Mr. Charles

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ONWARD and UPWARD!  Charlie is moving in the right direction…HOME!!!  We still don’t know when that will happen exactly, but we are moving that way.  Things have been relatively smooth.  We were able to remove one of his pain meds two days ago.  It went well until we hit a period of “withdrawal”- this was heartbreaking but thankfully didn’t last too long. Since we were able to get rid of that med they took out his second central line today!  YAY!!!  So we now just have the one line that accomodates what he needs for now and we are able to come home with it.  The main things that need to happen now are for his lungs to develop a little bit more so we can transition him to a “home vent.”  We will need to be stable on this for a couple of weeks to prove he is able to remain stable enough to come home.

Charlie is enjoying much more awake and alert time, play time, and therapies to recapture the months he has been fighting for life and not able to develop like a regular baby.  He is giving us smiles and sometimes they involve his WHOLE face!  He is amazing.  So amazing!

With Charlie being so much more stable I have had the joy of spending more time with my other children.  Thanks to so many friends and family that have helped us by being with Charlie, holding him, reading to him, and loving him.  This is such a blessing and I often wonder what sort of blessings this will deposit into who Charlie is and how he is gifted…oh to be loved by SO SO SO many.  Even his doctors and nurses love him.  Many of his nurses come to visit him on days they have different assignments.  Everyone is so happy to see him doing well.  The pictures above demonstrate fresh wild flowers picked for me by my sweet Ikey, warm brownies from the kitchen, hours of joy, worship, and laughter on the trampoline, a Rockies game thanks to our friends the Martinez’s.  Times like these have proven to sweeten our relationships, cause us to not take each other for granted, and bubble over with gratitude for even the small things.  Lord, thank you for the gift of Charlie that has helped us all to see a little better- what really matters in this life!

Zephaniah 3:17 – The LORD your God is in your midst, a mighty one who will save; he will rejoice over you with gladness; he will quiet you by his love; he will exult over you with loud singing.

 

Spring Has Sprung for Charlie

Although we are enjoying a little bit of winter (27 inches!) in spring-time today, for Charlie spring has sprung!  Charlie has been doing very well.  Thanks to the trach he is now oxygenating well.  He is happy, growing, smiling, and healing.  Now that he is weaning off of meds and able to enjoy being a baby we get to see more of “Charlie.”  The therapists that stop in each day are very pleased with all that he is doing and they are helping us to get him stronger.  Sarah enjoyed her snuggle time with her little brother on Friday…

We are so thankful for all the grandma’s, uncles, aunts, cousins, and friends that take the time to visit Charlie and snuggle with him when I am at home.  Charlie doesn’t lack for LOVE!  Thanks to Uncle Brian (Charles) and Karsen for loving on our boy today.

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Please pray that Charlie would progress quickly so that we can get our boy HOME!

-wean meds quickly and successfully

-lungs would mature and heal (alveoli would expand and function well)

Thank you so much for praying for little Charlie!

 

 

No Flowers Wear So Lovely…

“The trial of your faith.”
1 Peter 1:7

by Charles Spurgeon

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Faith untried may be true faith, but it is sure to be little faith, and it is likely to remain dwarfish so long as it is without trials. Faith never prospers so well as when all things are against her: tempests are her trainers, and lightnings are her illuminators. When a calm reigns on the sea, spread the sails as you will, the ship moves not to its harbour; for on a slumbering ocean the keel sleeps too. Let the winds rush howling forth, and let the waters lift up themselves, then, though the vessel may rock, and her deck may be washed with waves, and her mast may creak under the pressure of the full and swelling sail, it is then that she makes headway towards her desired haven. No flowers wear so lovely a blue as those which grow at the foot of the frozen glacier; no stars gleam so brightly as those which glisten in the polar sky; no water tastes so sweet as that which springs amid the desert sand; and no faith is so precious as that which lives and triumphs in adversity. Tried faith brings experience. You could not have believed your own weakness had you not been compelled to pass through the rivers; and you would never have known God’s strength had you not been supported amid the water-floods. Faith increases in solidity, assurance, and intensity, the more it is exercised with tribulation. Faith is precious, and its trial is precious too.

Let not this, however, discourage those who are young in faith. You will have trials enough without seeking them: the full portion will be measured out to you in due season. Meanwhile, if you cannot yet claim the result of long experience, thank God for what grace you have; praise him for that degree of holy confidence whereunto you have attained: walk according to that rule, and you shall yet have more and more of the blessing of God, till your faith shall remove mountains and conquer impossibilities.

I am thankful to a dear friend for sending this and for Charles Spurgeon who through these words, helped pull me out of a miry pit of despair.  I marvel that God gave these words to Charles over 100 years ago knowing that they would one day be used to help rescue me.

Over the past several days I found myself way beyond the end of myself.  I was in the depths of grief, sorrow, and exhaustion.  Tempted by anger and frustration.  I was overwhelmed by discouragement and felt I was being consumed with a lack of hope for the temporal future.  I cried out to the Lord with the only words I could muster up…”Help me, Lord!”  “Help me, Lord!”  “Help me, Lord!”  I felt that I could not bear the current disappointments.  Let alone all of the one’s that were behind me and potentially in front of me.  I felt shattered.  Broken.  Bruised.  I didn’t know what to ask God for, but…”Help!”  My heart was growing cool and I despised the feeling.  “Help!”  I got myself home, kissed my babies, and put myself to bed.  The morning brought the same sadness.  My sweet hubby listened, consoled, encouraged, wiped the tears, and reminded me of God’s warm love and care for us always but especially in the last 7 months.  I had been blinded and was only able to see the difficulties and disappointments.  The next hours I spent with my Father, asking for a renewed strength, a new vision, fresh hope, and a softened heart.  I told Him I would not quit, I did not want to leave the post for which He had called me too, but I needed HIM to enable me.  “Help!”

That Sunday our pastor (and dear friend) started a series on suffering that was like balm to my weary and aching soul.

2 Corinthians 4:6-12

6 For God, who said, “Let light shine out of darkness,”made his light shine in our hearts to give us the light of the knowledge of God’s glory displayed in the face of Christ. 7 But we have this treasure in jars of clay to show that this all-surpassing power is from God and not from us. 8 We are hard pressed on every side, but not crushed; perplexed, but not in despair; 9 persecuted, but not abandoned; struck down, but not destroyed. 10 We always carry around in our body the death of Jesus, so that the life of Jesus may also be revealed in our body. 11 For we who are alive are always being given over to death for Jesus’ sake, so that his life may also be revealed in our mortal body. 12 So then, death is at work in us, but life is at work in you.

Just two day’s before the message I had felt as if I was hanging on by a “thread.”  The thought of the mere “thread” was frightening.  The deep waters of sorrow felt like they were beginning to fill my mouth and I was only able to gasp for air from time to time.  The air, in His mercy, was Truth- His truth.  In my fragility and weakness my loving Father kept taking my mind to the cross.  Every thought of despair was instantly counteracted with visions of what Jesus Christ did for me, the suffering He had endured for my sake- I know not suffering as He does!  I found that a part of me wanted to go under water so as not to have to fight for each breath any longer.  But the visions of the life I have in Him were too bright to ever completely give way to the despair.  Then in pastor’s sermon (as if hand delivered from heaven) he referred to the feeling in the midst of suffering as hanging on by a “thread.”  Exactly how I had worded my own estate.  He reminded me that though it may feel like one tiny wimpy little “thread.”  That thread has greater tinsel strength than over 400 tons…it will tether us, He will not cut it!!!  Instantly the flood of warmth and love from my Lord Jesus washed over me as I was reminded that He was never going to let me go, the despair took me to a depth I have never known, but I was still in the palm of His loving hands.  He allowed me to go and feel those depths for a purpose, for a strengthening of faith, for more passionate love for Him, and for a deepening of trust in Him.  He allowed me to see over the edge of that cliff to remind me of how wonderful it is in His green pastures.  He is not going to let me fall of that cliff.  In that I knew that I could lose everything, and He would be enough.

Pressed but not crushed

Perplexed but not in despair

Persecuted but not abandoned

Struck down but not destroyed

Philippians 3:8-10  What is more, I consider everything a loss because of the surpassing worth of knowing Christ Jesus my Lord, for whose sake I have lost all things. I consider them garbage, that I may gain Christ and be found in him, not having a righteousness of my own that comes from the law, but that which is through faith in[a] Christ—the righteousness that comes from God on the basis of faith. 1I want to know Christ—yes, to know the power of his resurrection and participation in his sufferings, becoming like him in his death,

One of the greatest evidences of God’s love to those that love him is, to send them afflictions, with grace to bear them. ~ John Wesley

Romans 8:38-39. For I am sure that neither death nor life, nor angels nor rulers, nor things present nor things to come, nor powers, nor height nor depth, nor anything else in all creation, will be able to separate us from the love of God in Christ Jesus our Lord.
“I am afraid that all the grace that I have got of my comfortable and easy times and happy hours, might almost lie on a penny. But the good that I have received from my sorrows, and pains, and griefs, is altogether incalculable … Affliction is the best bit of furniture in my house.”  ~ Charles Spurgeon

 

Psalm139:1-12  O Lord, you have searched me and known me!
2 You know when I sit down and when I rise up;
you discern my thoughts from afar.
3 You search out my path and my lying down
and are acquainted with all my ways.
4 Even before a word is on my tongue,
behold, O Lord, you know it altogether.
5 You hem me in, behind and before,
and lay your hand upon me.
6 Such knowledge is too wonderful for me;
it is high; I cannot attain it.
7 Where shall I go from your Spirit?
Or where shall I flee from your presence?
8 If I ascend to heaven, you are there!
If I make my bed in Sheol, you are there!
9 If I take the wings of the morning
and dwell in the uttermost parts of the sea,
10 even there your hand shall lead me,
and your right hand shall hold me.
11 If I say, “Surely the darkness shall cover me,
and the light about me be night,”
12 even the darkness is not dark to you;
the night is bright as the day,
for darkness is as light with you.

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Psalm 143   Lord, hear my prayer,
listen to my cry for mercy;
in your faithfulness and righteousness
come to my relief.
2 Do not bring your servant into judgment,
for no one living is righteous before you.
3 The enemy pursues me,
he crushes me to the ground;
he makes me dwell in the darkness
like those long dead.
4 So my spirit grows faint within me;
my heart within me is dismayed.
5 I remember the days of long ago;
I meditate on all your works
and consider what your hands have done.
6 I spread out my hands to you;
I thirst for you like a parched land.[a]
7 Answer me quickly, Lord;
my spirit fails.
Do not hide your face from me
or I will be like those who go down to the pit.
8 Let the morning bring me word of your unfailing love,
for I have put my trust in you.
Show me the way I should go,
for to you I entrust my life.
9 Rescue me from my enemies, Lord,
for I hide myself in you.
10 Teach me to do your will,
for you are my God;
may your good Spirit
lead me on level ground.
11 For your name’s sake, Lord, preserve my life;
in your righteousness, bring me out of trouble.
12 In your unfailing love, silence my enemies;
destroy all my foes,
for I am your servant.

 

Fellowship of Saints

It has been a delight to have some new friends taking up residency here at Children’s with us.  It’s a sort of slumber party.  Ok, actually it’s very little like a slumber party but it is still a great encouragement.  Melody is a little friend that has been a tremendous encouragement to us since the beginning of our Charlie journey.  Melody was born 3 years ago with Trisomy 18.  Her story of God’s grace and mercy as well as Melody’s strength in overcoming the odds has been such a beautiful testimony.  Her mother is a deep well of wisdom and faith and has sacrificially poured out ideas for Charlie and I as we walk this unique road that she understands.  Melody was here for several days which allowed for her mother and I to visit, walk, and encourage one another.  Thankfully they are home again!  I would encourage you to visit Melody’s website to read the amazing story of her precious life and the dangerous of labeling children as “incompatible with life!”  Melody is a precious little girl, full of life and vigor, she is healthy, vibrant, and a tremendous joy to everyone that knows her.  I am so thankful her family didn’t give up when they were told she was “incompatible with life.”  This photo displays her great compatibility with life!image

http://www.melodysstory.com

During the time Melody was here another family joined us here at Children’s.  We had not met them before but we had mutual friends and a mutual love for God.  They recognized Bob and Sarah one day from a wedding we both attended.  One of the daughters came to introduce herself.  They have a son that is braving heart complications with great courage.  It has been fun to have daily visitors from their family and they have been so kind to share meals too.  Today it was fun to meet their whole family and enjoy a short message from the Bible from their pastor, sing, pray, and share a meal in the PICU lobby.  I am thankful for people who that have  experienced medical challenges in their family and walk through them with great joy and endurance, embracing what God has given them.

Praise be to the God and Father of our Lord Jesus Christ, the Father of compassion and the God of all comfort, who comforts us in all our troubles, so that we can comfort those in any trouble with the comfort we ourselves receive from God.
2 Corinthians 1:3-4

 

A new look

imagePsalm 103

1 Praise the Lord, my soul;
all my inmost being, praise his holy name.
2 Praise the Lord, my soul,
and forget not all his benefits—
3 who forgives all your sins
and heals all your diseases,
4 who redeems your life from the pit
and crowns you with love and compassion,
5 who satisfies your desires with good things
so that your youth is renewed like the eagle’s.
6 The Lord works righteousness
and justice for all the oppressed.
7 He made known his ways to Moses,
his deeds to the people of Israel:
8 The Lord is compassionate and gracious,
slow to anger, abounding in love.
9 He will not always accuse,
nor will he harbor his anger forever;
10 he does not treat us as our sins deserve
or repay us according to our iniquities.
11 For as high as the heavens are above the earth,
so great is his love for those who fear him;
12 as far as the east is from the west,
so far has he removed our transgressions from us.
13 As a father has compassion on his children,
so the Lord has compassion on those who fear him;
14 for he knows how we are formed,
he remembers that we are dust.
15 The life of mortals is like grass,
they flourish like a flower of the field;
16 the wind blows over it and it is gone,
and its place remembers it no more.
17 But from everlasting to everlasting
the Lord’s love is with those who fear him,
and his righteousness with their children’s children—
18 with those who keep his covenant
and remember to obey his precepts.
19 The Lord has established his throne in heaven,
and his kingdom rules over all.
20 Praise the Lord, you his angels,
you mighty ones who do his bidding,
who obey his word.
21 Praise the Lord, all his heavenly hosts,
you his servants who do his will.
22 Praise the Lord, all his works
everywhere in his dominion.
Praise the Lord, my soul.

Charlie is back from the operating room.  Everything went well.  He is sporting a new look.  It is hard for mama to get used to the idea of a new hole and mechanism, but I am thankful to be able to see more of his cute face and hope for continued improvement as a result of this.  He will be heavily sedated for several days to allow his trach to heal.  Pray for successful healing for the trach, for the lungs to respond well, heal, and function well as a result of this, and for his bowels to wake up and begin to digest better.

Surgery Day

Today Charlie will be going to surgery at 1:05 to try a few things to help his tummy and to give him a trach.  Please pray for protection for Charlie and for great success with these procedures.  We are praying that this very big step would help Charlie’s lungs to begin to develop and his air sacs to function properly.

“O Lord, there is none like you to help, between the mighty and the weak. Help us, O Lord our God, for we rely on you, and in your name we have come against this multitude. O Lord, you are our God; let not man prevail against you.” 2 Chron 14:11image(Charlie sleeping to some beautiful harp music just outside his room, she comes to play for him often and we both love it!)