Month: December 2015

The day the genetic test came in.  The doctor entered our room with compassionate eyes.  She asked me to have a seat, she took one as well.  Everything went into slow motion at that point.  She explained to me that Charlie’s genetic test had come back positive for Down’s Syndrome.  I wept.  Why?  Well, today I am not sure!  But on that day I had a lot to process.  Things that would be different from raising our other children.  Our goals would be different for his life.  He would never have children.  We may never be “empty-nesters”.  Thoughts seemed big and overwhelming.  I remember vocalizing concerns to Bob as I processed our new realities.  He just looked at me and said, “I know, won’t it be GREAT!!!”  I smiled, readjusted myself, and said, “YES! It will be.”  From that moment on, I have seen Charlie and his little diagnosis as FLAWLESS.  In the world’s eyes?  Maybe not.  But in God’s eyes…and his mother’s eyes and his daddy’s eyes…his brother’s and sister’s eyes…his grandparents eyes…and his aunt’s and uncles eyes…and SO many friends- FLAWLESS.  He was wonderfully made for God’s glory!

A few weeks after Charlie entered the hospital my big brother shared this song with me.  It is a must see.

https://m.youtube.com/watch?v=wjLILPZderk

I hope this message blesses you where you are at.  It is my heart’s desire that you know and understand exactly what it is that happened at the “the cross.”  It was there that Jesus Christ died, he died for sinners.  He died for those who are unable to be perfect.  What’s so great about that you ask…well, he is the only One, God’s son, who could stitisfy the debt we owed.  The only One who could pay the price for our sin that deserved eternal death-hell.

This is really good news.  Amazing actually!  Overwhelmingly amazing!  You see I was born very flawed.  Maybe not so much in my outwardly appearance.  I wasn’t born with an extra chromosome.  I wasn’t missing a limb.  However, I was born with a much bigger problem than those… A sin problem.  A sin problem that I could not overcome on my own, no matter how hard I tried.  And believe me I have tried it on my own (bad idea).  The God who made me and knew that I had a sin problem sent his only son do die on the cross to pay for my sins- IN FULL.  And so in Jesus Christ alone, I am made -FLAWLESS!

Romans 5:8. But God demonstrates His own love toward us, in that while we were yet sinners, Christ died for us.

 

Merry Christmas!  It has been a blessed Christmas for the Fine family.  Thank you to so many people who have helped us this week- helped us to have a sweet Christmas as a family despite our little man living at the hospital.  It has been our simplest Christmas ever and many of our children have said that this was the best Christmas ever!  Thank you to all who offered to sit with Charlie, the thoughtful gifts from family and friends, delicious food, calls, emails, warm cinnamon rolls, and tons of prayers.  We are all SO very thankful for you and especially the birth of our Savior, Jesus Christ.

We had a nice morning at home and then visited Charlie at the hospital. Charlie was having a hard time when we got there, but we had some good time with him!  Oh, we love that sweet boy.

The hospital has a program where they give a gift to each sibling of anyone in the hospital over Christmas.  They took me down to a conference room filled to the brim with toys.  I had a personal shopper who took me around and helped gather a gift and a stuffed animal for each child.  It was an overwhelming blessing and encouragement to my children.

Hoping each of you had a Merry Christmas!!!

 

Last night I had to say good-bye to my family again to return to our little Charlie Cherub- bittersweet as you can imagine.  As Naomi snuggled into bed with her sweet big sister she asked Savannah what needed to be fixed on Charlie.  Savannah told her that they needed to go in and fix holes in his intestines and heart.  She promptly asked, ” Will they be able to see Jesus in his heart?!”

Charlie’s sweet grandma played with him for 2 days so that I could go home to be with my family.  She asked, “Do you think they would let us bring him home for a short visit on Christmas?”  Oh what we would give…

Out of the mouth’s of babes and grandmas!  So sweet…

Charlie is doing VERY well.  He is in a comfortable spot waiting for surgery.  We are enjoying much snuggle, play, sing, pray, and kissing time.

Last Saturday I went to the hospital with mom to stay the night. I never really know how much I miss my Charlie boy until I’m a few minuets away then I get SO excited! He is such a cute little blessing! He had a hard night the first night I was therewas happy and cuddly the next day! We listened to the church service with him, and when he heard dad’s voice exhorting he got really happy and was looking all over for him. He loves his dad!! The nurse let me help change his diapers and wound dressings, I really enjoyed that part! There is a cleaning lady there that is very sweet, she is always wearing a big smile and every time I pass her in the hall she asks how Charlie or mom or the family is doing, she adds a bright light to the halls of the NICU! Every time I go to stay the night with mom and Charlie I can feel the presence of God all around his room. It is SO sweet to be with my little man.  I think about all that he has gone through and is still going through…and it is WAY more than I have ever gone through in all my life! He is a trooper, and a mighty warrior! It is amazing to think that God has a purpose for him, we don’t know what it is but we know it is God’s will for him to go through this, so we won’t complain.

Keep praying for our little warrior.  Pray that God will give him strength to fight the battles ahead.
Love,
Sarah (Still his biggest fan!) 🙂

It’s a beautiful snowy day here at Children’s Hospital.  Charlie is sleeping soundly, all machines and alarms and pumps are quiet at this moment (a rare occasion), and worshipful Christmas music is playing.  Though the battle for contentment in these  circumstances is real, I am thankful to our mighty KING and RULER who can change the intense feelings of pain, sorrow, and frustration- to joy, thankfulness, and rejoicing … In even me!  And in His mercy He is doing so.  My sweet family came to visit last night and we went to dinner to celebrate Daniel’s birthday.  Oh it is SO wonderful to be with my whole family (though missing Charlie).  When they pulled up to the hospital with all it’s beautiful Christmas lights and bustling of people in and out of the doors my heart wanted to turn to grief.  I wanted to load up Charlie and add him to our delightful car full of people…I can’t tell you how badly I wanted to do this!  But God gave me the strength and the will to step out of the car, wave good-bye to the bulk of my family and enter the hospital world once again with gratitude and expectation for what God is doing and will do.

Charlie is doing better than he was just a few days ago.  He is sleeping better and having good happy alert times.  He is still fussier than usual- which could be due to any number of things.  His happiest place is definitely in mama’s arms.  The occupational therapist helped us work on hands to mouth and bringing arms and legs forward and midline today.  Charlie is a champ and working so hard.  We have a countdown until surgery.  The prayer is that he would not have any infections or difficulties between here and there.  29 days until surgery to repair his belly!

Sunday was a sweet day of worship and fellowship.  Sarah, Charlie, and I listened to the Word being preached, sang, prayed, and then enjoyed some visitors too.  A dear friend stopped by and loved on Charlie and encouraged my heart.  Our elders also came by to pray, read, and sing with us.  Oh what a blessing!

 

James 5:13-15  Is anyone among you in trouble? Let them pray. Is anyone happy? Let them sing songs of praise. 14 Is anyone among you sick? Let them call the elders of the church to pray over them and anoint them with oil in the name of the Lord. 15 And the prayer offered in faith will make the sick person well; the Lord will raise them up. If they have sinned, they will be forgiven. 16 Therefore confess your sins to each other and pray for each other so that you may be healed. The prayer of a righteous person is powerful and effective.

Continued prayer for healing from most recent infection, weaning of breathing support, and the ability to tolerate and output feeds if we attempt again soon.  THANK YOU!  Now snuggle up to your family and DO NOT take one moment with them for granted.

The day before it was confirmed that Charlie had Down’s Syndrome, I went to the hospital cafeteria for breakfast.  It was a surreal time.  I sort of felt like God was preparing me for the diagnosis.  The whole place was empty except for a lovely husband and wife with their teenage boy who had Down’s syndrome.  I couldn’t take my eyes off of him.  He was delightful.  I felt myself wanting to get up and go squeeze him.  It was there I told myself that if Charlie did have Down’s Syndrome that I would be the kissiest mama in the world to him.  I imagined myself kissing his head ALL of the time and hugging him when I wasn’t kissing him and then kissing him again when I was done hugging him.  I knew it didn’t matter if the test was negative or positive…I was going to LOVE my boy all the same.  Charlie had my heart from before he was even conceived.  My love for him grew with each passing day in the womb.  And when he was born, oh the love was exponential- and has been every day since.

When Charlie was about a month old and I was having a hard time imagining life outside of the NICU, nonetheless with his unique gift of an extra chromosome.  God gave me just what I needed, a real surprise!  I had just stepped out of the elevator.  My eyes immediately caught a darling little boy sitting in his stroller with his mama in the hospital lobby.  I could not take my eyes off of him.  I tried to walk towards the doors, but my feet took me straight to this little cherub.  I started talking to him.  This 18-month old T21 baby gave me a “hi,” a wave, and the cutest smile ever!  Somehow, it gave me a little more hope, a little more vision, and definitely a dose of joy in regards to our new situation.  His sweet mom and I decided to exchange information.  She said her little boy’s name was Charlie…I looked at her and said, “Wow! That’s my son’s name too!”  Then she told me her name was Deb.  I stepped back and said, “Wow! That’s my name too…”  We have been communicating and her journey with her precious little Charlie has been inspiring to me.  I am SO thankful for our two amazing little Charlie’s.

Lord, I pray for this sweet little boy.  That you would give him joy, health, wisdom, and the pleasure of using all his unique giftings for YOU oh Lord.  I pray that this little boy would continue to touch and bless the lives of MANY MANY MANY who cross his path.  I pray for his sweet mom, that you would give her strength, wisdom, endurance, and peace- that comes only from you, the father of lights from whom all good gifts come from.  Lord, thank you for this little boy Charlie whom you used to encourage my heart so intentionally that day.  Thank you for the gift that he is to his family and all who know him.  AMEN!

Psalm 139
13 For you created my inmost being;
you knit me together in my mother’s womb.
14 I praise you because I am fearfully and wonderfully made;
your works are wonderful,
I know that full well.
15 My frame was not hidden from you
when I was made in the secret place,
when I was woven together in the depths of the earth.
16 Your eyes saw my unformed body;
all the days ordained for me were written in your book
before one of them came to be.
17 How precious to me are your thoughts,[a] God!
How vast is the sum of them!
18 Were I to count them,
they would outnumber the grains of sand—
when I awake, I am still with you.

Charlie is awake and happy right now, though he is on a good amount of pain medicine.  His breathing is OK, but not great.  His blood culture came back positive for an infection in his central line.  He is on antibiotics…again.  We really need keep that line because all of his nutrition is delivered through it.  Hopefully the infection will clear.   God will carry us until surgery 1 month from today.  Holding onto HIM as we ride this roller coaster.  Sarah is my hospital buddy today.  This is such sweet time for the 3 of us. It is also a HUGE help and blessing to have her here because she is such a lovely nurturer to Charlie too- it gives me a rest.  Oh how my girl’s LOVE Bing here to help care for Charlie boy!

Many months ago we had surgery at the same time and next door to another precious little baby boy.  His mama became a sweet friend during our stay here at Children’s.  Well…yesterday they got to go home!  What a joyous day for them.  I will miss them but look forward to  him progressing and gaining health as he adjusts to life at HOME!  It delights my heart when I get to see the babies here go home.  Oh Charlie, your day will come!

This year we decided as a family to focus our energies towards Christ and helping Charlie get well.  So we did not get out the usual Christmas tree and decorations.  Instead we put up a small tree, a “Charlie Tree” we call it.  It has a few bulbs and an ornament we made for each child with a photo of them with Charlie.  It is a special tree, a tree that none of us will ever forget.

Naomi has been praying for a while that Charlie could come home by Christmas…she still is.  I have encouraged her to think about praying for Charlie to be home by Easter, Savannah’s 17th birthday.  Now that would be wonderful!  We don’t really know how long we will have to be here, but we trust that not one day will be wasted in the sight of God.

Last week a sweet lady delivered a special box from my sister’s family to our room.  It was a darling little tree with several lion ornaments and lights.  We had so much fun opening each little ornament representing the warrior spirit of our lionhearted Charlie!  So precious, thanks Ash.

The next day the special “brown truck” delivered an enormous box filled with a gift for each of our children from Uncle Paul’s family.   The next day the “brown truck” delivered a ham, roast, and a beautiful box of pears!  Thanks Uncle Jamey.

 

 

Psalm 42

1 As the deer pants for streams of water,
so my soul pants for you, my God.
2 My soul thirsts for God, for the living God.
When can I go and meet with God?
3 My tears have been my food
day and night,
while people say to me all day long,
“Where is your God?”
4 These things I remember
as I pour out my soul:
how I used to go to the house of God
under the protection of the Mighty One[d]
with shouts of joy and praise
among the festive throng.
5 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.
6 My soul is downcast within me;
therefore I will remember you
from the land of the Jordan,
the heights of Hermon—from Mount Mizar.
7 Deep calls to deep
in the roar of your waterfalls;
all your waves and breakers
have swept over me.
8 By day the Lord directs his love,
at night his song is with me—
a prayer to the God of my life.
9 I say to God my Rock,
“Why have you forgotten me?
Why must I go about mourning,
oppressed by the enemy?”
10 My bones suffer mortal agony
as my foes taunt me,
saying to me all day long,
“Where is your God?”
11 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.

Charlie is struggling tonight.  His breathing continues to decline and he is in obvious discomfort.  They started antibiotics again.  The feeds were stopped earlier today when they started going the wrong way.    My heart aches.  But I will choose to put my hope in God, for I will yet praise him, my Savior and my God.

I have so much to be thankful for.  Jesus IS risen and I have a great hope for the future!  Charlie is alive, today.  I have a precious husband who loves his family and God.  I have children who are such a tremendous blessing.  We are provided for.  Our share ministry (Samaritan) is an overwhelming blessing and support.  My children played sweet praises to the Lord at a piano recital tonight.  They also blessed a nursing home with their sweet voices tonight.

Tonight I was able to go with them to hear their choir perform at the nursing home.  I was visiting with a sweet elderly woman in pink.  She was precious.  She talked to me with her eyes.  She couldn’t seem to get the words from her mind to her lips.  That was OK.  I just rubbed her arm.  Then Nathaniel came over.  Nathaniel is my sweet friend with Down Syndrome.  He simply smiled at her…she lit up and suddenly had a gleaming smile across her beautiful face.  He blessed her and caused her to feel JOY.  Nathaniel, I thank God for you.  You are so special and your hugs mean the WORLD to me, especially now.  How I long for my little Charlie to grow up like you one day.  I am thankful for that moment tonight…to see Nathaniel’s gift in bringing joy to this woman that could not communicate with us very well…except through a smile.

 

I am SORRY for the delay in updates. The website has not been working. BUT…are back online now!

It was a celebration when the nurse had to go find another pump to deliver FEEDS! What a blessing.  The photo above is Charlie’s feed pump that is delivering milk into his intestines via a  tube at 1-2ml/hr.  It was dark and Charlie was sleeping, so this is the best I could do.

PRAISING GOD for the baby steps we have taken this week. Charlie has been on small amounts of milk for 36 hours. He seems to be tolerating it well. Today they raised it from 1 to 2 ml/hr which is a very small amount, but HUGE progress. We are hopeful that he can continue to tolerate it and that his little body will process it and put it out in the right place.

Charlie has been struggling a little more with the breathing component and oxygen levels. This could be related to his heart condition. We are just trying to keep things in bablance until we can start repairing things (ie. gut and heart).

THANK YOU for your prayers!