Do Not Worry About Anything...

Many of you follow Lily's journey on the "Praying for Lily" Facebook page.  Our blog has been greatly neglected since it tends to be easier for me to give quick updates on Facebook.  To get everyone up to speed, Lily was admitted to the Cardiac Intensive Care Unit the day before Thanksgiving with a dangerously low sodium.  With the assistance of IV fluids, the team was able to elevate Lily's sodium count, and she was transferred to the Heart and Kidney Unit.  Over the past several weeks, Lily's sodium has dropped dangerously low at times causing two instances of seizures.  The doctors have discovered that the only way to keep Lily's sodium within a safe range is to have her on an IV sodium drip with four doses of sodium chloride tablets administered throughout the day.  She is also on a tight fluid restriction, which leaves her horribly thirsty all the time.  Initially it was thought that this acute Hyponatremia (low sodium) was due to one of the diuretics that Lily was on.  However, that drug was stopped weeks ago, and the problem still persists.  Lily's fragile body has become very puffy with all of the IV sodium, and the team shares in my frustration as the extra fluid causes respiratory distress and makes Lily feel like she is constantly choking.

The Nephrology team feels that the only thing left to try is a drug that is FDA approved for adults called Tolvaptan.  The drug has only been used on a small pediatric population due to the fact that this type of hyponatremia typically only affects children with failed single ventricle anatomy.  Jacques and I were given a copy of the study that was done on the pediatric patients, and we both read through it thoroughly.  I was given the opportunity to discuss our questions with the Cardiology and Nephrology teams.  The hope is that the drug will get rid of the free fluid that has accumulated in Lily's body.  This free fluid has caused her sodium to become diluted, and therefore has her trapped in a vicious cycle of not enough sodium and too much fluid retention.  This drug is very high risk since it can cause the patient's sodium levels to increase dramatically, which would cause brain swelling.  Lily will be in the Cardiac Intensive Care Unit, and will have blood draws every two hours to closely monitor the sodium increase.  Also, because of Lily's clotting disorder there is a lot of concern as to how her body will react to this medication.  We have seen Lily's Coumadin levels jump all over the place over the past few weeks as her sodium levels dropped and increased.  A quick rise in sodium could cause Lily's blood to become too thin, which could put her at risk of a brain bleed or stroke.  I was told this morning that we should have an answer this afternoon from the hospital committee as to whether or not they will approve the use of this drug for Lily.  If they do, it will be sent over from the Washington Hospital Center, and she can begin the treatment tomorrow.  The discouraging thing is that there is no guarantee that this drug will even work.  The hormone that the drug acts upon is not affected according to Lily's bloodwork, but we have been told that sometimes the bloodwork is not a good indicator.  Lily cannot continue down her current path, and everyone agrees that we need to try something.

Jacques and I have bathed this treatment plan decision in countless hours of prayer.  It's impossible to know if we are making the right decision, but we are painfully aware that we need to try something.  Please join us in praying for God to use this medication to stabilize Lily's sodium levels so we can "get outta here"!

Do not worry about anything; instead pray about everything.

Tell God what you need,

and thank Him for all He has done.

Philippians 4:6

Youre Grace Abounds in Deepest Waters

Lily Grace and I have had a lot of special moments together over the past month of this hospitalization.  Anyone who knows Lily will agree that she is an old soul.  A child wise well beyond her four years.  Lily is often asked how many brothers and sisters she has.  She always responds four.  Once I made the mistake of correcting her, and she went on to name them all...including Addy Hope.  Lily talks about "our baby" all of the time, and tells me that she cannot wait to hold her baby sister in heaven. 

Jacques and I brought Dryden and Soleil to the funeral home to meet their baby sister the afternoon after she was born.  They were both adamant that they needed to see her and touch her.  At the time we felt that Mackenzie and Lily were too young to grasp the concept of what had transpired the day before.  Hindsight is 20/20, and I now believe that this decision has left a lot of loose ends for Lily. 

Lily loves when I put photographs to music, and she could not understand why I haven't done this yet for Addy Hope.  This video, is a joint effort between Lily and I.  Together, we tried to memorialize the 39 weeks Addy spent with us here on earth. 

When you go through deep waters, I will be with you

When you go through rivers of difficulty

you will not drown.

When you walk through the fire of oppression,

you will not be burned up;

the flames will not consume you.

For I am the Lord, your God.

Isiah 43 2-3

 

Lily - I've Loved You For A Thousand Years

Lily Grace has been asking me during the past couple hospital stays to make her another video.  I told her I was waiting to find the PERFECT song to make a video featuring just her.  I finally found that song, and worked on the video yesterday.  Tonight we sat together before bed, and watched the video together several times.  She loves it!

Lily girl, I have "loved you for a thousand years, 

and I will love you for a thousand more".

I love you a thousand,

Mommy

Music by: Christina Perri - A Thousand Years

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.

 

"Don't worry, I gotcha!"

If we were given the opportunity to paint the picture of our own future, things might look completely different. But we aren’t. Instead, we understand that our lives – present and future, rest in the hands of the master painter. What that means is, we don’t know what the future holds. We don’t try to control the hands of the one who holds us. 

We let Him paint the masterpiece.

Sometimes it feels like a masterpiece.  One year ago today, we added two incredibly beautiful and wonderfully designed girls to our family.  Mackenzie Ty and Lily Grace became ours. Our lives will never be same because of it. In just one year, our family has seen the power of what love can do. While people would whisper to us, “Those girls are so lucky you rescued them”, we understood that in fact, the opposite was the case. In many ways, they rescued us. They showed and are showing us that when God paints a picture of a family, it comes in all shapes, and colors and sizes. 

And love; love can overcome anything.

We learned to trust the one painting the masterpiece. And although there were many moments of doubt – believe it or not, trusting was easy. Lily was getting stronger. Mackenzie was soaking up the love of a family. Dryden and Soleil had survived the initial shock, and were embracing their new sisters.  We can do this, we thought – we like the picture the artist is painting. 

Sometimes it does feel like a masterpiece!

Sometimes it doesn’t. As most of you reading this blog already know, just over 9 months ago, Emily and I found out the shock of a lifetime, another baby was on the way. Just a couple months into the pregnancy, our worlds were rocked to learn that our precious baby had Down’s Syndrome and a major heart defect. When the shock wore off, we not only moved to the point of embracing this new reality, we were looking forward to it – even excited about it. We spent the next few months bantering over names, taking bets as to whether it is a boy or a girl, and surviving multiple ultrasounds and echocardiograms that represented an opportunity for someone to ruin the surprise.

Boy or girl - we couldn’t wait to be surprised!

We weren’t prepared for the surprise that crushed every part of a parent that could be crushed. Last night, at 8:00 p.m., my brave wife Emily delivered Addy Hope Rancourt.  She delivered our daughter only after finding out she had already died. She arrived to us, the most beautiful and angelic 7lbs, 14oz, girl you could imagine.  Yet we never got to hear her cry, see her beautiful lips pucker up, or feel her tiny hands grasp onto our fingers. 

Sometimes it doesn’t feel like a masterpiece. 

And although right now, I want to grab the brush and finish the painting myself, I know I can’t. We can’t. I am tempted to think that I could paint a much better masterpiece for our lives. Our minds are filled with questions like “Why” and “How”, and we can’t get the “What if’s” out of our head. We are trying to make sense of our thoughts and feelings, but I am not sure we ever will. 

All I can ask of you is this: Pray for us. Pray for our family. Pray that we can trust the one who is holding the brush. Pray that we can celebrate the beautiful strokes that are Dryden and Soleil and Mackenzie and Lily. And pray that we can always see the incredible beauty that is in the stroke Addy Hope. We love you all. 

You may or may not know that the anniversary of the day you get your adopted child is called “Gotcha Day”. And we are celebrating that. And we take great comfort in the fact that our God has already whispered to Addy, “Don’t worry, I gotcha!"

He causes his sun to rise on the evil and the good, 

and sends rain on the righteous and the unrighteous.

Mathew 5:45

The Unsung Heroes!

This blog started out as a journal that I intended to share with Mackenzie and Lily someday about how they became a treasured part of the Rancourt family.  Today, as I look through the blog post titles, this blog has become so much more. 

It is our entire family's journey through times of

 joy, 

hope,

 sorrow, 

redemption, 

healing,

 hurting, 

love, 

and abundant blessings 

that Jacques and I could never have dreamed or imagined.

Today I want to share with you a little about the true unsung heroes of our family...Dryden and Soleil.  The transformations that Jacques and I have seen in these precious little girls over the past year has been nothing short of astounding.  They went from being the center of our attention and affection, to having to share us with two very sick and love needy sisters overnight.  They had become accustomed to being the "Pastor's children" whom everyone fussed over as soon as they stepped foot into worship; to being passed by without a single glance by well intentioned people who were interested in hearing updates on their new little sisters.  With surgeries and long hospital stays, Dryden and Soleil have had to sacrifice their want and often times their need to have mommy and papa available to them.

Soleil is our helper!  She is most happy when she is serving others or giving gifts.  Soleil loves to get her little sisters dressed in the morning and changed into their pajamas at bedtime, which is not always an easy feat when you are dealing with a very independent 3 and 4 year old who like to get dressed by themselves.  I'm excited for Soleil to have the opportunity very soon to help change and dress the new baby, whenever s/he decides to arrive!  Soleil shows great excitement in teaching her little sisters about God, and rejoices every time she asks them, "Do you love God?" and they loudly proclaim, "YES!".  Soleil has been an amazing role model for the little girls, and when you watch her in action with them you can see her love oooze out and help heal the wounds of their broken past.

Dryden is the leader!  You will often find Dryden as the line leader with Mackenzie and Lily trailing her throughout the house dressed up as a "blue princess" and a "pink princess".  Dryden has an amazing imagination just like her papa, which makes playtime so fun and creative for the littles.  Mackenzie and Lily look up to Dryden, and emulate her every move.  The little girls love when Dryden plays school with them, and especially when she reads them books.  She is loving, kind, and gentle.  If Jacques and I are not around, and one of them gets hurt, Dryden is the next person they look to for comfort.  Although Dryden has informed us that if the new baby is a girl she will ignore her since she already has enough little sisters, Jacques and I know this is the farthest thing from the truth!  

This past Sunday, Jacques and I were laughing in the kitchen listening to the four girls playing "orphanage adoption".  The girls were adopting all of their baby dolls from an orphanage, and the sweet (and hilarious) comments coming out of their mouths had us in stitches.  Oh how I wish I had half the concept of abandonment and adoption as they do at their tender ages! 

Mackenzie and Lily truly hit the jackpot 

 when God chose Dryden and Soleil to be their sisters!

‘Truly I tell you, 

whatever you did for one of the least of these

 brothers and sisters of mine, you did for me.’

Mathew 25:40

Baby Rancourt's Heart Check-up!

Yesterday was Baby Rancourt's last heart check up before he or she makes an appearance!  We arrived bright and early to the Children's National Medical Center in Washington DC for an 8:30am echocardiogram.  The baby has a Complete Atrioventricular Canal defect, which is a large hole in the center of the heart affecting all four chambers where they would normally be divided. When a heart is properly divided, the oxygen-rich blood from the lungs does not mix with the oxygen-poor blood from the body. A CAVC allows blood to mix and the chambers and valves to not properly route the blood to each station of circulation.

Dr. Donofrio told us that we will have to be very in tune to the baby's sleeping, eating, breathing, alertness, etc. because within 2-3 weeks of it's birthday, the baby will be in heart failure.  We did learn that if the baby does not show signs that it needs medicine for its breathing and heart, this is actually bad.  If no outward symptoms occur this means that the baby's lung pressures will be way too high, which would indicate the need for emergency open heart surgery.  Dr. Donofrio's goal is for our little one to be at least 2-3 months old before surgery since the teeny tiny newborn hearts do not hold the valve stitches very well for this type of heart defect.

So, as crazy as it may sound, 

we will be praying for our baby to go into heart failure

 and all of the symptoms that go along with it.

We did learn that the baby is estimated to be about 6 lbs 14 oz, and the ultrasound technician said she could see lots of hair.  Jacques and I will believe it when we see it since we have only produced bald babies!  The anticipation of meeting our new son or daughter, brother or sister is running high in our house.  

Stay tuned because the next blog post you see 

about Baby Rancourt #5 will be a birth announcement 

and the revealing of whether the Rancourts will have a 

5th Princess or their very 1st Prince.

  May the God of hope fill you 

with all joy and peace in believing, 

so that by the power of the Holy Spirit you may abound in hope.
Romans 15:13

Lily Grace's Heart Check-up!

Yesterday morning Lily had her Cardiology Clinic visit.  After multiple emails and phone conversations with her Cardiologist over the past two months, I was prepared for "hard".  Several weeks ago, Lily's surgeon decided that the risk of death from another attempt to repair her right pulmonary artery and connect it to her heart was much higher than the slight chance that her anatomy would actually accept the repair the second time around.  Jacques and I understand his trepidation and trust his judgement.  The Cardiologist's are consulting with Children's Hospital of Philadelphia, as well as Boston, just to make sure that nothing is being overlooked at this point.

Lily getting an Echocardiogram

 Lily's special heart!

 One bit of exciting news is that over the past two months, Lily has gained a pound!  Check out her little tummy roll.  A pound might not sound like a lot, but every single ounce counts.

Lily and her fistful of "Clinic Day Suckers"

Lily's resting oxygen saturations were in the 70's during this visit....considerably lower than her goal range of 85-100.  We met with a Pulomonologist who put Lily on two nebulizer medications twice a day for the next few weeks to see if this improves the function of her one lung.  I have also been asked by her Cardiologist to chart her bedtime oxygen saturations to see what they are doing.  He is considering putting her on oxygen during the 12 hours she sleeps at night (yes, we are blessed with two VERY good Chinese sleepers).  The oxygen will give Lily's body 12 hours a day of relief from low oxygen saturations, and the ill effects that these cause long term.  

This visit was so different from all of the other clinic visits we have had over the past 11 months.  Our discussions were focused on pallaiative care, and how to help Lily live comfortably and maximize her time left with us.  Typically, we are discussing surgery options and how to "fix" and "repair" Lily's heart.  Over the next few months we are going to be discussing Lily's options for a heart/lung transplant with several nearby transplant hospitals.  The consensus so far is that her chances of getting a heart lung transplant is about as likely as winning the lottery for #1 her to even get one and #2 for her to survive the transplant. LOTS to pray and ponder because the last time I checked, the lottery was nothing to our God!

After the hospital radiologist gave Lily a tooting Pumba 

(during her long stay),

she gets an absolute kick out of this guy!

 Although Lily is Chinese and Dora is Hispanic, 

the resemblance is remarkable!

As we were leaving the Clinic office, Lily sang "Jesus Loves Me" at the top of her lungs while twirling herself out the door.  The Cardiologist turned to me and said, "Lily is the most healthy looking, very sick child I have ever seen".  I was not really sure how to respond, until I got to the car and it hit me. ..

He gives power to the weak, 

And to those who have no might He increases strength.

Isaiah 40:29

36 Weeks

Every good and perfect gift is from above,

coming down from the Father of the heavenly lights,

who does not change like shifting shadows.

James 1:17

We are the HOPE on earth!

Jesus said, "Very truly I tell you, whoever believes in me will do the works I have been doing, and they will do even greater things than these, because I am going to the Father.  And I will do whatever you ask in my name, so that the Father may be glorified in the Son."

John 14: 12-13

More than just a bow...

Well hello fellow Team Lily prayer warriors and supporters!!! 

This is Emily Wittig, a friend of our dear Emily and Jacques Rancourt. I am pleased to be writing on their "Once Upon A Prayer" blog...a blog that Emily started almost 2 years ago with this convicting verse..."Once our eyes are opened, we can't pretend we don't know what to do. God, who weighs our hearts and keeps our souls, knows that we know, and holds us responsible to act." (Proverbs 24:12)

As Emily and Jacques learned of the very bleak fate of special needs Chinese orphans, they knew what they had to do. With heart and soul, and as God as their pilot, they began their adoption journey.
We have been so blessed to have been allowed on this journey through posts and pictures...yes, we have laughed, cried, and our days have been filled with hope and many, many prayers.

In May 2012, we know that God placed Mackenzie Ty and Lily Grace in the arms of Jacques and Emily. These precious, yet very sick little girls, would finally have family and home...a home full of love, wackiness, and one of serving the Lord.

As we have witnessed God's love and blessings for this family, we have been quick to realize that the journey is not over...it is one filled with many joys and many challenges, especially medical ones.
Most of you know that Lily Grace has been in the hospital with extended stays involving many complicated heart procedures and related issues. Her last stay spanned over 2 months and our prayers sometimes turned into pleas. Our God answered with, "Yes, Lily has more living to do."

Out of our love and support of Lily and family, and her love of a yellow bow, the LilyStrong bow and motto was "birthed" from our own JT Smith (Manassas Baptist Church goer)! We all loved it and were so ready to display it...our Facebook profile pics became a sea of bows...bows that stood for great love, hope, and strength!!

In continuing with this theme of love and support for Lily Grace and the Rancourt family, we now have shirts. Yes folks, WE FINALLY HAVE SHIRTS!! These LilyStrong shirts will be worn by many folks near and far!! The profits from the sale of these shirts will be donated through the Morning Star Foundation for Lily's mounting medical costs.

I have teamed up with "xPress It!", a family owned company that is also a part of our church body that care deeply for the Rancourts. They have been so kind to give us the best prices so more monies can be donated.

You will need to contact me at EJWittig@aol.com to ask questions or place your order.  In your e-mail, please supply me with your address and preferred method of payment when you are ready to order.  I will need those zip codes to calculate shipping.  Locals can pay cash or checks. Out-of-towners can pay with checks and will have a Paypal option with added fees (to cover the paypal charge).

This is a preorder and once you have ordered and paid, your shirt will be made. We already have spotted LilyStrong shirt wearers and it's exciting,y'all!! We are called to serve and I think this is a fabulous way of doing so.

Listed below are the sizes, colors, and costs for our Lily Strong shirts:
 

All styles come in the colors of Coral Silk, Charcoal, and White. 

 There is an added color for Youth..."Lily's Choice" Green!!

Adult S-XL ($18.00) 2X,3X ($20.00)

Lady S-XL ($18.00) 2X,3X ($20.00)
The lady style is more of a feminine one

 in the neck and sleeve and is more tapered.

Youth XS(3/4), S(6,8) M(10/12) L(14/16) 

All youth sixes are $12.00

I look forward to hearing from you and request that you Facebook me and Emily Rancourt a picture of you, your family, or group wearing your shirts. I will include it in our LilyStrong Album.

Again, my contact e-mail me is: EJWittig@aol.com

WE ARE LILY STRONG!!! 

Mackenzie Ty turns 4!

Four years ago today, a little girl was born in China.  

This little girl had two things going against her from day one.  

First, she was born a girl.  

Second, she was sick.

Her birth mother bundled this precious little girl up in a yellow baby outfit, and wrapped her in a light colored blanket/quilt.  She had no choice but to leave her newborn baby girl on a bench in the emergency treatment center of a hospital in Shanghai, China.  On the bench next to her baby she left a bottle, formula, two sets of cotton padded clothes, and two sweatshirts.  Perhaps the most precious gift she could have left for Jacques and I was this note:

 English Translation:

This is a girl born on February 8, 2009 (Lunar calendar) at 7 am.  Because our family is poor and cannot afford to seek medical treatment, I have no choice but to leave her here. Someone with a good heart please take care of her, my family and I will be extremely grateful.  Because her illness may threaten her life, please do not delay.  From, A Helpless Person

Today, as we celebrate Mackenzie's fourth year of life, Jacques and I are well aware that a woman in China will be wondering if her baby girl is still alive, and if someone with a good heart is taking care of her.  My prayer today is that God will whisper into this woman's ear that not only is her little girl alive, but that she is absolutely thriving, treasured, and loved beyond what words can adequately express.

 After languishing in the Shanghai orphanage for three years and two months, I remember that sinking feeling I felt the moment Mackenzie's 18 lbs of skin and bones were placed in my arms on May 7th, 2012.  Her eyes were vacant of emotion, and her body was rigid from the unfamiliarity of a mother's touch.  I kept wondering...could we ever break through to this little girl?

Almost 10 months later, and 8 pounds pounds heavier,

Mackenzie is still tiny but mighty!  

Her joy and loving spirit leaks out of her all day long. 

Happy 4th Birthday Mighty Mack!

We love you to China and back.

Thanking God for setting this precious treasure in our family!

"A father to the fatherless, a defender of widows, 

is God in his holy dwelling. 

God sets the lonely in families." 

Psalm 68:5-6a