Day 69 - MIRACLES

This is the post I have been dreaming about writing for 69 days.  I have spent many sleepless nights formulating just the right words to say when this day would come.  And here I am, bursting with HOPE, and JOY, and PRAISE...and all of those words are eluding me!

What I can share with you is this...God has performed a miracle in "our" Lily Grace.  There is no medical explanation as to her miraculous recovery.  NONE!

On Monday, January 14th, Jacques and I walked alongside Lily's hospital bed as they took her off to the Heart Catheterization lab to work on her heart.  I was so excited about the huge potential for healing that this procedure held, and was hopeful that by creating a hole in her heart (fenestration) to relieve the pressure, this would also be our ticket home. 

Instead, the heart cath nurse came out many times during the procedure to update us on Lily's progress, and it was never good.  Lily needed a blood transfusion very early on (more of Papa's blood), and her blood pressure was so low that team became very nervous.  The surgeon had four goals that he hoped to achieve through the procedure, but ended up only doing one...the most crucial one, which was to create a 6mm fenestration and use two stents to hold it open.

During this heart cath we were also given the news that the 4th open heart surgery that Lily had on December 14th to attempt to reattach her right pulmonary artery to her heart (in the hopes of restoring blood flow and oxygen to her right lung) had failed.  The surgeons also reiterated to Jacques and I that Lily was really "sick".  REALLY, really sick.  They prepared us for what we would see in the recovery room.  I just kept thinking about how awful she looked over the summer after her Fontan procedure, yet nobody "prepared" us for what we would see.  They actually told us that she "looked really good" back then.  No words or explanation could have prepared us for what we were about to see.  The anesthesiologists had pumped her so full of fluids to keep her alive that Lily was completely unrecognizable to us.  Her legs were purple from the waist down, that initially worsened every hour.  Deep, dark, purple.  The doctors were unable (for days) to even get a pulse below Lily's groin.  Lily remained on a ventilator for 5 days after the heart catheterization.  Children with her anatomy do not do well on a ventilator, and it is always the goal to get her off the vent immediately after surgery.  For days, everyone (nurses, doctors, surgeons), kept uttering the words, "Lily is very sick".  Jacques and I are not strangers to the medical wold now. 

We knew that they meant our sweet baby girl was dying.  

Right before our eyes.

 
Hours after the heart cath, it was discovered through an echocardiogram that Lily's fenestration had clotted over.  We were now faced with the reality that Lily had a 6mm clot in her heart.  It was decided that any attempt to break up the clot would cause immediate death.  Lily still has this clot in her heart.  She is on high doses of anti-clotting medication in order to prevent future clots, but it will not help with the large clot she already has. 

While still in ICU, Lily began to make very small improvements, followed by huge setbacks and roadblocks.  Fast forward a couple of weeks.  Due to high spiking fevers of unknown origin, they decided to remove Lily's chest tubes.  Lily has had multiple chest tubes over the past 9 weeks. Her pleural effusions were so bad that on most days she was dumping 1,000ml of fluid from her chest.  The team discussed with us that perhaps these chest tubes had caused an infection, as evidenced by the fevers, and needed to come out.  So, this past Monday, the chest tubes came out.  We talked about the probable need to replace them within the next few days.

BUT...God had a different plan.  For no medical reason or explanation, Lily's lungs have began to improve on their own, without the help of chest tubes.  Every morning Lily has a chest x-ray, and every day so far this week, her x-ray has looked improved.  Yesterday, they even removed her oxygen!  Lily does well without the oxygen while she is sitting in bed, but when physical therapy came in she became very blue and her oxygen level dropped into the 60's when she stood up or walked a few steps.  This could be due to the fact that she only has one functioning lung, or perhaps that she just needs more time to recover. 

Yesterday, the nurse practitioner actually said the "H" word to me...HOME!  I burst into tears.  The current goals are to get Lily's Lovenox injections (anti-clotting medicine) to a therapeutic level, get Lily to eat (she has not eaten anything but ice chips in over 3 weeks), wean her completely off the methadone, watch her lungs for fluid accumulation, and monitor her electrolytes and sodium which have been a major issue this past week.

THANK YOU prayer warriors from the bottom of our hearts!  We are in the HOME stretch now...please continue to pray our Lily Grace home.  Our family is desperate to be back together again!!!

You, my friends,...

have had a front row seat to a MIRACLE!

 

LILYSTRONG

Now to Him who is able to do immeasurably more than all we ask or imagine, 

according to His power that is at work within us,  

to Him be glory in the church and in Christ Jesus throughout all generations, 

for ever and ever! Amen. 

Ephesians 3: 20-21

Safe in my arms...

Last night (Sunday) was one of the roughest nights we have had yet.  Impossible you must think...no, not impossible.  Lily's chest tubes hardly drained all week, and the doctors took this as a "good sign" that perhaps her pleural effusions were clearing up.  But Mommy knows best, and I knew otherwise.  Lily's breathing sounded crunchy, and her breaths were extremely labored.  I held a towel under her chin for hours as she coughed and gagged and cried.  The only thing I could repeat over and over was, "I know baby girl...I am so sorry!"

Lo and behold, Lily's chest X-ray from this morning was HORRIBLE!  Not only were her pleural effusions on both side huge, but both of her lungs are now full of fluid.  The nurse striped and flushed her chest tubes which caused terrible pain and discomfort.  The right chest tube starting dumping some of the fluid, but the left one has not budged all day.  As a matter of fact, some fluid has leaked onto her t-shirt, which means it probably has a kink somewhere under the bandage.  With the help of some pain medication, Lily had some great moments today.  They were followed by tears and silence, but we capitalized on those good moments.

Tomorrow morning we will see what her chest X-ray looks like.  We are also waiting on some lab results that have not been processed yet because it was a holiday weekend.  I will not say anything more about this because what I have to say is NOT NICE.

The best part of my day...

even if it was 2pm and I was still in my pajamas.

Safe in my arms!

Lily Strong

Last night was terrifying for me.  Lily was taking a nap when all of a sudden she woke up screaming for me.  I got up out of the chair next to her bed, confused as to why she was looking right at me but had no clue I was there.  I consoled her thinking it might be a nightmare when her panicked voice said, "Mommy, I cannot see you".  I got closer to her face and said, "Lily, mommy is right here, can you see me now?"  Sadly, her panic and anxiety only grew and she screamed, "I am upside down...help me Mommy....I am upside down!"  I ran out of the room in search of a nurse.  The ICU nurses are always right there, but no one could be found.  I finally located one and told her Lily needed a doctor immediately.  Within seconds two doctors ran into her room and started accessing the situation.  My mind was running a million miles a minute.  "Please God, no, don't take our baby", was on repeat in my head.  A desperate prayer straight from a terrified mother's heart.

With Lily still having a 6mm blood clot in her heart, the reality is that at any point and time the clot, or a piece of the clot can dislodge and go to her brain.  I have tried, and succeeded the past few days of pushing this reality out of the forefront of my mind.  But it is always there.  It will probably always be there.  The CT scan showed no major brain bleeds or blood clots.  However, the doctors are still concerned since the CT scan is not effective at locating minor bleeds or clots.  It was also discovered last night that her antithrombin 3 levels are very low, even with the high doses of heparin she is receiving.  They gave her an extra bolus of heparin, and started her on additional IV blood thinners.

 Lily is in a lot of pain.  She has been vomiting since Friday morning, has extreme diarrhea with belly pain, excrutiating pain in her head,  weakness, and an overall "yucky" feeling.  In the midst of how horrible she felt, this morning Lily spontaneously said, "Mommy, I love you!"  This began one of the sweetest conversations I have ever had with her.  I love this child with every ounce of my being.  Lily is truly the strongest, bravest, most determined to live and "get outta here" little girl I have ever met.  

I don't know what God's plan is for her life, 

but I do know that being her mommy has transformed my life. 

 I will never be the same...PRAISE GOD!

 

 

 

Lily is the Boss

If there is one thing the ICU doctors have learned about Lily since they first met her in July, it is that she is the boss!  Children who have Lily's type of heart defect, especially with the Fontan, do not do well overall while they are intubated and on a ventilator.  The flow from the vent really messes with their pressures.  However, Miss Lily's body is insisting, much to the doctors and surgeons dismay that she is perfectly happy on the vent.  Except for when she "wakes" up and tries to pull it out, while violently shaking her head at me...all the while demanding water!  Yes, this is true <3

The surgeons and hematologists decided that using the TPA to attempt to break up the blood clot in Lily's heart was a bad idea.  Since the clot is quite large at 6mm's, they all felt that the risk was way to high for her to suffer a massive stroke and death.  After running an additional blood test this morning, they discovered that Lily has a hereditary disorder called antithrombin 3.   Antithrombin 3 deficiency is a disorder of blood clotting.  People with this condition are at a higher than normal risk for developing abnormal blood clots.

So for now, Lily will remain heavily sedated and intubated.  The hope and goal is to get her off the ventilator by tomorrow evening or Friday.  Tonight, they decided to turn off the cooling blanket and see if she can maintain her stats as her temperature begins to rise.  Fingers crossed, and prayers sent up!

In the day when I cried out,

you answered me, and made me bold with strength

in my soul.  Psalm 138:3

Day of Rest

Today has been a day of rest for Lily Grace.  Tonight she still remains in critical condition, heavily sedated and intubated.  Since the discovery of the blood clot in her heart this morning, the cardiologists, surgeons and hematologists have been discussing a course of action.  Today they have decided to use high doses of blood thinners to attempt to dissolve the clot.  This tactic will be re-evaluated in the morning if it has not changed.  Lily's blood pressure is being maintained through dopamine and epinephrine.  Her heart rate is still extremely tachacardic (fast) and that is being helped by Milrinone...used for patients suffering from heart failure.  Lily's ventilator is giving her oxygen and nitric oxide gas.  Lily is on a cooling/heating blanket to keep her temperature at 35 degrees Celsius...brrrrrr! 

Rest our sweet girl, rest.

Evening and morning and at noon will I utter my complaint 

and moan and sigh, and He will hear my voice. 

Psalm 55: 17
 

Blood Clot

Lily is still in critical condition.  She will remain sedated and intubated.  An echocardiogram this morning showed a large blood clot in Lily's heart.  The surgeons are meeting to discuss the next course of action. If they attempt to dissolve the clot, the risks are high that pieces will dislodge and cause a stroke.  If they leave the clot, Lily also runs the risk that it will dislodge and cause a stroke.  

Right this very moment, Lily is being held in the arms of Jesus.  He knows what is best for her, and loves her more than Jacques and I can even fathom.  We are trusting that His ways are always perfect, and that no matter what He is always good.  Just ask Lily who knows what it means to be deeply loved and cared for by a mommy and Papa.

 Please continue to hope and pray for a miracle with us!

 This is what it means to be loved...

 

Let the Healing Begin...

Lily is the second surgery slot of the day...

10am EST.

Let's get this family back together again!!!

 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

Heart Catheterization tomorrow!!!

Who knew that when the cardiologist came to tell me this morning that Lily will have a heart catheterization tomorrow, it would absolutely MAKE MY DAY!  Just the thought of a heart cath used to scare me into a tizzy.

The good news is that tomorrow, the surgeon will create a hole in Lily's heart that will hopefully relieve the pressure that is causing her to lose 1,000 ml of fluid from her chest tubes everyday.  Originally, they wanted Lily to be cleared from her C-diff bacterial infection first, but that has only gotten worse over the past week.  Lily is now having bloody diarrhea even on the two antibiotics.  

This infection is nasty!  

The bad news is that the reason they are bumping up her heart cath is because Lily has developed new pockets of fluid outside of her lungs that are not being drained by the chest tubes.  Lily is out of breath and coughs every time she tries to speak. During the heart cath, the surgeons will also drain all of the extra pockets of fluid that have formed outside of Lily's lungs.

HOPE & PRAY

this is the solution to Lily's problem.

Now faith is being sure of what we HOPE for 
and certain of what we do not see.
Hebrews 11:1

Back to ICU...

Lily had an off day today.  I knew that something was not right.  She slept almost the entire day, and her heart rate and respirations per minute kept creeping up slowly but surely.  The nurses were completely aware, even more so because I mentioned it every time they walked in the room...hey, after 7 weeks I think I am entitled to be a nudge now and again.

My sweet friend Jan brought me dinner tonight.  We were sitting at the table in Lily's room around 8pm when all of a sudden Lily started screaming and then grabbed her neck and said, "Mommy, I can't breathe, I can't breathe."  I hit the nurse call button, and our nurse and the charge nurse came rushing in the room.  By this time Lily was writhing in pain and now grabbing her belly.  Lily's heart rate was around 180, her respirations per minute were about 55, and her oxygen dipped into the low 70's.  Within minutes, a herd of specialists rushed into the room.  They got a stat chest and abdominal x-ray.  Every time one of the doctors put their stethescope on her chest and belly, Lily screamed and arched her back.  The pain she was experiencing was so intense and scary.  Over the past 7 weeks, the doctors and nurses have listened to her lungs and belly hundreds if not thousands of times.  Something was terribly wrong.

Before I could even grab a few things, Lily was whisked away to the Cardiac Intensive Care Unit with me running (ok, maybe more like waddling) behind the bed trying to keep up.  Our favorite ICU Cardiologist is working tonight, and he started ordering tests and all sorts of fluids and antibiotics to be started on Lily.  Due to what appeared to be air in her abdomen from the stat x-ray, the Cardiologist called for another x-ray to get a better look.  The second x-ray did not show what he thought might be air, so he said at this point that is not an urgent concern, but it still worries him that she may have air in her abdomen where it should not be.  An echocardiogram was performed, and the fluid around Lily's heart is still present.  The main concern right now is that Lily may have sepsis from the C-diff infection that she is fighting.  They drew blood, and started her on a second antibiotic called Vancomycin just in case.   Sepsis can cause multiorgan failure and in many cases death.  Unfortunately, the lab results are not immediate, so we must be patient and pray like crazy that Lily does not have this complication.

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

There we will find his mercy, and we will receive grace to help us

when we need it most.

Hebrews 4:16

7 weeks

When we walked into the hospital 7 weeks ago for what we thought might be a short stay for a chest tube placement, NEVER in a million years did I think I would be sitting here typing this blog post tonight.  I actually laughed at the women in admissions when she handed me my visitor's badge that said it expired on 12/23/2012.

"Surely, we won't be here that long", I voiced.  HA!

Lily has endured so much in the past 7 weeks to include 4 chest tube placements (2 on each side), an open heart surgery through throacotomy to attempt to reattach her right pulmonary artery to the gortex tube in her heart called the Fontan, an NG tube for feeding, a chest x-ray every...single...day (sometimes multiple times a day), blood draws every...single...morning, a new IV placed on average every other day, a PICC line, IV antibiotics to treat a bacterial infection, which ended up leaving her susceptible to C-diff that she acquired, a bleeding tushie from diarrhea, multiple echocardiograms, and several episodes of learning the hard way that she is very allergic to morphine, oxycodone, and ativan.

Lily spent her first Thanksgiving and Christmas 

"stuck", as she says, in the hospital.

Lily was a trooper and smiled through just about everything for the first 3 1/2 weeks.  And then she realized she was DONE!  The sweet smiles, and "sher sher" (thank you in Chinese) are gone.  I can't say I blame her, as I have felt the exact same way.  The difference from our first extended hospital stay over the summer while Lily recovered from her Fontan surgery and this stay, is that over the summer she made daily progress toward going home.  This time around, we continue to experience setback after setback.  Lily begs, "Get me outta here Mommy" incessantly, and cries for me to take her home several times a day.  The only thing that brings her joy right now is when we discuss how we will bust out of here once all the "yuckies" are out of her belly and lungs.

For a little girl who has only known what "home" is for 7 months, she really has a solid grasp of it.  Even through our darkest hours here, I still find myself smiling because after all, that was what Jacques and I so desperately wanted and desired for Lily since the day we saw her precious face.  We wanted Lily to KNOW and experience the unconditional love of a family, and learn that she is s cherished child of God.  Even at the young age of 3, she gets it, and perhaps appreciates her family more than most grown adults even do. 

The nurses here are amazing.  They truly love Lily, and take such good care of me even though I am not their patient.  They treat us like royalty.  There is no doubt in my mind, that I would have gone absolutely crazy without their concern and compassion. 

So, what happens from here?  Lily's electrolytes, potassium, sodium, and albumin are still dangerously low.  She will continue getting her main nourishment through the NG tube.  Lily's appetite has increased, and she craves "salad with dress-up" (balsamic vinegarette) for breakfast, lunch and dinner.  Her resting heart rate ranges from 155-170, and her respirations are about 50 per minute...obviously this is not good at all.  Her chest tubes drain between 700-1,000 ml per day.  The most current plan is for Lily to have a heart catheterization next week in order to open the man-made hole in her heart, called a fenestration.  The hope is that this will help her pleural effusions to stop.  Unfortunately, this is only a temporary fix since the fenestration will eventually close again on its own.  We will pray that when her fenestration closes, Lily's body will accept the new anatomy that Dr. Jonas gave her over the summer.

Why?  Because her life depends upon it.  

Please pray!

Mackenzie's Endo Appointment

A few months ago, Jacques and I made the decision, at the urging of a geneticist, to get genetic testing done on Mackenzie.  We were told by China that Mackenzie had several congenital heart defects along with another sensitive need that I will leave out for her privacy.  At our consultation with the geneticist, it was unclear to him what was the result of institutional issues such as severe neglect and starvation, and what could potentially be the result of a genetic disorder.  The test cost $3,000 and our health insurance would only cover 80% of the fee.  We felt that in order to best help Mackenzie succeed in life, the expense was well worth it.  After a four week wait, the results were in!  Much to the geneticist's surprise, Mackenzie was diagnosed with Turner's Syndrome.

Turner syndrome (TS) is a chromosomal condition that describes girls and women with common features that are caused by complete or partial absence of the second sex chromosome.  TS occurs in approximately 1 of every 2,500 female births and in as many as 10% of all miscarriages. 

We have a checklist, and are taking Mackenzie to a lot of specialists to determine which aspects of the TS affect her.  Today, Jacques took Mighty Mack to the Endocrinolgist.  The doctor recommended that we start Mackenzie on growth hormones as soon as possible.  He predicts that Mackenzie would only reach a maximum of 4'4" without growth hormones.  Our goal will be to get her to at least 4'10"...which is probably unlikely, but a good goal nonetheless.  Once Lily and I return home from the hospital, a nurse will come to our house and teach Jacques and I how to administer a shot everyday to Mackenzie's tushie or thigh.  Mighty Mack will need these daily shots until she reaches the age of 13 or so.  At the age of 13, Mackenzie will transition to an estrogen injection that she will need in order to force her body into puberty. 

Even though this diagnosis came 

as a complete unexpected shock to us, 

check out this face.  It screams "I AM SO WORTH IT!"

"For God has not given us a spirit of fear, 

but of power and of love and of a sound mind."

II Timothy 1:7

Tax Deductible Donations for Lily's Medical Expenses

Thank you so much from the bottom of our hearts to those of you who have so generously donated to Lily's medical expenses!!! A foster home in China (and Uganda) called the Morning Star Foundation focuses primarily on caring for orphaned, abandoned and needy children with severe heart disease, most of whom have been given no hope. The founders, Bill and Lynsay contacted me and said they wanted to help us out. They have offered to make your donations from here on out for Lily's medical expenses TAX DEDUCTIBLE!!! You can also read more about Morning Star and their amazing ministry by clicking on the button that is on the right hand side of our blog!

To make a tax deductible donation 

to help us cover Lily's medical expenses, 

please click on the heart (with Lily's favorite color green bow)
that is located on the right sidebar.

In everything I did, I showed you that by this kind of hard work we must help the weak, remembering the words the Lord Jesus himself said: ‘It is more blessed to give than to receive.
Acts 20:35 

And My God WILL Supply My Needs...

Hi sweet friends of Lily and the Rancourt family,

This is not Emily.  This is a friend of hers.  My husband and I were in China at the same time as Jacques and Emily to pick up our sweet daughter.  I will never forget the day we met Lily.  We had decided to introduce our Katherine Hope to the pool and were sitting on the steps sticking our feet in the water.  We looked up to see what looked like a UFC fighter bringing 2 tiny little girls for a swim.  I'll be honest, I was taken aback.  It was rare to see a father venturing out by himself with one newly adopted child, but the whole time we had been in China, I did not see a dad brave enough to try two...especially near water.  It didn't take long to realize that Jacques was no ordinary dad.  He loved on, played with, and introduced those girls to the water like he had known them all their lives.  We caught a bit of their story as our girls played together.

Lily Grace had been labeled "terminal" in China.  Her rare heart condition meant that the Chinese hospitals would no longer treat her.  I will never forget our amazement at the fact that this brought Jacques and Emily running TO her, not away from her.  You see, my husband and I had been scared to death to even enter the "special needs" program at all.  We didn't know what we could handle or if we could handle... We wrestled with the questionaire that asked us to narrow down our list of issues we would accept.  I truly believe that EVERY child is worthy of love and a home and a family, but I was terrified at what God might require of us if we left certain issues open.  Our form stated that we were open to minor and correctable special needs.  Yet here, staring me in the face, was a family who had laid down their lives for these little girls.  I know that they had no idea yet the extent of what God had called them to, but they went and they obeyed. 

As a result, Lily Grace has seen the best days of her life...and now she is in the midst of the worst.  I have a great imagination, so it is very difficult for me to think very hard about what Lily is going through right now.  It is even more heart wrenching to consider what her mom and dad and her sisters are currently facing on a daily basis.  Yes, our Kate has required a couple of casts and a few days in the hospital and even just those short periods of time were trying and wearing on our family.  I know beyond a shadow of a doubt that Jesus is very present with these precious people, because if He wasn't this would certainly all be a disaster.  Instead it has been an example of His grace and His glory.  That little redeemed girl laying in that hospital bed is God's glory in the flesh and so is her precious family.  We cannot take these things lightly.

For that reason, I have hijacked this blog.  While praying for the Rancourt's recently, I asked God what I could do besides pray.  I know prayer is the most powerful thing that we can do, but it feels so helpless to sit around and pray.  Sometimes that helpless feeling is a call to do more...and only God knows what more we can do.  In this particular time with the Lord I felt the burden of the debt that the Rancourt's must be compiling with the medical procedures and overnight stays that have been necessary.  Kate was only in the hospital a total of 4 days and we are still paying on her bills.  Yes, we have insurance, as the Rancourt's do, but as most of you know, insurance does not cover 100%.  There are deductibles and co-pays and percentages of the bill that fall on the insured.  I do not know the extent of this debt, but I do know that it is heavy and that it is growing every day.  I know that I cannot make much of even a splash in this filling pond, but I do know how powerful it is when God's people join together.  There is a need and God WILL supply it... through you and through me.

There is a place to donate on this blog through Paypal. You can also send monetary gifts to:  National Children's Medical Center
Heart and Kidney Unit
Lily Rancourt
111 Michigan Avenue NW
Washington DC 20010. 

 I come to you tonight to ask you to not just pray for Lily, but to help with this mounting debt as well.  Only God knows how much you can afford to give, but I know that if everyone following Lily's progress gave something we might see yet another miracle take place is this baby girl's life.

When God calls us to something, He supplies...so I have no doubt that He is in the process of supplying.  Praise Jesus that Jacques and Emily said "yes" to Lily and "yes" to MacKenzie!  Thank the Lord for their example of obedience to all of us.  I have been inspired by the example set by this family, and I know that you have too.  Let's be the body of believers to them...the hands and feet of Jesus.

God bless you all and Jesus, please heal our Lily and send her home soon.  She has a lot of living to do.

She's Worn

He gives power to the weak, 

And to those who have no might He increases strength. 

Isaiah 40:29