Scottish Rite #2

Our 2nd appointment wasn't eventful, in fact, we were in and out in less than an hour!  Unfortunately, his hip hasn't moved and isn't in socket.  So, we're still trying the harness for 23 hours/day.  He's tolerating the harness well but I definitely enjoy giving him his hour break everyday!

We arrived home to a surprise in the mail..a hand made diaper by my good friend KK!  Great diaper, and of course, I had to take a pic!

Thank you Celine!

Imagine that you have a 4 month old who normally screams if he's more than two feet inches away from you, but one day he sleeps in his bouncy chair and you are able to get dishes and laundry (even fresh sheets!) done all in a couple hours...  This is what happened this afternoon and I owe it all to Celine Dion.

Throughout my pregnancy I constantly listened to a playlist populated mostly with Celine Dion, there was a little Colbie Caillat and Jack Johnson thrown in, with a sprinkle of Jason Mraz and Lady Antebellum.  But..definitely, mostly Celine Dion. 

I stopped listening to that playlist while I was in the hospital, then while Clark was in the NICU I never listened to it either.  And, I haven't listened to it since I've been home.  BUT....this afternoon, I put it on.  Mr. Mommy-if-you're-not-holding-me-I'm-going-to-scream must have enjoyed it during his time in utero, because he is out like a light in his bouncy seat.

Evidence:

The past week has been pretty crazy around here.  Starting with last Monday and a lightning storm that killed our refrigerator.  We bought a new one, but it wouldn't be delivered until the following Monday.  Between the whole refrigerator issue, on Saturday my grandfather had a Transient Ischemic Attack aka "mini stroke" at my house.  I called 911 and the ambulance came and took him to the hospital.  We packed up and within an hour, my entire family was in the er with him.  It's Tuesday, he's still in the hospital.  Today he had surgery to try to unblock part of his corotid artery.  As of now, he's resting and the surgery seems to have been a success.

As for Clark, he's just growing and resting up for our next trip to Scottish Rite

Scottish Rite

Yesterday was Clark's 1st appointment at the Texas Scottish Rite Hospital for Children.  We were originally working with an orthopedist at Scott and White, but they no longer have a pediatric specialist on staff so we decided to transfer care to Scottish Rite.  Scottish Rite is world renown for the treatment of pediatric orthopedic problems so I was pretty excited to meet Clark's new doctor, Dr John Birch.

First of all, I have to say that the staff in and around the hospital were amazing.  Having spent so much time in a hospital this year, and feeling like we had received excellent care there, I was shocked at what a pleasant experience we had yesterday.  Everyone we met was kind.  That rarely happens when you go to the doctor.  When we met with Clark's primary nurse, Emily, and Dr Birch, it felt like they had been waiting all day just to see Clark.  When does it EVER feel that way at the doctor?  Needless to say, I was impressed.

Ok, so...let me get to the part about when Clark was evaluated.  At first we met with an orthopedic nurse practitioner who gave him a thorough exam, primarily focusing on his left hip.  Then we went down the hall to have an ultrasound on his hip.  They use ultrasound instead of xray because his bones haven't hardened yet.  After that we went back into the area where we'd seen the ONP and met with Clark's nurse, Emily, and also Dr Birch.  There were 5 people in the room during the doctor's exam, the ONP, Emily, Dr Birch, a visiting doctor from Spain and some random guy who (I'm assuming) was a staff doctor.

After all of that, Dr Birch said he'd like to try the Pavlik harness again.  I was all for it, for two reasons.  Firstly, because I don't think he got enough of a chance in it the 1st time, not to mention I was not educated about the harness and how it works by the previous doctor.  And secondly, the other two options involve casting and surgery, respectively.  I think we'll give the harness another go, thank-you-very-much.

What that involves is 23 hours a day in a pavlik harness.  It essentially looks like lederhosen with some stirrups for his feet.  I'm assuming you've got a strange mental picture right now...that's ok, you'll get a picture later here's a picture (my camera just arrived!!!).   Also, we'll see Dr Birch every week for at least a month to see if any progress is being made.

The doctor told us there's every chance it might not work, but it's worth it to give it a try.  There is more risk of damage to the blood supply with the other methods, so we're praying that this works.  If it doesn't the next thing they will try is manually putting the hip in place and then putting him in a cast.

He didn't sleep very well last night, being in the harness is a big adjustment.  Hopefully he'll get a little more comfortable in it.  We go back to Dallas next Thursday to see the doctor again.

Insert **happy dance** here

Guess who's getting one of THESE....

Yes that's right.  I am.  Jeramy surprised me this morning with the Amazon confirmation email for my shiny new Canon EOS Rebel T2i.  I am one lucky girl.  Clark better get ready because he's about to become the official test subject.

Better than Christmas

The diaper shipment got here TWO whole days early.  It was better than Christmas!..well, kind of.  Clark is the proud new owner of a wool soaker and 3 hybrid contour one-size dipes.  His laundress received wool wash and diaper soap..still exciting, lol.  Because these diapers are one-size, they look ginormous..like they will swallow Clark and his tiny heiny.  We'll see, they're priming in the wash as I type.

 

So my nurse friends have been banned from friending former patient's parents on Facebook.  I seriously cried...and then wrote an email.  I truly hope this can be reversed, we made some lifelong buddies during Clark's NICU stay.  As everyone knows, Facebook is the very best only way to keep in touch these days. 

We're t-minus 46 hours away from our Scottish Rite appointment.  I'm pretty nervous, also a little excited.  I'm so ready for his hip to be in the right place but I'm apprehensive about what it's going to take for it to get there.  Pray for us, please.

This Blog

This blog will likely be a tad different than the last two.  Those blogs were very serious 100% of the time.  This one will be a bit more blog-like in that I will also talk about things that I want to talk about or that interest me.  Yay, finally!

One of the main things that I've been thinking about when it comes to treatment for Clark's hip is his diapering method.  We've been told there's a good chance that he'll have surgery and casting as a course of treatment.  From him being in the pavlik harness, we know already that the business area and hip area are wayyyy too close together!  Diaper changes in the harness were a nightmare.  Now Clark is cloth diapered 3/4 of the time, and we're quickly working our way up to full-time.  I can't imagine trying to maneuver a prefold around a cast...but I'm hoping that's where his new one-size contours will come in handy, as they fit from 7lbs all the way up to 35.

Speaking of his harness, that thing was a stinky mess when it was removed after 10 days.  Can you imagine the stink from a cast.  Oh. My.  I'm wishing for there to be an alternative method (that actually works!) to surgery and casting.  I'll keep my fingers crossed but I'm not holding my breath.

Well, as it turns out...you can have your baby and eventually leave the NICU, but the friends you make along the way stick.  My bed rest friend, Beth, who lives in NY and had the exact same complication as I did, has a daughter who is still in the NICU.  She was born December 31st, so as you can imagine, this has been an incredibly long and hard road for baby Margaret Grace and her family.  The most recent thing was a tracheostomy and now they are working on getting her eating well and not inhaling the milk.

Our friend baby Chloe has had an intensely hard road over the past few weeks.  I've heard that all of her current problems could have possibly been prevented and that really saddens me.  Sometimes the standard of care is ignored, and that's never ok.  Whatever the case may be, the main goal right now is healing her and getting her to a good place.  But I'm afraid she may still have a long row to hoe.

Baby Maya came home a couple weeks ago and is still struggling with a few health issues.  I guess this is common for most micro preemies but it's hard to take nonetheless.  We saw baby Kierson at our eye doctor appointment this past week and she looked great!  It was so nice getting to see she and her mother, and she got good news while she was there, too!

Whether you've come here because you're bored, interested or just plain nosey (*wink*) welcome.  I'm finally getting the hang of this blogging thing.

Hip & Staying at home

We just got confirmation and appointment information from Scottish Rite.  Next Thursday.  Just in case anyone needs a reminder, Clark's left hip is dislocated.  It's been that way since he was born and likely for awhile before that.  There's a chance it's a malformation and not dislocation, we're just not sure yet.  Scottish Rite is in Dallas is apparently the leading pediatric orthopedic hospital in Texas so we're anticipating big things.

Most of you probably know that Clark hasn't made his debut in public yet.  We were warned very specifically by his neonatologist about the dangers of taking him into public and further, being touched by other people.  Even the common cold would be life or death for a baby with his medical history and situation.  It's hard for us to stay home sometimes, especially when we're so ready to get back to "normal" life and see people we've been missing for months.  I know many people feel a special connection to Clark and can't wait to love on him, but please don't take it personally if he stays in our arms when you do get to meet him, we're just protecting him as best we can.  Also, he's still on an apnea monitor which occasionally goes off and is ear-piercingly shrill.  That would be reason #2 we haven't been to church since being home.

In other news, Jeramy killed a huge rattlesnake in our yard last night.  That as good a reason as any to keep staying inside ;)  Thank you guys for caring and being so understanding of Clark's situation..we couldn't ask for better friends.



PS I'm in the amazon.com associate program.  If you purchase anything from a link on my site, I get a portion of the sale automatically.

Life thus far

We made our way out of the NICU on April 2...Good Friday. Boy was it ever. Clark is currently 16 weeks old (6 weeks adjusted) and has loved being home.



So far, we've seen the pediatrician, cardiologist, orthopedist, have gotten a good follow-up from the surgeon and the all clear from the eye doctor. We still have appointments with the cardiologist next month to see if the hole in his heart has closed.




His pediatrician referred him to Scottish Rite Children's Hospital in Dallas for his dislocated hip. We should be hearing back from them about a consultation sometime soon.

He's about 7 1/2 pounds and seems like he grows every day. Thanks for following Clark to his new blog. Feel free to leave us comments and, as always, we can't get enough prayers.

First Post

Hi Everyone! I bet you thought I'd never get around to creating this blog (me too!) But, finally, here we are....

Welcome to superboyclark.blogspot.com

If you have followed our progress previously from pprom.wordpress.com or www.caringbridge.org/visit/brandykelley or my personal Facebook page, you are in the right place to get the most up-to-date blogs on Clark's progress.