Tuesday, November 12, 2013

Week 11 Complete

Chugging along...
Yes, it's definitely been a while since I've written an update on Kate's hip situation.  The reason?  Until recently there's been nothing to say!  We knew from the moment we found out Kate had hip dysplasia that it's something would take time.  It's a whole lot of waiting...waiting on her to grow to see if the harness would correct her hip.  She really had no problems over the last month...it was easy.  She even figured out how to get her legs out of her harness.  Which meant I had to start keeping socks pulled over her feet at all times...

October 29th doctor appointment
You may or may not remember this, but Kate's doctor told us at her last appointment that if Kate's x-rays looked good, she may be able to start only sleeping in a brace.

This made Brian and I ecstatic!  We watched the calendar anxiously awaiting October 29th.  We just couldn't wait for her to be free of that harness.  Our thoughts?  No more binding chest and shoulder straps to rub her skin or annoy her during tummy time, no more little indentions on her legs from the harness straps, no more socks 24-7, no more "policing" her legs during her baths, no more "bulk" and extra material when snuggling our sweet girl.  We were excited to feel her little body when he old her close.  We were excited to watch her play unrestricted...to watch her learn to roll over.  I was excited to not have to consider her harness when choosing her clothing.  No more looking at that dirty-looking dingy harness.  I mean, the list continues.

You can call it whatever you want: negativism, realism, or just plain mother's intuition...but somehow, I knew I shouldn't get my hopes up.  It's just that...it's a lot easier said than done.  I said to my mom and Brian on many occasions that month, "I know I shouldn't get my hopes up, but they're already there and there's not much I can do about it."

Our doctor came into the appointment with her latest x-rays (that morning) and her old x-rays.  Guess what?  Good news!  The hip is in socket and is growing in the direction we want it to!  Praise the Lord!  So then he proceeds to tell us he's ordering her a new brace that would only be the bottom half of her body, and that in a few more months' time, she could only sleep it in.  WHAT?!?!

Long story short (and trust me, you want to be spared...), our doctor "spaced" last appointment.  (His word, not mine.)  Although he found in his notes where he told us if Kate's hip had good progress, we'd move to only sleeping in a brace.  He just doesn't know why he told us that.  He assumes he did the math wrong and thought we were further along in her hip journey than we really are.  All he could do was apologize, but to me completely honestly...at the time, I didn't care that he was "sorry."  I was really, really sad and mad at him for making a careless mistake.  That's a horrible thing for a doctor to do to parents.  If he was not known to be THE BEST at what he does, we'd have another doctor already.  His bedside manner stinks.  But Kate's hip is getting better.  So we press on.

Rockin' in the Rhino Cruiser
Fast forward through all the emotional mess of getting used to a new brace again...and this is it.

It's a Rhino "Cruiser."  It's called a cruiser because it's supposed to allow older babies more mobility.  Problem is, Kate's muscles are on the weaker side for her age because her mobility has been restricted since 2 months old.  So, whereas some babies can scoot and walk in this brace...I don't see that happening for Kate.  Her doctor did say she could do a little tummy time without it every day, so we really make the most out of that playtime.

What we like about the new brace:
1.  It comes off!  We have to take it off for every diaper change and to change her clothes.  She can't wear it in her carseat because her legs are too wide.  So occasionally, we do get to hold our sweet baby without it.

2.  She can wear pants.  In fact, she has to wear pants or tights because she has to have something between her skin and the brace.

3.  There are no straps around her shoulders and chest, so it's easier to do her physical therapy and stretches for her torticollis.

4.  It's a bit easier for her to do tummy time in the brace as far as lifting the upper part of her body since there are no straps up there.

What we dislike about the new brace:
1.  It comes off.  (haha)  Changing diapers takes a long time....lol.  All day it's on, off, on, off, on, off.

2.  She is extremely limited in what she can do to play.  There's no rolling or much movement of her legs at all.  She just kinda lays there on her back if I'm not holding her up, which is bad for her head.

3.  It's bad for her head.  Kate's torticollis caused some "flat-ish" spots on her head early on.  Her pediatrician assured us that as she began to roll and sit up that she'd even it out and that she wouldn't need a helmet.  However, we have another 6 weeks of not really being able to roll during the day.  Even then, she'll still be sleeping in it at night, which will keep her on her back for about 11 hours at a time.  Needless to say, if we have to go the helmet route eventually, we'll be torn up about it.  We are truly tired of forcing our sweet, healthy, perfect baby to wear a corrective device.  We just want to let her be a baby already!

4.  It's hard and bulky.  It's plastic and foam as opposed to fabric like her harness, so she can be a bit of a challenge to hold and carry.  You have to get creative and change positions frequently.

The outlook
Christmas day is the plan to let Kate start only sleeping in her brace.  We are in prayer that we would not look SO forward to that day that we forget to savor the moments we have now.  She is a much, much happier baby out of her brace, so that makes it hard to put it back on when the time comes.  Right now Brian and I spend our time wearing ourselves out trying to think of new, creative ways to stimulate and entertain her and make her laugh.

I am fully aware that the honesty of our feelings can come across as whining.  Sorry if it does.  But really, we just need support through prayer.  And I feel that giving people the false picture that everything is peachy going through this journey is just plain dishonest and fake.  I could paint the picture that we don't struggle and have no problem staying positive, but it's not true.  That takes serious energy and work...and we're human.  You probably don't understand it, and that is completely fine.  We have good days and then we have days where the human emotions just get to us.  All I can say is...thank goodness we have a Savior to lean on!

To say that we need prayer can be vague.  So, I'm going to be more specific.
Prayer requests:
Please pray...
1.  for continued progress in the growth of Kate's hip socket
2.  for continued progress with her torticollis and muscle development
3.  that the sad, frustrated, weary emotions we feel on weak days stay few and far between
4.  that the Lord would provide us with lots of energy...physical and mental...to keep her as happy as possible in the midst of her challenges

Thank you from the bottom of our hearts for your prayers and your support.  Thank you for the fact that so many of you care even though you may not understand.

Friday, September 27, 2013

Week 4 Complete

Kate's 3rd and 4th weeks in her harness
Kate's third and fourth weeks in her harness were big ones!  She has been able to bathe (very carefully) without her harness in her whale tub!  The harness seriously doesn't bother Kate at all.  She's 100% used to it.  Her reflux is much, much more her issue.  Just today she had her meds switched and started a priobiotic in hopes of giving her some relief.  It's had her hurting and so fussy!
Kate's first real bath since getting her harness!

Kate also had several firsts over the last couple weeks!  She met another baby up close and personal for the first time (as well as the baby's parents who happen to be some of our best friends), had her first Disney experience, and visited the beach for the first time!

Kate (3 mos.) and Kinney (7 mos.)

Kate goes to Disney!

Kate at the beach

We had planned a beach trip before Kate was put into her harness, and I knew it'd be an emotional struggle for us to take her to the beach for the first time without being able to put her in the sand and ocean.  And to be completely honest, it did make me sad, but more than sad...it was just difficult.  I don't recommend taking a baby to the beach that can't get wet!  We had to hold her--keeping her dry--under the umbrella the whole time.  But still, I felt very strongly that I wanted us to still go on our trip as planned even though it was hard.  I didn't want her harness to stop life from happening and stop memories from being made...and it didn't!  We had a blast with our friends and I'll always remember her first beach trip...and this cute little inflatable duck she borrowed from her baby friend, Kinney! :)

Kate's 4 week doctor's visit
Luckily, we didn't have to get another ultrasound this week.  We were able to go straight to see Dr. Woo once we got to Orlando yesterday.  Long story short, Kate's hip is still doing well...still in socket.  Since he was happy with it, it was time to move forward.  He wrote us a prescription for a new brace that's supposed to be "less trouble" and give her more freedom with her leg.  But unfortunately, the medical supply business didn't have it in stock.  So, he wrote another prescription for a brace that was only supposed to go on the bottom part of her body.  The catch is though...the fall back brace wouldn't allow her to move her hips at all.  When I realized the new brace totally immobilized her legs, I was very upset.  Kate just loves, loves to move and kick her legs.  The thought of her having even less freedom with them just so it would be "less trouble" for us was heartbreaking to me.  So, I talked him into letting us just cut off the back straps of her harness as originally planned.  Kate's loving having those back straps off!  She's back to rolling on her sides, and diaper changes are SO easy now.

Happy girl waiting to see Dr. Woo!

Mama-daughter accidental matching at the doctor's office!

Looking forward
We don't have to see Dr. Woo again for a whole month...yay!  We go back October 29th for an x-ray and doctor's visit.  If Dr. Woo is happy with the x-ray, there's a possibility Kate will only have to sleep in a new brace...the one that only goes on the bottom half of her body.  Praise the Lord!  Please be in prayer that her x-ray shows good news.  I've already bought her a couple of outfits that include pants in hopes she'll be able to wear them.  It's funny; I used to hate pants because they made diaper changes a pain, but now I want her to wear them just because she can! :)

**On a completely unrelated side note, Kate was diagnosed with torticollis today.  She starts physical therapy to stretch her neck muscles soon.  Please include this in your prayers as well as it's just "one more thing" for sweet girl to have to deal with.

Thank you all so much for your prayers and support!  :)

Friday, September 13, 2013

Week 2 Complete

Kate's week 2 in the harness
Kate's second week in the harness was way less emotional than her first...for everyone!  She was finished with her growth spurt (the REAL cause of her week-long bad mood) and was back to smiling.  We became more accustomed to the harness.  It's slowly becoming the "new normal" other experienced harness parents told us it would.  Kate is now moving her right AND left legs in the harness...kicking as much as it'll let her.  Diaper changes are quicker.  I don't even remember what it's like for Kate to wear anything other than a dress.  Her harness has softened up so snuggling is a lot easier.  All things considered, it's going well.  The sponge baths still suck...but more on that later. :)  She turned 3 months old during the past week!

First trip to Georgia
Although we consider Georgia home, Kate was born in Florida!  Brian and I were excited to take her across the state line for the first time to see one set of grandparents' (my parents') new house in Broxton, (pretty much Douglas) Georgia.  It was the first time my side of the family had seen her since she got her harness, so they had to go through the awkward "how to hold her" phase.  It really didn't last long at all though!  These are just a few snap shots of the trip.  I'm realizing Brian is behind the camera way too much.  We need more daddy-daughter shots!

Kate's ultrasound and doctor's visit
Kate had to get another ultrasound before her doctor's appointment this week.  She still didn't love the ultrasound, but it wasn't quite the scream fest that it was last week.  We were a little bummed the ultrasound didn't require removing the harness, so we didn't get to see her stretch.  However, the ultrasound tech was phenomenal.  Brian and I really can't say enough about the pediatric radiology department at Florida Hospital.  They do a great job of putting the parents at ease, are very patient and understanding of feedings/diaper changes/spitting up/other baby needs, and are so tender and caring with the children.  She told us that she wasn't able to get Kate's hip to move in the socket even as much as last week's tech did.  That's good news!  That means the ligaments are on their way to tightening.

When she actually saw Dr. Woo, he seemed happy with her progress.  He told us that she shouldn't need a cast and "most likely" won't need surgery.  I'd much rather him say Kate "definitely" won't need surgery, but right now I'll take what I can get!  He now only needs to see us every two weeks...so we go back Thursday, September 26th, which is perfect since we have friends coming into town next week.  He said that if we "must," we can take her legs out of her brace to wipe them down if we "police" that left leg/hip.  Brian talked him into telling us that we could give her the "occasional" real bath as long as we keep her left hip flexed.  Um...that's easier said that done!  Ha.  However, we're thinking of trying tonight, so maybe I'll have a picture next time!  We discussed baby "toys" and if she had any limitations.  She doesn't...as long as her legs stay flexed and separated!  Her Gigi bought her an exersaucer at a consignment sale this past weekend, so we're excited to let her play in that.  The bumbo isn't perfect...I wish the leg holes were a little wider!  However, I think it's ok for short periods of time.  Here she is sitting in it today for the first time with her harness on!

Looking forward
When we see Dr. Woo again in 2 weeks, we're hoping to have the back leg straps cut off the harness.  That's what he wants to do if she's progressed!  That will give her a little more range of motion with her legs.  She was rolling on her sides before she got her harness on, so I'm hoping her "rolling" efforts will continue if he'll cut those back straps off.  Then after her 6th week, he said we may get a brace that's just the bottom half of her body!  We'll see.  Don't want to get ahead of ourselves. :)  Our hopes are that she'll be done with this sucker by Christmas.  Her doctor believes it's possible!  

Your continued prayers are always appreciated.  We give all the praise for her progress to God.  He is certainly answering our prayers.  Our baby girl is happy and healthy.  This is nothing but a little bump in the road!

Thursday, September 5, 2013

Week 1 Complete

Week 1 under our belt
Kate's first week in the Pavlik Harness was officially complete yesterday!  Brian, Kate, and I had to leave Ocala a little before 11 to get to Florida Hospital in Orlando in time for her to nurse, check into the outpatient area of the hospital, complete a long ultrasound, and see her doctor!  Needless to say, we got back to around Ocala around 6:00 p.m. yesterday.  Her appointments make for long days, but we are blessed that Brian is self-employed and that I'm a stay-at-home mom.  Can you imagine if we both had your typical "nine to five" jobs during all of this?!  Yikes.  I'm sure we'd make it work, but it wouldn't be easy!

Kate's ultrasound
Kate's ultrasound had to be done with and without her harness on.  When the ultrasound tech took her first leg out of the harness, it was so cute!  At first Kate didn't realize she didn't have to hold it in the same position anymore.  However, once she figured out she could stretch, it was all she wanted to do!  This mama couldn't help but smile and laugh at how much she was enjoying that. :)
In case you're wondering, "Toy Story" was on in the ultrasound room.  The sound and bright colors held her attention.  I was actually pretty thankful for that because it kept her fairly happy during the ultrasound.  She didn't move her left leg (the affected hip) as much as she did the right when it was out of the harness, and she did get extremely upset when they did the ultrasound on the left hip.  The doctor assures us this condition is painless, so we're not sure why that is.  But the tech gave her a vanilla scented/flavored pacifier (who knew there was such a thing?!) to suck on with a little sugar water, and we got through it.  I wanted to keep that pacifier because she seemed to like it so much until I realized it broke out her face where it touched with little baby acne bumps.  Weird.  I was thinking that might be nice to have at home.... ;)

Going over the results
When it was finally time to see Dr. Wu, we got really good news!  First of all, the ultrasound confirmed that Kate's right hip is completely normal.  He was pretty sure that it was, but he wanted to double check.  Second of all, Kate's hip is no longer naturally dislocated!  Her hip is in socket.  The harness seems to be working...praise the Lord!

Dr. Wu says now it's a matter of all her ligaments "tightening up."  The only way for that to happen (besides surgery) is just time.  The length of time the harness is usually worn is 6 weeks plus a week for every week of life.  So, Kate was 11 weeks old when she got it on...which means a total of 17 weeks.  Kate has 16 more weeks in her harness.  Let the countdown begin!  I figured out that 16 weeks from yesterday is Christmas Day.  Man, that would be a good Christmas present for Kate to be done with her harness!

Looking forward
We go back for another ultrasound and doctor's visit next Thursday, September 12.  Dr. Wu didn't make any promises, but he did say that if he saw the same progress by next week, we MAY be able to discuss taking her out of her harness for a bath every once in a while.  This would make us so happy and would really soften the blow of this harness!

Brian and I give all the glory to God for the good news we received at the doctor yesterday.  And we just want to thank you all for your continued prayers and support.  It feels good to know we're not on this journey alone, and we are very optimistic her ligaments will tighten with time and that Kate can avoid surgery!

Tuesday, September 3, 2013

Kate's DDH Diagnosis

This is our sweet daughter, Kate.
And those are the last pictures take of her before she was diagnosed with Developmental Dysplasia of the Hip (DDH).

A "hip click" is found
Exactly a week ago, our little family of three made the hour-long trip to Orlando.  We planned on taking Kate to Downtown Disney after a doctor's appointment...which we thought would go really well.

You see, at Kate's 2-month-old check-up with her pediatrician, all was seeming fine.  We were told the heart murmur she was born with was completely gone...which was fantastic!  Although people live with heart murmurs all the time, we'd still prefer our little girl's heart be normal and healthy.  Then came words that would be the start of our journey...even though we didn't know it yet.

"Oh.  She has a hip click," said her pediatrician.  A what?  She then proceeded to tell us it was more like a hip "clunk," which basically meant her joint made noise, meaning we needed to find out why.  She sent us on our merry way that day with an appointment for an x-ray and ultrasound on her hip the next day.

Long story short, we got her x-ray and ultrasound.  Kate's pediatrician got the reports back from the radiologist, and she called us to tell us while it was hard to tell if they were normal or it it was Kate's positioning, she wanted us to see a pediatric orthopedist to get his "blessing," before we decided if everything was normal.  She told us his office would call us to make an appointment, but that there was no rush because everything appeared to be ok.

Getting checked out
The first thing Kate's doctor, Dr. Wu, asked us as he walked in the door was, "Do you know why you're here?"  I replied, "Her doctor found a 'hip click' at her 2-month-old check-up."  He then proceeded to dig a little bit to see how much we knew about what that was.  I was kind of embarrassed about how little I knew about it.  I mean, everything "looked pretty good" on her tests, so why would I go "Google" to freak myself out, right?

Then he pulled out Kate's x-rays...the same ones that the radiologist said appeared normal.  These are those same x-rays.

When he set them down, I immediately asked, "There's something wrong, isn't there?  They're not the same."  Dr. Wu then explained to us that Kate's left hip (seen on the right) is naturally dislocated.  And as the top x-ray shows, her body had already started to create a new socket.  He explained to us that Kate had DDH.  He explained that it is most common in first-born females (like Kate), and that it's pretty much unknown what causes the condition.  I later learned that the first-born part is because babies are tighter in-utero than succedent babies, and the female part because we have looser ligaments...which put together with pregnant mama's hormone relaxin can be very loose sometimes.  Dr. Wu explained that untreated, Kate would walk with a limp and have a lot of pain later in life.

Treatment for DDH
Dr. Wu wasted no time telling us that Kate would need to wear a "brace," known as the Pavlik Harness.  This is the least invasive form of treatment for hip dysplasia.  He explained that while he is hopeful the brace will work for her, a cast or surgery may be needed if it doesn't.

According to the doctor, Kate will need to wear her harness 24/7 for about 3.5-4 months, if it works.  She is not allowed to take it off unless it's an emergency.  This meant no bathing, swimming, etc.  Images of her splashing (a new love) in her bathtub and an upcoming beach trip flooded my mind, and I lost it.

After that, the appointment is all a big blur.  For reasons I couldn't fully understand, I was absolutely devastated.  I cried as my baby wailed at the top of her lungs as he adjusted her harness on her little body.  He assured me that the condition is painless and that she wasn't crying out of pain, but at the time, that did little to make me feel better.

So, we scheduled the first of our weekly appointments and left.  We headed home, not to Downtown Disney World, with our sweet 11-week-old baby girl in a corrective brace.

Coping and Adjusting
Over the next several days, to say I was a wreck would be pretty accurate.  And the worst part was the fact that I couldn't understand why.  I couldn't put into words what I was feeling; all I knew was that I felt extremely sad.  I felt sad for my baby girl and sad for us as parents.  I was sad because Kate was just learning to splash the water in the baths that she loved.  I was said because -I- would miss watching her enjoy her baths.  I was sad because I couldn't hold my baby the same way I used to.  I was sad because breastfeeding just got nearly impossible...and we all know it's not easy to begin with.  I was sad because I didn't know how to dress her in ways that wouldn't interfere with her harness.  I was sad that she wouldn't be able to kick her legs the same way.  I was sad that I wouldn't be able to play with my baby in the same way.  I was sad because I couldn't bicycle her little legs to help her pass painful gas bubbles.  I was sad because she couldn't stretch out her little body anymore, which is seriously one of her favorite things to do.  I was sad because she seemed sad.  I was sad because I felt that in some way my body or my genes failed her.  I was sad because she can't swim at the beach in a few weeks...or even get in the water.  I was sad that her brace will prevent or slow the usual milestones a baby reaches between 2 and 6 months old.  I was sad because I realized all the cute clothes she'll never wear.  And seriously...that's JUST to name a few.

You see, I knew (and know) some of those reasons for sadness were pretty lame.  I knew some of them were no big deal.  I knew that they are all sacrifices worth making to help Kate develop properly.  And I knew parents of children with much, much more serious problems and actual illnesses would think I was ridiculous.  They'd probably say things like, "you're lucky that's the only condition your child has."  And what made it even worse is that I knew they'd be right.  But I was still sad, despite logic.

It wasn't until reading another blogger discuss her feelings about her child's hip dysplasia diagnosis that I began to come to terms and understand my feelings.  The fact of the matter is, I -know- this is not a life or death situation, but it HAS changed everything we do with Kate.  Diapering, dressing, bathing (or lack there of), feeding...it's all very difficult.  And the things that aren't difficult...like holding her, playing with her, etc., are still very different.  And it's overwhelming.  Going to the doctor every week awaiting news of her progress (or not) is hard.  Waiting to see if she'll need a cast or surgery...is hard.  And as the other blogger pointed out, I struggled with feelings of guilt for feeling this way because I do know it could be a lot worse.  Because if there's one thing I don't want anyone to misunderstand, it's that we are so very, very grateful for Kate's health.  As she explained, it's just a "mourning" process.  And she's absolutely right.  I had to mourn the loss of normalcy, simpleness, some of our favorite things, and the way of life we had become accustomed to with our baby girl.  I know that Kate will bathe again (a celebration that will be!).  I know she'll swim.  I know I'll be able to cuddle her harness-free one day.  But I'd be lying if I didn't say I'll miss those things terribly over the next 4 months or so!

However, after MANY prayers this week asking God to please show me how to "let go and let Him," I'm feeling stronger every day.  Brian and I have begun to thank God in advance for the healing we believe he'll bring to Kate.  We can still use your continued prayers for our strength and hers.  We thank the Lord that this is harder on us than it is on Kate!  Babies are resilient, and she won't even remember this short time in her life.

I'll leave you with a few pictures of this first week in her harness.  We have our first follow-up ultrasound and doctor's visit tomorrow.  I'll let you guys know how it goes!