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!!

Home Sweet Home!

841 S. Poplar has never felt/looked better than it did last night when Chris and I brought William home for the first time EVER!!  Such a celebration at 6 weeks of age...getting your first breath of fresh air, riding in a car (not an ambulance), and being carried in the front door.

First time outdoors!!

LOVE!!!

All 3 of my babies together in our house!!!

Carson's first time holding Will by himself.  He was fascinated by Will's hands.  They just held each other's hand for 3 minutes.  PRECIOUS!!

Our homecoming is such a bittersweet moment.  We know that we are only home for a short while.  William is scheduled to have a cardiac catheterization on July 5th.  His respiratory symptoms in the past week have continued to be problematic.  He is simply breathing too fast!  He is not working extremely hard for each breath but taking too many shallow breaths.  This is very similar to how he was breathing before his TAPVR repair.  His echocardiogram last week was concerning with a pressure of 6 in his left atrium.  The echo was repeated this week.....not reassuring at all.  His pressures have nearly doubled in 1 week.  The left atrium is reading out at 11.  And, the area of surgical repair is too narrow.  The narrowing is causing the increase in pressure.  The cardiologist and the cardiac surgeon do not understand how or why this has happened.  So, the cath will be done to determine what the next course of action is for William's heart.  If there are areas that can be ballooned during the cath, then this will be done.  But, the entire team is doubtful that the narrowing at his surgery site can be ballooned.  The cardiac surgeon wants the pictures before another open heart surgery.....likely the end result for William, a second open heart surgery!


Please continue to pray for William and the medical team managing his care.  As the mom administering his meds and managing his feeds from home, I need prayers as well.  I am a trained professional who does these tasks day in and day out, but not on my own baby.  Tonight, I had to place his NG after he pulled it out.  4 attempts later--it is in place and working like a charm.  AND TAPED DOWN A LITTLE BETTER!  Watching your 6lb. baby cough and scream as you put a tube down their throat is awful...and seeing your hubby hold him steady..awful!!  6 medications throughout the day at multiple times through his NG--a process in itself.  And, then let's add his double skimmed breastmilk to the mix.  Yes, you read that right, double skimmed breastmilk.  He had an intolerance to the Enfaport formula that he needed for his chylothorax from surgery and can't have fats in his diet for 2 weeks.  So, we are having to skim all milk for fat for 48 hours and then add another fortifier to get him calories.  Poor kiddo is being tube fed 22 hours a day...he can't take food orally because he is breathing too fast.  It is like a science experiment in my fridge.  And, once again, William broke the mold--he is only the 2nd baby that CMH has used double skimmed milk as a feed.

Papa Miller and Grandma Joyce savoring the moment!!

Being home is exhausting!!!

AND, HEART SURGERY...."THAT WAS EASY"

This is the only time he has not had one tube on his face...the moment didn't last long, but we snapped a shot in the meantime!!

Ups and Downs

Roller Coaster Ride...

The Friday before Will's surgery the cardiologist told us that his accessory vein was like a roller coaster from his lungs to his liver....well, they stopped the flow of that roller coaster with surgery, but the ride continues.

William was able to be extubated and free of the ET tube on Monday and has done so well weaning off his oxygen.  We are on room air and without any additional oxygen.  But, his respiratory rate and effort are not quite where the docs (and his parents) want them.  He is simply breathing too fast.  And, his lungs are a little too hazy on x-ray.  So, they added another diuretic today.  It seems like every time his electrolytes get back to normal, they have to change his meds to pull more fluid off his lungs. 

Right before the oxygen was removed!!

Big boy bed!  See his red hair!!  Only tube is his NG!!

The echocardiogram that was completed last week was not the most reassuring to the cardiologist.  It seems that his pressure in the left atrium (where the pulmonary veins were connected to the heart) are too high.  Ideally, the pressure would be 0 to 3 (max) and Will's were 6.  Discussion was made about when to repeat the test--early this coming week, and what would need to be done for repair if the pressures are still too high.  And, sadly, the answer may be another open heart surgery if they continue to be too great.  Please pray that they will improve and that his breathing will get better.  I am not sure that his mommy and daddy can handle more!!  And, we know William is strong, but how strong can one be at 5 weeks old?  Strong enough to endure another open heart surgery???  We pray that it does not come to this.

To top all of this stress off, the poor baby has chylous fluid in his chest.  This means that his lymph system was injured during surgery...kind of expected given such a small guy with limited chest cavity to perform the surgery.  But, this means that his lymph system cannot move the fats throughout his body like it normally would.  So, when he gets fatty foods in his stomach the fat then goes into his chest cavity and chest tubes.  Therefore his diet had to be changed...no more of mommy's milk.  He has to be on a no fat diet for 2-3 weeks.  Infaport formula and William are not in agreement.  He has thrown up after almost all feeds including his NG feeding tube on one occasion.  I know all too well that throwing a feeding tube up is the WORST experience.  And, I watched my baby do it!  Awful.  But, now we are trying something new to help him....double skimmed breast milk.  Hopefully, skimming the fat off the milk will help his GI system without harming the chylous.  Poor baby can't catch a break!

First outfit in almost 2 weeks---clean until the formula and Will did not mix. We are now wearing hospital gowns or blankets....too much throwing up for cute clothes!!

1 month......

1 month ago....yesterday.

We began a new adventure in the Crazy Life of the Cunninghams.  William was born.  And, with his birth, we became a family of FIVE.  But, in the past month, we have not lived as a family of five.  It has been chaotic to say the least.  Chris and I have tried hard to juggle parenting of three kids who all have different needs right now.  And, at times, it seems like we are sinking rather than staying afloat.  But, we can mark one month DONE.  Now, we are moving on up in this world. 

This pic definitely represents my 3 kiddos--Kenzie, the mother hen, Carson, the class clown, and William, the Prince being doted on by his brother and sister!!

Mackenzie is a quiet, people pleaser.  She is also our sensitive child who wants to make people (especially her parents) happy.  She may have sass but all in all is an emotional girl.  Throughout the past few weeks, we have seen her grow as a big sister.  She has taken the role of Carson's protector ever so serious.  They cannot be too far apart....except when she got a girls' weekend at Briley's house.  We have also seen her struggle with worry and frustration.  Breaks mommy's heart to see her keep things bottled up or act out her frustrations with a nasty attitude.  But, I know that she is doing the best she can handling all of the changes we have experienced as a family.  And, soon my little girl will get to be a little girl again.

In the last month, I swear she has grown 2 inches.

First time seeing her baby brother after his surgery--1 week after last seeing him.  Love all over the place as I sure you can tell!!

Carson is the class clown of our family.  Just thinking of his ornery behavior makes most people smile.  In the last month, this goofiness seems to be thriving.  But, it makes for a TOTAL lack of focus.  If you can make someone giggle, why do you need to pay attention to anything else????  He has grown up in a month's time....he no longer sits back and does what his sister tells him to do.  A struggle begins with each demand he chooses to ignore.  We know he is hearing them all but listening not so much.  Despite the ornery behavior, his hugs remain.  Definitely our LOVER--never a time when you can't get a hug and a kiss from this boy. 

Can't you all see the mischevious little mind working---"where can I pour this water?"

William is the big man on campus today.  Prince William is ET tube free and off the ventilator.  We have been patiently waiting for him to let us and the medical team at CMH know that he was ready to wean off the vent.  And, today was the day!!  He was a pro on CPAP and then even better on just a wimpy little 1L of oxygen!!!  He also got rid of his CVP, Arterial line, 2 IVs, Neers sensor, and moved to a step down room in the PICU.  A graduation of sorts--a good sign when they move you down the hall away from the main nurse's station.  He was so happy and alert all day.  To the point that we were telling him it was night night time.  Can't wait to hold him some more tomorrow....only got a few minutes of loving time.  His chest is still so sore with movements--as it should be!  So, we tried to minimalize activity today.  And, daddy will get his cuddles in tomorrow, too.

Resting comfortably this morning with his ET tube in place.

Wide awake and ET tube free.....doesn't he look smaller without all the extra wires and garb??  Back to being my tiny baby who can be swaddled!!!