Hyponatremia

Jacques and I make a fantastic team!  Jacques is determined to not allow Lily to become a "cardiac cripple", and he typically takes on the "suck it up princess" role.  I, on the other hand, am very in tune to Lily, and can often be found carrying her up and down the stairs at home when I feel like she's at her limit...when Papa is not looking of course!  On Monday while I was at work, Jacques texted me several times expressing that something was wrong with Lily but he couldn't put his finger on it.  Lily wouldn't play, and couldn't walk without bursting into tears.  Although I was a bit concerned, I was the one who thought we should give it one more day in case she was just recovering from hospital psychosis since she was just discharged on Saturday night.  Jacques texted me on Tuesday and told me to call Lily's cardiologist.  The text said, "Never have I seen Lily this lethargic or lackluser.  It seems like it takes a lot of energy for her to simply smile.  Please call Dr. Frank now."  

Bright and early Wednesday morning Lily and I headed to the Cardiac Clinic in Washington DC.  The team did a full work up on Lily, and we were there the entire day.  At 4pm, the results of Lily's blood panel came back and I was informed that Lily had Hyponatremia.  Hyponatremia is an electrolyte disturbance in which the sodium in the plasma becomes lower than normal.  Lily's sodium level was so low and dangerous that she was immediately admitted to the Cardiac Intensive Care Unit.   When sodium levels in the blood become excessively low, excess water enters the brain cells and the cells swell.  The result can be seizures, coma, and even death.

An IV was placed, and a sodium drip was started.  The doctors checked Lily's sodium levels regularly since a rapid increase in sodium can be just as dangerous.  Over the next 24 hours Lily's levels went up and down, but clearly she was feeling MUCH better!

Nurse Lee gave Lily his Magical Name Badge that opens all of the 

doors on the CICU.  Here Lily is checking out the

Equipment Storage Room!

Since this was an impromptu hospital stay, 

I didn't have my bag of tricks with me.

Have no fear, Nurse Lee is here!!!

Arterial Line, Med Line, Heparin, and Morphine 

stickers can be oh so much fun!

Our family was together in the CICU for Thanksgiving!  

Here the "bigs" were treating Mackenzie.

They gave her oxygen, placed a 'straw' IV, and bandaged her shot.

I am so glad that all of my girls have Papa's GREAT

imagination...these girl's will go places...mark my words!

Will the real Lily Grace please stand up?

Many people have asked me how this hyponatremia happened to Lily.  The doctors believe it is a combination of the massive amounts of diuretics that Lily needs in order to battle the fluid from her Protein Losing Enteropathy, and the fact that she had the "common cold" over the past two weeks.  In order to get Lily's sodium up, the team decided to hold her Lasix, one of her three diuretics.  Unfortunately, Lily is now supper puffy and retaining fluids.  She received a dose of IV Lasix last night, and a dose of IV Diuril today but she still remains very puffy.  Lily has been transferred to the Heart and Kidney Unit, where they are trying to find a balance between keeping her sodium up and keeping her puffiness down.  This is proving to be very difficult right now.

So, in the meantime, Lily has eaten 8, yes EIGHT, bags of these

chips since Wednesday night.  I'm a bit jealous.

My heart has been heavy the past few days as I desperately longed to not spend another Thanksgiving in the hospital.  My focus has been on how fortunate we are to have heeded Jacques' gut feeling since this could have ended a whole lot worse.  I pray that God uses these difficult situations for me to learn the secret of being content in any and every situation.

I know what it is to be in need, 

and I know what it is to have plenty. 

I have learned the secret of being content 

in any and every situation, 

whether well fed or hungry, 

whether living in plenty or in want.

Philippians 4:12

Love is worth the RISK

Lily has been in the hospital since last Sunday.  We were here to bridge her off Coumadin and onto IV Heparin so that she could have a heart catheterization on Wednesday.  The heart catheterization is needed to obtain information for the heart transplant team to determine if Lily is a good candidate to be listed for a new "hero heart".

Lily has had cold-like symptoms for the past two months so we didn't think much of it, but her pre-surgery bloodwork came back with a high white blood cell count of 26.  When the labs were repeated on Tuesday her count was only down to 22 so the decision was made to cancel her heart catheterization.  A viral panel also showed that Lily had a rhinovirus (common cold).  Her weight increased an unbelievable 1 kg (2.2 lbs) overnight.  Our little princess was super puffy, and definitely did not feel well.

 

 The decision was made to put Lily back on her Coumadin in order to send her home for about a week before we would check back in to attempt the heart catheterization again.  The transplant team tried to maximize her time here so they have been collecting various vials of blood each day that are needed for her heart transplant evaluation.  Lily also needed a dental clearance so she had her very first dentist appointment.  Please don't judge, we've been slightly busy dealing with life threatening conditions instead of her teeth :-)  Lily will tell you that she did not like this experience, and ended up puking all over her nurse and dentist.  

The good news is that her teeth look great!  

The plan was to send Lily home today "if" her blood levels were trending upward.  Unfortunately, in true Lily fashion, her blood levels went down instead of up and she spent her entire morning puking and dry heaving.  So needless to say, we are still here!  

The heart transplant cardiologist came to check on Lily this morning.  She told me that at the morning team meeting, the cardiologist who reviewed Lily's medical file while she was still in China told her that he was worried that he may have given us false hope about Lily's congenital heart defect.  The truth of the matter is that before we even knew if Lily was operable we submitted a letter of intent to make her our daughter.  Lily needed heart surgery that China would not (could not) do.  And now she needs a heart transplant that China never would have listed her for.  But, what Lily really needed was the love of a family.  Prior to bringing Lily home from China Jacques and I always said that we wanted desperately to show Lily the love of a family for as long as God allows her little heart to beat.  And here we are a year and a half “home” and Lily does KNOW the love of a family, and she knows about Jesus and how much He loves her too!!!!  

Lily only has half of a heart and one functioning lung.  But you would never know it after meeting her!  She is filled with life, extreme love, and bountiful HOPE.  It has been an honor to be Lily’s mommy.  I have learned through this adoption that even more than Lily needing a family, I needed Lily.  She has taught me more about life and love in the 18 months that I have known her than I learned in the prior 33 years combined.  Loving Lily is an excruciating love.  Selfishly, Jacques and I want more than anything for Lily to grow old and outlive us.  But whether she does that or not, if I am still alive to see her take her last breath, I will know without a shadow of a doubt that adopting Lily was exactly what God meant when he told us to go and be LOVE.  Love is risky, and my heart might shatter again into a million pieces. 

But let me tell you that it is SO worth it.  

A million times over.  

Love is worth the risk.

Finally, all of you, be like-minded, be sympathetic, love one another, be compassionate and humble.  Do not repay evil with evil or insult with insult. On the contrary, repay evil with blessing, because to this you were called so that you may inherit a blessing.  

1 Peter 3:8-9

When Lily grows up she wants to...

When Lily grows up, she wants to be a nurse!

And not just any nurse...

Nurse "Kerwie" to be exact.

During our initial meeting with the heart transplant team, the Cardiologist asked Lily what she wanted to be when she grows up.  Lily did not even have to think about this question, and immediately replied, "I want to be a nurse, and do surgeries."  

Each of us have that very special person in our lives that we desire to grow up to be.  Lily first met Nurse Kerry right around this time last year when Lily went inpatient for pleural effusions.  Nurse Kerry was new to the Heart and Kidney Unit, and was still in training at the time.  From day one, I could tell that Nurse Kerry's spunk and energy were contagious, and Lily was in such a good mood whenever she was around.  Lily's smiles were limited during that time as she had three sets of chest tubes and eventually needed an ng tube placed when she stopped eating.  Even at her sickest, Lily would ask when Nurse Kerry would be back to work.  A very special friendship bond had definitely been created.

Matching pig tails to make the empress smile!

Nurse Kerry is LilyStrong

The hospital magically transforms into a spa

Nurse Kerry is also quite the artist,

and a hospital stay is never complete without

a Hello Kitty on Lily's board

Over the summer Nurse Kerry asked Lily what she wanted to be

 when she grew up, and Lily told her, 

"I want to be YOU!"

Nurse Kerry may or no may not have almost cried :-)

Lily's Intestinal Malrotation

Not only did God make Lily Grace beautiful on the outside, 

He made her unique and exquisite on the inside too!

Lily has complete situs inversus totalis, 

which means all of her organs are situated 

on the opposite side of her body.

 Lily's organs are arranged similar to the photo on the right.

For the past 9 months, Lily has complained of severe

belly pain, and has experienced bouts of intense retching.

An upper GI last week revealed that Lily has intestinal malrotation.

Obstruction caused by volvulus or Ladd's bands

 is a potentially life-threatening problem. 

The bowel can stop functioning and intestinal tissue can die,

from lack of blood supply if an obstruction

 isn't recognized and treated. 

Volvulus, especially, is an emergency situation, 

with the entire small intestine in jeopardy.

So tomorrow morning, at 11:30am Lily will have intestinal surgery.

Since Lily's anatomy is so unique, 

the surgery will begin as exploratory

while they figure out where all of her anatomy is exactly.

During the surgery, which is called a Ladd procedure, 

the intestine is straightened out, the Ladd's bands are divided,

the small intestine is folded into one side of the abdomen, 

and the colon is placed on the other side. 

Because the appendix is usually found on the left side 

of the abdomen when there is malrotation 

(normally, the appendix is found on the right), 

it is removed. Otherwise, should Lily ever develop appendicitis, 

it could complicate diagnosis and treatment. 

Lily and I have been hanging out in the hospital since Saturday.

Lily has been on IV Heparin from the evening we arrived

because we needed to stop her Coumadin 

several days before the surgery.

This surgery is considered high risk due to her heart,

and her clotting disorder.

Please be praying for a safe surgery,

and that the surgeons are able to fix her intestines

and bring her belly relief!

"So let us come boldly to the throne of our gracious God. 

There we will receive his mercy, 

and we will find grace to help us when we need it most."

Hebrews 4:16

Addy Hope - Memorial

Addy Hope Rancourt

May 6th, 2013

"Step softly, a dream lies buried here."

Addy Hope - The Birth Story

Today was our due date.
Wednesday, May 15th, 2013.

Since it was written in my day planner 8 months ago,
highlighted and with a little heart under it,
I feel like I need to do "something"
today about that.

Every birth has a story.  

This is the story of how our precious Addy Hope entered the world, 

after she had already opened her eyes for the first time

in heaven.

Sunday morning (May 5th) I was not feeling well.  I had been up all night tossing and turning from the end of pregnancy discomforts, and also due to a cold that my four girls so generously shared with me.  Jacques was preaching that morning, so he got the girls up and ready and took them all to worship while I drug myself into Urgent Care.  I was pretty confident I only had a cold, but Jacques wanted a doctor to confirm.  Much to our relief, I was diagnosed with "The Common Cold".  I rallied for a few hours when Jacques and the girls returned home from church, but headed upstairs around 4pm for a nap.  I distinctly remember laying on my right side and feeling a ton of kicks from the baby.  Soon after, I fell asleep.  Little did I know at the time that those kicks would be the last ones I would ever feel.

The rest of the evening and night I was miserable.  I was limited to taking only Tylenol, and that simply did not even touch any of my discomfort.  Monday morning rolled around, and it struck me that I had not felt the baby move since 4pm the afternoon before.  This baby was a mover and a shaker so I remember thinking that this was odd.  I ate a granola bar, and had some juice but still nothing.  I called my OB around 8:30am, and she told me to go to Labor and Delivery for a non-stress test.  I finished packing a suitcase since the nurse told me that depending upon what the test showed, they may choose to induce me.  

The little secret that Jacques and I had been keeping since the week prior was that we were scheduled to be induced on Wednesday, May 8th...my father-in-law's birthday.  Jacques and I were giddy with excitement about the thought that we would get to call and say "Happy Birthday" from the delivery room.

I arrived to the hospital, and was not really even concerned at this point.  I excitedly walked to the Labor and Delivery area thinking that today "might" be THE day.  The nurses were all smiles as I approached the nurses station, and one even commented that she loved my black and white bubble necklace.  Kate introduced herself to me, and said she would be my nurse.  We walked over to Room 8 and talked about my girls while she hooked me up to the non-stress test.  I was in the middle of telling her about Mackenzie when she placed the heart rate monitor on my belly.  Nothing.  I remember telling her that they always find the baby's heartbeat very low.  And then I realized, she was already searching down very low.  Kate was very calm, and kept searching.  Nothing.

At that moment I knew.  I had so many non-stress tests during the past few weeks, and the baby's powerful heartbeat was always heard immediately upon putting the probe on my belly.  Kate said she was going to go and get the sonogram machine, and would be right back.  I frantically called Jacques, who was at work next door, and told him they couldn't find the baby's heartbeat and to come quickly.  Moments later, my OB walked in the room with Kate and she immediately began the sonogram.  She went straight to the heart, and without uttering a word, I knew.  I burst into tears, and my OB hugged me as I sobbed into her shoulder.  

Jacques entered the room a couple minutes later, and all I could say was, "we lost the baby".  We held each other as best we could through our body wracking sobs.  It was awful.

Jacques and I were prepared for so much, but not this.  No one ever is.  I already knew the answer, but asked the OB what would happen next.  Within a short time, I was hooked up to an IV receiving fluids.  The anesthesiologist came in and administered the epidural, and then Pitocin was started to induce labor.  I labored for about 8 long hours.  My blood pressure kept crashing very low, so as uncomfortable as it was, my bed needed to be virtually flat during the entire 8 hours. There was no laughter or excitement in the room as I was accustomed to during labor.  No talk of "is it a boy" or "is it a girl" like with our other two deliveries.  The thing about this labor that I will never forget is that there was no heartbeat rhythmically beating in the background.  A deafening silence rang in my ears for 8 long hours.

About an hour and half before delivery, it was decided to bump up the Pitocin.  My OB explained that typically they cannot do this since the concern is always focused on the fetal heart rate.  Unfortunately, this was not a concern for our baby, as much as I wished it was at that very moment.  Before I knew it, I remembered that familiar "pressure feeling" accompanied by a lot of pain.  Sure enough it was time.  

To keep with our tradition, the OB allowed Jacques to put on a gown and gloves.  He stood with the OB at the base of the bed, and the OB walked him through how to deliver our baby.  Jacques' hands have always been the first hands to hold our children.  This baby was no exception.  Jacques carefully pulled our baby from the birth canal, and placed its precious body on my chest.  The OB told him to check out its gender.  To all of you naysayers (I say this in the most loving of ways) who could not imagine not knowing the gender of your child before birth, this was the crescendo of our baby's birth story.  I held my breath until Jacques said, "It's a girl!".  A girl?  No way!  I was 100% sure she was a boy.  So much so that I even had Jacques convinced.  What a beautiful surprise.

After we told the nurses and OB that her name was Addy Hope, I remember closing my eyes.  I did not want to forget this moment.  I could feel the weight of her body against mine.  And she was warm.  So very warm.  The only crying heard in the room was from Jacques and I.  Oh how we longed and continue to long for the cry of newborn life ringing in our ears.

Other than discovering that our "son" was indeed Addy Hope, perhaps the most memorable part of her birth story occurred when Kate waited with me in the wheelchair while Jacques went to go and pull around the car.  Kate told me that she can tell a lot about a couple by they way they treat each other in the labor and delivery room...even in the most normal and perfect of situations.  She said that in all of her years of working as a nurse in labor and delivery, she had never met a couple like Jacques and I.  She was amazed at how we handled Addy's birth with grace, and treated each other.  She said there was something "different" about us. 

It's easy to talk the talk.  I have said a lot of words over the past two years through this blog.  It is a different story to live out your faith.  Addy's death and birth have been the most heart wrenching part of my life so far.  I love the song, "Live Like That" by Sidewalk Prophets.  The lyrics say:

"I want to live like that, and give it all I have

so that everything I say and do

points to You."

"People pass, and even if they don't know my name

is there evidence that I've been changed?

When they see me do they see You?"

"Live Like That" by Sidewalk Prophets

I can confidently say that what Kate saw in Jacques and I was Jesus.  He is the center of our marriage and of our family.  Jacques and I did not have the strength on our own to make it through the birth and delivery of our deceased daughter, Addy Hope, alone.  The only explanation is that Jesus was ever present in that delivery room carrying Jacques and I through the most difficult day (and days to follow) of our lives.  

Yes, even through the hurt "I want to live like that".

Healthy Grieving

While a person is grieving, absolutely nothing about it feels healthy.  As a matter of fact, my head is throbbing right now, my eyes are bulging and swollen, and my chest feels like the elephants from the Circus are still in town and camping out there.  But, grieving is necessary, and ultimately healthy. 

Yesterday, we took the big girls to the funeral home to say hello and goodbye to their baby sister Addy Hope.  This is not what we expected or planned to do, but there is no playbook and every child grieves differently.  Dryden and Soleil were adamant that they needed to "see" and "touch" Addy.  The funeral home director was amazing, and he made Addy look like an absolute princess baby lying under a beautiful spring time quilt.  Her lips were perfectly pink, and it looked like she may wake up and cry at any moment.

 

Dryden documenting her sister Addy so she never forgets...

Jacques and I studied our sweet girl from top to bottom many times.

I assure you, 

everything was perfect.

Addy Hope was a perfect gift from God,

and I was blessed to have carried her for 39 weeks.