lisa said...

I'm so sorry that I haven't read your blog for several days. Just reading the comments has made me cry! Kate, your feelings are valid and poignant. Thank you for sharing such a personal experience with all of us. We all need each other!

Deana said...

Thank you, first of all, for this entry. I found out yesterday that my 2-month-old daughter, Kate, has DDH, and we were sent home in a Pavlik harness, which as you know...may or may not help. We had been told her ultrasound and x-rays looked fine (which they aren't we now know), so we were blind sided with yesterday's diagnosis. I am feeling pretty much EXACTLY how you described in this post, which is why I'm so thankful you wrote it. I too struggle with the guilt over these sad emotions because I do know it could be so much worse. But like you said, everything is different...feeding, changing, bathing (or lack there of) is so different that I wish I had known yesterday morning was her last without a brace for a while. I'd have done things differently. I'd have soaked in the "normalcy" and pureness of it all. I'd have hugged her a little tighter without all the harness straps. As you can see, my emotions are still very, very raw. But seeing that someone else understands these feelings really helps. So thank you. Juno is adorable. :) (All of you are!)