Good Day

“Do not fear, for I have redeemed you;
I have called you by name; you are Mine!
“When you pass through the waters, I will be with you;
And through the rivers, they will not overflow you.
When you walk through the fire, you will not be scorched,
Nor will the flame burn you.
“For I am the Lord your God,
The Holy One of Israel, your Savior;                                              Isaiah 43:1-3

Thank you Lord!  Today was a very good day for Charlie.  He has not had a fever for 48 hours.  He hasn’t needed any pain meds.  The breathing tube came out today and he can now be easily held, I can hear his cry, he can move his head around, and he isn’t gagging on that tube in his throat anymore.  What a relief.  When that tube came out I snatched him up and didn’t want to put him down.  We snuggled for a long time.  He is sleeping peacefully now.  Thank you Lord!  And thank you to all my prayer warriors…

Prayer:  that the fever would stay away, fistula heal, move to milk soon, protection from any bugs/infections, peace and contentment.

Holding Charlie tonight…

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Fever Returns

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Sometimes the day seems long, our trials hard to bear,
We’re tempted to complain, to murmur and despair;
But Christ will soon appear to catch His Bride away,
All tears forever over in God’s eternal day.

It will be worth it all when we see Jesus,
Life’s trials will seem so small when we see Christ;
One glimpse of His dear face all sorrow will erase,
So bravely run the race till we see Christ.

Sometimes the sky looks dark with not a ray of light,
We’re tossed and driven on , no human help in sight;
But there is one in heav’n who knows our deepest care,
Let Jesus solve your problem – just go to Him in pray’r.

It will be worth it all when we see Jesus,
Life’s trials will seem so small when we see Christ;
One glimpse of His dear face all sorrow will erase,
So bravely run the race till we see Christ.

Life’s day will soon be o’er, all storms forever past,
We’ll cross the great divide, to glory, safe at last;
We’ll share the joys of heav’n – a harp, a home, a crown,
The tempter will be banished, we’ll lay our burden down.

It will be worth it all when we see Jesus,
Life’s trials will seem so small when we see Christ;
One glimpse of His dear face all sorrow will erase,
So bravely run the race till we see Christ.

(THANK YOU Bill- these words were balm to my weary bones)

This morning Charlie still had not returned to his normal self since the last fever and the fever was rising again, he was inconsolable.  My heart ached that I could not pick him up to help him.  I did everything else that I could to try to comfort him, to no avail.  His temperature got very high. At that point they had run every possible test for an infection except a spinal tap.  Not what I wanted to hear.  They decided to test his spinal fluid in case there was infection there.  It too came back negative.  The last possibility is that it is a virus.  That panel is being run now.  Praise God his temperature is back to normal now.  He is peaceful and comfortable.

Prayer requests:  fever resolution/ no more infection, healing of intestines, ability to begin feeding him milk soon, peace and patience for mama, perseverance for Charlie, and that God would be glorified!

The LORD of hosts is with us

Psalm 46

1 God is our refuge and strength, a very present help in trouble. 2 Therefore we will not fear though the earth gives way, though the mountains be moved into the heart of the sea, 3 though its waters roar and foam, though the mountains tremble at its swelling. Selah 4 There is a river whose streams make glad the city of God, the holy habitation of the Most High. 5 God is in the midst of her; she shall not be moved; God will help her when morning dawns. 6 The nations rage, the kingdoms totter; he utters his voice, the earth melts. 7 The LORD of hosts is with us; the God of Jacob is our fortress. Selah 8 Come, behold the works of the LORD, how he has brought desolations on the earth. 9 He makes wars cease to the end of the earth; he breaks the bow and shatters the spear; he burns the chariots with fire. 10 “Be still, and know that I am God. I will be exalted among the nations, I will be exalted in the earth!” 11 The LORD of hosts is with us; the God of Jacob is our fortress. Selah

Tonight I find tremendous comfort in Psalm 46.  God is my refuge, strength, help, and fortress.  He is oh so very present.  Though the earth gives way, mountains moved, waters roar…I will rejoice in the LORD.  Tonight I needed more faith, HE generously gave.  I thought I might crumble, but he scooped me up, gave me strength and tucked me into my refuge- Himself.

Charlie spiked a 105 fever tonight and was having difficulty breathing.  After a few days of knowing things have been “off” we now know that they definitely were.  Charlie has been reintubated, meaning he is back on ventilation or the breathing machine.  He was very distressed.  We have many tests out in hopes of finding the source of infection.  It is likely his central line or his open wound.  We will be having a team conference to discuss what we will do next.  We cannot sit much longer with this open wound.  May God give the docs, surgeons, and parents wisdom.  God have mercy on my precious little Charlie.

I had a beautiful day at home with my family before this all went down.  Just being with my children, reading stories, snuggling, kisses, holding, giggling, talking, singing, praying, discussing God’s goodness, and being reminded of what a joy it is to be a mother.  There really is no other job in the whole world I would rather have.  I had a sweet conversation with Isaac, my four-year old a few hours ago.  I was telling him that he has been SO brave by letting mommy be at the hospital with Charlie so much to help him get better.  I told him I miss him SO much and can’t wait to bring Charlie home to be with him.  I told him that Charlie misses him and is working very hard to get better.  Isaac twinkled and almost seemed as if he was happy to be a “big” boy for Charlie’s sake.  I told him that I was sure God was well pleased by how loving he was being to share mommy between home and the hospital.  Isaac has missed mommy, but he is being so courageous…hmmm, Courage is his middle name.  The love and faith of my children encourages my heart.  It feels as if we have all linked arms and gone to the front lines to war for life, the life of little Charles Grant whom we love so much.

 

ONLY the Great Physician

Please be in prayer today as we do a few more tests to try to determine if there are any problems keeping Charlie from healing and if there is anything that can be done to help him heal more quickly.  His tests begin at 2:00 and should end by 4:00.  I know that God knows what Charlie needs and is the only source of healing for Charlie.  Please pray for wisdom from God for the doctors in regards to Charlie.

The doctor team is stumped on what to do- May God give wisdom abundantly!!!

Charlie Praise/Prayer

 

Praise: the pulmonary specialists came in last night to tell us that after reviewing the information, Charlie does NOT have Cystic Fibrosis. One of the numbers on the test was slightly elevated, but would be expected for a baby that has recently had surgery. They have one last test they want to do before they clear him 100%, but they indicated that it would be very unlikely for him to have it. At this point with the information we have, if this final test were positive, it could only be the most mild form of CF which involves few to no symptoms. They said they don’t expect that. They were unhappy about how I was given the MISinformation to begin with, but I just wanted to praise to God for the good results so far! God has been so faithful and merciful- even in the darkest valley’s.

Prayer: We are still in a holding pattern with no feeds until his fistula stops leaking and his bowels begin to move again. He has had some increased pain as well. These are our top priorities right now. THANK YOU for your prayers!

In the Shadow of the Almighty,
Debbie Fine

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Aunt Shannon, cousin Jake, and cousin Weston                                                    travelled from UT to visit and help.

Correction

My last post explaining that Charlie MIGHT have cystic fibrosis had some misinformation in it.  The doctor told me that he wouldn’t survive infancy.  However, when the specialist came in to talk he told us that IF he indeed has it, that it is not a big deal.  It is pretty simple to treat and he would most definitely survive infancy with it and go on to have a normal life.

Charlie’s aunt and 5 cousins drove in from Utah today to be with my family and help switch out summer clothes for winter for a few of the kids and just help out.  She brought some of her gifted cleaners and organizers with her!  They stopped in to see Charlie and pray for him.  What a blessing!

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Happy Birthday Nana

(Written November 13, 2015)

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Dearest Charlie,

Today, 70 years ago, your Nana was born.  Today I think of her, remember her ways, delight in the memories of so much:  laughter, joy, nurturing, tears, hugs, kisses, german chocolate cake, her favorite perfume, carrot juice, marathons, joy, gardening, chicken noodle soup, her sacrificial ways, her powerful generosity, chocolate chip cookies, her life-giving tendencies, farm girl stories, modesty, humility, joy, M&M’s, burrito wrapped grandbabies and did I mention JOY?!  Your Nana was a very joy-filled woman.  She could find a ray of sunshine in any circumstance, and there she would camp.  She knew how to brighten a room with her smile and beauty.  She would help us children awake in the morning with a song, some cheer, and an opened window.  She would proclaim, “It’s time to rise and shine!  It’s a beautiful day!  So many good things to do!”

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Charlie, if your Nana were here today she would LOVE you to pieces.  I am sure she would burrito wrap you like no professional nurse ever could (and they are good).  She would snuggle and kiss you.  She would sing and pray with you.  She would hug your mama and cry with her too. She would share cute stories about your cousins.  She would make your mama smile and feel lighter.  She would sell her belongings if it meant your life.  She would tidy your room in a functional and beautiful way.  And if this all wasn’t enough…she would have ALL our laundry clean, folded, ironed, and put away.

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Charlie, I want you to know from where you have come.  You must know your grandparents, great, great-great, and so on… But today, on your Nana’s birthday I want you to know that she would want you to fight this battle well (you are), she would want you to have a song in your heart (you do), she would want you to trust in Jesus (you are/will), she would want you to shine that light brightly to everyone you meet (definitely are!), she would want you to drink your green drink (I am), and enjoy a small bit of chocolate when able (I am), and little Charlie she would want you to get well so she could teach you to hula hoop, jump rope, twirl baton, sing, jump on the trampoline, and have laughing sessions…where you laugh together until you literally have tears in your eyes and you are rolling on the floor!

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When your Nana was just hours from entering eternity with our King, I kissed her and touched her and I promised her that any grandbabies that came after she left would know her intimately.  She heard me and as much as she wanted to stay here with us we knew that she longed to be with her Savior, home.  The last thing she mouthed was “It is well with my soul” as our family sang to her. As much as I want her here with us right now, I would never wish her back from Paradise.  She is in glory- the eternal presence of our King, where we will join her Charlie, in God’s perfect timing.  Happy Birthday Mom!

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his mercy endureth forever…hard news

“O GIVE thanks unto the LORD; for he is good: for his mercy endureth forever!”                  Psalm 136:1

It has been a challenging few days for Charlie. The professionals are a bit stumped and feel that we can really only wait at this point. Hoping for the incision and fistula to begin healing. The doctors came in a little bit ago to give us the news that the two newborn screenings that they do have come back positive for cystic fibrosis. This is not definitive, but very likely. This would explain some of the difficulties we are having and potentially create many more life threatening challenges. At one point in the conversation the doc told me that many do not survive infancy with this, though the tests can be skewed on that.

Please pray that if God wills, the confirmation test would be negative, that Charlie’s incision and fistula would heal, that he would be protected from virus and bacterias present in the hospital, that Bob and I would bless the name of the Lord even as the difficulties seem on the rise.

Hallelujah!
Blessed be the name of the LORD,
Debbie Fine
http://www.lionheartedcharlie.org
Sent from my iPad

Where does my help come from?

“Where does my help come from?  My help comes from the LORD,                               maker of heaven and earth.”  Psalm 121

Sunshine it is!  The Lord heard and answered…the charge nurse told me that she felt so bad for our 6th move, that she gave us the best room in the hall- full of sunshine.  Thank you Lord, Charlie can still receive his daily sun baths.  This room is unusually full of sunshine with Savannah visiting me and staying here tonight.  What a delight!

Charlie has had a more difficult time in the last 24 hours.  We think he is feeling uncomfortable since his upper GI study.  His incision site didn’t look very good tonight and he was so uncomfortable that I requested the surgeon come take a look.  The NP came first and agreed so she called in the surgery fellow and agreed so she called the surgeon.  He, the top dog, didn’t know what to say.  Everyone’s hands are tied.  No answers.  No resolutions.  No clue!  Thankfully my top dog isn’t a surgeon.  My top dog is ALL powerful, ALL knowing, ALL sufficient, ALL capable, ALL loving, ALL amazing, ALL sovereign, and completely able to heal every disease, wound, and fistula- in His time.  We need God to heal Charlie.  No one at the finest Children’s hospital in the country can seem to help us with that right now, but God can.  Please pray with us that Charlie’s fistula and incision would close up and heal.  Also that he would begin eliminating again and be comforted.

I am thankful for another sweet day with Charlie, praying God will heal him rapidly so that he can go home with his familyj.

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Annie and Ross visit Charlie

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LuCinda snuggles Charlie

GI Study Today

Thank you for praying for Charlie’s upper GI study today.  We had a wonderful morning snuggling in the sunshine singing and praying.  Charlie was so peaceful.  I enjoyed the time studying the fearful and woderful creation of his darling little body.  I marvel at the magnificence of God’s creation.  In Charlie it  his is beautiful hair, fluffy fuzz on his skin, plump pink lips, long eye lashes, chubby cheeks and lovely little ears.

The study went very well.  They confirmed that everything is clear and looks good except for the fistula that we already know about.  This is a wonderful praise to know that there is no blockage or problem.  It also confirms that the source of the problem including the leaking fistula was just increasing feeds to quickly for his body to adjust.

Psalm 9:2 I will be glad and rejoice in thee: I will sing praise to thy name, O thou most High.