Fashion Show

I have a little time at lunch to update everyone on our journey.  Kaleb is doing awesome and is pretty much on the feed and grow plan.  There are no medicines on the pole next to him.  He gets a couple shots and a few blood draws throughout the week and that is it!   We still have to stay in the ICU until he shows weight gain, but we’re headed down the right path.   Not only have they increased his food intake, they have added formula with extra calories to put weight on him.   Kaleb has also found that mom is a good food source and both are naturals at the breast feeding activity, which is done 2-3 times a day now.

Mom and dad are hanging in there.  I’m trying to balance work and life in the ICU.  Mom is the super champ.  She’s been at the hospital this whole time, pumps every 2-3 hours, keeps up with rounds, and makes sure the nurses are taking extra good care of him.  I so married a bad ass!!!
Because I don’t have too much time to write, I figured I’d post a bunch of pictures.  Honestly, there is not a lot to write about.  Each day is more positive and is another step toward our first surgery.  Which we hope is in 3-6months.

Enjoy the show. 
Karl

Man with a faux hawk

Mom and Kaleb

First outfit - Rockin the frogs

Prinz Family

Checking out the moo cow hanging from his heater

Sleeping under prayer blanket that he got from Aunt Jackie

Just happy!  Dad's favorate pic....

Swaddled!

Daddy taking a picture just a little to close.... :)

Leting everyone know he does not want the tubes in his nose anymore.

Daddy holding Kaleb

Tummy time!

Telling you to stay tuned.....

Gotta get back to work!
k

Weekly update

It’s been awhile since we posted on the blog.  I had to go back to work this week, and making the transition has been a little busy.  Kaleb is doing awesome, and we couldn’t be happier.  I’ll do a daily summary to catch everyone up.

Weekend:

Nothing too exciting happened over the weekend.  Doctors kept slowly limiting the medicine Kaleb was taking and we began feeding again.  He’s pretty content until you change his diaper (the boy does not like a wet diaper) or take his temperature.  Grandparents made their usual visits and we kept to our usual sleeping and pumping.   We did manage to assemble Kaleb’s beads of courage into two necklaces.  I’ve been wearing one each day since Monday to show how courageous Kaleb is.  You can go to the beads of courage website to learn more.  http://www.beadsofcourage.org

Monday:

This was a hard day for me.  I went back to work and tried to re-engage.  The Sunnyvale ES project goes out today, (9-15-11) and I wanted to go in and help during the crunch time.  I care about my job and the projects I work on.  It was difficult to have one foot at the hospital and one at the office.  I must say that the people at WRA are outstanding and are definitely a second family to me.  They are a very generous group of people!!!!  My team didn’t let me dive into the project as much as I wanted too, but I still got my hands a little dirty and made a couple of fusses….. :) They did an outstanding job and the project is in excellent shape.  Darden, Tony, Lowell and Hal get a “gold star” (inside joke) for staying late and working out the kinks.  After work, I went home to let Yuki out and then drove to Children’s.  It seems that will be my routine for awhile.  Work during day, and then go to hospital at night.  I’ve been leaving Children’s around 11-12ish and sleeping at the house.  Jenifer wants me to sleep over, but right now I need good sleep to get through the work day.   We’ll see has time progresses.

Tuesday:

OUTSTANDING DAY!!!!!   While talking to Jenifer on my way to work, they said that Kaleb’s breathing tube was being removed.   I drove in the parking garage and right back out and spent the whole day with my family!  What a great day to finally see our little boy smile and make the cutest sounds one could ever hear.  Both grandparents made it up for the day and we all had a great time.  More medicine reduced as well.  There was a little tense moment between Monday and Tuesday in regards to some lines being removed and added.  But all came out well.  Can’t think of much to say about the day other than it was perfect and one of the best days we’ve had.  

Wednesday:

Went back to work and then made it to Children’s a little later than I wanted.  Brought Jenifer some Taco Cabana for dinner and we both got to hold him.  (Actually Jenifer has been able to hold him every day since the weekend)  I now feel like a new dad.  Trying to figure out everything I can do to calm him down and get him to stop crying. LOVE IT!!!!   Just wish we could hold him and walk around the room.  I’m sure in time. 

Thursday: (today)

During rounds this morning it appears that many of his lines will be removed tomorrow.  Not going into much detail here.  No need, just know that it will be much easier for us to hold him, and hardly any medicine in him.  The other information that we’re waiting on today is the result from the Rhino Virus test.  If it comes back negative, NO MORE GOWN AND MASKS!!!!  He can finally see what our faces look like!  Our daily routine is starting to become a familiar place.  Still will take a while, but we’re on the right track.  Kaleb has gained 8oz and has started feeding therapy.  Hopefully he will be taking a bottle soon.  Mommy’s “grow grow juice” is flowing in the ounces now and is feeling much better.  Most of the water gain from the preeclampsia is gone too.   We’re just trying to settle into a routine until the next surgery.  Not sure when, but hopefully in 3-6months.

That’s the update now.  Got to get back to work but below are a couple pics.  And yes, Jenifer has not read, so feel free to play the grammar and spelling games most play with my letters….. :)

Dad… (that feels great to write!)

Kaleb holding his own passi!  What a stud!!!

Snoozin'

Saying hello:

Kaleb’s Room – The Technology and Decorations

I keep saying that I want to post about living in the CICU but I think I’m going to take a different approach and make mini posts about certain aspects of our environment.  The overall picture will be the “living in the CICU”.

The attached picture is Kaleb’s room.  I took the picture pretty far away, because I don’t want anyone to read the screens, violate any rules, etc.  But I did want to briefly show how amazing this facility is and the technology that is here.

Room overview:

 Kaleb is the center of attention and is in the middle.  You can see the green blanket on the bed above the 3 pull out drawers.  On the left is the medicine pole and monitors on the right and behind him.  The room can also act an operating room, and the operating light is in the upper right with frogs hanging on it.  If you look in the background you’ll see a blue screen.  Our bed and home is behind that.  In the other rooms we were beside Kaleb, but I like this arrangement better.  It provides a more private space, and we can still take the other monitor that is in the upper right and arrange it to where we can see it. 

The noises and monitors: 

Want to keep this as brief as I can (yes It’s hard for me….) but our daily life consists of beeps and monitors.  The medicine pole on the left has a high pitched ding, like an annoying bird outside the window.  Both monitors on the right are for respiratory and vitals.  The respiratory has a 3 beep pattern like someone hitting D# on an electric keyboard 3 times in a row, than repeats.  While the vitals is a continuous beep that sounds like the “going up” ding on an elevator.   Now, all of these beeps keep repeating until the RN turns them off, Kaleb comes out of the set range, or someone hits the silent button.  The medicine pole also has a sound like the pull chain hitting against the light fixture on the ceiling fan in your room about every 5-10 minutes.  You constantly have a beeping sound in your head.  I’ve started to get use to it, but sad that I understand what beep comes from what piece of equipment.

The monitors are the key to letting the doctors know what is going on with Kaleb.  We also know what most of the numbers mean as well.  You catch yourself staring at the screens just watching the numbers.  Especially during stressful times!  But to keep it short, there are 30 numbers total on three monitors that are all very significant and range from body temperature to heart rate sinus rhythms.  It’s scary to think that we are starting to know what each number means and when one flashes and beeps, we know what to worry about.

Decorations:

As many of you know, we have a frog theme going.  We are known as the froggy room on the CICU wing.  There are a total of 18 frogs in the room.  Little stuffed frog animals would be great gifts that people can send us to decorate the room.  It would be cool to have a bunch of hanging frogs from the surgical light.  I’m sure there is a point of overload, but daddy disagrees. 

Signs and balloons are also fun.  Two RN’s have made signs for Kaleb.  Sally’s sign was the first, and has a cool frog on it.  Not sure if you can see it, but it’s above his bed between the two white poles.  The “small” WRA balloon has been a “big” it with everyone!  We would love to have cards, signs, balloons, etc from our loved ones to use as decorations and to read throughout the day. 

That’s about it on Kaleb’s room.  I haven’t touched too much on our living quarters, but will probably do that later.  I also find writing and sharing these experiences therapeutic for me.  I’m not sure about Jenifer, and I hope I’m not providing too much information.  We have also thanked certain people in a previous post, but by no means are we being partial to anyone.   Every person, family member, friend, and unknown individual that is praying, thinking about, and reading this we thank!  Kaleb is where he is because of all the love everyone has given to him and us. 

I hear a little chirping noise.  Anyone know what that means?.... :)  Don’t even have to look up from screen.  We already know what to tell the RN.

Karl

Kaleb's Room

Good Day and a Little Daily Summary:

I really want to post about living in the CVICU but that will have to be tomorrow.  Currently its 11:30pm and I’m wide awake.  Not sure why because I was very tired this morning.  Jenifer is sleeping on the bed but I’ll have to wake her up at midnight to pump. 

Kaleb had a good day today!!!  The doctors started reducing the medicine that he has been on so recovery is in full swing.  I promised Jenifer that I wouldn’t go into much detail about the medicine’s he’s on, but I will indulge a little.  He’s been on one medicine that has prevented him from moving since his procedure on Tuesday.  They took him off that today and it was nice to have him grasp our hands and open his eyes.  Much needed for mommy and daddy.

Our daily routine consists of pumping throughout the night like any couple with a new born.  It’s just a little different in a CVCICU room.  Around 7:00am surgical rounds begin and we get to listen to what the thoracic surgeons think.  This is typically quick with little input from the parents, but where the overall picture takes place.  Sort of the long turn goals one could say.  About 1-2 hrs later, the cardiologist and intensivist come by and do another round.  This is where we get to have interaction with the cardiologist, intensivits, RN, NP, and fellows.  Typically there are around 5-8 people involved and it’s a teaching atmosphere.  I love it!  The attending (Intensivist) leads and directs the daily goals based on his/her input and those of the fellow, NP, and RN.  The team atmosphere is amazing.  Daily goals are set and we go from there with a possible follow up later in the day.  Day continues as most new born parents, pumping every 2-3 hours, sleeping when we can, and eating.  However, there are many interruptions.  The equipment will beep and the RN is always checking and doing labs. The fellow and attending's check in periodically.  Both our parents will show up and we are only allowed 3 people in the room at one time.  So there’s a little coordination involved.  You blink and it’s been 4 hours.  There are so many things that Jenifer and I have been meaning to do but for some reason, time is not on our side. 

7pm starts the night shift.  This is always a time delay for us…. I think.  Mainly because we eat a little later and when we get back around 7:30-8ish we like to visit with the new RN who has typically re-dressed or made some adjustments to Kaleb.  Its fun, but next thing we know it’s time to take a shower and get ready for bed.   I won’t even begin to discus the shower situation.  I’m thank full that they have community showers (really just and ADA shower in a restroom) for us to use, but architecturally speaking, there were some VE items.  More on that when I get to the living in the CVCICU (cardio vascular credical intensive care unit) post.  After the showers, we typically read the internet and go to bed. 

It’s about 11:50pm now and I could continue writing but I want to post some more pictures of our special boy Kaleb.  So enjoy the following pic’s.   Oh, and if you haven’t figured it out already, Jenifer has not proof read this so I’m sure there are many grammar and spelling errors.   LOL!!!

As I wake Jenifer, Kaleb wakes up as well.  What a precious moment singing to the most beautiful eyes I’ve ever seen!!!  Great moment!

Karl

Holding mom's finger

Grandpa and Aunt Jenna helping take x-rays

Mommy taking a nap with our heterotaxy monkey:  (mimi made it special for us)

   

Cookie bouquet from the Rockbrock Specials Team:  Thanks gals...!!

Rocking floppy froggy hat

Nana and Mimi in the NICU

All of Kaleb's froggy buddies watching over him

Karl sleeping

Small balloon give to us by WRA.  Thanks WRA, or should I say... rooossseee... :)

Sporting another froggy hat....

Thats all for now.  Time to go collect some milk...  whoo oh!

Intervention a SUCCESS, recovery slow and hard

Dr. Nugent was able to put in both stints.  I won’t go into details about how important this was, how risky and dangerous, but note that he saved our baby’s life.  Jenifer and I were so happy.  Sitting in the waiting room for 5 hrs was tough.  Especially every time the door opened.  Dr. G. was the one that gave us the news.  She cracked the door and said it was a success.  Best news we’ve ever heard.  Hugs and kisses went around to all family members, intensivist, and surgeons.  Most emotional high I’ve ever experienced.  I think Jenifer would say the same too.  We had some dinner and then proceeded to see Kaleb.

The next 24hrs would be some of the hardest hours my wife and I have experienced.  When we got back to the room, Kaleb’s heart was in arrhythmia and beating very fast.  For the next 12 hrs, the doctors tried to bring his heart rate down by any measure they could.  At 2 am, they finally got the heart under control, but it soon went out of control again at 6am.  During 7am rounds they gave him another medicine and it calmed him down.  However, they put in so much medicine and fluid that his kidneys were failing and we had to have another surgery that afternoon to put in a drain line.  Again, we went back to the room to wait.  Neither of us ate or drank yesterday.  We just sat by his side, each holding a hand.  Dr. Fuch successfully installed the drain line and Kaleb started to bounce back.  Dr. Nugent suggested installing a makeshift pacemaker to keep Kaleb’s heart in sinus.  They installed that last night after putting in the drain line and he has been stable since then.

Jenifer and I both got some sleep last night.  I got a lot more than she did because I went to another room and they did not wake me up to pump.  The stress and lack of pumping has been a challenge for Jenifer.  She is doing awesome and ounces will start flowing instead of mm.  Kaleb did great overnight and everyone is giving 2 thumbs up this morning.  However, his heart is still in arrhythmia and we’re not sure how long he can stay like this.  They did turn off the pacemaker and he is holding. 

For additional information: Kaleb is heterotaxy, which means his heart is on the opposite side of his body.  The electrical circuits in the heart are not in there normal location and don’t “fire/spark” consistently.  Therefore, he is at risk for arrhythmia (pumping chambers in heart not in sync) after surgery and stressful situations.

This is where we are at the moment.  Both of us are extremely tired and have been on an emotional roller coaster for almost two weeks now.  I can’t believe that we have been here for 10 days.  I’m not wanting to go back to work on Monday.  Hopefully, Kaleb will get his heart rhythm under control and we can start the long journey of gaining weight.   Currently we are in room D3216 (they like to play musical rooms.  This is our 3^rd room since we arrived in the CVICU).  He has all his stuffed animals from home watching over him.  You can send us gifts, stuffed animals, cards, balloons (no latex), etc.  But we are still limiting visitors.  Jenifer and I have to wear gown, mask, and gloves in the room because Kaleb tested positive for the rhino virus (common cold).  It’s fun sleeping in a mask…

We love reading the posts on facebook and on our blog.  Please keep them coming!! We also appreciate everyone who has added Kaleb and us to your prayer groups and churches.  Your prayers and well wishes have both sustained us and been instrumental in Kaleb’s continued fight for life.  We are so grateful to you all!   Both sets of our parents have been here by our sides the entire time!  Jenifer and I can’t thank them enough!  Their willingness to come to the hospital at all hours of the day and night, desire to stay entire nights with Kaleb and us, and display of constant love and support has amazed us.  Our sisters have also gone out of their way to be here and to support Kaleb through prayer, and spreading the word about him to hundreds who are now praying for him-thank you!  We also want to send out a special thank you to our nurses:  Katie, Sally, Justin, Liz, and Leslie for the hard work they’ve put in!  We can’t wait to fill out their Kudo cards, and there are definitely some JD Chippery cookies in store for them. We also want to send a special thank you to Dr. Koch.  He has invested so much time into Kaleb and has become our number 1 go to guy.  Every person in this facilty is great and we thank them all, as well has every person out there that we don't know who is praying for our little one!!

Kaleb has just now settled down and has been in time out for the last couple days, so we have not been able to post.  He’s being a little ornery, just like his parents.  But I hope to add more this afternoon/tomorrow.

As I finish writing this, Kaleb has gone into sinus rhythm (correct heart rhythm).  Yes, Yes….YES,YES,YES!!! And so it continues…

Karl

Mom and Dad with Kaleb, good day!

Daddy changing his first diaper:

Kaleb all snug as a bug

Saying hello

Playing Peek a Boo

It's a Boy!!!! Kaleb Preston Prinz

Kaleb Preston Prinz

Born 8-29-11 at 7:09pm

Weighed 4lbs-10oz and was 17.7in long

Jenifer and I are setting up this blog so that we can communicate with everyone on the day to day life of our little boy.  As many of you know, we found out at our 18 month OB appointment that Kaleb’s heart did not develop correctly.  We visited many facilities and met with multiple surgeons and decided that Children’s Medical Center was where we wanted to be.  Our first diagnosis through fetal echocardiograms was 3 surgeries to re-route the circulation of the heart.  Unfortunately, the fetal echo process is very hard to read in utero.  When Kaleb was transferred to Children’s on Monday night, they did a true echo and found that the heart had more complications than originally diagnosed during the fetal eco’s.  Tuesday was a very tough day for us.  The surgeons and cardiologists did not think that there was a chance to proceed and withdraw was the diagnosis.  There was a blockage that has not developed which as been our little miracle.  Kaleb has a strong will to live, and we have been given a chance to proceed down a wonderful, but hard path.  Because Kaleb was premature, his weight has been the biggest concern and surgery is very tough.  We will be proceeding with an aggressive intervention on Tuesday to keep two ducts open that allow oxygenated blood to the body.   After the intervention, Kaleb will have to gain weight before surgery is considered an option.  Kaleb started feeding, so weight gain looks very promising but could take 3-6 months.   When that time comes, we will have 2-3 surgeries to fix the rest of the heart complications.  Please pray for pulmonary arteries to be developed properly and not occluded.  Pray for a successful intervention (catheterization) on Tuesday!   We will try to post pictures and daily reports of Kaleb and his adventures, as well as ours.  Living in the CICU is very different from the life you hope to have in the first days of life with your newborn, but we are loving every precious minute!

Please see pictures below of our first moments with him.

When he was first given to us...

Mom and dad in NICU

Holding dad's finger

Opening eyes for first time

Showing off his hair:

Chillin in his froggy hat and booties...

Precious moment with mom in OR:

More to come in the following days. 
Karl