Fontan Madness

This is going to be a longgg post, so bare with me.  I was too exhausted to update the blog last night, so this morning I will include all of yesterday and this morning.

Yesterday.

Owen received an amazing video from Batman yesterday morning that we watched about 10 times before leaving for the hospital.  He of course had to wear his batman costume to the hospital.  We arrived at the hospital around 7:15 and went to the surgical floor of the hospital to get checked in and ready for surgery.  Owen spent most of his time in the playroom and when he wasn't in there, he was very upset and uncomfortable with his surroundings.  Kevin was allowed to take Owen back to the OR and stay with him until he was asleep.


We waited in the PICU family waiting area on the 4th floor while he was in surgery. They finally started operating around 10am.  Before they can operate, they need to place all sorts of access lines in Owen.  They placed an iv in Owen's right hand, an ART(arterial) line in his left hand(but had to move it to his right groin because it failed during surgery), and a central line.  Before they closed Owen, they put in pacer wires(used to pace his heart if needed) and 3 chest tubes. Owen was on bypass for 94 minutes and his surgeon kept him open for a while to let him "dry" out before closing him up.  Post-Fontan, you can have issues with drainage and it can keep you in the hospital for a while.

Once Owen was brought back to his room, we met with Dr. A and his nurse Kate and they said he did amazingly well! He was very stable throughout the whole surgery. Last night he had some issues with his heart rate, so he was given morphine and it helped a lot. He spent a majority of the night asking for water when he would stir.  He's also only been waking up for a couple minutes at a time and then will sleep for a while.

Today.

This morning the doctors rounded and decided on doing the following today:
Start Owen on Lasix
Remove his Catheter and his ART line
Start Oral liquids, but restrict them.  He's only allowed about 600ml's of fluid a day plus his meds.
Start with PT/OT
Decrease his Precedex
Get up and moving a little bit

Allowing him liquids has been a great helper, because he can get some much needed relief to his mouth and throat, and also stop asking for water all the time!

The Catheter and ART line were removed around 10 am and PT/OT stopped shortly after that.  Owen must have heard us discussing him sitting up today and he pretty much sat up on his own. (Slowly and grumpily, I might add) He wanted to sit by Kevin so he sat on the edge of the bed next to Owen and Owen pretty much fell asleep sitting up. It's a lot of hard work! When asked if he wanted to sit in the chair with Kevin, he said yes, but as soon as the blanket was pulled of his lap he refused.  We were able to get him back into a laying position and he took a nap for a while.  He woke up begging for Kevin and then tried sitting up/rolling onto his tummy by himself to try to get to him.  We were able to move Owen enough for Kevin to lay next to him in bed for a little bit.

We went for lunch around 12:45 and Owen ended up taking a 2 hour nap! Since morning rounds his Dex has been cut in half and his lasix dose has been doubled.  He played his tablet for about 5 minutes and is now napping contently again.  There's a very high chance Kevin and I will end up sleeping at home tonight.  He's still pretty out of it.

On the way to the hospital

Nananana BATMAN!

Throwing a fit in pre-op

Holding Baby Selah's hand

Baby Selah spent the morning with us! 

Owen's med tree

Renal(kidney) function monitor. 

Mr. Frog got to dress up as Batman and assist.

Stats: top-heart rate, red-blood pressure
blue-pulse ox, white- respiratory rate

PINK TOES!!! (They've NEVER been pink)

MEDS! 

Chest tube collection drains

Owen was a guinea pig for a new surgical product.
It is supposed to help with pressure sores. 

Blue 99 is his pulse ox. It's never been this high!

We were able to give him wet swabs to try to
satiate his want for water.

He refused to give up the swab and fell
asleep with it in his mouth.

Sitting up during PT.

Passed Out.

I can get dressed! 

Fontan Pre-Op Day

Well, I suppose, it's time to get back into the blogging game to keep all of you wonderful prayer/good vibe warriors informed! I'm doing something a little different this time.  I've decided to do a "Day in the life of a heart warrior" post.

We spent the day at American Family Children's hospital for Owen's pre-op appointments and let me tell you, we didn't have a dull moment!

When we arrived, we started by visiting the Learning center where we went over all of the pre-op information(stopping meds, stopping food and drink before surgery, etc.) This was pretty boring, so I have no pictures to share from this part. Owen played with the toys she had in her office and ended up hitting his head under her desk because he was extremely excited when he saw she had a clock toy.  It didn't even phase him.

Playing with the model heart while getting his
BP taken

This is a diagram of Owen's heart
based upon his Cath results.
You can see where they connected/disconnected things
and all the pressures in the different areas of the heart.

Our next stop was in the Cardiology clinic.  There, we met Dr. A's(Owen's new surgeon) NP, Kate, we also met with Dr. A.  Owen had a physical exam to make sure he was healthy enough to have surgery on Wednesday.  They did their regular BP, POX, and height and weight.  They also gave him a thorough once over to make sure there wasn't anything fishy going on.  Owen's new surgeon, Dr. A said Owen is a great candidate for the Fontan. The only thing that may be an issue recovering, is the way his heart relaxes after the squeeze. We won't know until after surgery though.  











After Cardiology clinic, we went to get a blood draw and chest xray. Unfortunately, I was unable to get a picture of the chest xray because I wasn't allowed in the room due to being pregnant. I did get some pictures from his blood draw though! For Owen's blood draw, we had a child life specialist come help us, he also had special cream on his arm so his blood draw didn't hurt! He did so well and didn't scream or cry!

After his chest xray and blood draws, We walked over to the adult Cardio and Vascular clinic for a vascular ultrasound.  This isn't a normal part of their pre-op day, we had to do it because Owen is a new patient.  Since he hasn't had surgery at their facility, they need to see which veins will work best for the bypass cannulas, or ECMO if, god forbid, they'd need to go that route. They checked the veins in his neck and in his groin.  I'm starting to think those sound waves are mighty soothing for Owen, because he started falling asleep during his U/S! 

Inside the phone booth at AFCH.
He kept saying "It's Dr. Who's Tardis!"

After his ultrasound, we stopped for lunch at the main hospital cafeteria. Owen picked steamed carrots, french fries, and a chicken quesadilla for lunch. They have a pretty large selection in their cafeteria! After lunch we headed back to AFCH to get a tour of the PICU.  The day of Owen's surgery, we will wait in a small family waiting room in the PICU and receive updates on a pager. The cardiac rooms are on the far end of the PICU because it's a little more isolated back there, and that's preferable for these critical kiddos. There are also 5 parent sleep rooms we are able to check out for naps or to sleep in overnight.  The couch in Owen's room folds down into a single bed, so we won't both be able to sleep in his room while he's there.  Once Kevin goes back to work next Monday, he'll be sleeping at home anyways. Owen's room will have a small bathroom too, no shower, but there is one in the parent sleep room area to use.



         

After our tour we headed home and Owen and I took a nap! Keep an eye out on here and our facebook page over the next few days.  I will post the address for the hospital and the number for the gift shop in case anyone wants to send Owen anything to cheer him up!  Thank you for being such wonderful prayer warriors! 

3 years

Today is the first day of CHD awareness week.

3 years ago, we made the journey to Children's Hospital of Wisconsin​ where I had a fetal echocardiogram done.  They brought us to a conference room and informed us that our unborn baby has Tricuspid Atresia with a Transposition of the Great Arteries and Coarchtation of the Aortic Arch.  Although we were terrified, we finally had answers after weeks of waiting for this appointment. I know this sounds like mumbo jumbo medical jargon to some of you, so I will explain.

Tricuspid atresia is the absence of the tricuspid valve.  That valve allows blood flow between the right ventricle and the right atrium. There is no blood flowing between those two chambers, causing his right ventricle to be too small to function.  In order to compensate, Owen's heart created two large holes, one between his two ventricles and one between his two atriums. This makes him a single ventricle patient.

Transposition of the great arteries is when the aorta and the pulmonary artery are switched. The pulmonary artery takes the de-oxygenated blood to the lungs to oxygenate it and returns it to the heart through the pulmonary veins.  The Aorta then takes the oxygenated blood out to the body. For Owen, all this blood was mixing in his heart(de-oxygenated and oxygenated) and his body/organs do not get enough oxygen.

Coarch of the Aortic Arch means his aortic arch is too narrow for blood to pass through.  They placed a patch in his aortic arch during his first open heart surgeries to widen it enough for blood to pass through.

In order to create blood flow through the body, they do a series of surgeries called The Norwood, The Glenn, and The Fontan.  These are temporary fixes and usually the Fontan needs to be revised in teen-adult years, if these kids don't receive heart transplants first.  Will the Fontan be Owen's last surgery? Most likely not, many things could happen in the years to come, he could go into heart failure and need a transplant, he could need a fenestration closed, he could need a pacemaker, who knows? There are all things that stay in the back of our mind.  The Fontan seems like it will be the end, but it never really ends for our kids.  They go through life using half their heart which causes many issues down the road such as poor weight gain, poor circulation, in some cases stroke or heart attack, to name a few.

What does this mean for daily life? On a daily basis we administer meds to Owen.  He receives baby aspirin as a anti coag, Enalapril to help regulate blood pressure and improve heart function, and he drinks Pediasure to help him gain weight.  We monitor him for signs of heart failure constantly (excessive sweating, blue lips/fingers/toes, excessive breathing, tiring out faster than normal).  We need to be extremely careful when out and about so he isn't exposed to someone who is sick.  That often means we need to cancel things because someone has or is sick.  It's a risk we can't take with Owen.  Even a simple cold or viral infection could cause him to be hospitalized in an ICU fighting for his life.  We go to the pediatrician's office at least once a month to make sure that the cough or runny nose he woke up with isn't something worse. We limit his public contact in cold and flu season, because everything goes around(And this year has be particularly scary) and he usually ends up catching it.  It's scary how easily he catches something from others.  We spend a lot of time at home, but that's okay because I have Owen here in my arms.

Some people may think we are overprotective or overreacting when it comes to germs and Owen, but honestly I'd rather be seen as overprotective than be pitied because my child passed away from a viral infection he caught.

So this brings me to my challenge for you for Heart Week/Month.  I want you to search for information on the internet on CHD's, I want you to educate yourself so you know what to expect if it ever happens to you, because honestly, the day before we received Owen's diagnosis, I wasn't a heart parent yet, I was a regular parent just like you.  Your world can be flipped around by one sentence and why not be ready for it, why not be prepared, know the facts, learn that it's not a definite death sentence, know your options.  If you are having trouble finding information, please ask me, I can provide websites. I want the whole world to know the facts.

Owen is 2 today!!

My little baby is a big boy now! Here's a video of the past two years with our little man. :)

I in no way own the songs in this video and I am not claiming ownership.

Music Credits::
All of Me - Matt Hammitt
Worn - Tenth Avenue North
You are my Treasure - Matt Hammitt

Our Crazy Wonderful Life.

I suppose I should write for all our wonderful readers since I haven't updated in quite a while. We have been so busy!   The last time I wrote was the day after Owen's first birthday! Since then we have had a lot go on. 

After Owen's birthday he was struggling with a cold, ear infection, and double eye infection that resulted in Owen and I having our first ride in an ambulance down to Children's Hospital, where we spent 2 days.  In those two days, Owen refused to let Kevin put him down, so being the wonderful daddy he is, he endured 48ish hours of holding our sweet 19 pound miracle baby.  It was tough, because it was only 2 days before Owen's first birthday party! The first day we were at the hospital we struggled trying to decide what to do about the beautiful party we had scheduled.  We ended up going about everything as if we were still having the party.  I ended up doing  a lot of organizing and delegating to our close friends and family while in Milwaukee to make sure that the last details were ready.  

We went home the next day(Friday) and decided to still have Owen's birthday party since we did pay to rent out a room at our local community center.  It turned out to be a beautiful day with our close friend's and family.  Owen's physical therapist, Joe, even brought his family along! The love for our sweet, little boy was definitely apparent.  

Since then we have been working on getting Owen's Eczema under control, it has been quite stubborn! Since his birthday party, Owen has figured out how to climb up almost every piece of furniture in our living room.  He is definitely keeping us on our toes! We have been enjoying the warmer weather too! We purchased a sandbox/table for Owen to play with this summer and a swimming pool! We can't wait for it to warm up even more so Owen can splash around in his little pool. :) 

Owen's First Birthday

I sit here before my laptop trying to think of what to write.  The past few days I have done a lot of reflecting on the past year, okay, the past year and 9 months.  Kevin and I became pregnant right out of the gate of marriage (I guess that's the best way to refer to it).  We weren't really trying, but not preventing and we surely didn't expect to become pregnant right away.  All of that aside, we were excited for the chance to bring a sweet little baby into this world and to nurture and raise our child to the best of our abilities.

I think about the people we were before Owen was born and realize we have grown so much in a short period of time.  We went from being newlyweds that a lot of people wondered "How did they come together" to a complete unit.  A friend of mine said it perfectly today.  Kevin and I have grown into a unit, we move together and are synchronized beyond belief.  With a child like Owen, that is a requirement.

It really is a case of make it or break it when you have a child with a congenital heart defect(or any other serious health issues).  There are many parents that end up splitting up because of the added stress of having a special needs child, but I can honestly say it has brought Kevin and I together.  I feel like this journey we have been on with our sweet and sassy Owen has strengthened our marriage and we are prepared to take anything thrown our way.

Being able to reach the milestone of Owen's very first birthday has really shown us how blessed we are.  Before Owen was even born, we were told by doctors "If you make it through the first year, it is smooth sailing."  This past year has been the most difficult year of our lives.  Facing two open heart surgeries, three hospitalizations, numerous visits/drives down to Children's hospital for treatments, multiple echos, hundreds of thousands, if not a million dollars worth of medical treatment/care, hundreds of baby aspirin tablets, constant recording of daily intakes and weight recordings, Owen refusing to drink bottles while awake, Owen flat out refusing to take bottles, trying to find creative ways to get Owen to drink bottles to maintain proper fluids, and everything in between.  We have been trained in CPR and how to spot heart failure without machines, as well as how to draw up medications and make higher calorie formula concoctions. We are super parents for sure.

Owen has come so far in the past year, you wouldn't even notice he has only half a heart!  He is the most amazing child I have ever encountered, and yes, that could be a bias statement, if you didn't think it also!  Our sweet little man is finally 1, the age I have been counting down to in my head for months.  On difficult days I would think and repeat to myself "only___ months until he is 1".  It feels like we have been running a year long marathon and have finally reached the finish line.  We are loving this less stressful finish line. I just can't believe it. Owen is 1.  Finally.  I can't believe the amazing little boy our baby is turning out to be.

Watch out world, because Owen is going to grab you by the horns.

It's hard to believe that our little smurfy looking guy was once so tiny!

Coming close.

It's coming everyone.  Owen turns 1 on Tuesday.  I know I haven't updated in a while, so I figured it is about time to do so.  We have been very busy the past few months.  Owen has been mobile and is crawling EVERYWHERE and getting into everything!

 In mid-March, Kevin and I took our first trip away from Owen.  Owen spent a few days with his Aunt Rebekah and Uncle David (his godparents).  He absolutely loves them and their furry animals(they have a cat and a dog, both of which he was calling Bear while he was there).  Kevin and I drove to Nashville and stayed at the Opryland Resort.  It was absolutely gorgeous and we had a nice relaxing vacation. Plus escaping the snow and cold weather was nice! It was 75 degrees in Nashville when we were there! 

When we came home, I caught a cold that has been kicking my butt and I've been trying my hardest not to give it to Owen, but of course, he ended up catching it.  Last Friday I took him in to the pediatrician and she told me to just let it run it's course and there isn't much we can do for it.  Saturday we went to my grandmother's house for Owen's FIRST Easter! We had such a fun time and my aunt Sue even planned an "easter egg hunt" for Owen (she filled easter eggs with coins and m&m's and scattered them around the floor).  It was so cute to watch him crawl up and shake or throw the eggs.  

This coming weekend we have two more Easter celebrations.  Saturday we are going to Kevin's grandmother's house and Sunday we have the huge Krajnik celebration at our local Vets club. Sunday also marks the day that I was induced with Owen and spent the following 39 hours waiting and waiting (in agony of course) for him to make his grand entrance.  

All this being said, I would like to touch on the subject of Congenital Heart Defects.  Recently, Parents Magazine has published an article(I think it was only on their website) about CHD's, it's entitled "Mending Broken Hearts".  The article was informative until you reached the section called "Preventing Heart Defects." I am sorry, but everything they say in that section is completely inaccurate. I know many, many, MANY heart moms that took prenatal vitamins and followed everything by the book (myself included) and still ended up with a heart baby.  For the article to state that taking prenatals can prevent heart defects is a terrible lie.  Here's the scoop.  In most cases, there is no definite answer where or how the CHD came about.  There is research going on trying to figure that out, but until then there is no way you can claim that heart defects can be prevented by taking a simple multivitamin.  

As a heart mom, I am constantly under the microscope and asked things like "Is it a genetic defect?" or "What did you do wrong?".  I didn't do anything wrong, and I have to tell myself that every day because I feel guilty and I will probably feel guilty for the rest of my life.  When you find out you are having a child with CHD, it is earth shattering, I've also heard people say you go through stages much like the stages of grief.  I completely agree.  The stages are much like the stages of grief.  You're grieving what your child will not be able to do and what they will face every day, every minute, every second for the rest of their life.  Since we found out about Owen's heart defects there have been times where I was in such a dark place that I didn't want to do anything but lay in bed crying and feeling Owen kick.  Now I am not trying to scare everyone, I'm just sharing the truth of what goes on "behind the scenes" of having a child with a heart defect.  I must say in a years time, we have grown so much and been through so much.  We have had major accomplishments, terrible setbacks, and everything in between, but we were able to get through it as a family.  Owen is our whole world and life would never be the same without him. 

Despite having had two open heart surgeries, a few hospital stays, and a cardiac cath in the past year, we are excited to say Owen's physical therapist, Joe, recently told us that Owen's development is right on track and he is testing at an 11 month old level! Also, I purchased our LAST can of formula last week. :)  (I can't wait to say this about diapers!)  And now for a few pictures! 

(Also notice how great his skin looks! We saw the Dermatologist and he was diagnosed with Eczema and we started a regimen of creams/ointments and it cleared right up!)

He normally enjoys this! We managed to get a set of awesome pictures to torment him with when he is older! :)

Pictures!

Here are a few pictures that I took today!! Enjoy!

 

 

Little Reid!

Today's heart warrior is Reid! He is so adorable and only 4 days older than Owen!! He has the same heart defects as Owen and was diagnosed at 7 months old! Absolutely a little miracle! Check out his facebook page for pictures and his whole story! Trust me, he is very very cute so the pictures are worth it!

http://www.facebook.com/MyMiracleBabyReidLandon?fref=ts

Tiny SuperHeroes

I'm so excited to write this blog. The past week we have had a huge abundance of likes on our Owen's Cloud Facebook page, www.facebook.com/owenscloud, and I have had several new "fans" send us private messages one of which I am going to share the contents with you now!

We were contacted by a woman, Robyn, who is part of an organization called Tiny SuperHeroes. They make personalized capes for kids with health issues to help empower them! She offered to make one for Owen and to feature his story on their blog! I also wanted to mention that this month they have a special sale going on where if you buy one cape from their online store, they are able to give a cape to a special little boy or girl! These capes are so adorable and they even make them for dogs. We are thinking of purchasing one for our beloved Bear.

Here is the link to their blog:  http://tinysuperheroes.blogspot.com/

And here is the link for their online store: https://www.zaarly.com/tinysuperheroes

Consider donating to this AMAZING cause! :)

Congenital Heart Defect Awareness Month!

Today is February 1st, I'm sure you all know that. The month of February is Congenital Heart Defect Awareness month.  So all month on our Facebook page www.facebook.com/owenscloud, we are sharing different heart warriors and their pages/blogs.  Feel free to show them some love this month!!

Our little warrior today is Carson. Sweet Carson was born in November with Hypoplastic Left Heart Syndrome. Sadly he joined his fellow heart warrior angels last Tuesday.  Send them some love in this difficult time.

http://www.facebook.com/PrayersForCarson?fref=ts

Much needed photobomb! :)

Well here is the mother of all photobombs! I hope you thoroughly enjoy all these fun pictures! I finally figured out how to get the pictures from my phone to the computer. :) Don't worry I kept the pictures with Owen's "wee-wee" exposed for ourselves! 

Watching TV

Going for Bear's Toy

 

 

 

 

 

 

 

 

 

First time w/ a sippy cup

 

 

Painted this for Owen's room

 

Sitting w/ Grandpa

Just chilling

 

 

 

 

 

 

 

 

 

 

 

 

 

Doggy sitting

Cali doesn't know how to sit in the car. Yes, her butt is on Owen's carseat.

Getting ready to crawl!

 

Bodyslam

 

Licking Mommy's kindle

 

 

Can't forget one of our silly Bear!

 

Had to share, this porkchop looks like a heart!

First time he fell asleep in the high chair

Playing in the bin!

 

 

 

 

Conquered!

 

Back view

Front view

 

 

 

 

 

 

Scrambled eggs and toast for breakfast