Never Give Up!

Day 4 - Morning

The goal for Fontan patients is to get the breathing tube out as soon as possible after surgery.  The initial plan was to extubate Lily on Friday evening.  Obviously, with all of the complications she had it was not possible to take her breathing tube out.  The problem with keeping the breathing tube in is that they suspect this is a huge contributing factor to her dangerously low blood pressure.  As of right now, Lily is on the pacer which is keeping her heart rhythm sinus (normal), and her blood pressure normal.  She is on the maximum dose of Procainimide (medicine to help with her irregular heart beats), Lasix & Diuril to remove her fluids (Lily is REALLY bloated), Heparin to thin her blood since they suspect she has a clot covering her fenestration (4mm hole created on purpose by the surgeon to release pressure), and Presidex for sedation with the occasional Fetanoyl bolus for pain.

After rounding this morning, the doctors decided that they would like to see Lily come off of the breathing tube to see if this helps with her low blood pressure.  They have lowered her breathing machine rate to see if she can tolerate it, and hope to test her this afternoon to see if she can breathe on her own for an hour before they remove her tube.  Lily would LOVE for her breathing tube to come out.  She is very alert at times and points to the tube and then the door.  I can only suspect that baby girl is saying, "Get me out of here Momma!"

Please nobody tell on me...

I haven't changed Lily's bow yet today ;-) 

He performs wonders that cannot be fathomed,
miracles that cannot be counted.
Job 5:9

Day 3 - Lily Hates "Nigh Night"

Miss Lily has had a very rough couple of hours. Her rhythms were irregular, blood pressure all over the place, and her temperature is rising even though she is on a cooling blanket (probably a low grade fever). My conclusion is that Lily just does not like the night time. Lily is very aware of what is going on since they are experimenting with her sedation. She is agitated a lot, and searches for me frantically as soon as she opens her eyes. The nurse said her body language shows that she is in pain. Lifting up my little girl to the only one who can bring her comfort right now.

He gives power to the weak, 

And to those who have no might 

He increases strength. 

Isaiah 40:29

Day 3 - Slow and Steady

I would describe today as slow and steady.  Lily has been fairly stable for most of the day.  They have finally been able to warm her to 96.8F as long as her Procainimide (heart rhythm medicine) is WAY up.  Our sweet girl was pretty agitated for much of today since they want her to have more "awake" time, but with that comes discomfort.  Our goal is that Lily stays stable throughout the night, and that she goes a lot of "Ni Neu" (pee pee).  Our prayer is that they can extubate her sometime tomorrow.  Lily wants that yucky tube out of her nose!!!!

Our beautiful miracle girl...

The Lord your God is with you, he is mighty to save.
He will take great delight in you, 

he will quiet you with his love, he will rejoice over you with singing.
Zephaniah 3:17

Every Life Has Purpose

Thank goodness the word "terminal" is only an earthly term.

It is not a scary word really, since our flesh is temporary

and we are all essentially terminal.

A common question I get asked by doctors who meet Lily for the first time is, "Did you know how complex her heart was when you adopted her?"  Imagine their shock when I tell them that we chose her specifically based upon how gloom and doom her medical prognosis was.  This third open heart surgery that Lily just had ultimately will not "fix" her heart.  Lily Grace still has a long road ahead of her medically speaking with lots of uncertain bends and curves.

 

Every life has purpose.

And this is the way to have eternal life--

to know you, the only true God, 

and Jesus Christ, the one you sent to earth.

John 17:3

Miracle #1

For where two or three gather in my name, 

there am I with them.

Mathew 18:20

Lily is on a medicine to keep her heart rhythms steady that is finally working. At 6pm they took her off the pacer, and she is doing really well! About a half hour ago Lily lifted her hand looking for mine, and even opened her eyes and nodded her head at my prompts. Happy happy tears in CICU Room 383! They are trying to warm Lily now, and this is typically a catalyst for problems...keep those prayers coming friends.

 I am humbled and stand in awe at how the body of Christ has surrounded our daughter Lily in prayer.  I continue to tell Lily about all the people who love her and are praying to God for a princess sized miracle just for her!  If you know Lily, you know she likes that.  Also, all of those encouraging and comforting bible verses many of you have sent are being whispered into Lily's ear.  Lily's nurse last night and tonight is a Christian, and she has been a wonderful support to me through these long "alone" hours.  Coincidence that she would be Lily's nurse...I think not!

 

Day 2 Afternoon Update

This morning, the cardiologists decided to start a medication to regulate Lily's heart rhythms.  It seemed to work for awhile, but then her rhythms started doing wacky things again.  Lily is still paralyzed, and they are currently cooling her body temperature to 93.2F since her heart rhythms and blood pressure prefer a cool temperature.  

Her surgeon came to talk to us, and he suspects that either she has a blood clot covering her fenestration (a 4mm hole he created on purpose to relieve pressure) or that the fenestration has closed itself.  Lily is on Heparin, which is a blood thinner, in order to break up the clot if one does in fact exist.  The position of Lily's unique heart has made it impossible for the echocardiogram to "see" the fenestration through imaging.  If her stats continue to decline, Lily will need to be taken back to surgery to get a better look at what is going on.  The surgeon is hoping we do not have to go this route since her little body is already struggling, and another procedure would be very difficult on her right now.

In the midst of all of this, I am reminded of the 10 long months that Jacques and I literally "fought" to bring home our daughter.  I remember lying in bed awake many nights wishing, hoping, dreaming that I could be with my sweet Lily girl.  

And here we are, by her side.  

There is nowhere in the world I would rather be right now

than hand in hand with my precious baby girl.

Papa with his Princess #4

I love you Lily - all the way to China and back!

Kisses from Papa <3

The Lord says, “I will rescue those who love me.
I will protect those who trust in my name.
  When they call on me, I will answer;
I will be with them in trouble.
I will rescue and honor them.
I will reward them with a long life
and give them my salvation.”

Psalm 91 14-16