A Memorable Memorial Day Weekend (With Photos!)

Well, let's keep the actual words here short and sweet. It was a great weekend. All kinds of people were able to meet Isaac and Elias for the first time. Great Grandpa Theron and Great Grandma Phyllis top the list. They came to CMH and met the boys Sunday morning. Both sets of grandparents have been here this weekend at some point too, and my brother and his wife also made it here, all the way from Nashville. Kristi's sister has also been here as well as numerous great aunts and great uncles.

As for the medical side. I was looking back in earlier posts and noticed that we left out a term that is being thrown around for Isaac. They are diagnosing him with Spondylocostal Dysostosis.  Don't worry, we didn't know what it meant either (and couldn't pronounce it!)  So, here is a summary of what we know about Isaac. He has a dislocated spine, some fused ribs, underdeveloped lumbar region, underdeveloped lungs, vertebrae that are too close together, vertebrae that are too far apart, missing vertebrae, an inguinal hernia, and a club foot. Now, what does this all mean? It means we fix one thing at a time, try to get him healthy enough to go home and then work on the big issues as they come up. It does not look like any major surgery will be done anytime soon. His breathing is better and better and he is breathing completely on his own. His CT scan is amazing looking (we are trying to scan and put it here because it is kinda interesting). But doctors continue to think they can fix the problems he has. His foot is doing better and better thanks to PT.

Elias just keeps chugging away. At this point, Elias has no major issues of concern. He still has his heart defect, but that doesn't seem overly concerning to doctors. He continues to gain weight and learn to eat. So, he is doing very, very, well.

There is starting to be some chatter about what benchmarks they would need to meet in order to be released from the hospital. Just hearing that is awesome news. And, we have heard as early as ten days. That seems overly optimistic, but we will take it. Both boys have been cleared to take all feedings by bottle, which means the could actually be feeding tube free in the next couple of days.

Okay, that wasn't as short as planned. Here are a few more photos of the boys. Enjoy!  We will get more photos up here as soon as we can!

Kristi and the boys snuggling (May 30th)

The Grandpa's with Elias (May 30th)

Great Grandma Krehbiel with Elias (May 30th)

Uncle Russ with Elias (May 30th)

Aunt Roxanne with Isaac (May 30th)

The Top 20 with Isaac and Elias

Greetings from the 2nd floor of Children's Mercy Hospital.  My name is Isaac and my little brother is Elias.  We just wanted to share with you our experiences here at the hospital.  We are hoping Lucas Films will pick up the rights to the movie, but our agent (aka Dad) seems to be a bit lazy in trying to get a contract.

So, without further ado, here are the top 20 things about being a patient at Children's Mercy Hospital

20.  The food!  It's to die for!  That formula rocks, though can sometimes be a bit harsh at the other end.  Plus, I get to eat 8 times a day!  Na na na na boo boo.  Mom and Dad told us the formula stinks, well, we think Dad's coffee stinks, so we're even.

19.  The warm blankets!  Yep, I don't mind being a little snobby, being cuddled up in those blankets just gives me good feelings.  Usually such good feelings that I relax.  Relax, relax, relax, then usually relax and poop.  My parents can thank me later.

18.  The nurses are pretty cool too!  Sometimes mom and dad have to say something so that we get what we want, but that's their job right?  Usually the nurses just love on us, but, how could you not?  We are too cute to be passed over.

17.  Sugarbear!  Hang on (Shut up Eli, I will use exclamation points whenever I please, just because you are the same shape as an exclamation point doesn't mean you have to have a temper tantrum about it).  Sorry, Sugarbear is a gift from CMH.  So soft, so cuddly.

16.  Our wubba nubs!  Thanks Jennifer!  We love our monkey Wubba Nubs.  Don't know what they are?  Well then you aren't a baby!

15.  Those little electrical leads.  Makes us feel special that everyone wants to know what is going on with us.  And the tips are little dogs.  Speaking of dogs, Elias and I heard there is a dog at home who is ready to meet us so we are excited about that.

14.  Our friends!  Yes, we have made friends here at CMH.  I am not allowed to name them, but two of our friends have names starting with the letter P.  One starts with E, one starts with S.  And one friend who can be a bit loud starts with M.  All the babies here are pretty cool.

13.  The Machines!!  Holy cow are there a lot of machines.  Elias was a little stinker yesterday and pulled the power cord on my monitor and just grinned.  I got him back though when I shut off his feeding. Haha buddy.

12.  My moose!  He stays in my crib with me and Eli has a crab.  They guys keep watch while we are sleeping.  We've yet to see the boogieman so they must be doing a good job.  Our nurse just told me to give credit to mom and dad because they are here all the time too.  Whatever.  They get all the credit for us being cute, so they can deal with being slighted.

11.  HEY, THIS IS ELIAS, ISAAC SAID I CAN WRITE MY FAVORIT......Haha, Elias fell for it.  That was so fun. Oh man, here comes mom because Elias whined about me kicking him back into his isolette.  She says I have to let him write a few.  We will see..

10.  The Doctors!  And boy do we have a lot of them.  There's Dr. S (from our delivery), Dr. L (from Research), Dr. H (from Research, she rocks!!), Dr. O (from CMH), Dr. T (from CMH), Dr. D (from CMH), and Dr. S (from CMH).  Hmmm, that seems like enough people caring about us I guess.

9.  My physical therapist Megan!  She is helping me with my foot, which is a little messed up.  But she says it is getting way better.  She makes me do stretches, which I pretend to hate, but I actually like em.

8.  HEY, THIS IS ELIAS AGAIN, MY MOMMY AND DADDY HAVE LOCKED UP ISAAC FOR  A BIT.  MY FAVORITE THING ABOUT CMH?  THE HUGS!  I GET SO MANY HUGS A DAY, MAKES ME ALL WARM AND FUZZY.

7.  OH, AND THE OTHER THING I REALLY LIKE, MY MIZZOU HAT!!  YEP, DAD HAS TAUGHT ME ALL ABOUT THE TIGERS.  THEY SEEM AWESOME!  AND HE TOLD ME ALL ABOUT HOW KU CHEATS AND HOW K-STATE'S BASKETBALL COACH IS A BIG MEANIE.  I'M GLAD I AM A MU FAN, THOSE OTHER PLACES SOUND SCARY AND BAD.

6.  Enough Elias, thanks though.  You, that is good enough for number 6, just having Eli be quiet is a favorite thing here at CMH.

5.  Our grandparents!  They seem pretty cool.  I think Eli and I will be able schmooze them.  We are still working on that plan.

4.  Our parents!  Even though we make fun of them (especially Dad's weird sense of humor), we love em cause they love us.  Seems like a fair trade.

3.  Talking, I don't need to explain this one right?  You know who my parents are, so you should know we both love to talk.

2.  Dreaming.  I have a great dreams, not sayin what they are about.

1.  And our favorite thing about CMH?  Our health has gotten better.  Seriously, that is our favorite thing cause all these important people have started talking about us getting to go home in a few weeks.  We hope so!

I know it was a long post.  Sorry!  Hope to see you all soon.

isaac and elias

A Family of Four

Sorry it's been a couple of days, but we've been busy!!! There have been lots of ups, and a few downs, but overall very successful.

Isaac started us out on Sunday with orders to turn off his oxygen (he had been on 1L of flow at 21%). Ryan and I went to church, and when we got back, Isaac was tube free! Then, they decided it was time to move to a crib from his isolette. Our nurse, Amanda, saw to it that his crib was outfitted with a KSU Wildcats quilt. He was sleeping really soundly all day, and started to show some signs that he was working really hard to breathe on his own without any oxygen support. So, they ended up putting Isaac back on oxygen, the same as before. He just wasn't ready to go 'cold turkey' off of the oxygen.

Isaac has also had lots of attention from the Physical Therapy lady. He doesn't complain, but he doesn't seem too excited about it either! She has taped his club foot to help position it more towards midline (I'll try to get a picture later to better explain). We also are working on range of motion exercises/stretches for his little legs. He is tolerating those well, and they seem to be helping.

As of today (Tuesday, May 25th) the neonate, Dr. T ordered for Isaac's flow on his oxygen be turned down to .5L flow. He's been on that for about 4 hours, and seems to be doing well. We'll see how he tolerates it by tomorrow morning before Dr. T decides to either turn it off, or let him go another day on .5L flow.

Sir Isaac is continuing to learn to eat. He does okay with a bottle -- doesn't quite take a full feeding (currently 45mL), but is working up to it. He needs to take some eating advice from his little brother!

As for Elias, things have remained stable, and even boring, which is very good in the NICU! His changes are that he can feed orally twice a day, and has even polished off a bottle (Monday, May 24th). He currently gets 25mL per feeding, fortified to 24 calories.

Eli is now 'wireless' for the most part. He has a feeding tube, and then all of his probes that measure his heartrate, respirations & oxygen sats. We got orders today for his midline to be taken out, so no more IV!   He is still in an isolette, but the purpose is so that he doesn't have to work very hard to maintain his body temperature. This will help him conserve energy so that he can grow quicker. He currently weighs about 3lbs 8oz (1593g). We have been told that he will make the transition to a crib from his isolette when he reaches a weight over 1800g (4lbs).

Mr. Eli is a very calm and easygoing baby. He's happy most of the time, and smiles a TON! So much fun to see! Isaac lets us know when he's upset, usually means that he has a dirty diaper!

While Isaac was tubeless on Sunday, we got a chance for all 4 of us to sit together as a family. This is something that we hadn't gotten to do yet, and was so very special! Enjoy our pictures of our Family of Four!

Again, we can't thank each of you enough for all of your thoughts and prayers. To think of the position we were in 11 days ago, and to see how far we've come, we know that it is because of all of the prayers that have been and are continuing to being sent to the Man Upstairs!

Pictures with the Grandparents

Grandma Elaine (she hasn't decided on her 'grandma' nickname yet) and Eli

Eli with Mommy, Gma Elaine and Grandpa Timmy (aka Pops)

Isaac and Grandma Debbie

Isaac with Daddy, Gma Debbie, and his Parole Officer (aka Grandpa Kevin)

Finally, A Medical Update

For all you nurses and doctors out there (and those who stayed at a Holiday Inn Express), here is your latest medical update on the boys.

Elias is doing very well. Yesterday he was diagnosed with an Atrial Septal Defect of the heart. While not something you want to hear, it is something that is correctable and should not pose a huge problem for him. From what we were told, it basically means he has a hole between the upper two chambers of his heart. This allows blood from one chamber to go into the other and vice versa. It may make him work a little bit harder but cardiologists didn't seem overly concerned. He will monitored by the Children's Mercy Cardiologist team for quite sometime and may require heart surgery in a couple of years to patch the hole if it doesn't close on its own. As for HI, THIS IS ISAAC, DAD SET THE COMPUTER DOWN FOR A SECOND, SO I DON'T HAVE LONG TO TALK, MAN, THIS PLACE IS HUGE, THERE ARE SO MANY, CRAP, HERE HE COMES, TALK TO YOU ALL LATER!

Okay, I suppose I can leave that message. Turn your back for just a minute...Anyway, Elias is gaining weight like a champ. He is up to 1557 grams (get your conversion calculators out people). Okay, I will just tell you, that means he is about 3 lbs, 7 ounces. He is now above birth weight!! He is breathing completely on his own, no nasal cannula, no nothin. He is also off his lipids (fats) and learning to eat. Way to go Eli! His general concerns are to continue to learn to eat, gain weight, and regulate his own body temperature (since he is so small). Overall, he is doing very, very well considering his size. And, as you will see in some posts in the next few days, he SMILES all the time. Anyway, those pics will be here tomorrow most likely. And now for Isaac.

Isaac still has some hurdles. Let's start with the good news. He is gaining weight (he is almost exactly 5 pounds) and is doing well learning to eat. They have lowered the nasal cannula settings to 1L of flow and will hopefully continue to wean him off the cannula over the next couple of days.

The bad news...there really isn't any right now! What we are learning about Isaac is that he will have quite a few things to track as he begins to grow. Those will be hurdles we will have to overcome when they arise, but for now, we are just extremely grateful for the progress he has made. Things we do know: he has a club foot (right foot), which means his foot is turned almost completely inward. He receives physical therapy everyday for this and we hope that surgery (farther down the road) will help alleviate this problem. He still has hypoplasia of the lungs (underdevelopment). This will most likely be a concern for quite sometime. However, at this point, he seems to be learning to deal with it by taking shorter breaths more frequently. It is certainly something they will have to monitor. And, of course, his spine. Orthopedic spine specialists were by today and were not able to give us much information yet.

Isaac had a MRI of his spine yesterday (Friday) and the radiologists and orthopedists were to analyze it today and tomorrow and we will most likely hear something on Monday. Isaac definitely has a twisted spinal cord and his rib cage is short. What this means, we are not entirely sure. Because he has movement in his legs, they will proceed cautiously. Rumors are he will undergo spinal surgery (scary scary term by the way), but will not have that surgery until the age of 2-3 years old. They are definitely concerned about his overall movement capabilities but for now, are satisfied with his progress. We have successfully navigated 8 days here at Children's. We most likely will get to know this place real, real well over the next few years.

HEY, DAD SAID I COULD FINISH MY THOUGHT FROM EARLIER. WHAT I WAS GOING TO SAY WAS THERE ARE SO MANY GOOD DOCTORS AND NURSES HERE THAT YOU ALL SHOULDN'T WORRY TOO MUCH ABOUT ME. I AM STRONG (YOU SHOULD SEE MY BICEPS!) AND I WILL BE JUST FINE. NOW, IF ONLY I COULD GET A DVD PLAYER IN HERE AND WATCH SHREK! SEE YA PEOPLE!

Hope all is well on the outside (that is what I am calling anywhere but the hospital) and we look forward to seeing you all soon.

Happy One Week Birthday from Mom and Dad

Isaac and Elias,

Happy One Week Birthday!  Mommy and Daddy love you both very much.  We are so blessed to have you, both of you are truly answers to many, many prayers.  And even though you have scared us just a bit, we know you both are fighters, little boys who are going to thrive.

Over this past week, you've given us many grey hairs, some tears of fear, and many tears of joy. Both of you make our hearts smile.

In the past seven days, you've each had your first car rides, albeit in an ambulance, in an isolette (or an apartment, as the transport teams called them!). You've had your first bottles, burps, hugs & kisses, diaper changes (thank goodness for that!), baths & binkies, bedtime prayers and lots of love from all of your family.

You've also had your first IV's, MRI's, heart echocardiograms, head ultrasounds, kidney ultrasounds, and the medical list goes on and on!

We can't wait to watch you both grow up right before our eyes.  We look forward to bumps, bruises, ballgames, and banter.  We know you will turn into fine young men, and we are proud to call you our sons.

Happy 1 week! We love you!
Daddy & Mommy


 

Allowance (a true story by Elias John Murdock)

Hello everyone! Mom and Dad said I could write the update for tonight. So, here goes!

Everything is going well for me and my brother. We are eating, sleeping, and pooping. Yep, I said it, deal with it (it happens you know). Our nurses continue to take real good care of us and mom and dad are always there loving on us. We like that, and don't tell the ladies, but I like to snuggle with mom and dad. Our grandparents are pretty cool too, Grandpa showed up with a gun today (silly people, he is a police officer!), it made all the other NICU kids jealous. We still are learning to breathe on our own, but cut us some slack okay? I mean, I am trying to gain weight, breathe, eat, sleep, and all of these other things, so sometimes I need a little help.

But, I HAVE BIG NEWS TO TELL YOU ALL: I BROKE OUT OF RESEARCH. Here is the story. Mom and Dad gave me my first ever allowance the yesterday. They gave me 5 pennies. Initially I was mad. I was like, "what the heck can I buy with these, this aint the 1920's". But then I hatched a plan. I went over to one of my NICU buddies and offered him the 5 pennies, all he had to do was give me 4 nickels. I convinced him 5 was better than 4. Then I offered another buddy the 4 nickels in exchange for 3 dimes. He took the deal. I then went into the other NICU room and offered the 3 dimes for 2 quarters. Bingo! And finally, offered the 2 quarters for one piece of paper money. Jackpot! Had a $20 now. So, I offered it to the mean insurance company lady. She had told me the day before I couldn't go see my brother. She wouldn't take it. I offered it to the Research nurses. They weren't allowed to take it either. The mean insurance lady must have told them to stay quiet! Finally, I offered my twenty to Children's Mercy and asked them to call me a cab.

But they did better than that! They sent this big van lookin thing with pretty lights and a music box that made the other cars go to sleep and drift to the side of the road. Pretty cool machine if you ask me. Anyway, let me ride in that and I got to set up shop at the hospital! So, NOW MY BROTHER AND I ARE RIGHT NEXT TO ONE ANOTHER. AWESOME!

And the best part? Children's Mercy let me keep my twenty! Piggy bank time baby!

We will continue to have more tests done in the next few days but I will let mommy and daddy give you all the medical terms, that is boring stuff for a 5 day old kid.

Thanks everyone for reading my story. I will tell Isaac to write something here soon.

Elias

&