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