Once Upon A Prayer

Monday, July 30, 2012

Day 18 - Always Wanting More

Let's start off with the good news!

After Lily was on the two "ouchy" IV antibiotics for 48 hours her white blood cell count came back normal, and her fever disappeared.  Yahoo!  The infection is gone.  Lily has also been able to get up and out of bed quite a bit over the past few days, which has kept Mommy very busy.  

Happy...but busy!

Lily was doing so well, that the rumor on the floor was that if she stayed fever free for 12 hours , and stayed off oxygen, she would be able to go home on Sunday.  I thought for sure this was it.  We were finally going home.

Not so fast...

A few hours after Lily fell asleep on Saturday night, her oxygen saturation dropped dangerously low and stayed there.  The nurse and I both sat by her bedside watching the monitor, knowing full well that if she put the oxygen back on Lily, we would not be going home the next morning.  Somewhere around 30 minutes later, the nurse looked at me and said, "I am so sorry.  Lily is not coming out of this desaturation, she needs oxygen".

Sunday morning's x-ray showed fluid in Lily's left lung.  The surgeons decided to watch Lily closely over the next 24 hours to see what would happen.  The next 12 hours showed Lily's heart rate to be very high, and her oxygen saturation to dip quite low with hardly any activity.  Just like the night before, a few hours after Lily fell asleep, her oxygen saturation inched its way down until it hit 54 and stayed there.  The nurse and I propped Lily up on some pillows, and raised her bed quite a bit.  Lily was able to bring up her saturation's on her own to 70 without any oxygen.  Without her being on a monitor, Jacques and I would never have known she needed to be propped and moved in order to breathe.  That really scares me.

Over this past week, I have found myself always wanting more.  We adopted Lily knowing that her life on earth might be short.  The Cardiologists and surgeon gave us hope, but never a guarantee.  We also knew this this third open heart surgery would not "fix" Lily's heart.  This surgery might buy us some time, but then again, it might not.  When I prayed to God for his grace and favor to make Lily our daughter, I promised him that I would love this little girl with all that I had in me even when it hurt.  I would cherish every moment we spent together, and I would make sure she understood that this life on earth is not the end.  

As I watch my precious baby girl sleeping in the bed next to me I am reminded that just eleven weeks ago, Lily was a little orphan girl that the nannies called, "Yar".  She had no hope, no chance at healing, and no future.

Tonight, Lily is our daughter...
a sister...
and an inspiration to everyone she meets.

We are troubled on every side, yet not distressed; 
we are perplexed, but not in despair; 
2 Corinthians 4:8

Friday, July 27, 2012

Day 14 - Small World

This morning I took Lily to the toy room to play.  A beautiful Asian girl was sitting at the table drawing a picture next to her mom.  The mom and I began talking and discovered that both of our girls are Inner Mongolian Princesses! 

Can you say goosebumps???

The little girl is named Kathryn, and she is eleven years old.  Two days ago she had her pacemaker replaced, and she looks fantastic.  My eyes welled up with tears the entire time I spoke to her mom.  How awesome is our God?  After hitting a scary road block yesterday, He could not have sent me a sweeter gift than to meet this precious little girl from Lily's China province.  As massive and far reaching as our world seems sometimes, I am absolutely humbled by how God continues to move mountains and send me Godwinks when I need them the most.

"We will not hide these truths from our children, 
we will tell the next generation 
about the glorious deeds of the Lord! 
About his power and his mighty wonders." 
Psalm 78:4

Thursday, July 26, 2012

Day 13 - Blessing in Disguise

I don't think I have ever been as happy to see a fever as I was today.

For those of you who know me well, 
you are probably thinking that 2 weeks in the hospital
has completely robbed me of my sanity.

Maybe it has.
I absolutely HATE when my girls have a fever.
It makes me nervous, and breaks my heart.

Here's the story:
Lily spiked a fever yesterday.

The nurses put her on Motrin every 4 hours.  The IV Therapy team came in and drew blood to send it off to the lab to see if any bacteria would grow.  They also had Lily do a urine collection.  This morning, the charge nurse was so excited that Lily was no longer  spiking fevers, which seemed strange to me.  Motrin typically does the trick of reducing fevers, and Lily had been on it around the clock!  Regardless, the nurses said that she "looked" great.  One of the difficult things to explain to people is that Lily is often times stoic.  Just because she is not screaming and crying, does not mean that she feels alright.  

So today, the plan was to try Lily on room air again, and if she could maintain her oxygen saturation at 75 or above, they would send her home tomorrow.  Lily fluctuated from 65-82 all day long.  The nurses were pleased with this.

Home?  Really?  
Sounds too good to be true.

This afternoon Lily spiked another high fever.  Thank goodness this happened in the hospital, and not right after we arrived home.  The surgical team decided to start her on a strong antibiotic for the next 48 hours.  Shortly after we were given this news, the charge nurse came in and told us that she had just received a phone call from the lab, and Lily's bloodwork from yesterday was positive for a bacterial infection.  Tomorrow we will find out exactly what type of bacterial infection has grown.  For tonight, Lily will be started on Vancomycin and Zosyn, which are two extremely strong antibiotics.  Lily will receive them both, three times a day, by IV.  Unfortunately, these antibiotics are very hard on the veins, and we have been warned that Lily will probably need several IV changes throughout this treatment.  Lily has been poked all over every square inch of her body that now display huge bruises.  I have no clue where else they can start an IV on my little princess.  Depending upon what type of bacterial infection Lily has, the IV antibiotic treatment will either run 48 hours or for 5-7 days.  Tomorrow we should have a better idea of what lies ahead of Lily.

A few specific prayer requests are that Lily has not drank anything since we arrived on the "floor".  She will eat a few bites of food here and there, but refuses to drink.  Last night they gave her IV fluids because they were afraid that she would become dehydrated.  Also, the antibiotics that Lily will begin are known to cause severe diarrhea.  After everything that Lily has been through, I am really not looking forward to this at all!  And most importantly, an infection after surgery is very serious.  Please be praying that the antibiotics act quickly and effectively at wiping out the infection that is inside of Lily's tiny body.

You may be wondering how Lily is doing tonight?

Well, her fever is down to 101F...
and she requested a wagon ride.

Oh how I LOVE this sweet girl!!!

A tasty treat before her IV antibiotics begin.

And how is Momma doing?
I am praising God for life...Lily's life.

Two weeks ago tomorrow,
Dr. Jonas gave Lily a chance at life.

Instead of focusing on Lily's infection,
my focus tonight is on 

Praise be to God!

“Why, my soul, are you downcast? 
Why so disturbed within me? Put your hope in God, 
for I will yet praise him, my Savior and my God.” (Psalm 42:11)

Wednesday, July 25, 2012

Day 13 - From Good to Bad

We started out our morning by busting out of Lily's room with the help of the Physical Therapist.  The nurse practitioner took Lily off of oxygen around 9am to see how she would do (again).  Lily was thrilled to have her "shoesies" on her little feet again. 

And off we went...

 We walked down to the playroom, 
and Lily was definitely excited to see toys!

Cooking breakfast for Momma.
Notice Lily's blue lips...Momma was nervous
but trying not to ruin the fun!

 By the time we got back to the room, Lily was exhausted and very dusky.  I placed her back in bed just in time for Papa and Soleil to come for  a visit.  Around 1:30pm, I asked for the nurse to come and check on Lily.  Her heart rate was very high, and her oxygen was in the 60's.  They gave her some Tylenol to see if the increased heart rate was from pain.  They also decided to put her back on oxygen.  Papa and Soleil said goodbye around 2pm.  About 15 minutes later the nurse came in to check on her again, and Lily was still not doing any better and actually seemed to be getting worse. She ran Lily's vitals, and  it turned out that Lily had spiked a fever.  The nurse practitioner called for bloodwork and an urinalysis to be done in order to check for infection.  While we waited for the IV Therapy team to come, Lily screamed, cried, and thrashed for about an hour.  They gave her Oxycodone, Motrin, and cool compresses but the little Empress was absolutely miserable no matter what.  My heart broke for my daughter as my mind wandered back to the cheerful little girl just hours earlier in the playroom who was making me breakfast. 

We spent the rest of the day and night doing "calm" activities.
No easy feat when you are "3".
Lily LOVES to listen to her recorded book
that Mimi and Bucca sent her for her birthday!

 Even with the Motrin every four hours, 
Lily is still running a low grade fever.

Hoping and praying that Lily is infection free!!!

Evening and morning and at noon 
will I utter my complaint and moan and sigh, 
and He will hear my voice. 
Psalm 55: 17

Tuesday, July 24, 2012

Day 12 - Family Update

Today was quite an eventful day to say the least!  Jacques started off the day at the ENT with Mighty Mack.  Mackenzie's right ear still has a gaping hole in the eardrum that will need to be closed by surgery in the near future.  The left ear is still severely infected with the resistant bacteria, but the antibiotic treatment is slowly showing signs of slight improvement.  Her left ear will also need surgery, but the infection needs to be completely gone before we can know for sure all that will have to be done to that ear.

Ten weeks ago I was handed a severely malnourished, profusely sweating, 104.5F degree child in a Shanghai Civil Affairs Office.  A child who could not stand up or walk without falling over.  A child who could not feed herself.  A child who had a vacant stare that made me wonder if we could ever break through to her.  At that moment I had the opportunity to say that this child was not what I was expecting.  That her needs were far too great and unpredictable, and that she may become a burden to our family.  And when I was asked if I was "satisfied with this child" I could not get the words out quick enough.  "YES!!!"  Our family has trusted that God specifically chose Mackenzie and Lily to be our daughters.  It would have taken the entire Chinese Police force to rip my daughter out of my arms.  And here we are, not even terribly far removed from that day, and our precious Mighty Mack is lively, joyous, and a gigantic blessing to our family.  What I am finding through this adoption journey, is that when you are willing to risk a lot to follow the path that God has already laid out before you, the rewards on the other side of the trials and tribulations are far better than anything that we could ever have done on our own.

Pure joy...

Dryden turned "7" today.  Dryden and Lily have their birthdays two days apart...how fun is that?  Jacques brought Dryden and Soleil to the hospital this morning so that we could do a mini-birthday celebration.  Mackenzie got to hang out with her Jie Jie Gracie and Ms. Terry.

Lily was all smiles to see her big sisters and Papa!

Anyone who has even received a hug from Soleil
understands that you just can't help but smile...

Dryden has been such an amazingly helpful big sister lately,
often putting her own needs behind the littles,
that Papa and I decided to get her a very special gift that she 
has wanted for a very long time.

Dryden made and decorated her own cake!!!
It's a Doc McStuffins cake.
Check out the stethoscope and Chilly!

With four little princesses in the house,
Papa says, "If you can't beat 'em, join 'em"!

After Dryden's birthday bash we got the news that they decided to take out Lily's chest tubes.  My anxiety went through the roof, and I was so glad that Papa was here at that moment to request that we speak to the surgeon.  Within minutes, Dr. Jonas was in our room (did I mention how much we love this man?) and he explained that over the past 12 hours Lily was not dumping much fluid.  He said this can be attributed to one of two things.  Either Lily is remarkably better or the location of where the chest tubes were positioned is no longer dumping the fluid anymore.  Regardless of the reason, the tubes needed to come out and now we wait.  They did a chest x-ray right after the chest tube removal, and they will repeat the x-ray again in the morning for a comparison.  The nurses also experimented with lowering Lily's oxygen and Zofran (nausea medicine) as well.  The result was a puking, grunting, blue baby girl who was miserable.  So, we are back up on the oxygen again, and still getting the IV Zofran every four hours.  Right now Lily's oxygen saturation with the nasal cannula is in the low 80's.  Before the chest tube removal she was hovering in the low 90's, so I am hoping and praying that this does not mean that she is accumulating fluid in her lungs. 

Have you never heard?
Have you never understood?
The Lord is the everlasting God,
the Creator of all the earth.
He never grows weak or weary.
No one can measure the depths of his understanding.
He gives power to the weak
and strength to the powerless.
Even youths will become weak and tired,
and young men will fall in exhaustion.
But those who trust in the Lord will find new strength.
They will soar high on wings like eagles.
They will run and not grow weary.
They will walk and not faint.
Isaiah 40:28-31

Lily Grace - Perfectly Unique

As if we didn't already think that Lily was one of the coolest kids on the planet, we learned some new interesting information about her today! We knew that Lily's heart was upside down and backward and on the right side of her chest, but is just so happens that during an ultrasound today we discovered that ALL of Lily's organs are on the complete opposite side of her body (situs inversus). For example, her right kidney is on the left side and her left kidney is on her right side, her pancreas and spleen are on her right side, gallbladder on the left, and her liver is flip flopped too.

 God sure did go out of his way 
to make our little Empress perfectly unique!!

I praise you because I am fearfully and wonderfully made;
    your works are wonderful, I know that full well.

Psalm 139:14

Monday, July 23, 2012

Day 11 - The "Floor"

They moved Lily to the "floor" (Heart and Kidney Unit) this afternoon.  They doubled her heart failure medicine yesterday, and she didn't have any arrithmiya's for 12 hours.  They kept her pacing wires in her heart "just in case" she needs to return to the ICU.  Her right lung looks the same...still collapsed, but not worse. Her chest tubes are still dumping fluid and blood clots.  They increased her Zofran (nausea medicine) from every four to every six hours.  This definitely helped until her IV ports went bad and we ended up two hours late for her dose of medicine.  No fun!

As soon as we got to her new room, Lily started grieving pretty hard.  I think she was nervous and scared about what was going to happen.  After 11 days in the same room with the same nurses, I think she grew pretty comfortable.  I tried to make her laugh and comforted her as much as I could, and then it hit me.  I am grieving too.

This is the first time in the 11 days that I have felt "down".  I miss the ICU room.  I miss the ICU nurses.  I miss the constant and complete interaction I had with the cardiologists.  I miss the extra attention of being cared after by a nurse 24/7.  I miss the people.  I miss the noise.  I miss the complete trust I had in the team of people who were caring for my daughter.

Here on the floor we are in a pretty large single room.  I have a cot or a recliner to sleep in.  I have my own bathroom with a shower.  However, as soon as we settled in, just like Lily, I quickly realized that this is very different.  It is supposed to be different.  I get it.  But change has always been hard on me.  The nurses only come in the room to administer medicine.  They do not sit in the room with us or right outside the room looking at us through a window.  The point of the Heart and Kidney Unit is to get the children ready to go home. This afternoon I spent the better part of the day listening to beeping from Lily's monitor because they turned her oxygen down from 2L at 100% to .5L at 100%.  Her nurse excitedly told me that tomorrow they were going to try to wean her off the oxygen.  I explained to the nurse that in the ICU just yesterday when they tried to lower her O2, she went from 98 to 60 in about 30 minutes.  Yet, they had to see this for themselves I guess.  The nurses didn't even come into the room until her oxygen sats were in the low 50's.  By that time Miss Lily was scared, mad, and grunting for breath.  I felt very alone and isolated during this time. 

Don't get me wrong.  I want to get out of this hospital.  I want to go home so badly.  But 12 hours of decent vitals from Lily did not bestow a ton of confidence in me like it did for the doctors I guess. 

All I wanted more than anything was to make it out of the Cardiac Intensive Care Unit.  And now that we are out, all I want is to be back in.  Hoping my attitude and perspective change with the rising of the sun. 

Be strong and courageous.  
Do not be terrified; do not be discouraged, 
for the Lord your God will be with you
wherever you go.
Joshua 1:9 

Miracle #3 - Lily's 3rd Birthday!

God answers prayers in BIG and MIGHTY ways!

Lily and her favorite nurse, Miss Casey, cuddling
while Momma went to get the birthday girl
ice cream for breakfast.

Even Lily's TV wished her a Happy Birthday!

 Lily showing her bunny Abigail how beautiful
she looked in Lily's compact mirror.

Getting ready for her big day...

Look who came to celebrate Lily's birthday!

 A bed full of love and hope.

At first, Lily was really happy to see her sisters.
But then Momma started holding Mackenzie, and
hugging Dryden & Soleil...
Little Miss decided that she preferred to have
Momma all to herself.

The birthday girl LOVED all of her presents!

Family...the greatest gift of all.

Lily went on "3" wagon rides today!
And she requested all of them.

Lily had an amazing day!  God heard your prayers & desperate pleas, and Miss Lily Grace woke up on her third birthday to Miracle #3...how appropriate!  I knew my little diva had returned as soon as she pointed to her door and asked me to open it so that everyone could see her all dressed up.  The ICU nurses and doctors made a lot of exceptions for us today in order to make Lily's birthday super special for her.  Lily has won the hearts of every single person who has crossed her path.  

Lily's right lung is still collapsed, but slowly making progress.  She is still having a difficult time keeping her oxygen saturation up, but we are hopeful that this will improve over time.  Since Lily was still having such severe arrithmiya's, during rounds last night they decided to doubled her dose of heart failure medicine, and Lily stayed in sinus (normal) rhythm ALL DAY LONG!  Sweet girl's chest tubes are still dumping large quantities of fluid to include large, painful blood clots.  Her tubes need to be stripped every hour, which I am told is extremely painful.  Lily cries the biggest, saddest alligator tears you will ever see.  

Rumor in the ICU is that Lily Grace "might" be moved to the Heart and Kidney Floor tomorrow.  She still has a very long way to go before she can be released from the hospital, but getting out of ICU will be monumental.  Need I remind you of what the Cardiologist fellow said to me the other morning?

Thank you prayer warriors! 
 God has answered.

Saturday, July 21, 2012

Day 9 - Princess Lily

Every Princess needs a spa day!

Our morning started off with a VERY special gift from a friend.
Thank you Nikki & Roger.
To say that Lily LOVED her new bows and holder
would be a huge understatement!

First, you start with two tubes of Chapstick

A half bottle of lotion

Keep rubbing because a half bottle is A LOT!

Take some deep cleansing breaths because Momma 
says that aromatherapy is good for the soul!

Brush your hair...

And be sure to put on that SMILE!

Such a sweet baby girl <3

Our prayer for Lily tonight, is that she can get her oxygen up and keep it up.  Shortly after our spa party, Lily's oxygen began dropping.  These dips tonight seem to correlate to huge painful blood clots coming out of her chest tubes.  They turned her oxygen up to 2 Liters at 100%, and she is still only saturating in the mid 80's.  Her tired little heart is also fully relying on the pacer tonight, and even with the pacer it is not staying up at the paced rate.  

Praising God for a few smiles and giggles this evening, and trusting Him with His plan for Lily!  Thank you friends, family, and complete strangers for all of the prayers you are sending up on Lily's behalf.  Jacques and I are absolutely blown away and humbled by your love for our family.

A sweet friend of mine, and fellow adoptive mother Karen posted a comment that has been resonating in my ears all day long.  She said that "with all of the people praying all over the world, it sure does make the world seem a lot smaller, and the church seem a lot larger".

Thank you "church" for bridging the gap for our family!

Friday, July 20, 2012

Day 8 - Lily Sets the Pace

As I sit here to type this blog post, part of me cannot believe that Lily is still actually in the Cardiac Intensive Care Unit.  When I spoke to the surgeon last Thursday, he warned me that about 3% of children who receive a normal Fontan Procedure, and about 5% of children who are like Lily with a very complicated heart, end up having severe complications post surgery.

 Lily's heart is still going into a Junctional rhythm quite frequently.  The doctor explained it to us by saying that a heart in sinus (normal) rhythm will squeeze from the top and then squeeze from the bottom in a rhythmic pattern.  Lily's heart is squeezing from the middle, and then squeezing from the bottom.  Ever since her surgery, the doctors have been putting Lily on and off of a pacemaker.  Today, one of the doctors became insistent that Lily be left on the pacer for an entire 24 hours to see how she responds.  After about 12 hours of constant pacing, I must say that Lily seemed to do much better overall.  She had more awake time, ate some food, talked to Mommy and Papa, hid from the nurses when they came in the room, as well as was very quick to tell them, "Ba bye" and "Later" as soon as she wanted them to leave.  My unprofessional opinion is that Lily's heart likes the pacer.  The team of cardiologist's discussed her case today, and decided to begin her on a medication to lower her blood pressure to see if that takes some pressure off of her heart, and allows it to beat in a sinus rhythm. 

"Maybe if I don't see you,
you can't see me!?"

Lily is still battling her collapsed right lung.  She receives physical therapy three times a day to get her out of bed and moving, as well as several sessions with the Respiratory Therapist where they beat on her back with "cups" in order to break up the gunk in her lungs.  Throughout the day, the nurses program Lily's bed to rhythmically inflate and deflate, which pounds on her chest as well.  Lily is still on the oxygen cannula, and requires it to be at 100% in order to maintain a comfortable oxygen saturation.

A few other causes for concern are that Lily's sodium level is extremely low.  After forcing her to take 3 teaspoons of sodium three times a day, which she would promptly throw up, Papa brought a couple packs of Ramen Noodles and Soy sauce to see if that would do the trick.  Lily did a great job eating lunch, and her sodium level raised slightly.  However, we took a few steps backward after dinner when she threw up her meal.  Lily is also receiving potassium throughout the day, as well as IV fluids in order to maintain the adequate volume that her body seems to require at this point in time.  Of course that means that our Little Miss is carrying around 6 lbs of excess fluid in the body that makes her feel pretty lousy.  Our sweet girl often tells me that she has owies in her eyes from all of the fluid pressure.

So, what does all of this mean?  It means that Lily has won herself an extended stay in the Cardiac ICU!  We will take each day as it comes, and celebrate the small victories along the way.

Like Mommy and Papa being able to hold their baby again.

Thursday, July 19, 2012

Day 7 - Wagon Ride #2

As horrible as this may sound, the best thing for a collapsed lung is lots of movement.  Poor Lily could not have disagreed more as we loaded her up into her second wagon ride.  The part that most breaks my heart is that a wagon ride is supposed to be fun.  The nurses told me that they have never seen a toddler so sad while being pulled around in the wagon.  Lily also has over 6 lbs of extra fluid that they have pumped into her body when she went into heart failure the other morning.  Her eyes are so swollen that she can barely see.  Even so, Lily decided to look down and pout during her ride perhaps with the hope that we would get the point and not torture her again tomorrow.

Day 7 - Collapsed Right Lung

Lily had a rough morning again. The first chest x-ray showed a partial right lung collapse. They just did another one since they suspect the whole thing has collapsed now. Her O2 was down in the 40's and wouldn't come up. Lily was so scared and in pain. 

I would have given anything 
to give her my breath during that episode...
please God
 fill her with your breath of life! 

"And the Lord God formed man 
of the dust of the ground, 
and breathed into his nostrils 
 the breath of life; 
and man became a living being" 
Genesis 2:6-7

Wednesday, July 18, 2012

Day 6 - Godwink

Lily's night nurse on Monday found the cutest hospital gown with tigers on it that says, "Tired Little Tiger".  It just so happens that Lily's favorite song is, "Liang Zhi Lao Hu", which means "Two Little Tigers".  For the past couple of days, everyone who sees Lily comments on how cute she is, but also on her adorable hospital gown.  Apparently, nobody seems to know where this hospital gown came from since the ones they have at this hospital are a pale green color.

Lily's Liang Zhi Lao Hu Hospital Gown

Hundreds of miles away, in a Pediatric Intensive Care Unit, is a little girl names Brooke.  Brooke and Lily met in China while our families were finalizing our adoptions.  We discovered that Brooke and Lily have very similar heart defects, and yesterday Brooke had her Fontan procedure done as well (which is the same open heart surgery that Lily had on Friday).  You can follow Brooke's amazing journey here.  

After a ridiculously scary morning for Lily, God came through with a GIANT Godwink just for us.  You will never believe what hospital gown Brooke was given to wear!

Brooke's big sister Meredith told me that all of the other hospital gowns are pale green just like they are here.  What are the chances that both of these special heart babies from China would be in hospitals hundreds of miles apart wearing the same "unique" hospital gown?  I suppose the odds are pretty good when you serve an omnipotent God!

Jesus looked at them and said,  
“With man this is impossible, 
but with God all things are possible.” 
Mathew 19:26

Day 6 - Wagon Ride #1

Well, it's official, Lily hates the wagon.  Lily's surgeon felt that after being cooped up in the Cardiac Intensive Care Unit for the past six days, our sweet girl may have forgotten what she was fighting for!  Often times, kids who are ordinarily feisty and stubborn, literally give up their will to live after enduring prolonged periods of being sedentary in their bed.  So today, we grabbed all of Lily's pumps, tubes, and wires and loaded her up into a wagon.  This was no easy feat, I assure you!  About halfway through our ICU "loop" Lily threw up twice, and then was completely miserable since little Miss Clean was yucky and dirty for the rest of her ride. 

I can't say I blame her one bit!

Day 6 - Mommy Knows Best

Thank you to all of our dear friends who have helped us out in so many ways with our three older girls over the past week.  Because of "you", I have been able to be by Lily's beside 24/7, and Jacques has been able to visit us a few hours everyday.  The nurses in the Cardiac Intensive Care Unit are amazing!  They clearly love what they do, and boy does it ever show.  As the patients improve, the nurses go from being at the child's bedside full-time, to checking on them as needed.  By all indications, everyone agreed yesterday morning that Lily had made remarkable strides, and that she would be moved to the Heart and Kidney "step down" floor on Wednesday (Day 6).  The nurses were super busy all day yesterday with two newly admitted teenagers, and they continually apologized to me for not being around more to check on Lily. 

Mommy knows best.  My gut told me all day and evening long that something just wasn't right.  I am sure I was pretty annoying at times with my persistence, even though the nurses never made me feel that way.  At first I noticed that Lily's hands and feet were very cold.  The nurses took extra temperature readings just to assure me that she was fine.  The next thing that I noticed was Lily seemed to be taking in small shallow breaths a million times per minute...yes, that is a gross exaggeration, but it sure did seem like that!  And then it happened, Lily started ignoring me.  I would ask her questions and she would tune me out.  I would reach for her hand and she would pull it away.  I would whisper in her ear that I loved her, and she would roll the other direction.  This was not my Lily girl.  She was distressed, in pain, irritable, and just plain pathetic.

The nurse ran a blood gas and discovered her lactic acid was 9.  She assumed this was wrong, and ran it again, but this time it was 10.  The Charge Nurse came in to assist and she ran two more gases, one from her arterial line and one from her Fontan line.  There was no mistake...Lily's lactic acid was 10 times more than what it should have been, and her blood pressure was through the roof.  At this point, her room started hopping.  They gave Lily lots of fluids, and they began her on Milrinone which is a drug given to patients who are in heart failure.  They also discovered that Lily's sodium was very low, and that her glucose level was a 38 (also dangerously low).  They started a glucose/sodium drip, and gave her a bolus of sugar.  I was warned that if she did not make a drastic turn around, they would need to reinsert the breathing tube again.  A chest x-ray was done, and they discovered that Lily's lungs were full of fluid.  After a bit of manipulation, they were able to unclog her chest tube hose which had backed up from a clot, and tons of fluid drained out. 

One of the sweet nurses who had taken care of Lily the other day was in the room assisting, and all of a sudden she said, "Where is Lily's bow?  This sweet girl needs her bow."  Earlier in the night her bow had fallen out, so I put it to the side since she was tossing and turning in discomfort.  Perhaps the best medicine of all, was that Mommy placed her hot pink bow back on top of her head.

Thank you prayer warriors for going to battle with us.  
The battle has just begun,
but thank goodness the war has already been won!

Whom have I in heaven but you? 
And earth has nothing I desire besides you.
My flesh and my heart may fail, 
but God is the strength of my heart 
and my portion forever.
Psalm 73:25-26

Day 6 - Early Morning

Lily took a turn for the worse.  Her blood pressure is through the roof and her extremities are freeeeezing, which means the oxygen is not circulating well.  Her sodium is very low and her lactic acid is WAY high too.  Lily's glucose is 38, so they gave her a huge dose of sugar and she is now on a drip (so no food or drink until we get this squared away).  Poor baby is breathing a million miles per minute, and when she wakes she is in great distress.  Thankfully, she is pretty out of it right now.  They just did a chest x-ray, and she has a huge collection of fluid in her lungs.  They are doing a lot of things to her right now, and if this doesn't help, then the breathing tube will need to be reinserted.  

The next several hours are critical.

Tuesday, July 17, 2012

Day 5 - Lots of Pain

I didn't get a chance to update much today since Miss Lily was in quite a bit of pain all day long.  She wanted Mommy to stay close non-stop, which of course I didn't mind one bit...except for the occasional times when I really had to pee!

The doctors were really pleased with her progress today, and are talking about moving her to the step down floor tomorrow!  My mommy gut instinct has seen some alarming changes to her comfort and breathing, which irritates me when the doctors come in and say, "She looks great!"  I want to scream at them and say, "Well, she doesn't feel great, so can't you do something about that?" 

Of course, I hope that I am wrong.

Monday, July 16, 2012

Miracle #2

Heaven Sent

Our prayers have not only been heard, but answered!
Lily Grace made an astounding turn around today
amazing everyone in her path.

Breathing tube out...

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