Isaac's Spine Pictures (and a corresponding explanation)

One of the scariest things Kristi and I have dealt with through the first month and half of our boys being with us is the constant realization of the upcoming surgeries that Isaac will face as doctors deal with the multitude of concerns they have with the internal structure of his spinal column and ribs.  So, we have received many questions about what exactly the problem might be and so we are posting his CT scans on his spine and pelvis areas.  As most of you will notice, there are some serious issues.  It is weird to see these pictures (even for Kristi and I) because we see our little boy right now and you wouldn't be able to tell the issues he faces with his spine.  So, I will do my best to describe what you are seeing in the pictures.  Again, the official diagnosis is Spondylocostal Dysostosis.  For our purposes, I have included the picture of a normal looking spinal column and ribcage of an infant.  In the picture you can see the feeding tube and monitor lines.  Notice the spinal column is straight and the ribs are separated appropriately.  This is a good reference point because after this picture are the two pictures of Isaac's spinal column.  His is obviously very different.

Normal looking spinal column and ribcage of an infant.  This particular infant has a lung problem but the general scan is a good reference point for Isaac.

And Isaac's scan - the first picture is from the front, the second is from the side.  This first picture from the front still amazes me because it reminds me of how disorganized his spinal structure really is.

Trying to explain these pictures is difficult, so hopefully the captions help.  The problems that you can see in this photo are the fused ribs (and he has multiple fused ribs), a missing rib (on the right side of his body, left side of the picture), a spinal column that is just disorganized, some vertebrae too close, some too far apart, some missing, and others underdeveloped.  The pelvic region and lumbar region are also very underdeveloped.  That pelvic area should have the look of the top of the letter T, but as you can see, it doesn't.

Now, this is the side view

This picture gives the incredibly clear visual of the spinal column dislocation.  You can see the huge void where the column has literally shifted way to left (right in the photo).  What this has done is force the spine to bend with the dislocation.  That puts the spine under incredible stress.  The spine is also very narrow at that point of the dislocation and that further complicates the issue.

Dr. S has said he will have two basic options for surgery.  One, is to move the spinal column over into the void.  This is a very complicated procedure and risky (though all spinal surgeries are risky).  The second is to fuse the bones together at the point of the dislocation and then in a second and third surgery chip away unneeded bone and let the spine "float" back into a relatively stable and comfortable position. Either way, the surgeries are complex and have a goal of easing the stress on the spine.  These surgeries will be done starting sometime between the age of 1 and 2.  Scary, but necessary.  At this point, Isaac has good movement of his legs, feet, and toes which is very promising.  It is hard to get any real prognosis for what his mobility will be like as he gets older and bigger.  We obviously pray for the best.

Anyway, that is the general idea and why Isaac is a very, very, special young boy.  As Dr. S has put it, he has seen all the abnormalities that Isaac has in his 20 years at CMH, he just has never seen them all present in one infant.

Thank you for everything all of you have done for us, we appreciate it.  Our journey will be a long one, but it has been wonderful so far.  Now, for a nap (haha, yeah, right).

A few more pictures...

Isaac 6.18.10

4 Generations 6.20.10

Elias 6.23.10

Photos and a few more photos

For some reason, people seem to like photos.  So, one day late, here are two of our favorites.  Enjoy.  And of course at the bottom is our fine puppy.  Didn't want to exclude her!

From the World Cup to Facebook

The boys sent me their World Cup bracket for the rest of the tournament. They included little notes about each game so I thought I would share. I will also reprint their rant against being denied their own facebook page.

Dad,

Here is our World Cup bracket you asked us to fill out. Brackets 2, 3, 4, 5, and 6 are on the counter. We think it is unfair you get to fill out 10 brackets, but whatever. Our $10 entry fee is clipped to the bracket in the form of an IOU. Just take it out of first few allowances. So, without further Edu (haha!, Non-soccer fans might not get that one) here are our picks.

Uruguay over South Korea - Why? Because we have never heard of the country Uruguay and may never hear about them ever again. Let them have a little glory for once. Real reason? They haven't given up a goal the entire tournament, and that won't change in this game.

UNITED STATES over Ghana - Why? Duh, we are homers. You didn't honestly think we would pick anyone else did you? Oh, and if the U.S. gets another goal taken away on a bogus call, we are hopping a plane to South Africa and will have a word with those "Fifa people". Plus Dad showed us the reaction to Landon Donovan's goal on Youtube yesterday. It made us cry (or were we hungry? Hmmm, oh well, either way, it was moving).

England over Germany - Why? Well, we like the accents of those English players and can't understand the German ones. Seems easy enough then.

Argentina over Mexico - Why? Cause we don't like Mexico since they play the U.S. all the time. It's not that we don't like the people of Mexico, we just don't like their soccer team. Oh, and Argentina has the best player in the tournament. Lionel Messi, check him out. Elias says he could beat him, but I don't think so.

Netherlands over Slovakia - Why? Because we like orange. Dad is supposed to explain to us why they also call themselves Holland, yet the people are the Dutch. We are very confused by that, but he said it all makes sense. Whatever.

Brazil over Chile - Why? Cause Brazil is good, and we can't root for a country that has the same name as something that gives us really hot poos. I mean, yikes.

Paraguay over Japan - Why? We don't know, this might be the most boring matchup of the entire tournament. Japan does have a guy named Honda on their team though. We were wondering if he is overpriced talent that gets injured all the time. We also wondered if his first name was Accord.

Spain over Portugal - Why? Well first, this is the battle of the Iberian Peninsula (we googled it). The people will be going crazy. We heard a rumor that if the people get rowdy enough that their land may just break off and those countries will just be floating in the Atlantic Ocean. We think Dad is full of crap though. Spain is better though, no doubt about it and we don't like Ronaldo, he is a wuss and a ball hog.

Quarterfinals

UNITED STATES OVER URUGUAY - Just because we want to hear those USA chants over and over again.

Argentina over England - Hmmmm, this could be the best game of the tournament after U.S. games of course.

Netherlands over Brazil - Cause we want an upset pick! Deal with it! Besides, we still like orange!!

Spain over Paraguay - Cause we don't want the boring team from Paraguay to do anymore damage to our eyes.

Semi-Finals

Spain over the Netherlands - Spain has 2 dozen bulls chase down the Netherlands team the day before and the Dutch are exhausted. Spain wins 3-0.

AND, Argentina over the United States - We are realists people. But, in the game Landon Donovan did kick Maradona in the...dad says I can't finish that sentence. But we think Maradona is an egomaniac who needs a good kick in the...

United States over the Netherlands for 3rd place - Yes, they actually play a 3rd place game.

And the Champions are? SPAIN!!! Why? Cause any country that allows its people to take naps in the middle of day is the coolest place on earth!

Facebook

Mom and Dad,

We want a Facebook page. You said no. We think that is unfair. You said life is unfair. We think using these cliches on us this early is a little much. You said deal with it. We asked why we couldn't have a page. You said cause we said so. We asked again. You said our computer usage would take up too much electricity. We don't believe you. You said while we are living here under your roof, we have to live by your rules. We said bummer. You said money doesn't grow on trees. We said, it doesn't, huh, that's news to us. Anyway, maybe you will reconsider soon. You said, not likely.

New pics coming tomorrow. Have a great weekend everyone.

Our World in Nutshell

Let's see, what has been going on in our world? And when I say our world, I mean our house, because right now that is pretty much our world. Our two wonderful boys are currently figuring out how to eat more and more (and are doing quite well at this). They each continue to gain weight, and Elias is well over 5lbs and fits into a car seat quite nicely. This means outings are possible (but not exactly easy) and we do intend on getting the boys out and about for short periods of time whenever we can.

Isaac has moved into his second cast for his club foot. He seems to tolerate the cast pretty well. We are just waiting for the day when he realizes if he kicks with that leg he can do some real damage. Maybe he will be a great soccer player someday? Maybe, but just remember he will still only be the second or third best player in this house (daddy is 1st of course!).

In addition, Isaac will have his hernia surgery in a week. July 2nd is the day. What a weekend right? Hernia surgery followed by BBQ and fireworks on the 4th. I am sure we can convince him all the fireworks are for his surgery going well. He will like that. Of course, here is hoping it isn't 99 degrees on the 4th. Overall, Isaac is doing well and continues to show some tremendous strength (just ask Kristi's hair about his pulling power!).

It seems as though the boys personalities have switched a little. Isaac has gotten more and more laid back and Elias has gotten a little more needy and cranky. We are trying our best to teach the boys the difference between night and day (this tends to be a struggle so far) and we hope they will learn this difference sooner rather than later. Our sleep patterns would really appreciate it.

We have some pretty neat photos to post this weekend, so check back then. Oh, and I hear there has been some talk among the boys about protesting Kristi and I denying their request to get on Facebook. They wrote something about it, I will share that later this weekend too.

Isaac and Elias say thanks for everything (so do Kristi and I of course) and we look forward to more great weeks ahead.

Happy Fathers Day!

Isaac, Eli and I want to wish Ryan a very Happy Fathers day! Ryan is such a great daddy, and takes great care of the boys and I. From changing dirty diapers to feeding hungry babies to making sure we all are getting a good amount of rest, Ryan looks after us and makes us a great family.

Even when we were in the hospital (and even before the boys were born - when I was on bedrest), if there was something wrong, if one of us needed something, or we needed to be advocated for, Ryan was quick to be on his way to talk to a nurse or whomever he needed to make sure whatever it was, was taken care of. And if it required asking again, he didn't hesitate.

Each morning, he has been spending time teaching the boys about soccer. He's had so much fun sharing the World Cup games with the boys. I am excited to watch Isaac and Eli grow, and learn about soccer, golf, and lots of other sports from their dad.

Excited to get to meet his boys! 

From the first days in the hospital...

...to getting to bring us home...

...and relaxing with us at home - you're always here to take good care of us!

WE LOVE YOU DADDY! 

Isaac, Elias & Kristi

Under Construction... (and hopefully no roadblocks!)

We've had LOTS of appointments this week! They started on Tuesday morning, with the Orthopedist for Isaac. To be honest, we thought we were going to get a game plan on how to proceed with Isaac's club foot. And that is exactly what we did... and then started our plan! Dr. S told us that the way we are going to correct Isaac's foot is by serial casting, and then a brace. To break that down, Isaac got a cast on his leg on Tuesday, and for the next 4 or 5 Tuesdays, we'll trek back to CMH, where Dr. S will take off Isaac's cast, and then reposition his foot and recast it. When we are done with the casting in 5 weeks, little man will get a brace that he will wear 24/7 for 3 months. After his 3 months are up with it, then he will wear it at night until he is 3 years old. I'll post a picture later. He's pretty darn cute with the cast too!

We were supposed to have an appointment with Physical Therapy for Isaac after the Orthopedist, but there wasn't much they could do with his foot while its in a cast, so we were on our way from there.

The other task we wanted to complete while at CMH was to get Eli fitted for his actual carseat. He came home in a car bed because he is so tiny, but he was over 4 and half pounds, and getting to tall for the carbed. We wanted someone to look at him in his carseat and make sure that it fit him properly so we could be sure that the positioning wasn't affecting his airway, and that he is safe in it. Sounds easy, eh? We had tried calling the carseat nurses since Friday of the previous week, with no return calls. So we headed up to the NICU to see if our friendly front desk ladies could try to page them. Again, no answer. So we went over to find their office, which was like a mile walk itself, and posted on the door is that their office hours are from 10am - 4pm by appointment only. Explain to me how I can get an appointment, if no one answers the phone or returns calls!?!  So we took Eli back home in his carbed.

In the afternoon, we had a surgery consult with a different Dr. S for Isaac's right inguinal hernia. If you remember, they had told us while the boys were inpatients there that they'd like to wait until he's 6 months old, as the anesthesia risk goes down at that point. So that was all the basis we had to go on for that, until the appointment. Dr. S seems to think that with some of the complications that Isaac is having and the size of the defect, that we need to do surgery sooner rather than later. He suggested next week. Of course, nothing is that easy, as when the scheduling nurse called, she said his next available time to do the surgery isn't until August 4th. Ummm, we're under the impression that it is a bit more urgent than that, so we conveyed that to her. Of course, Dr. S is out of town until Monday, so we're still waiting to hear a confirmed date for Isaac's hernia surgery.

And, if those appointments weren't enough, we had Pediatrician appointments for both of the boys on Friday. Yet with a different Dr. S! Isaac weighed in at 6lbs 7oz (with his cast) and Elias at.... drumroll please...... 5lbs 1oz! I think that Eli is really proving that there was just a problem with how his placenta and umbilical cord formed and provided him with nutrition, rather than there being a problem with him and how he grows. He continues to amaze us with every weigh in. We'll continue to watch Isaac, as he isn't gaining as fast as we'd like, but also with his Spondylocostal Dysostosis (SD), he won't grow longer as quickly as a 'normal' baby would, thus his weight gain may be less.

To celebrate the week, and part of Fathers Day, Daddy got a new grill, and we had lots of family over on Friday night to grill out. Great-Grandma and Great-Grandpa Krehbiel brought over some ribeyes, and Great-Grandma fried up some squash. Mmmmm. We also had some homemade ice cream, pie, cake, salad, and the list goes on! Grandma Laine, Great Aunts Lisa & Lynne, and Carrie and Erica were also here with us. We're looking forward to Pops/Grandpa Tim to make his way up here tomorrow for Fathers Day!

We hope everyone has a great weekend, and Fathers Day.

Hugs-

Happy One Month Birthday, Boys!

Isaac and Elias,

You have made it one month into what we hope and pray will be long and successful lives.  It is amazing to think that one month ago we were being told that one of you might not survive (that's you Isaac, and I will let you color those gray hairs you gave me at a later date).  You have come home in under one month at the hospital (after being told you most likely would be there 50 days minimum).  You have overcome breathing difficulties, heart defects, spine defects, growth restrictions, and numerous other small ailments and you are thriving.

We've been enjoying your little personalities at home (99% of the time!). Isaac, you seem to know what you want, and that you wanted it 5 minutes ago. We love looking into your big eyes, and wondering how you will see the world through them. You seem to take after your mom, at being a night owl... staying up for hours in the middle of the night, just thinking and wanting to hang out. We've told you lots of stories, and you've been quite the captive audience (but then, did you really have a choice?). You like to sleep in bits and pieces, with the occasional 2-3 hour stretch, but those are few and far between! You have increased the amount that you eat, and have increased your weight up to 5lbs 12oz (as of 6.10.2010), proving that you are continuing to thrive.

Elias you also have incredible eyes. When you are awake, you appear to be looking at what the world (or our house) has to offer. We're excited to hear someday what all you've been thinking of and plotting! There seems to be quite a bit of deep thinking and concentration going on in your little head. You're a good little sleeper (usually), and a good eater. This is evidenced by your average weight gain of an ounce a day. As of this past Thursday (6.10.2010), you weighed in at a whopping 4lbs, 7oz. You've gained nearly a pound and a half since you're lowest weight (3lbs, 0.08oz).

You have made your mom and I work just a little harder.  But we wouldn't trade you guys for the world. You're such little miracles and answers to many prayers.  We can't wait to see what the next month brings.

We love you.

Daddy & Mommy

 

Some pictures of what we've been up to at home...

After our first baths at home - Isaac & Eli

6.6.10

Great Aunt Darleen came to meet us! 

6.6.10

Emily came all of the way from Kentucky to meet us! (Okay, so she was in town for a conference, but we told the boys it was just for them!) So good to see you! 

6.4.10

Elly likes to watch over us, and thinks we're pretty swell. 

6.7.10

Daddy enjoying the fresh air & feeding Eli. 

Elly wants to know where her bottle is??? Hmmm...

6.10.10

Aunt Roxy & Uncle John  6.12.10

We've had several other visitors too, but sometimes I don't always remember to get out the camera!

Sweet Home Alab..err Lee's Summit

So I know we haven't really posted an update in quite awhile. The reason? Well, it's been a bit busy at home. We have figured out the following things about having the boys at home:

1. Bottles require being washed twice a day. That is how many we go through (14-16 a day between the two boys). That's alot of washin.

2. Rooms miraculously turn into "storage areas". For example, our dining room is now a "storage area". Why? Cause we aren't using it, don't plan on using it anytime soon, and don't often wander in there. Out of sight=out of mind. Sweet.

3. A crying baby can wait...but not for long...or the other one starts crying. But here is what I can't figure out. They can wake each other up by crying but they each can sleep through vacuum cleaners, the dog barking and other, much louder noises. Weird.

4. My portable DVD player has become very valuable in the middle of night.

5. Isaac is awake probably 12-14 hours a day. This seems to be out of the norm. He doesn't seem to mind though. Only our sleep patterns seem to mind.

6. Eli is very laid back so far. Smiles quite a bit, and generally is a friendly little guy. Isaac is friendly, but can be much crankier (and faster) and generally requires just a bit more TLC.

7. Everyone kept talking about how hard this would be. It isn't hard. It is tiring, it is exhausting, it can be frustrating, but it isn't hard. IT IS REWARDING. Even though I think I wish I could sleep more, I wouldn't trade the smile at 2:15 in the morning I got from Eli couple of nights ago or sitting with Isaac for almost 4 hours last night. He wasn't cranky, just wanted to see the world, and I am glad I was there to share it with him.

8. Ok, we are tired!

9. Having visitors every now and again makes you feel like you are a real human again!

10. The new weights!! Isaac is 5 lbs 12 oz and Elias is 4 lbs 7 oz

Pics of our time at home coming tomorrow or Sunday. See ya!

Our last couple of days at CMH, and our Journey Home!

The last couple of days at CMH (June 1st & 2nd) were quite eventful. The boys had hearing tests, each got a shot, car seat tests, and the list goes on. We'll share a few of the pictures from their adventures!

Eli's bedspace at Children's Mercy

Elias - sleeping through his carseat test (note, he was too tiny for his carseat, so here he is in the 'car bed' that they sent him home in! (June 1)

Isaac's bedspace at Children's Mercy

Isaac - sleeping through his carseat test (June 1)... I think we might have to teach these boys that in the future, they won't be allowed to sleep through tests! 

We didn't take pictures of them getting their shots, or their hearing tests - we thought that wouldn't be very nice!

Before we were able to bring them home, we stayed the night with them on Tuesday night in what they call a 'Parent Care Unit' or PCU.  The PCU is essentially a hospital room that has a full sized bed, and room for the crib(s). There's a TV (although ancient), and a bathroom. They say it's kind of like a hotel room, but I'd have to argue that the last hotel room we stayed in had a king sized bed and a down comforter! I digress... anyway, I don't think there was much hope for us to get any sleep anyway! The reason for staying in the PCU is to ensure that the parents are able and feel comfortable taking care of their kids before they bring them home. Here are a few pictures from our time in the PCU:

Door to our room

The cribs inside of our PCU

Hanging out! 

Isaac getting his wagon ride! (Eli didn't get one... he had to be carried because he was so tiny!) - June 2

Eli getting into his carbed (June 2)

Ryan getting Isaac in the car! (June 2)

...And then we were on our way home! As Ryan was driving in the parking garage, he made the comment that he didn't feel that he should drive any faster than that going home (which was about 5mph). Upon further calculation, and realizing it would take us about 3 and a half hours to get home at that rate, he decided he would just drive the speed limit, very carefully! We then made it about half a mile, and I thought Eli was making funny noises, so Ryan pulled over the car so we could check on him. All was well. I am sure the boys were wondering when we would ever make it home at this rate! After that, we made it all of the way home, and have been trying to get some sleep ever since! 

The Power of Prayer

Isaac and Elias Murdock would like to say something to all of their family, friends, and followers.

WE ARE HOME!  THAT'S RIGHT, WE CAME HOME TOGETHER AT 3P.M. ON JUNE 2ND.  OUR FIRST FULL DAY AT HOME WILL BE OUR PARENTS ANNIVERSARY.  WE PLANNED IT THAT WAY.


They boys would like to say thank you to everyone.  Each one still has some hurdles to overcome and we have dozens of follow up appointments on the books.  But for now, we are a family of four in our own home.

We will be posting some pics of our time at CMH and our trip home here shortly.  Again, thank you everyone, we still have a long road to travel (especially with Isaac) but it is nice to be together.