Saturday, October 23, 2010

Seven Months!

I really can't believe how time has flown by. L.E. is seven months old tomorrow. She's a happy girl; my only complaint is how hard it is to get her to sleep.
Let me back up a bit. We had a six-month check-up with Dr. P. She had x-rays done and was so good while they took them. The cutest thing was the little tiny lead circle they put on her abdomen to protect her. She didn't move a muscle and smiled on cue when the x-ray techs made googly-eyes and coos at her.
We got good news! Her hips are stable and looking great. The brace only has to be worn at night and during naps. Since her nap schedule is an oxymoron, we've taken to just putting the brace on her after she gets home from daycare and taking it off when she wakes up in the morning. Unfortunately, she hates it even more now. L.E. has learned to roll and crawl like a normal baby and loves sleeping curled up in the fetal position. That, of course, is impossible with her brace on. So she cries and fusses when we put her down at night. One night when she was sick with a cold, we took the brace off of her and she slept for a solid eight hours. That was a pretty stupid decision. I know babies aren't supposed to have the ability to manipulate their parents, but L.E. certainly knows how to get what she wants. Her dad is such a softie for her that he will remove the brace just to get her to stop crying. All that does is make me even more upset. I feel guilty enough as it is about her DDH; now i feel as though I'm failing her by taking the brace off. So I made the decision to put it back on her every single night. I haven't slept since.
Traditional sleep-training doesn't apply to us here, does it? I've read books and websites...watched DVDs and nothing seems to get her to go down easily. The only chance I have is to play Train's "Hey Soul Sister" on repeat at least 5 times. She'll at least sleep for a bit after that. I guess my only option is to keep at it and hope she learns to soothe herself while wearing her "friend."
On another note, I can't say how grateful I am for the new website hipdysplasia.org. It's so wonderful to read other parents' stories that are so similar to my own. I wish it was around seven months ago!

Friday, October 8, 2010

Larry the Cable Guy: Dysplasia Hero.

A friend told me about this article today and I couldn't believe it. Looking past the fact that Larry the Cable Guy actually has made more than $5,000,000, he and his wife Cara have a 4-year-old son who was born with DDH. Cara was as shocked as I was to the lack of resources out there for such a common abnormality. Their goal with starting up the International Hip Dysplasia Institute at Arnold Palmer Medical Center is to exchange knowledge and educate parents. The long-term goal is to cure DDH without surgery.
I wish they were around 6 months ago, when L.E. was born and diagnosed. There were very little resources available and I'm happy that the IHDI has such a thorough website.  And I couldn't be more grateful for the Cable Guy family for giving back so much. I might just have to go rent his health inspector movie...

She cried. I cried. And cried.

My name is Hip-Baby Mama, and I suffer from post-partum depression.
I know I've mentioned it in previous posts, but I finally feel OK enough to talk about the first few months with L.E. and the battle raging inside my own head. As a little bit of background, I've been depressed in the past but have been seeing a very nice therapist for the last 5 years. Being pregnant made me absolutely elated so I stopped therapy. A hint of sadness crept up during the final few weeks of being pregnant but I chalked that up to new-mommy jitters. (I just made that term up)
I had a scheduled c-section with L.E. because she never descended into the birth canal. What I know now is that she was transverse and since her hips were dislocated, she may have never dropped. Even if I had a normal labor, it most likely would have ended with an emergency surgery. I know a lot of women who had c-sections feel like they were cheated out of the whole natural birthing experience but I really didn't care at that point. I wanted a healthy baby and if I had to cut her out myself to get her, I would have.
Overall, the surgery itself wasn't a bad experience. T was by my side the whole time and the anesthesiologist talked me through the whole process. I felt L.E. being lifted out of me and she was immediately taken over to the clean/weigh station. (Seems very much like a truck stop, doesn't it?) T didn't let her out of his sight. But I didn't get to hold her for what seemed like forever. Did I miss out on the first bonding experience? Is that what caused the inner anguish I had yet to face?
The next few hours were a blur. I was in the recovery room. I was moved to a regular room. I was a MOM! She was the most beautiful baby I'd ever seen. (She still is.) Our pediatrician was there about 2 hours after she was born and that's when he broke the DDH news to us. While L.E. was sleeping that afternoon, I grabbed the laptop and began Googling. I was horrified by the photos of little babies in huge casts. I cried. And cried. And pretty much have cried every day since then.
I've come to terms with L.E.'s DDH. This blog has certainly helped. I haven't heard from any other hip-parents that randomly stumble across me but the support I've gotten from friends who've taken the time to read this has been overwhelming. But I still couldn't shake the nagging feeling that I did something wrong, I screwed up, L.E. deserves a better mom than me...since day 1 I've felt this way.
We came home too early. I thought nursing was going well but by L.E.'s 5th day, she'd lost 1-1/2 lbs. Turns out she wasn't sucking properly. One night in the ER later, I was hooked up to a rented breast pump for the next 6 weeks while T fed her from bottles. Instead of bonding with her, I was in the back room pumping milk for her, feeling like a cow, every 3 hours around the clock. She wouldn't smile for me. I cried. And cried. She cried. And cried. I would try to bargain with her...Tell her that we were a team and we could get through this together. She cried harder. I cried harder. T went back to work. I never felt more alone.
I feel compelled to insert here that no matter how upset and depressed I was, I still loved L.E. unconditionally. I would breathe in that new baby smell like a junkie getting a fix. I felt guilty when I went to the doctor and didn't take her with me. I needed to be around her all the time and when she cried, I felt like somebody was stabbing me in the heart. I didn't want her to be in any pain that I couldn't cure. I'm her mommy, I'm supposed to make everything better. But at 4 weeks, L.E. just didn't care who was around. I took it personally; I felt like I was disappointing her.
My parents showed up week 5. I was sleep-deprived, bitter, upset, feeling inept and and just wanted my mom. But Mom was focused on her new grand-baby. Sure, L.E. would stop crying the moment her grandma was in the room. I felt like I was being stabbed. I turned into a teenager again, stopping short of jumping up and down and screaming, "Pay attention to ME for a change!" My dad asked me if I was depressed because I wasn't as skinny as I was before. I almost punched him in the face.
They left the same day L.E. went from her Pavlik harness to the abduction brace. She cried. And cried. Was it the new brace? Or was it that Grandma wasn't there? For my own sanity, I blamed the brace.
I make it sound like the crying was non-stop. It was nowhere near what the parents of colicky babies go through and I almost feel badly for even thinking that I had it rough. But at the same time, I was convinced my baby was going to have nerve-cutting surgery when she was less than a year old. It tore at me every day. I felt that if she didn't have the brace on every single moment, she was going to have surgery and casts. If I didn't get the brace back on her RIGHT AFTER her bath, it was surgery and casts. We flew across the country and she didn't wear her brace on the plane. I was terrified that was going to be the day that her hips would decide to go into their sockets and the brace wasn't there to help so they would fail. I felt like a bad parent every single moment. I cried. And cried.
The weather got warm and L.E. started smiling. She smiles ALL THE TIME. It made my heart burst. I finally felt like I could do this, I could be a great mom.

Saturday, August 28, 2010

Five months old!



Wow, L.E. is 5 months old already! These last few months have flown by. I'm pretty sure it's because I've become the very thing that a lot of women despise: a working mom. I went back to work at the end of June. It's been very stressful; a lot has changed since I went on maternity leave. My boss was let go along with 4 other people. I now report to my friend. As tough as it is to take direction from someone that i've gotten drunk with periodically (before pregnancy, obviously), he has done a great job with getting things done and is very understanding with my putting L.E. first. As long as I get my work done, that is. I'm pretty much non-stop from the moment I walk into the office until i burn out mid-afternoon and need a baby fix. Then it's go-go-go till 5. I feel like I'm never close to finishing everything but I'm doing the best I can.
L.E. has been at my company's onsite daycare. Talk about an awesome benefit! I can visit her every day and I usually do. And to make the transition even easier, L.E. absolutely LOVES daycare! She loves being around other babies and she has zero stranger-danger. In fact, we think she gets a little crankier on weekends because her little friends aren't around. She's quite the social butterfly.
She's still in her brace for pretty much the entire day. I can tell that the daycare's educarers really hate dealing with it but only for reasons that affect L.E. It's not that inconvenient for them but they see how much happier she is without it when they change her diaper. We've been much more liberal with it; she gets a little break from the brace every morning for her roly-poly time. We set up "thunderdome" (her play mat) along with a blanket and she just rolls back and forth from her back to her tummy. We couldn't be happier that she met this milestone at pretty much the same time as other babies her age. I was greatly worried the brace would hinder her development in those areas. Dr. P. assured us that it wouldn't and that she would learn to crawl with it on but quite frankly, she has no desire to do so. It's pretty heavy; one nice thing is that she can sit up unattended while wearing it but gravity usually takes over in the end.
Our next appointment to check her progress is mid-September. She'll have some more x-rays done and hopefully her sockets are as deep as they're supposed to be. Then she'll just be in the brace at night. Fingers crossed.
Not much else to report except that L.E. is a very happy baby. She smiles and laughs all the time. She has this amazing affect on people when they see her. She's absolutely mesmerizing.
I promise I'll post more often. Till then, take care!

Friday, June 18, 2010

Long Hot Summer


Great news today! L.E.'s hip sockets aren't as shallow as they once were. That means as of right now, she doesn't need casts put on. She'll have to wear the brace all day until September. If everything looks good then, she'll just be in it to sleep.
Dr. P. told us something interesting: once the hips are in their sockets, there really isn't scientific proof that the brace does anything more. But we'll err on the side of caution and keep her in the brace as much as possible. But it goes without saying that we won't be as militant about it as we were before. If she's asleep in her car seat, I'm not going to wake her up to put the brace on anymore.
It's finally summertime here and L.E.'s getting used to having the brace on her bare legs. It doesn't seem to bother her at all. She's a very happy baby for the most part. She has her moments, what baby doesn't, but overall she's very smiley and chatty. She coos so much at us that we feel like when she starts talking for real she'll have lots to say.
I'm not quite sure what I'll post about for the next three months. Probably my ongoing adventure in motherhood. It's not a road i'd ever imagined myself traveling but I'm happy I did. L.E. was born with this DDH flaw but to me she's absolutely perfect and I wouldn't have it any other way.

Wednesday, June 16, 2010

It's been a while

I feel badly that I haven't posted in a while. A lot has happened in the last few weeks, both good and bad. The good news is L.E.'s hips are in their sockets, thanks to the abduction brace. We had an ultrasound this morning and the same radiologist as last time said he noticed a difference in the depth of her sockets but he'll have to study the images to make sure. We have an appointment with Dr. P. on Friday and hopefully the good news will continue.
We visited Pittsburgh for 10 days and I can't say enough good things about how well L.E. traveled. Unfortunately, she was not a happy camper once we were in the 'burgh. We went because my father-in-law had surgery and he needed some help with recovery. I'm no doctor but I'm positive that seeing his first granddaughter was the best medicine. It's too bad that she was a little fuss-monkey the whole time. It's hard to tell why. I'm convinced it was something in the water. For real. She was extra gassy the whole trip and there were more sleepless nights than usual. But she got to meet lots of family and friends including my beloved grandfather Pap. He was tickled pink to meet L.E. and I'm so happy that she immediately smiled at him when they met. Pap is 89 years old and has some health issues...of course he does, he's 89! That was the bad news but we're staying positive and upbeat.
I go back to work next week and I'm bittersweet about it. I love spending time with my baby girl but I'm just not the stay-at-home type. She'll be at my job's on-site daycare so I'll be able to visit her plenty. I'm looking forward to some adult interaction; my conversation skills have been limited to sleep habits and diapering...
I'll post again after our next Dr. P. appointment.

Monday, May 17, 2010

First week in the brace


L.E. has been in her brace for a week now. Her dad and I have gotten used to it quite quickly. It's a lot larger than the harness but it comes off much easier so diaper changes aren't as cumbersome. Also, it doesn't fit when she's in her car seat so she gets a little break from it every time she goes some place which makes her happy.
We have an appointment this Friday with the out-of-town expert. I don't count that as a second opinion because the guy will be working with Dr. P. I don't know what my expectations are other than some honest answers about what we're facing and a timeline of how it will pan out. I don't buy clothes for L.E. anymore because I have no idea if she'll be in casts in the fall or if the brace will stay on or what. I get that this isn't an exact science but Dr. P's treatment options change every time we see him. It will be nice to get a straight answer.
I have some questions, too. Will L.E. be able to roll over on her own with this brace? Does this mean her risk of SIDS is non-existent? Will it hinder her ability to crawl? Does her lower back hurt while she's sleeping because her legs are so weighted? (In yoga, it's called "dead-bug pose")
I'm impressed with her ability to push herself up during tummy-time and I hope it will help strengthen her upper body in the long run. She can still fit in her swing and her bouncy seat. The Bumbo, on the other hand, will have to stay in the closet.
So many questions. I haven't done much to find other people in the area that have children with DDH. We saw a couple with their daughter both at the doctor's office and at the orthotics outfitter and I'm still kicking myself for not getting their name. Their daughter had surgery at 18 months. She was still in casts.
L.E. is lucky her DDH was caught on day 1. Every day I hope that she'll have no memory of DDH except for photos and our stories.

Tuesday, May 11, 2010

Odds

We saw Dr. P. yesterday and unfortunately, L.E.'s hips still weren't in place. He prescribed a different brace that will hopefully be more effective. It goes around her waist and secures her hips at a 70-degree angle. It's much easier to get on and off than the Pavlik harness was but it's not as practical. She doesn't fit in her carseat with it on so we'll have to take it off when she's in the seat. She initially wasn't a huge fan of the brace, as in she cried nonstop for a really long time. But she also could have been in hysterics because her grandparents left yesterday after catering to her every whim for the last two weeks. L.E. is certainly a lucky granddaughter.
Dr. P. says a specialist with over 30 years of pediatric-orthopedic experience will be operating a clinic here next Friday. We scheduled an appointment with him so hopefully we'll get the benefit of his experience, too. I feel like Dr. P. gives us a different scenario every time we've seen him and I really want a second opinion. At least Dr. P. has been a bit nicer as time goes by.
So far, L.E. has gone against the grain on every facet of dysplasia. One in 1000 babies are born with it; 80% are fixed with the Pavlik harness; 50% have success with the brace...let's hope this is the one odd she's not against!

Saturday, May 1, 2010

Ten Days

We had an appointment with Dr. P. yesterday and I'm sad to say that the news wasn't great. L.E.'s hips still aren't fusing into the sockets. He told us that if that's still the case in ten days, she gets out of the harness. In six months she'll be put into casts. This is absolutely NOT what I wanted to hear. The casts look horrible. They cover her whole legs, go around her waste and have a tiny hole for her diaper area. Couple that with the process of getting the casts on: it's done in the operating room with all sorts of injections and tests. She'll be in one cast for six weeks; then they take it off, repeat the tests and put her back into one for another six weeks. That's three months total. I never thought I'd be rooting for her to have the harness on longer but I sure am now.
I'm trying to be optimistic that her hips will be fine in ten days but I'm still mentally preparing for the casts. Dr. P. was actually more forthcoming at this appointment than he had been through this entire process. That could have been because I had my mom (an orthopaedic nurse) with me at the appointment. He also explained that none of these are fool-proof. She could be in the casts and still need surgery afterwards.
How am I feeling about this? Devastated. I feel like I failed somehow. No matter how many people say there is nothing I could have done, I still feel like an inept parent. Maybe I didn't have her harness on right. Maybe I could have place her hips out more while she's sleeping. Even Dr. P. said we've done everything we can. But guilt is a nagging feeling that I don't shake easily.
All I can do over the next ten days is make sure her harness is on right and pray to God.

Wednesday, April 28, 2010

Treatment so far

I thought I'd give a rundown of what L.E. has been through so far. Two hours after she was born, our pediatrician diagnosed her with DDH. He referred us to a pediatric orthopedist, whom I shall call Dr. P. Her first appointment with Dr. P. was an emotional one for her dad and I mostly because Dr. P. is very cold. He bluntly told us that she would be in either a harness, brace or cast for the first year of her life. Even if her hips fused into their sockets, he is holding fast to this recommended aggressive treatment. I cried in the examination room and Dr. P. showed no emotion towards me whatsoever. I know doctors make up for their lack of compassion with their expertise but I expected a little bit more from someone specializing in pediatrics. Especially from someone who has children of his own.
Dr. P. prescribed L.E. the Pavlik Harness and sent us over to an orthotic place for it. The people there were fantastic. The gentleman that outfitted L.E. took such good care of her and was extremely patient in teaching us how the harness works. He told us she could wear it either over or under her clothes. I was shocked by how stiff and scratchy it felt but L.E. doesn't seem to mind it at all.
We've had follow-up appointments with Dr. P. every week. He hasn't warmed up much but has gotten a little better. He checks her harness' fit every time. At our last appointment, he said that her hips were definitely in their sockets. Once again, I asked how long she'd be in a harness and he is sticking with his one-year assumption. She'll be in the harness for three months and then a brace for another three. After six months, she'll only be in the brace at night.
He scheduled us an ultrasound for last week. L.E. was so good for the whole procedure! She was awake but didn't fuss at all. After it was done, the radiologist asked us why we were there. We were taken aback and said that she had DDH. He shrugged and said, "OK. Whatever." Again, another doctor lacking a personality. I took that as a glimmer of hope that her treatment is working faster than Dr. P assumed. I guess we'll find out once he looks at her ultrasound images.

Saturday, April 17, 2010

Pavlik Harness: a love-hate relationship


I've mentioned the Pavlik harness and thought I'd post an image of it. L.E.'s is not as cute as this purple one. Hers is white with red clasps. I ask you, Swedish makers of the Pavlik harness: Why WHITE? I've seen pics of dark blue ones and wish we were that lucky.
L.E.'s now has been accented with pink Mylicon stains. She's only peed on it once and I think she'll eventually figure out that when she pees on it, it gets to come off for a few hours.
We have to remove the legs to change her diapers because she's a bit of a sprayer. We've managed to cover it up with clothes. She wears a onesie with the harness over it. We put socks on her feet so they don't get chafed. Not sure what summer will be like but for now, you can barely tell she has it on. Sometimes she looks like a linebacker, though

In her Easter outfit, you couldn't even tell she had it on. Fluffy bunny slippers do wonders for covering the harness up!

Hello

Hi. I decided to start this blog as a sort of therapy. When researching DDH in infants online, I couldn't find any resources that dealt with personal experiences. So this is my way of reaching out to other parents of hip-babies and letting them know that they're not alone. Yes, there are far worse diagnoses new babies can have other than Dysplasia. But when someone refers to your baby as "special needs" when all you want is to think they're completely normal with just a minor setback, it stabs you in the heart.
This blog is L.E.'s and my story of life with infant DDH.

Perfection Interrupted

It took a long time for me to want to have kids. I never had a maternal instinct in my whole life. Even my treatment of my Cabbage Patch Kids would have sent a CPS caseworker into a tailspin. But one day 18 months ago, it hit me like a flash. Something was missing in our lives. My husband T and I decided that having a baby was the fulfillment we both needed. Fast-forward to March 2010 and our beautiful L.E. was born. She was the perfect little baby girl, chubby and pink. But perfection was not the case. Our pediatrician immediately noticed her hips clicking out of their sockets.
L.E. was diagnosed with Developmental Dysplasia of the Hip (DDH). Her hips were not fused into their sockets properly. The pediatrician told me this less than 2 hours after delivery and all I could think to say was that our dog had that same thing when he was a puppy. $1800 in surgery costs later, he was cured. So I didn't think much about it until they came and took L.E. away to do an ultrasound and more tests. Our pediatrician made it seem like it would be a very simple treatment; she would wear a little cast for a few weeks and it was great that it was discovered so early. She would be able to run marathons some day! Once we were home from the hospital and I began Googling away, it started to sink in.
We started seeing a pediatric orthopedist that I would love to call Dr. Personality due to his lack of having one. He confirmed that her hips made "clunking" motions when he moved them in and out of their sockets. He prescribed her a Pavlik harness. When asked how long she would need to wear it he casually replied, "a year or so." A YEAR?! My beautiful baby girl was going to be wrapped in canvas and velcro for a year! All I could think about was the drawers full of beautiful clothes that were going to be accented with a hideous jumpsuit-type harness. I know I sound completely selfish and vain right now but that is honestly what I thought.
We're very fortunate that L.E. is not in any sort of pain from DDH at all. But with me being post-partum, I cry every day because my perfect soft little baby is wrapped in stiff crinkly-ness.