Where There's a Will....

AWESOME, AMAZING, HUMBLING, OVERWHELMING, ETC!!!!

All of these words describe how the spaghetti dinner and auction benefit that was held for William went.  There are no words to express how grateful and thankful our family is for the love and support expressed by our friends and family in planning and executing the EVENT. 

To those who were there and donated foods, desserts, auction/raffle items, worked in the kitchen/auction table, etc....THANK YOU.

For some reason....BUSY AND OVERWHELMED, maybe.....I have only one picture of the EVENT.  IF you have some, send them to me...and I will add them to this blog.

BUT, THIS PICTURE SPEAKS VOLUMES!!!!

$21,000 RAISED FOR WILLIAM!!!!

And, after opening another statement from the hospital....ANOTHER $797,000 billed to our insurance...THE BENEFIT FUND WILL BE PUT TO GREAT USE!!!

 

And, I have a few pics from the NEXT DAY...and they, too, speak volumes about how the great the benefit dinner was for our family.

A tuckered beauty!!!

 

Two peas in a pod...or the bed as in this case. 

 

 

Post-Surgery, Take Two Update......

Here are some pic details of the past 2 weeks--will try to give an overview of the dates and what else was going on for William.  This post is LONG--SORRY....it's been a long 2 weeks!!!

2 days after surgery--open chest.  They leave the chest open to allow for swelling and pressure changes.  Definitely hard to see your baby on the bed looking at you.  And, as you all can tell, he is always WIDE eyed and alert!!!

The next day, August 16th.....CHEST CLOSED!  They used A LOT of anesthesia for chest closure--so, he actually slept with his eyes closed.

Another wide eyed view of the boy---DRESSING OFF!

Whatcha think about the zipper??

 

Tube free---EXTUBATED on August 21, 2012.  YAY!!

Mommy won the fight with daddy to hold first.  First time in mommy's arms in over 2 weeks.  A long time coming!!

Wow--"I can breath on my own."  Just a little high flow nasal cannula. 

This didn't last long.  Will's respiratory rate steadily increased throughout the night.  And, then he ended up going on non-invasive BIPAP support.  Hard to see that your baby is still working to breathe after 2 open heart surgeries.  But, the optimist in you says, "TIME, TIME, TIME."  Right before surgery, William experienced a hemorrhage in the right upper lobe of his lungs.  So, his work of breathing was going to be more than the average cardiac kiddo.  The hemorrhage was a result of too much edema in his lungs.  With knowing about the hemorrhage and the lung condition pre-operatively a need for extra support was not too unexpected.

BIPAP....and, his eyes remain wide open!  BIPAP and the mask are not his friends!  He absolutely hated the mask on his face.  Can you blame him?  Claustrophobia at the worst, if you ask me!!

4 hour BIPAP break.  Originally, he was doing 4 hours on BIPAP and 4 hours off BIPAP.  Then, it went to 6 hours on with 3 hours off.  Then, on all day except 3 breaks of 2 hours each....CUDDLE TIME ONLY ALLOWED DURING THOSE BREAKS!!  This has been really hard on the mom and dad.  It was over a week before surgery when he was intubated for distress and then another 8 days after when he was extubated.  But, once again, we had to remind ourselves....TIME, TIME, TIME!

 

 

 

With all the great things that have happened for William since surgery, there was bound to be a few bumps in the road.  Bipap and needing it for a few days (or 6) was a bump in the road.  Then, having the cardiac surgeon walk in with a somber face to give you the echo report on William.  His post-operative echo of his heart was completed on Friday, and there were some concerns!  YUCK!  His echo showed that the opening of the confluence and left atrium is wide open as it should be.  But, the pulmonary veins are showing some signs of restriction.  So, another cardiac cath is likely on the agenda soon.  Hard news to take.  His defect is rare and complications from it are even more rare.  As, Chris has said many times....William is a RARE BIRD!!

 

 

After some time to process the news, the mom and dad needed some ALONE time with the boy.  So, here are the pics from our moments.

Mommy's next time holding a boy---Daddy went first though.  Well deserved holding time for Daddy, 3 weeks since the last cuddle time for daddy and son.

GIGGLES!!  Best thing for the mommy and daddy to see!!!

Pure love!!

Watching the daddy despite being in mommy's arms.

 

 

And, then we got rid of BIPAP completely. William would fight the whole time he was on BIPAP that it might have been counterproductive. So, they let him have more freedom! And, William was ready to roll with it. Check out the little boy in the big swing!! Great to see him do baby things...everyone would walk by and Will would pop his eyes open and follow them down the hall until they were out of view. Funny taking time to explain to staff that hasn't met William that is not an exceptional newborn with his alertness but rather a 3 1/2 month old DOING BABY THINGS!!!

 

 

Cuddle time with mommy this morning.  See the skinny baby--hard to see how SKINNY he is.  Now that he is edema free, he looks SKINNY!  The nurses all love William so much.  See the KU basketball on his cheek.  His nurse, Garrett, who loves MU sacrificed for Will's sake.  We like to think he came across from the dark side to the light!!!  But, Will is showing his Jayhawk spirit!!  And, Baby Jay even resides with Will in the warmer!!

So, here is an updated pic from just a few minutes ago.  He was intubated today for his CT scan of his chest.  The cardiologists, cardiac surgeon, and radiologists decided that a CT angiogram would give the best images with the least intervention.  And, as we all remember...cardiac caths are not easy for William.  So....the waiting game continues. 

 

Chris and I will have a meeting with Will's cardiologist and the cardiac surgeon tomorrow afternoon to discuss all of the findings. 

Heart Surgery: TAKE TWO, DONE!!

On Monday, August 13th, William had his second open heart surgery.  This surgery was 10 weeks from the day of his first surgery.  And, it was completed in the nick of time for poor Will.  Read the posts from the week before surgery and you will see why.

William's surgery went better than expected.  Praise God!  His confluence was extremely narrowed with significant scar tissue causing the problem.  So, Dr. O'Brien had to clean out the scar tissue.  His confluence went from 3mm opening to 8-9mm opening.  And, the pressures in his heart dramatically decreased from 26 to 8.  And, the best news was that his pulmonary veins are small but not stenotic.  So, no surgery was needed to fix them.  All in all, his surgery was great.  No one really knows why he built up scar tissue so fast.  But, we are all praying that it doesn't happen EVER again.

Will remains on the ventilator.  His lungs had so much fluid build up that needs to clear.  Plus, he has had some other respiratory issues.  Due to the fluid build up, he suffered a hemorrhage in the right upper lobe causing THICK bloody secretions.  They are taking a lot of work to clear up.  Each day is a step in the right direction.  And, after chest closure, he suffered a small pneumothorax which improved almost immediately.  So, in other words, the weaning from the ventilator is a slow process.  William is directing his course.  And, that is perfectly okay with mommy and daddy.  Don't most infants direct the daily course in their houses?

His hospital stay is now been greater than 6 weeks--longer than even his first stay!  And, we still have weeks ahead of us here at Children's Mercy.  As stated before, WILL IS THE BOSS!!  And, we all just follow his direction.  His docs are reminded daily that he is in charge of his care not them!  Hopefully, within the next week, William can move out of the PICU and to a regular room.  So much more conducive for the rest of the Cunningham 5.  And, further healing will continue.  He will likely need physical and occupational therapy (he's never had to learn to eat or just be a baby), continued medications and breathing treatments, need to gain weight (hoping we don't develop another chylothorax), etc. 

Here are pics from the last week!

The day before surgery--so tired of the waiting for surgery.

2 days out of surgery--and, yes, his chest was left open.  It is open underneath the dressing.  They leave the chest open to decrease the pressure on the lungs and heart.

"I got my eyes on you, mom!" 

2 days after chest closure--tired baby.  What a puffy little boy!  All the fluid from surgery makes heart babies look so much bigger than they really are.  Sad to say, but this is a dramatic improvement from even 24 hours before.

Look at that puffy belly!  It will likely take weeks for all of the fluid to diurese.  But, we don't care about a puffy baby as long as we are making one more step in the right direction.  And, one day closer to no ventilator---and mommy and daddy's arms!

Week in Review!

Isn't it a headline on a news channel on Sunday evening?  Anyways, here is a little review of our week!  Another week down in the books....The Crazy Life of the Cunninghams just seems to get crazier by the day. 

My facebook status on Friday says it all:
Busy week for the Cunningham 5!! 
Heart surgery....check

2 days after surgery!!

Eyes wide open--2 days after surgery!!

 dentist appt for Kenz and Carson....check

Ready to roll!  First trip to the dentist....Scared, NEVER!  Let's get this show on the road!

When you are Carson, you can ROCK it at the dentist!!

BOTH KIDS WITH A CLEAN BILL OF HEALTH FROM THE DENTIST---and a loose tooth detected!  Tooth fairy will be visiting soon, we hope!

Work (Chris)....check

  
Meet the teacher....check (we already knew her!!!)

First day of First Grade....check

My little girl is growing up WAY too fast!!!

Serious business being in first grade.

DON'T YOU SMILE!

Meet the preschool staff....check

Carson had to wear his backpack on his back while taking sissy to school!

Errands....check!! TIRED MOMMY and DADDY....CHECK!!! 

Why am I surprised? Somehow, I seem to forget that we do live the Crazy Life of the Cunninghams!

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!!!