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