Heart Surgery: Take Two

So, tomorrow is the day for our littlest man's second open heart surgery.  How does a parent prepare for these moments?

We spent all day with our boy.  It was a simple Sunday for all of us.  He was pretty darn comfortable all day with a few episodes of increased work of breathing.

Here are some of the pics from recent days:

Cuddling with his monkey!

Snoozing away the night before surgery.

My brother and I have matching monkeys that we like to cuddle.

The Worst of Times

Disclaimer:  I have promised my friends that I would warn you at the beginning if tears are likely....So, be ready for tears!!  And, don't say you weren't warned.

William Howard....William Howard!!  (as Carson would say!)
You have taken years off of my life this weekend.  We have been living the craziest 48 hours of our lives since 5:50 on Saturday evening.

Early this past week!!!  Resting so comfortably!!

 

One of my fave pics....also, early this past week!!

I will give you all a little rundown what has transpired for our dear sweet baby boy!  We received a phone call from Monica, Will's nurse, on Saturday evening that he was going for an emergent CT scan of the head after he had an episode of unresponsiveness.   The doctors wanted to make sure his brain function was normal.  So, we rushed to Children's Mercy.  If you saw an Expedition racing on I-70 on Saturday, it was us flying down the highway with flashers on the whole time!  We made it back to his bedside in no time.  They tried to get the CT but were not able to do so.  Will was moving too much--a good sign if you ask me! 

But, the period of unresponsiveness was just the beginning.  Later that night, he was working so hard to breathe and breathing so fast that I was SCARED.  I am an ER nurse at heart--it has always been my love, not that I don't love what I do, but I love the adrenaline rush!  I was holding William as he was breathing 150 times per minute and his heart was racing over 200 beats per minute.  His face showed pure panic.  I have never seen such retraction in a child, and it was MY baby!  The ICU doc immediately came into Will's room and decided to intubate him for rest.  I have never thought that I would beg for my boy to be on a ventilator.  But, it was definitely needed.  So, Chris and I stood by while he was intubated and placed back on the ventilator.  I pray to God that no one else ever experiences this level of helplessness.  He was then sedated and paralyzed to get the rest that he so badly needed. 

And, he has had a few ups and downs since.  Poor IV access, FEVERS, worsening chest x-rays, not tolerating breathing treatments, etc.  Right now, William is on the ventilator with multiple meds dripping to keep his heart function up, keep him paralyzed and sedated, antibiotics for his fevers, TPN for nutrition.  They were able to complete the CT scan yesterday morning, but it shows a small abnormality in the right frontal lobe.  We have no idea what it means or when the abnormality occurred.  It likely happened WAY before Saturday but when no one knows.  He has an MRI scheduled for tomorrow morning.  They were supposed to do it this morning, but William could not maintain his oxygen levels and had limited IV access.  So, they placed another central line and increased his vent settings--much better this afternoon and evening.  MRI is scheduled tomorrow morning.  But, in actuality, the brain function seemed completely appropriate before and after his episode of unresponsiveness.  And, really it all makes no difference to us---would we even know if we hadn't done the CT???

Watching this all happen has been eye opening for sure.  We thought the worst days were those surrounding heart surgery, but this downward fall this weekend has been the WORST days of William's young life.  He truly is clinging to life while waiting for his next open heart surgery.  And, we have to sit idle and wait.  His cardiac surgeon is on vacation until Wednesday morning.  We are anxiously awaiting Dr. O'Brien's return.  William is thinking, "You all told me to make it 8 weeks and you would get me fixed.  8 weeks is up.  And, now, we are on week number 9.  Get me fixed, already!!!"

Daddy whispering to his boy!!

Mommy's touch makes it all better, right???

And, if not Mommy's touch, Daddy's kiss is surely the best medicine!!!

Chris and I are so blessed to have the support that we have in our parents, siblings, cousins, and friends.  We really couldn't do this without their love and support.  Thanks so much for being there for us.

The Best of Times

Birthdays in our family are never a huge deal, but this year they have been pushed to the side.  Not because we didn't want to recognize a birthday but more out of WHEN do you celebrate a birthday when your baby is hospitalized.  Planning ahead is not possible with a baby in the NICU, a baby who is going to have/has had open heart surgery, a baby who is on infection precautions, and the list goes on and on!!

So, we recently decided on Carson's 3rd birthday, July 28th to celebrate Mackenzie's 6th birthday which was May 15th and Carson's together!!  We had a little pool party at my mom and dad's and just hung out as an entire family!  It was definitely what we needed to do!  Both kids received gifts and cakes.  So, despite all the stress in our lives--WE CAN STILL CELEBRATE THE BEST OF TIMES. 

Here is an array of pics from the party!  Enjoy!

Awfully proud of her "Hawaii" cake courtesy of Aunt Amanda!!!

The cousins were ready already!!!

Oh man...I have to do it again!  She blew them out and Carson missed it!  She had a redo!!

Love this pic of Garrett!!!

So glad that the other Cunninghams were able to celebrate with us!

Tractor cake courtesy of Aunt Amanda!!

 

Cheese!!!

Look at all those boy cousins telling Carson how to do it!!

The pedal tractor!  It was given to us by a couple at a local equipment store.  They saw us looking at one, and they had an old one in their basement.  They told us that they were waiting to find the right little boy to have it.  Well, as you all know, Carson can get whatever he wants from whomever he wants with a little smile.  So, we picked it up around Christmas and have kept it hidden at Grandma Joyce's and Papa Jerry's.  And, Papa Jerry got it ready for Carson's birthday! 

He was so excited to get to pulling.  Can't wait to find out what will get put in the back of the trailer!!

Serious work! 

"Now, I can be like Farmer John except mine is red!"

And, last but not least....caught Grandma Sue in a pic for once!!!

Lemons and Lemonade

I am sure you have all heard the phrase...
"When life throws you lemons, make Lemonade."  We are DONE with the lemonade at this point.

Needless to say, William has had more lemons thrown his direction in the past week.  Will was admitted to the hospital on July 5th and has remained here since.  Initially, he was to have a cardiac cath and stay 24 hours.  But, the cath was a no go.  And, he was showing some signs of worsening respiratory distress as a result of pulmonary edema.  The site of previous surgery is TOO small and he is holding too much in his lungs rather than pumping it through his body.  Think of a funnel--the initial surgery of his heart attached the confluence of his pulmonary veins to his left atrium.  Where the attachment was made is acting kind of like a funnel rather than a canal--small opening creating backflow into the confluence and pulmonary veins and back into his lungs.

Since they could not access any vessel with his previous cath attempt, a decision was made to proceed with a different method.  This is called a transhepatic cardiac cath.  In essence, the isolated a hepatic vein in the liver and then proceed to thread the cath to the heart through the major vessels.  Twenty minutes before the procedure when we were signing consent, the cardiologist tells us that they only perform 2-3 of these each year at Children's Mercy.  This is because it is so rare that they cannot access a femoral or jugular vein.  LEMON!!!  This past week, he had a transhepatic cath with an attempt at balloon angioplasty.  But, here comes another lemon..they were able to achieve access through the liver but could not get into his repaired defect with a balloon.  So, they got pictures but not complete pics and were not able to give him any relief by dilating the surgical site or any pulmonary veins.  The biggest risk of a cardiac cath thru the liver is bleeding....and (additional lemon) William developed bleeding during the procedure requiring a second blood transfusion (the first one of the day was at the beginning of his cath due to severe anemia).  Bleeding was controlled but addional fluid is not the best for his already wet lungs! After the procedure, he was admitted to the PICU and has been here since! 

Love from the daddy after surgery!

On the first night in the PICU, I slept on the "couch" in his room and Chris slept in the PICU waiting room chairs.  It is debatable who had the worst sleeping arrangments....comfort is lacking in this 5 Star Resort!!!  In the middle of the night, I was woken up by a resident asking for my signature for a blood transfusion as William's blood counts had dropped from 10 to 6.  So, LEMON!!  He was given yet another unit of blood.  This only complicated his already wet lungs....but, what else could you do?  After this bleeding, his blood counts are stable and the bleeding was controlled without any intervention in the liver...THANK GOD! 

But, now, we are playing catch up with his pulmonary edema--his lungs are so wet!  And, because they are so wet, his heart is working that much harder.  He is throwing extra beats and needing more meds to diurese (pull the fluid off his lungs).  So, LEMONS keep falling from the sky for Prince William and his parents.  He remains in ICU on the ventilator. 

After surgery.

His precious feet---and his Priceless tag (and his blood bank band)

See his puffy little self--can't hardly open those eyes...BUT, look at his pretty scar from his last surgery.  Doesn't it look great?

It is so hard to see your baby who you finally had time to bond with unable to respond or interact with you.  We get rare peeps with the eyes--but his little face is so puffy that he can barely open them!  Last week, Chris and I had our first out right giggles from Will..and now we wait for them to return.  In fact, last week, one of his nurses on the floor let me have more floor time with him rather than hook him up to meds and feeds because William was so happy!  Heartbreaking to see him in the bed with the ET tube in place!  But, we are making LEMONADE--and dancing a jig because he is finally peeing all the extra fluid out!  So, maybe our LEMONADE is coming soon!  We want him better when they extubate, but it is so hard being back in ICU after being at home and on the floor where we could interact with him and where visitors could see him (and visit us!).

The giggles during our playtime on the floor!!

Definitely looks the part of an Irish baby, huh??

Dear William....

Disclaimer:
This is likely going to make you cry.  But, remember that part of the blogging process is to be therapeutic.  We live the Crazy Life of the Cunninghams and need to vent/reveal our thoughts and feelings at times.

Dear William,
This is one of the hardest letters I have ever written.  I see you sleeping so peacefully in the bed across the room from me, yet my heart breaks for you.  I have never seen such strength in such a small package.  You are the rock that keeps us going.  Seeing you fight so hard to breathe day in and day out makes me persevere.  I am so proud to be your mommy!

From the day you were born, you have shown us how you beat to your own drum.  Please, NEVER (Never, Ever as Carson would say) forget that you have always been an individual.  And, you will do things on your time and own accord.  We love this about you.  You stump the doctors daily!  Remember, throughout life, that you have stumped and puzzled the most brilliant minds, so no one can hold you back!  You are just that AMAZING!  We have lived in the hospital for 7 out of your precious 9 weeks of life...and, yet you continue to be a calm, mellow baby.  My hope for you is that this calmness will continue throughout your life.  Things may come and go, but your calm demeanor will take you far.  You have been through so many ups and downs and continue to be such a sweet baby. 

Next week, you will have yet another procedure.  Each procedure breaks our hearts.  No baby should have to go through open heart surgery once, let alone twice.  No baby should have to endure multiple cardiac caths, yet you will have another one next week.  And, no baby should live at the hospital.  But, you are.  We are so thankful for such an amazing hospital so close to home.  But, it is not home.  This road has a destination, we promise.  We are waiting in the hospital for you to be the strongest you can before we can proceed with your next surgery.

There have been times in the last 9 weeks that you have struggled and times you have soared!  These times will continue throughout life.  We just hope and pray that your struggles will be done in your first months of life....you have definitely earned a break in the future!!  Remember, that your heart was broken but not your spirit.  Please, continue to have the feisty red-headed spirit.  Just, please, remember to breathe in and out (and, yes, we have to sometimes remind you to breathe).  No holding your breath when struggles come up.....you are a tough cookie who can do anything.  Because, as we have said before, "Heart surgery, that was EASY!"  And, if heart surgery was EASY...so will life!!!

We love you and your siblings more than anything else in this world.  And, we cannot wait for you to be HOME with us.  But, we will be by your side everyday until you come HOME!

Love,

Mommy (and Daddy, too!)

All Stars

In honor of the All Star Game this week here in KC, I thought I would post some pics of the ALL STARS in my life.  So, here goes with a picture parade.

One of the only pics in recent months of just Chris and Me!!!  Kenzie is a great photographer!

Strike a pose!!!  Not sure if she's walking like an Egyptian.  Or, if he's growling like a dinosaur....they are just goofy.  And, it feels so normal to be with them when they are acting GOOFY.

Another pose!

Scared of this monster, aren't ya??

At Crown Center....too much fun to pass up when we walked by!

A new inning....position changes throughout the lineup.

I love all the pics of the three kiddos together!!

We knew what a great big sister Mackenzie was to Carson but did not realize how much she would love and cherish William!!!

"Whew, mom's finally done with the parade of pictures.  Aren't we a good looking family?"

All of Me

To our blog followers:
We were listening to the radio on our way back to Children's Mercy this afternoon.  And, it hit us like a hammer hitting a nail how hard it is for William to be just a little boy.  We heard the following song on the radio:

If any of you listen to KLOVE, you have heard the story of Matt Hammitt of Sanctus Real and his little boy with a congenital heart defect.  They found out that Bowen was going to be born with a "broken" heart while in utero.  Here's a link to their website:  http://bowensheart.com/
The song was written for Baby Bowen.  Well, you can hear how it goes.  And, then you can see us living this life right now with our Prince William.  The condition Bowen and William have are not the same but the thoughts of us as parents are much the same.

We did not know about William's defect before he was born or anything about how it all would play out.  But, we are learning more each day.  His condition is RARE....TAPVR.  There are only a "handful" repaired every year at Children's Mercy.  And, the cardiac surgeon has never had to repeat a repair UNTIL William.  We are currently in Children's Mercy after a recent failed cardiac cath.  His work of breathing is increased and need for oxygen is present--never there since before surgery.  We are not so patiently waiting to meet with Dr. O'Brien (his surgeon) to determine when William's next open heart surgery is to repair his narrowed confluence between the pulmonary veins and left atrium.  Such a hard wait to see your baby back in a hospital bed, seeing your other kiddos back at their grandparents' houses rather than your own house, and spending yet another Saturday night in the hospital.

Some recent pics!!!

One of our days at home....all 3 kiddos in OUR bed!!

Happy 4th of July!!  (This shirt was worn by Mackenzie on her first 4th and a matching one was worn by Carson (who was almost 1 at the time) at his first 4th!!!

"Are you serious, daddy?  I am here again, and I have an IV in my head again!!!"

Total peace this afternoon in mommy's arms!!