Darkest of Days

Not exactly sure how this blog should go or be written.  But, I am trying to write it to the best of my ability despite the deep sadness that may permeate through my writings.

My last photo of our boy taken on September 21, 2012. Will figured out how to stick his tongue out.  We sent this pic to Daddy!

 

On Saturday, September 22, 2012 at 1832pm (yes, i think of time in a military style, too many days spent in the medical field), our world came crashing down.  Our sweet baby, William, checked into the pearly gates of Heaven.  St. Peter opened the gates as he saw William coming his way.  And, in my heart of hearts, I know that our family that has passed was waiting with open arms.  They were all anxious to rock my baby and tell him that they would take care of him until the day comes that he gets to wait at the Pearly Gates for his mommy and daddy to come Home.

William fought the fight of all fights in 4 1/2 short months.  Every day was a struggle to breathe, yet he never let us know how much pain/suffering he endured.  He was our precious third baby, perfect in every way.  Bright blue eyes, red-hair (with the temper, too!), long fingers and toes, small petite beautiful mouth, two small teeth (just breaking through), a perfect smile, a zipper on his chest, a tiny hiny (as his nurse Laurie called it).  He was our perfect Skinny Mini.  And, for all of these features, we are forever grateful to our God for sharing his Prince William with us.  Thank you God for William.  We will always wonder why his time with us was so short, but we know that You have great plans for your child.  Give our baby boy love daily just as we did everyday in the last 4 1/2 months.  There was not a day that either his mom or dad did not spend some time with him.  And, God, please watch over his big brother and sister as they grieve for their lost time with William.

Will and Monkey in deep conversation on September 20, 2012.

Since this life changing moment in time, when our world stood still, so many things have been done.  The number of decisions that must be made immediately following a death is beyond reason.  And, the time frame in which it all must be done is unbelievable.  I could list all of the behind the scene things that a grieving family must do to prepare for the saddest of days, but the list seems to be ever changing in importance and order.  But, we are making it.  By the Grace of our Gracious and Loving Father, our family, and our friends we are surviving.  Minute by Minute, Hour by Hour, which then turns to Day by Day.

When a family member or loved one passes away, sorry doesn't seem to cut it.  But, let me tell you all that sorry is good enough.  There are no appropriate words when a baby dies too soon.  But, knowing that we as parents are not alone is healing.  Having people stop by, bring food, phone,write letters or messages, send text messages, hug, etc. has made each day just a smidge better.  And, the next few days are going to be the hardest yet.  So, say a prayer for our grieving family, call us, write a letter, send a text, etc in the coming days and weeks.  The Cunninghams are going to need it.

A Family of Five!!!

Strong Willed Warrior

The other day, I began to wonder what my children's names meant....it has been a while since I looked them up in a baby book (or online).  So, I did my research (google style).

Mackenzie:  Son of Kenneth (not sure how this fits my girl, but oh well)  The name fits her, I guess.
Carson: Christian (similar to Christopher in name)  Interesting, huh?
William: Strong willed Warrior.  Could not have said it better myself

MY FAVORITE PIC TO DATE!!!

It has been a little while since I posted much of an update on our precious boy.  William remains in the Pediatric Intensive Care Unit at Children's Mercy.  It has been a long 4 months and 1 1/2 weeks!   But, Will remains a strong little man.  He continues to fight an uphill battle.  Yesterday, Chris and I met Cardiologist #10 of 15.  And, she reinforced how rare and serious his condition is to begin with and how seriously ill William is as a result of TAPVR with pulmonary vein stenosis.  Many (of the few, few babies) born with his defect do not make it to the initial surgery, don't get to go home, don't make it to the cath lab twice, don't have a second chance at open heart surgery, and our William has defeated the odds.  But, he remains a sick little boy.  His right sided heart pressures are extremely high from the back flow in the lungs as a result of the pulmonary veins being too small.  William has continued to struggle with increasing pulmonary edema and work of breathing.  He has gone from needing high flow nasal cannula to intermittent BIPAP to continuous BIVENT and CIPAP to support him from a respiratory standpoint.  And, these needs aren't going away.  He will continue to struggle to breathe and grow by working so hard all the time.  He has gotten longer and gained very little weight--still under 8lbs and he's 4 months old!  Every calorie he is given is directed for breathing and heart function, so growing has been pushed aside.  The body prioritizes from Day 1.  In order for his pulmonary veins to have a chance at growth, WILLIAM MUST GROW! 

CIPAP mask--he actually likes it!

 

Got to go to a nasal cannula for his first photo shoot today--Child Life had a photographer come take pics for us.  We have amazing photographers who want to take Will's pictures, but scheduling them before our next adventure seemed impossible.  So, we will hold those tickets for the future!!  Pics to come in the next few days!!

We have given food, water, and a little sunlight (via a second story window!) but not much growth.  And, not because there's been a drought in the area is Will not growing.  There is no drought where his milk comes from!!!  How does one get a baby to grow when they are on the highest calorie count that can he can consume and still isn't gaining?  They take the work away from him--meaning that he will need respiratory support to ease his work of breathing and therefore, decrease the effort on the body.  So, late this week or early next week, William is going to have yet another surgery.  This one is for a tracheostomy and gastrostomy.  William is going to have a trach placed for ventilator support of breathing.  The goal is that this will rest his body so that GROWTH can happen.  But, with a trach, one must continue tube feeds.  So, a G-tube will be placed as well.  SCARY STUFF! 

My perfect looking boy will be perfect in a new way in a week or so.  And, GROWTH will begin!  If he can demonstrate growth over time in the PICU then we will come home on a ventilator, apnea monitor, and tube feeds.  Good thing, we bought the Expedition in January--Will is going to have lots of paraphenalia.  The learning process for this mom and dad is just beginning.  Keep our strong-willed warrior in your prayers as he undergoes yet another surgical procedure.  And, keep us all in your prayers as we embark on a new adventure.  We often state that William is the captain of the ship and we are all just passengers (Chris and I as well as his entire medical team--and that is A LOT of people.....growing by the day!!!)

Pride.....

I have been pondering this post for a long time....well, long, in the sense of the past 4 1/2 months LONG! So, if it rambles, I am sorry. I just hope it humbles many! And, I hope we all grow in the process.

Pride: as defined by Good Ole Mr. Webster

: the quality or state of being proud

: proud or disdainful behavior or treatment : disdain

: a source of pride : the best in a group or class

: a company of lions

: a showy or impressive group <a pride of dancers>

Proud: as defined by the same Mr. Webster
: feeling or showing pride:
: marked by stateliness : magnificent

: giving reason for pride : gloriousvigorous, spirited <a proud steed>

chiefly British: raised above a surrounding area <a proud design on a stamp>

Just wanted a refresher on what the differences in the two words mean. One is a noun and one is an adjective. Those of you who know my mother know how proud she would be of the English review on my blog. But, my point of reviewing these words to refresh in our own minds that we use adjectives to describe nouns. Pride in itself is a noun and Proud in itself is an adjective. So, what does this have to do with the price of rice in China?

 

Well, I have found myself as well as that of my family struggling with our own pride during this past year. 2012 has not been our best one yet...definitely one for the record books but not the best for sure. Not knowing what tomorrow brings for your family makes one realize that there is no time to be too prideful or proud. Instead, BE PROUD OF WHO YOU ARE AND PRIDEFUL OF WHAT YOU HAVE TO OFFER!!

Chris and I never allow pride to come between us...there are times that we are too proud to admit when one of us is wrong. But, we always confess that we were wrong (it just may take a while.) We have tried to instill this in our children as well. Sometimes, their pride gets in the way, but they still stand proud of who they are and what they stand for. (English teacher mother, not so happy with ending the sentence with for...but, can't reword it correctly!!)

When you are sick or have a sick child there is no time for PRIDE to get in your way. Never in my wildest dream would I have ever have envisioned what was in store for me and my family last January when I went into the hospital for 5 days---it was a minor setback that seemed so major at the time. But, like so many things in life, I look back and see how minor my own feeding tube was. When a loved one is sick, you take free dinners, a clean house, laundry done, car rides to and fro, cash from strangers, government assistance for your children, and the list goes on and on.

Recently, I posted a comment on my Facebook account about standing in line at the grocery store and judging those in front of you as they use their WIC checks. It was me that was judged. WIC is a government program to help provide healthy foods for women, infants, and children under the age of 5. And, as you know, I am a woman, I have an infant, and I have a child under the age of 5. I called my local health department to find out about renting a breastpump because mine was dying a slow death. Come on, those things were meant to be supplements to breastfeeding not a 24/7 device. And, low and behold, I find out that I qualify for WIC based on the fact that I cannot work and our income without my job qualifies us. I did not ever want to use and abuse any system, but I knew that Carson and William shouldn't suffer for my pride. So, I agreed to participate. Going to the appointment was no big deal except for the fighting 3 and 6 year old that accompanied me.

But, using the checks at Wal-Mart was and continues to be AWFUL. Every time I go, someone says a sarcastic comment or stares at me in the process. I have always been PROUD to say that I have an open mind and try to limit my judgements....and my recent experiences will reinforce this. I am PROUD of how I have handled the comments or stares. My self-pride has prevented me from letting loose on the woman judging me or the clerk with the smart mouth. I am not abusing a system. It was created for families like mine. Yes, there are those that abuse but more that use it correctly. I have kept my cool when my inner self wanted to scream. I wanted to unleash my 2012 story and that of my precious baby boy who remains in ICU just to make the woman crawl in a hole. But, I am too PROUD to stoop to her level.

So, please keep my family in mind when you have it in your head that you are better than someone else....don't be too PRIDEFUL or PROUD of who you are that it gets in the way of helping another or more importantly, helping your family and yourself!! I have learned to put all pride aside and accept that I need all the help I can get to make it another day!!!

4 Months Old!!!

Disclaimer:  Might be hard to read, again!  Sorry if these posts bring our blog followers to tears, but it is fabulous therapy for the mom and dad...okay, the mom is the one writing the posts, but they are thoughts we both share!

Happy 4 month Birthday, William!!!

Welcome to the world, William!

 

1 month old!

2 months old!

 

3 months old!

4 months old!

 

 

Dearest William,



I woke up this morning thinking of all that you have endured in the last 4 months.  Wow!  You are truly an inspiration to us.  Each day when another hurdle is on your track, you just hurdle it like it wasn't even there.  You surprise everyone with your ability to take it all in stride.  A gentle little man despite all the hardships you have faced and continue to face. 

When I was pregnant with you, Dr. Gollier would tell us all the time that at least 1 person in the room was happy with how things were going, YOU!  And, now, we have doctors tell us everyday how happy they are with where you are on the course of life and that they are happy to take care of you.  Dr. Tieves is hooked on our boy....and Dr. O' Brien has no explanation for how fast you can heal.  So, keep going strong little man.  BECAUSE we are so happy to have you in our lives. 

You have gone through 2 open heart surgeries, 2 cardiac cath attempts, 2 ambulance rides, way more than 2 hospital beds, 2 weeks at home, and TOO many days in the hospital.  Yet, you keep fighting.  William, you inspire us!  We are all so unsure of what will unfold for you each morning when we wake up.  But, know this, God has a plan for you.

Almost 2 weeks ago, daddy and I were given some scary news regarding your pulmonary veins.  Your heart surgery was a success.  The confluence was opened up just as expected, but you still have increased right side heart pressures.  So, a CT Angiogram (your second one) was performed.  The CT revealed that 3 out of 4 pulmonary veins are extremely small.  The doctors aren't sure of why they are small.  There are three different courses with hypoplastic pulmonary veins.  1. They are small because you are small (GROW)  2. They are inflamed from surgery and constant pressure (TIME, and maybe, MEDS)  3. Congenital Disease (Progressive disease with poor outcomes).

So, you are now on a FEED and GROW plan here at CMH.  You number one job is to rest and gain weight.  We all want you to have every opportunity to grow to see if they will grow with you.  You are receiving breastmillk with formula added to boost calories...plus, heavy fat from all of that double skimming.  More fat with less volume.  We know that you want to do things that all 4 month old babies do like rolling over (which you tried last week...bought you a big boy bed!!), cutting teeth (we weren't quite ready for them, but they are poking up), smiling and giggling (bring them on big stuff!), watching people (your brother and sister are ready for this), etc.  BUT, we need you to conserve as much as possible. 

Today marks 4 months here, the rest is yet to come.  So, take it easy little man.  Time is on your side.  We are trying to swallow the Tincture of Time Pill....a hard one to swallow.  Our entire family and the many prayer warriors want you better already, but TIME is what you need.  We need you to have the most time to see what it is to come.

We love you,

Mommy (and Daddy, too!)

Crazy Life....

We definitely live the Crazy Life of the Cunninghams....and, the craziness continues to head our direction.  I used to say that I wouldn't have it any other way, but that viewpoint might be different now.  I would take a little less CRAZY and a little more NORMAL!!  But, this is my life and that of my family, so we will keep trucking!

Family Pic of All 5 of Us!!

First time all in one pic....September 8, 2012!

 

We have managed to get back into the swing of the school year, working more hours each week, splitting parenting duties at home and at the hospital, etc.  Each week/day is well planned out but planning ahead is nearly impossible.  So, in essence, we plan to fly by the seat of our pants A LOT!  :) 

During the week there is school, soccer, homework, church (we hope!), time at home (seems to have been in short supply in recent months), work (both mom and dad), time together as a family (also in short supply lately), and the list grows more and more each day.  The weekends seem to be non stop.  Soccer games, activities with Mackenzie and Carson, visitors at the hospital, nights spent at Ronnie's House or Grandma and Papa's Houses, errands, etc.  Sunday nights are our night all together.  We have dinner and play together then we split duties.  One of the two of us will stay with Mackenzie and Carson at Ronnie's House after bath while the other one goes to tuck Will into bed.  I am savoring our Sunday evenings as crazy as they may be at times.  Cuddling in bed with my kiddos and reading a story together is priceless or reading my baby a bedtime story before going to kiss my hubby and other 2 kiddos is so precious.  Ideally, this would all take place in my house on Poplar Street in Ottawa, KS.....but, it isn't happening that way right now.  So, I am learning to love every minute I can.  Because, once again the Little Things in Life Are Just That, Little Things.  But, it's the little things that make Big Memories.

Aren't they precious??? They really LIKE each other (most of the time!!).

 

And, even LOVE each other, too! They gave each other hugs and kisses without a prompt!!! And, I caught the moment with my phone!!

 

 

Chris and I are trying to split duties during the week, but it makes for a lot of single parenting which is not easy.  No, we are not the first couple to do this, but this is the first we have done it this way.  Chris previously traveled for work, and I was at home with Mackenzie and Carson.  But, this is WAY different.  Having William in the hospital adds just a little bit of stress to the mix.  Monday thru Wednesday AM is Chris's patrol and Wednesday PM thru Friday afternoon is my patrol.  And, the weekends are a hodge podge of the both of us or our parents.  Like I said, flying by the seat of our pants!!!

On August 30th, we celebrated 9 years of wedded bliss. I can honestly say that I love Chris more now than I did 9 years ago. We were able to enjoy a night at the Royals Game for a little anniversary date. When you have a child in the hospital, you try to save every penny. So, celebrating our anniversary was going to be put on the back burner....until we got FREE tickets from Ronald McDonald House! The Royals lost the game but it was still a great night for us to enjoy EACH other's company!!

So, here's to another week in the CRAZY LIFE OF THE CUNNINGHAMS!!!!
 

Great pic....if Carson wouldn't have been acting so goofy....or just being Carson.