First Steps, Take 2

Well, she did it!!! Last night at church Caroline was walking all over the gym holding on to our fingers. I decided to bait her by holding her paci out in front of her--and it worked. She took 2 tiny, wobbly little steps all by herself! They were the best little steps I've ever seen. "The LORD has done great things for us, and we are filled with joy." -Ps. 126:3

More Good News

Caroline is brace free!!! About 10 days ago Dr. Martus called us & said she could stop wearing it during the day. We were surprised but happy, and have really enjoyed not having to mess with that thing while she's awake. Today she had another x-ray. The hip looks great, and he said we can stop using the brace altogether! Hooray! It is so hard to believe she is contraption-free, for the time being anyway. Maybe now she'll start sleeping through the night again... He also watched her "walk" (holding on to my hands) and said it looked good. Her left hip is still very tight & stiff--he called it "contracture"--but said it's to be expected & will loosen up over time. We're hoping now her mobility will continue to increase so she can start preschool on Aug. 13 (yay Miss Julie!) Please lift up a prayer of praise on our behalf for this wonderful milestone.

Movin' On Up

Thought I'd give a progress report...Caroline is doing great, improving every day. The orthotist modified her brace, although that proved to be no easy task. The spreader bar between her legs went from about 12 inches to about 4! When our doctor saw it, he had it narrowed even more, down to about 3 inches. So she is in a much more normal position now and can even fit in her carseat without padding, as well as a restaurant highchair and (fingers crossed) a grocery cart! At the brace check last week, Dr. Martus also said we can start to gradually increase her time out of the brace during the day (whoopee!). And, when we go back on Aug. 5, if all looks well she will be down to wearing it only for nighttime & naps!!!! She can now crawl normally, instead of the army crawl, and when not wearing the brace she has started to pull herself up to stand. Today she even climbed about halfway up the stairs! It was a wonderful sight, I was crying and we were all cheering for her. It's amazing what a big deal the little things can be. While this is all great news, Dr. Martus has been clear that she is nowhere near out of the woods as far as further surgery down the road. Your prayers are still coveted for this. Till next time...

Checkup

Long time no post, eh? Well, Caroline had a checkup today, I can't believe it's been almost a month since the cast came off! Thankfully, her x-ray looked great & the dr. is very pleased (praise God!). He was surprised at the width of her brace, though, and arranged for her to get a narrower one. Apparently it's fine to be wide (it's not going to hurt the hip), but it is probably the reason she hasn't started pulling up/cruising. He expects her to be able to start doing that fairly quickly in the new one. We will get it Thursday & let everyone know how it goes. Keep those prayers coming!

Independence Day

First of all, I have to say that as a former English teacher this formatting problem is completely maddening! Apparently it is a Blogger-wide issue, so please excuse my inability to properly space my paragraphs. Grrrrrrr... That said, the real purpose of this post is just to put up some pictures of July 4th, so here they are:

Splash splash swim swim

The new Ilfeld brace Swimming!!! She had an absolute ball.

She's doing very well, getting to where she can move around quite well in the brace. Still loving bathtime. Her skin is clearing up nicely, just one small area left that is still healing. The stiffness has subsided drastically--her right leg is completely normal & the left is much better. So, we are just plugging away till our next appt on July 15, where we're hoping she'll be allowed more time out of the brace during the day.

We are still praying fervently that a) she will not need further surgery and b) that she will be able to start preschool in August as planned.

Love to all,

Melissa

A Picture's Worth 1000 Words

The cast removal Houston, we have leggies! Check out the awesome tan line. Daddy holding her for the first time. Happy girl on the way home from lunch. It was so odd to see her legs! Bath time, yay! Today, at the table coloring, in the brace. More to come! Love to all, Melissa

Oh Happy Day, part 3

On the way home from the orthotist, we stopped for lunch. She sat in a regular restaurant high chair, and loved it. Afterwards in the car, she discovered her toes all over again! It was just precious. Then she realized she could bend her leg & reach them! She was delighted to have those toes to play with again. I actually cried. Again. Back at home, she enjoyed her long-awaited bath. She was a bit unstable sitting up, but soon regained her confidence & splashed like a pro. Every time we got ready to end the bath, she'd say "no, no" so we let her stay in for quite a while! Putting her diaper back on, getting her dressed & re-donning the brace were all challenging. She is quite stiff & sore, and doesn't much cotton to having her legs moved about. Although I was thrilled to put shorts on her, we may have to hold off on that for a while! By this time, we were all exhausted & we put her down for a nap. The big girls were so excited to see Caroline they could hardly stand it. In fact, they kept asking if they could wake her up from her nap! We are slowly but surely adjusting to this newest change. Caroline is mostly quite happy and is already pulling herself along on the floor. She loves being able to sit up straight and join us at the table. We are hopeful that the soreness will fade over the next few days. In the meantime, we are just enjoying having our squishy baby back. It is amazing how much you appreciate being able to properly cuddle your baby after being denied it so long. Pictures are next, I promise!

Oh Happy Day, part 2

After the x-ray, Dr. Martus checked her skin & incision sites. The one on her hip has been covered by the spica, so today was the first time we saw it. It was a good thing I didn't see it before now. It's a "good" scar, very nicely done, but it's about 6 inches long! Looks like they almost cut her leg right off. Next he talked about the brace & said basically she needs to wear it full time for the next 4 weeks. She can have it off for baths, and he said some swimming is ok (hooray!) but "we want her in the brace as much as possible." She is also permitted to do anything she's comfortable with while in the brace, including crawling or walking. We go back in a month for another x-ray. Off we go to the orthotist, where we wait for about 90 minutes because lo & behold, they don't have the right brace! In the car on the way over, I was floored at the sight of her in her carseat, sitting normally, legs and all. She began patting them and saying "legs, legs." While we wait, we sit Caroline at a kids table & chairs to color. I was amazed! She sat right up like a pro. We stayed close to keep her from toppling but overall, she did great & was so proud of herself. After talking to Dr. Martus, the orthotist says he'll order the right brace (an Ilfeld), which will be in next week. In the meantime they'll give us a similar one called a Rhino cruiser. I am more familiar with this one, I've met lots of people online who've used it. In fact he was quite impressed I knew the name of it! So he fits the brace, which she hates. I will post pics of it later, but basically it's foam & plastic cuffs around her thighs which fasten with velcro, and a waist strap. We head to the car and spend about 20 minutes trying to fit her in her carseat. We have had it padded so she'd fit in the spica, so we adjust the padding, change the straps, every trick in the book, but no good. She won't fit. Although the brace is much smaller than the cast, her legs are positioned wider. We go back inside to ask for help, and are told it's ok to remove the brace while in the car for now. Continued, with pictures, tomorrow!

Oh Happy Day

Our happy day is finally here. I am at a loss for words (a first for me!) to somehow convey all of the overwhelming feelings we are experiencing. So I guess I'll save that for later, and for now stick to the facts. We arrived at the hospital at about 8:30 a.m. and were taken back to the cast room shortly. They gave Caroline headphones in a (mostly futile) attempt to block the noise. Fortunately, or not as the case may be, we were familiar with the cast room & the saw due to a repair trip we made on Tuesday. Yes, 3 days ago we had to have the cast trimmed due to a pressure sore near the edge of the leg. No, our ultra-conservative surgeon would not allow the whole cast to come off 3 days early. :) Caroline was fine with the saw for about 45 seconds, then she screamed for about 3-4 minutes until they finished with the saw. I think curiosity took over and she watched the tech use giant scissors and pliers to cut & pry off the cast. They basically cut it down the sides and took off the top, then told me to pick her up out of the bottom half. Voila! The whole thing took about 5 minutes. Ironically it was very hard to pick her up because a) we are used to the cast now and b) we were terrified of hurting her. She was very limp & floppy and seemed quite light! Her poor skin took a beating though, several very raw areas and of course your typical stinky, dry, dead skin. Lovely isn't it!? She was not thrilled with having an x-ray but fortunately the results were "great," according to our surgeon, which for him is roughly equitable to an "amazing" or "outstanding" to the rest of the world. Thank you God. I'll split this into two posts due to length. To be continued...

Contentment

Back at the beginning of this journey, I posted about how I was in a Ladies' Bible Study on the topic of contentment. I went on to list the numerous challenges - many of them bizarre in nature - that members of my small group had faced during the study. Now as we near the end of at least this chapter, I cannot help but take another look at this concept of contentment. Throughout this time in the spica, one word has been repeated more often than any other: content. Countless people have remarked about how "content" Caroline seemed in the cast. I finally noticed the other day that the word being used to describe my sweet baby was the same one I had studied & pondered & prayed about at length. It is humbling, to say the least, to realize that your toddler is better equipped to teach you than you are to teach her. Indeed, we have marvelled along with our friends at the peace with which Caroline accepted the cast, the joy she has sustained throughout, the perseverance she has demonstrated. Her cheerful good nature has not waned, as mine always does when faced with the slightest disappointment. I have wrestled with the concept of contentment, just not able to quite understand what it means. My questions about it are many; I'm probably just looking for a loophole. But none of my intellectual pursuits have come close to enlightening me the way my daughter has. God knew we needed a model; that's why he sent his son. Caroline has personified contentment for me in a way I will (hopefully) never forget. I have learned the difference between happiness and contentment. I can confidently say she has been content, although she's not always been happy with each circumstance. Most glaring, though, is the inclusion of trust in the mix. It's an ingredient I would not automatically equate with contentment, even though it seems obvious now. I believe a huge part of Caroline's ability to do so well has been the fact that she trusts us. She has reveled in our affection & love for her, always of course, but especially since the surgery. She knows we love her & will help her when she can't help herself; we'll comfort & reassure her when she's sad. She believes us when we say, "it's gonna be ok" and "it won't be like this forever." She knows she's not alone. And he said: "I tell you the truth, unless you change and become like little children, you will never enter the kingdom of heaven. - Matthew 18:2-4

The Waiting Place

"...for people just waiting.

Waiting for a train to go or a bus to come,

or a plane to go or the mail to come,

or the rain to go or the phone to ring,

or the snow to snow or waiting around for a Yes or a No

or waiting for their hair to grow.

Everyone is just waiting.

Waiting for the fish to bite or waiting for wind to fly a kite

or waiting around for Friday night or waiting, perhaps, for their Uncle Jake

or a pot to boil, or a Better Break

or a string of pearls, or a pair of pants

or a wig with curls, or Another Chance.

Everyone is just waiting."

- Dr. Seuss, "Oh! The Places You'll Go"

This is a frustrating place to be.

I have lived long enough to understand that life is too short to wish away any days, and yet here we are. As much as we have tried valiantly to carry on normally as much as possible, sometimes we just can't. And during those times, this passage echoes in my ears. It feels strange to cheer the passing of each day, to joyfully put another "x" on the calendar, because I realize that at the end of these 12 weeks, 12 weeks of our lives will be gone. Not just the cast, but the rest too--my baby will never again be 18, 19, 20 months old. It's such a dichotomy; we want June 20th to come so quickly, and yet that seems wrong in many ways.

Reflections aside, my apologies for the long delay between posts. It's just that, again, there hasn't been much to report. Caroline is doing wonderfully, she zips right along on the floor if you put her there (or anyplace on her tummy). Baths and diaper changes, both of which involve tummy time, are becoming increasingly difficult as she tries to slither away!

You can tell, though, that we are all nearing the end of our tolerance with the cast. Caroline is getting somewhat more frustrated, though she's still quite content (more on that later). I am growing weary of the pseudo-baths & macgyver-type diaper changes & cast repairs. This 2nd cast is more difficult than the first; we are having a hard time with the moleskin padding & waterproof tape that's used around the edges. Last time we barely had to do any replacements or repairs, this time I'm having to fix something at every diaper change. Not to mention, I'm sick of carrying her everywhere--she's heavy!!! And mostly, I'm anxious to hold her close & give her a real good snuggle. The big sisters are out of school & chomping at the bit to go, go, go but it's sweltering and Caroline is just too hot. They've asked every day if we can go to the pool. Bless them, they are being so patient, but they're just little kids!

All of this to say, we are thankful that we have just 2 weeks to go! We are officially on the countdown. And, ambivalence or no, it's not a moment too soon.

Oversight

I re-read my last post today and was appalled at the MAJOR oversight. In all my ravings about the new cast, I forgot to give credit & thanks where it is most definitely due--to our gracious & faithful Abba Father. I am so amazed at his constant provision & presence, not only when the news is good but also when it is not. But today, let us give thanks for the good news he has allowed to come into our lives. Melissa

Cast Change!

Today was the big day--cast change! It went beautifully and we were home by 10:30 a.m. Caroline and I both took nice long naps :) She was fussy after she woke from the anesthetic, but is back to normal now.

Our surgeon said her x-ray/arthrogram looked really good, he was pleased with how her hip was seated in the socket, and that it felt very stable upon manipulation. That is really great news; it is not always the case with hip dysplasia kids.

Just to mark the change, and for something different, we went with a bright purple cast this time. It is almost exactly the same as the first one, except the bar is curved. This is due to the fact that I teased our dr. about the last bar (it was very close to the diaper area), so he made a special effort to make changing easier for us!!! Bless him, it was so sweet, but just goes to show surgeons lose their sense of humor somewhere along the way... hello, I was kidding!

However it is a lovely cast, as spica casts go, and so clean & shiny I am tempted to lick it!!! :)

He did say her skin looked great--one of the best he's ever seen! My reaction to that was a mixture of pride and severe shock. It was a relief though, I've heard horror stories about the terrible sores found under the cast.

So, we go back in six weeks and 1 day to have the spica removed. She will be awake that time, and will be fitted for her brace that day. She'll be in the brace full time for 4-6 weeks, although we'll be able to remove it for baths (hooray!!) and hopefully some swimming. After that, we'll see, it just depends on her x-rays. Most kids are weaned very gradually from the brace, so that's what we're expecting.

For now, though, we're just enjoying our nice clean girl and celebrating the halfway mark.

Thank you all for your thoughts, prayers and words of encouragement. They sustain us.

Love,

Melissa

ps--be sure to see the previous post, I just added lots of pics.

In recovery

Walking around in recovery

Back on the beanbag again!

Pictures

Here are the girls in the beautiful dresses my friend Cindy made. Note the customized spica-friendly bloomers on Caroline!

The other day, in a fit of nostalgia, I got out the shaving cream & let Caroline go crazy. I'm not the only one who remembers doing this at school, am I?

Then we "cleaned up" by having a tea (water) party. (I covered her in a waterproof floor mat)

For her last bath in the pink cast, I let her play in the sink (yes I cleaned it first!). I've been scared to do this for fear of getting soaked, but I figured the cast is being changed in a couple days anyway, so why not give it a try? She had a ball splashing around and my fears were unfounded, so we'll definitely be doing this more often!

Happy Mother's Day!

Ok, not sure if anyone is still reading this, but if you are please accept my apologies for the long silence... There has not been much to report as of late. We are doing fine and Caroline is plugging along. She had an ear infection last week--that was much more traumatic to her than surgery! She is finally getting more comfortable with being on her tummy, she's scooting around more. Other than that, it's just status quo. Tomorrow, though, marks a major milestone: CAST CHANGE! Hooray! Now, I know you are probably thinking, big deal, what's so great about that? But let me tell you, just stop for a minute and think about what is involved in having a toddler in a body cast for 6 weeks, including diapers, no bathing, and scooting on the floor. Now you might be able to relate a little bit! Of course it's also a big deal because it marks the halfway point for the Spica cast. Six weeks down, six to go!!!! She will go under general anesthesia tomorrow because applying a body cast requires her to be completely still. They will also give her a good bath (hallelujah!), do another arthrogram (dye x-ray) and manipulate her hip to evaluate the progress. All this to say, it is very minor compared to the first surgery, but it's still considered surgery and has risks. Please keep her in your prayers. I have lots of pictures to post, I'll try to do that tomorrow along with an update. Melissa

Oops

Just a quick note to say I'm obviously having trouble with formatting! For some reason, I can't figure out why some parts are double spaced & others aren't... my apologies....

Coasting

The title pretty much says it all--we're just kind of coasting right now, riding on the energy we have received from so many people in the form of prayers, encouragement, help, gifts, food, etc. But, I fear we are losing altitude! Not that the help has tapered off--it hasn't--but I guess you could say we are settling in for the long haul. The adrenaline has worn off & we're all pretty tired.

Things are going absolutely as well as we could hope, but it's still rough. Caroline does best when we are out & about rather than at home, but there is only so much she can do. When we are home, I don't get much done, because she is so dependent on me. And to add insult to injury, the lovely allergy season has hit Nashville full force! Blech.

Ok, enough whining. I do have some good news to report. The swing we ordered came in this week, so Caroline is able to resume her favorite pasttime. Hooray! It was so pitiful before, every time her sisters were outside she'd point at her old swing & say "Swing? Swing?" Here she is in the new one:

I have been meaning to write for a while about the amazing level of love & generosity we have been receiving. I honestly cannot express how grateful we are. This would be completely impossible without all the help we've gotten and are continuing to get. Just to name a few: we are getting dinner 3 times/week, rides to school & back for the big girls, visits, babysitting, 2 months worth of lunch fixins for the girls, a brand new "tricked out" wagon, coffee gift certificates, grocery store runs, packs of diapers, flowers, balloons, gift cards, notes & cards & gifts galore! Ellery & Lauren have gotten care packages of their own so they don't feel left out.

One sweet friend who is a talented seamstress whipped up some custom bloomers to fit over the cast, AND made 3 matching dresses for the girls! (I will post a pic later.) People have brought bean bags, yoga mats, hiking backpacks and other equipment to try to help find ways to make Caroline comfortable. The other day, a group of Keely's co-workers at Regions brought this to him:

This is a full-size toy box, y'all! Stuffed to the gills with goodies--and I took this picture after the girls had already raided it some. The lid wouldn't even close.

Another group of Regions folks donated a TON of money to pay for housecleaning for us!!!!!! Seriously, how do you say thank you for this kind of stuff?

There is so much more, I just can't list it all. It is so awesome how God provides!

So, if you see us, and we seem to being doing well... now you know why.

Checkup

Happy Friday everyone. We had our first follow up appt. with Dr. Martus today. Her x-ray looked great & he was very pleased. The nurse also said Caroline looked great & smelled great so I must be doing a good job!

The one piece of semi-bad news is that he pushed off her cast change date. His office had scheduled it for May 5, which was only 5 weeks post-op instead of the 6 we expected. When he realized that today, he said he'd have them change the date b/c he'd rather wait the full 6 weeks. Bummer. I had kind of been hoping we'd end up with 2 5-week casts, but it was not to be. So, now we await a new surgery date (the cast change is considered surgery b/c she has to go under general anesthetic).

BUT thankfully all looks good and in 9 weeks, 3 days we should be cast-free!

In the meantime, Caroline has made her big debut at church where she enjoyed bible class again. Here she is last Sunday:

Shout out!

Just a quick note to give a shout out to Grandma Darlene! (what do I think I am, 19? first a blog, then facebook, now this...) Seriously though, for those of you who don't know, we have some very dear friends in California, Dave & Darlene Mackey, who have adopted our girls as grandkids. They were our marriage mentors and we developed an amazing relationship that has lasted lots of years and lots of miles. Isn't it wonderful how God provides? Our kids only have 1 biological grandparent living (my mom) and all of their aunts, uncles & cousins live very far away. Although the Mackeys live in California, they have stayed very involved with us & visit often. When we first found out about Caroline's hip, I was overwhelmed & scared. We found out literally the day before my mom arrived for a pre-arranged visit, so I knew she wouldn't be able to come back to help so soon. I called Darlene at work on my way home from the dr's office and she said--absolutely, I'll be there, whatever you need. Just like I knew she would. She came & stayed with us for 12 days (how's that for a friend!). She kept Ellery & Lauren while we were at the hospital & took care of everything. She was the extra pair of hands we needed at first and the companionship we needed even more. So here's to Grandma Darlene--and Grandpa Dave--we love you more than we can say. Caroline and Grandma Darlene

Addendum to Sidebar

I can't believe I forgot this! Add this one to the list below: one member gave birth to her second child just a couple weeks ago. Days after he was born, her husband got shingles. Then last week, her 2 year old fell & broke her arm, which required surgery! Mercy!

Sidebar

Ok, sidebar for a moment... This idea has been buzzing around in my head for a while, but after the info I received this morning, I just had to voice it. Back in January, after having taken a break for various reasons, I started the new Ladies Bible Study at OC. I felt really compelled to do so because of the topic: Cultivating Contentment. Since I had been out for a while, I was put in a new small group, which has been just awesome. It's been a great study, but after a few weeks we began to notice that our ideas of contentment were being challenged. I know of several tough situations that have arisen during these few weeks, even in other small groups--major health problems, etc.--and I'm sure there are many more I'm not aware of. At first, I thought, that's just life, I'm only more aware of it now b/c of the study. However, in my own small group of about 15 women, here's what's happened since January: -Caroline's hip issue -another member's young son had 2 surgeries and potentially faced serious heart problems. -one member lost her only remaining sibling -2 members lost grandmothers and the one that just pushed it right over the edge -one member (6 mos. pregnant) was awakened at 3 a.m. by a car crashing into her house! There are more; many "minor" health issues & job situations, several women are pregnant and several are moving, things that although they are difficult I would not consider unusual. And there are other more sensitive issues that I will not discuss. But the list above, by itself, is pretty crazy. I know that you could look at it & explain it away as bizarre coincidence or even just a run of "bad luck." But as a group of women struggling & striving together to understand contentment, it's much more than that. I wonder if God is honoring our pursuit by allowing these situations to destroy our worldly concept of happiness? Whew, that's a tough one. I wish I had some profound word of wisdom with which to end this post, but I don't. I'm still working on this one. I would be lying if I said I had this contentment thing all figured out, but I know that "He who began a good work in me will finish it through to completion." That's a relief.

Tuesday

Hello all-- Sorry it's been so long since the last post; now that my little munchkin is home I am finding it hard to find time. We are doing well. With the exception of one night, so far she has slept great. We have found a few more ways for her to sit, and Keely actually made an awesome chair for her this weekend. (Pics below) Caroline is completely off pain meds, not even taking Tylenol except at bedtime. We are getting the hang of diaper changes, not as bad as I expected. Baths are ok too, she doesn't love getting her hair washed. She has to lay on the kitchen counter while I wash it in the sink. Seems like a salon treatment to me, but she's not crazy about it. I guess I understand though, yesterday after we were done she pointed to the bathtub & said "splash!" while waving her arms. She misses her regular bath. We ventured out on Saturday & she did fine. We went to toys r us to find some things she would fit in. It was rather discouraging b/c at first we couldn't find much, and to add insult to injury, the place was chock full of sand & water toys. Made me a bit sad... then we went to the park yesterday and I was pretty rueful that all the other toddlers were running around. But the truth is, she didn't care! She had a ball, and hopefully before long she'll be out there with them. She's fallen asleep in her carseat twice, so she must be pretty comfy (though she doesn't look it!). Her appetite is back--she ate a ton of taco meat on Friday, and chowed down on chicken/broccoli/rice casserole yesterday. The big sisters are doing quite well. They are very concerned & helpful with Caroline, with just a few signs of jealousy. They have enjoyed blowing bubbles for her, which delights her. We have been completely overwhelmed by the amount of help we have been given (and are continuing to receive). I want to post more about this later, but for now just let me say that we absolutely could not do this without all of you. For now I'll leave you with some pictures of Caroline at her various "stations." Melissa Camp chair At the kitchen table On the couch, with her laptop & cell phone (hmmm, wonder where she gets that???) In her pink & purple custom made Spica chair!

Home

We are home! Caroline was discharged from the hospital yesterday afternoon and we made it home at about 5:30pm. She slept great, in her crib (hooray!) all night. We are slowly adjusting to life at home. Caroline fits in her stroller, so she sits there a lot right now. Other than that, she is mostly being held. We have tried some other ideas but she is not too keen on them yet. I'm sure she will adjust in a few days. Our big task for the day is the sponge bath & hair washing. It's a new adventure every day! Melissa

Quick update

Good morning! We are still at the hospital for now, but we may be able to go home later today. Caroline is cord-free; they took out her epidural yesterday morning once they knew she was tolerating oral pain meds well. The pulse ox was next, then the Foley catheter last night (which began our diaper changing journey!). Last was the IV, this morning, although the port is still in just in case they need it. She is doing great on the oral meds, doesn't seem to be having any pain. We are getting better at moving her around and becoming comfortable with the cast. Honestly, it's quite a lot like being a first-time parent with a newborn. It's intimidating & scary at first, you're so afraid you'll hurt them, and you just have to figure it out as you go. It reminds me too of how much more complicated it is at first with a newborn--cleaning the cord, sponge bathing, etc. But it gets so much simpler with time. I'm sure it will be that way for us too. Right now we have pain & incisions & swelling to deal with, but soon that will be gone. Just like the cords, and it's already so much easier without those. She does seem to have her days & nights mixed up like a newborn too! She was wide awake from 12:30 last night till about 10 minutes ago, so we are pretty sleep deprived right now. All in all though, it has been a much smoother process than we anticipated. Thanks for all your comments & prayers-- Melissa

Progress

Well, I don't have any pictures to post of Ellery & Lauren's visit. It was way too chaotic to worry about cameras! They were great, though, & Caroline was happy to see them. We managed to get Caroline in a wagon & take her for a ride. She enjoyed watching the model train city and saying "choo choo." We finally met the famous Kathy, who is the resident guru on living with casts of all types. She helped the Browns when Ansley was here. She was very helpful & showed us how to get Caroline comfy on her tummy. Caroline promptly fell sound asleep and it was obvious she had been missing her tummy time. Kathy assured us that the spica may slow her down, but definitely will not stop her. She will figure out how to do everything she did before, including crawl, roll (ok)and even stand up (not ok). Later today we will bring in her carseat and Kathy will adapt it to fit the spica. Apparently she has been to the MacGyver school of equipment modification. Caroline has decided for the time being that she is very mad at me & just wants Daddy all the time. It's actually much harder on Daddy than on me! I'm happy to be the scapegoat for her anger. This morning she ate a little bit and is pretty talkative. They turned off the epidural and started giving her oral pain meds, so we're waiting to see how that goes. The dr. is still happy with her progress, so we will probably be released as soon as her pain is manageable without the epidural. That's all for now. Thanks for all of your sweet comments. Melissa

April Fool's Day

I kept hoping they'd come in yesterday & say April Fool's! She doesn't need surgery after all! No such luck.

We arrived yesterday at 5:30 a.m. and did the necessary paperwork, etc. Caroline played happily, but didn't like the fish tank! One last trick...

They took us back to the holding room around 6:30 or so. Caroline was calm & happy, which was so wonderful. We were next to a little tiny baby who was screaming his head off, because of course he was hungry. I felt so badly for his poor mommy. While in holding, we talked to everybody & their brother--nurses, residents, anesthesia, etc. and of course our surgeon, Dr. Martus. He went over the plan one more time, adding that he thought there was a pretty good chance we'd have to correct her right hip at some point. As for the left hip, they would keep us updated during surgery, but "this is probably not the end of the story" for that hip either. Child Life came in and brought her some toys.

They took her to surgery at 8:30 (she didn't even fuss) and we were off to the waiting room. The nurse called to update us every hour, and the first call was to say that after doing the arthrogram, they were proceeding with an open reduction. An epidural was placed at that time, and we waited for the next call.

Meanwhile, we were surrounded by many wonderful people who brought us coffee, doughnuts, snacks, and most importantly, love. The next update was that she was doing fine, and they were proceeding with both the pelvic osteotomy and femoral shortening. However, after another hour, we were told they may not do the femoral part after all. The next couple calls just said that her vitals were strong and Dr. Martus was still working in the hip joint. Finally, at about 1:30, we were told that they were closing her up and getting ready to apply the cast.

Dr. Martus came out to talk to us around 2pm. He said everything went very well and he was pleased with the results they were able to achieve. He explained the procedures in detail and showed us some x-rays. (We nodded & pretended we saw what he pointed out.) He decided the femoral shortening was not necessary at this time, but he is fairly sure this same pelvic osteotomy will have to be repeated in a couple of years. Apparently that is just due to her growth. If that's the case, they may need to do the femur surgery at that point. On the bright side, he said the arthrogram showed that her right hip is not as dysplastic as it appeared on x-ray, which is promising.

We waited again until about 2:45, when they finally took us to see her in recovery. She was awake and groggy, but calm, unlike many of the sweet babies in the room. It was quite a relief to see that she wasn't distressed. She drank some juice and I got to hold her for a bit.

Anesthesia came in and said she'd done great, and they'd had to give her very little narcotics during surgery. She also didn't require any blood transfusions which was great.

We went to our room a couple of hours later. She slept on & off, and got pretty alert around 7p.m. She was scared & frustrated when she realized she couldn't move around, but settled as soon as we held her. Of course, it takes a few minutes to pick her up, what with an epidural, IV, pulse ox monitor and Foley catheter. Not to mention a spica!

Last night was pretty uneventful. We all got a little bit of sleep. Today has been up & down. Thankfully she hasn't been in any pain. Every couple of hours she gets mad & tries to pull out all her tubes. She really hates the IV and she pulled on it enough that they had to restart it this morning. She ate breakfast well and mostly seems comfortable, except for being itchy because of the epidural. But overall it has gone much better than I had expected, and thankfully when she does get agitated she is easily calmed when we hold her. Here she is with Daddy. Welcome to Spicaville!

Lauren wanted to know what color it was ("pink"). How pink? ("really pink!") Why? (I don't know) Does it have sparkles??? :)

Speaking of the big sisters, they are coming to visit this afternoon. I will try to post some pics later. Thank you all for your thoughts, prayers & words of encouragement!

Melissa

The Big Day

A quick update from the hospital... Caroline's surgery went well. She is resting comfortably tonight. We are very relieved and grateful. Tomorrow I will give details and hopefully post some pictures. Tremendous thanks to all of you who thought of us, prayed for us, sat with us, brought us food, and loved us in many other ways today. Love, Melissa

Tomorrow

I just read my last post--the drama! You'd think it was the end of the world. Really, it's not, I KNOW it's not. But it's still a big deal when you're going through it.

So tomorrow's the day. We have to be at Vandy at 6a.m. and are scheduled for surgery at 8:15. At this point, we really don't know what to hope for, other than a safe surgery with no complications. There is lots of ambiguity and controversy as to how to best treat this, especially at this age. She is kind of on the cusp between 2 phases; before 18 months is typically treated one way, & after 18 months another. Obviously, the less invasive procedure would be preferable--but it is much less likely to work long-term. Our dr. has said his team leans to the conservative side, preferring to do as little as absolutely necessary, in hopes that she won't ever need the further surgery. But, that's unlikely. I tend to think it'd be better to do it all in one shot, as long as the outcome is just as good. So, our prayer is that our sweet Caroline will be in the hands of Jehovah Jireh--the Lord who provides. Even in the midst of these excellent doctors, He alone knows what the best outcome will be.

Ellery & Lauren made their "spica dolls" for Caroline yesterday, and finished coloring them today. It was very sweet, and Caroline seemed impressed :)

Off to bed...updates tomorrow.

Melissa

Soundtracks

I'm not sure why, but recently I've been struck by the way music plays in my head, like an accompaniment to my mood. My own personal life soundtrack. I told you yesterday about the "Day 1" song. Well, today, it's the Darth Vader theme from Star Wars. Lately it's been more like the tavern scene from Star Wars; I've been very anxious as I waited for surgery day. But now it's "surgery-eve" and a tone of fear and doom plays alongside the pit in my stomach. Yet, even as I write this, several other songs are fighting their way into the front of my mind-- -Isaiah 41:10 "Do not fear for I am with you, do not be afraid for I am your God, surely I will strengthen you, surely I will uphold you with my right hand of righteousness;" -Zephaniah 3:17, which is painted beautifully around the ceiling of Caroline's room (thank you Karen Speake!) "The LORD your God is with you, he is mighty to save. He will take great delight in you, he will quiet you with his love, he will rejoice over you with singing." -I AM by Nichole Nordeman (thank you Amy Westerman!) "When I am weak, unable to speak, still I will call You by name. 'Oh Shepherd, Savior, Pasture-maker,hold on to my hand,' and You say 'I am.' " All of you who ask, "What can I do for you?" THIS is what you are doing for us. This is the difference prayer makes. Ok, so maybe I like this blogging thing...

Recap

Those of you who have been getting the email updates, go ahead & skip this post. You've already seen it. If you haven't gotten the email updates, skip it anyway unless you are prepared for a lot of technical blah blah blah... If, however, you are like me & fancy yourself a medical professional disguised as a stay-at-home mom, read on. This is a copy of an email I sent last week: Since Caroline began walking about 6 weeks ago, she walked with a limp favoring her left leg. At her 18 month check-up last week we were referred to a pediatric orthopedic surgeon. At the appointment last week, he told us she has Developmental Dysplasia of the Hip (DDH), a condition in which the hip sockets are not developing correctly. Caroline's DDH is quite severe. Her left hip is completely dislocated & the hip socket appears very shallow. She also appears to have a milder form in her right hip, without dislocation, that they will monitor as she grows. 18 months is considered a late diagnosis, and the later the diagnosis, the more complex the treatment. Our surgeon confirmed that there is a "good chance," around 40%, that she will need further surgery down the line. As for the upcoming procedure, there is much they will not know until they get her in the OR. First, they will do a bilateral arthrogram, which is where they inject dye into both hips in order to see them better via xray. Then they'll attempt a "closed reduction,"--put the hip back in without surgery. Her dr. is doubtful about this being successful, and even if it is, it has to be very stable in the socket. Sometimes they'll need to lengthen one of her tendons to get the hip back in. If the closed reduction is unsuccessful, they will open the hip socket surgically and put the hip back in that way (open reduction). At that time, they may also do a femoral osteotomy (shorten the thigh bone) or pelvic osteotomy (bone graft to reshape the hip socket). They cannot know for sure if those are needed until they get in there. One or both of those procedures are most likely what she'll need later on--they are most successful at age 3 or 4, but will do earlier if clearly indicated. The surgery will probably take about 3-4 hours, obviously less if the closed reduction is successful. No matter what happens in the OR, she will be put in a hip spica cast for about 3 months afterward, with a cast change (under anesthesia) after 6 weeks. The cast Caroline will probably have is a "one and a half" cast with a crossbar, which means all the way down her left leg & halfway down the right. She'll go for frequent checks as it is possible for the hip to re-dislocate even in the cast. Assuming all goes well, she will probably go into a brace after the cast is removed. Once she does start walking again, she will limp for some time--maybe forever. There is also a 20-40% chance of damage to the blood supply to her hip, which can be very serious. As with any surgery, infection & complications are always possible. So we have plenty to pray for! On the bright side, we met with the Child Life Specialist, who answered lots of questions and brought in a teddy bear wearing a spica for Caroline to play with--she was rather intrigued! She also gave us coloring sheets about spicas for the older girls, and cloth dolls along with plaster so they can make their own spica dolls at home. We also checked out some sibling books for Ellery and Lauren. The anesthesia department at Vandy is superb and went over all the details with us. She will probably get an epidural while she's under general anesthesia, in order to make her recovery more comfortable. The length of hospital stay will vary depending upon the procedure they ultimately use, but will probably be a couple of days. We were hoping this would all be behind us come July, but it's looking like it might be a longer road than that. We are very grateful to be in the expert hands at Vanderbilt Children's, and even moreso to be in the hands of the Great Physician. We know he will use all of this for his awesome purposes. Now you're up to date, AND you can start using cool words like "osteotomy" to impress your friends!

Day One

Ok, so here I am, singing to myself "Day 1, day 1, God made light when there was none..." because that is exactly how I feel about this blogging business. I am starting from absolute scratch! (I am not comparing myself to the Creator of the Universe! You know what I mean.) Yes, the irony is thick. I have never really understood the point of blogs (no offense), and yet I find myself being asked repeatedly if we have one for Caroline. So, due to popular demand, I reluctantly drag myself into the twenty-first century. The things we do for our children... My next post will be an overview of Caroline's condition & some brief history of how our world went a bit wonky 18 days ago. I've got to save up some energy for that one. Whoo-hoo! My very first blog post ever! Aren't you proud of me? Too bad my mom doesn't even own a computer. (Don't you dare tell her I said that!) Melissa