First Snow and Upper GI study

Charlie and I woke up to his first snow day and celebrated God’s goodness to us in this beautiful gift.  The snowflakes that flutter by our window now remind me of God’s perfect and unique design of each flake and fluff- as well his unique and perfect design of each of his children, even Charlie.  This causes me to want to give praise to our God for even the things that God has allowed in Charlie’s body to bring the present difficulties.  God is worthy of our praise – yes, even in the difficulty.  It’s not easy, it’s not “natural.”  I know that God’s ways and what is best for me is not always the easy path, often it is not.  But He is God, not I.  He is worthy of praise… So,  “I will bless the Lord at all times: his praise shall continually be in my mouth.” Psalm 34:1

Charlie will go for another upper GI study this morning at 10:20 am to hopefully determine what next step is best for him.  These tests are always another opportunity to trust in the Lord.  It is difficult to let them take him away to a different floor and wait and wait, hoping for good news.  Thankfully, my faith continues to grow.  I am increasingly able to rest and trust in God and loosen my grip on the things of this world.  God loves Charlie and I and he is faithful!

Tomorrow we will be moved to a new room on the North side of the floor.  I will miss my lovely window view and southern sunshine.  I will miss our quiet hall.  There are many things we have gotten use to in this wing of the hospital.  If you haven’t already gathered, change is not my forte’.  Yet another opportunity to trust God.  So if you come to visit, we will be in a new place!

Prayer requests:  healing of the fistula, bowels to function, ability to begin feeds (breastmilk) again, good results from study at 10:20am- no blockage, comfort for Charlie’s heart, protection for my family, and contentment for me.

BONUS Prayer request:  Would be greatly blessed to get a room with SUNSHINE!  On the North side, that will be difficult.

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Charlie’s first snow!

Hope in Christ

Thank you all for praying for Charlie and I today.  We were all so surprised by the turn of events last night.  Charlie had been doing so well and showing good signs of healing and moving in the right direction.  The turn to the south happened very fast.  We didn’t really get any answers as to why this might have happened.  Our surgery team is not here on the weekends which makes it difficult to get any answers or movement.  Right now it sounds like the plan will be to let him rest for 2-3 days and then begin feeds again much slower.  This did not make sense to us because it seemed like there had to be a new block in the intestines (which is a possibility) the way things backed up.  Why would we put food back in there?  Then Bob and I visited with some friends we have made here and when we told them about it they immediately said they had been through this exact same scenario twice.  It had all appearance of a blockage, but was really just an intolerance to the feeds at the rate at which they were increased. This was encouraging and helped us to understand why they want to wait a few days and begin feeding agian at a slower rate.  Praying he will tolerate it and that there indeed is no blockage in his intestines.  Thankfully Charlie is doing well and staying strong in all other areas.

I am grateful for the elder’s that came this morning to pray over Charlie, sing, and read scripture that blessed Charlie and I.  The words were balm to my soul as my eyes were to wet to read for myself.  Thank you brother’s for loving, caring, encouraging, and serving us in that way.  I am grateful for the friends that came to the hospital without me asking, just to be with me, and listen to church together- when they likely knew I was struggling.  I am grateful for the many prayers that were prayed for Charlie today, the emails, and the texts.  We don’t deserve such wonderful friends and family, but thank you Lord!

The elder’s were talking about the great HOPE that we have in the resurrection of Jesus Christ, and telling Charlie to hope in Christ.  Bill suggested we hang a sign in Charlie’s crib that he could look at to remind him of this hope.

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 When they left I pulled out the crayons and paper and began making a sign for Charlie (and myself) to remind us that we have greater hope than that of even functional bowels. We have an eternal hope that we will one day have new bodies and will live in the presence of our Almighty God!  Charlie will receive a new body. This life is short, we are like flowers that fade away.  Our sufferings are temporal, we have heaven to set our eyes towards, what a glorious hope.  Christ is risen indeed!

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Please Pray

Please pray.  The nurse woke me up as it appears that stool is backing up and coming out the incision as well as possibly back up into the stomach.  It is still coming out at the bottom where it should be to.  We have stopped all milk and called the surgery team to come evaluate.  Thank you for your prayers.  Clinging to Jesus… Debbie

Dress Me Up

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The day before Charlie was born Bob and I went shopping for a special gown and blanket for Charlie.  Today he wore it for the first time since arriving at the hospital.  He looked so handsome!  My nurse, Erica and I had fun dressing him up.  I am not sure he had as much fun as we did though.

Today I had time to reflect on all that God has done for Charlie.  It has been the longest and shortest 2 months of my life.  So much has happened.  Charlie has gained so much health. It all blends together.  God is so merciful to soften the memories of the intense ups and downs.  I am so thankful for the peace he has given us in the recent days.  Charlie is sleeping through the night and having good days.  The pain factor seems to be little to none and his body is healing so nicely.  His wound and incision are healing.  The plan is to allow the incision wound to heal, and hopefully the fistula within the incsion as well.  It is still not leaking, which is a really good sign.  Then we will do another stomach study to make sure it is healed and NO scar tissue has developed to narrow the intestine where the fistula is.  If all is clear we will begin feeding Charlie from the stomach and mouth instead of the tube.  We had to back off on the breastmilk as his stool became very loose, meaning he wasn’t tolerating as much as we were giving him.  Please pray that he would begin to tolerate and digest well again so we can start increasing milk intake again.  He is at 6ml’s and needs to get to 18.  There was mention of a special formula they can try if he won’t tolerate breastmilk…not our desire at all.  Please pray he will tolerate milk and that the docs will have wisdom on the rate at which we increase so to help him adjust and digest.  Charlie is doing well on all other fronts.  He is a strong little boy.

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Prayer Requests:  Incision and fistula heal quickly and completely, Charlie will digest and tolerate breastmilk well, his tummy will tolerate milk and he will eat by mouth- bottle or preferably nursing, Charlie will go home soon, mom and dad will be patient- waiting on the Lord and his timing for Charlie’s homecoming.

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What’s in a name?

 

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Charles Grant Fine

What’s in this name you ask?  Well there is A LOT in this name.

Charles is the middle name of Bob’s middle brother, Brian Charles.  He is a wonderful man. Bob remembers Brian being a really good big brother, older by 5 years.  He was a caregiver and protector to Bob.  He was always looking out for him. Brian is like a giant teddy bear with a great big heart.  He is a hard worker and genuinely loves people.

Charles also means: Warrior.  God had laid it on our heart that Charlie was born to be a warrior.  We didn’t even know the road that Charlie had ahead of him at the time.  God knew he was going to need a warrior spirit to survive his first months.  Not just any warrior…

But a Grand or Great Warrior!  Grant means: grand or great.

Grant is the first name of my older middle brother Grant.  Grant is a fun-loving and tender-hearted man.  I always knew whenever I was with him he would take care of me and we would have a really good time!  It was fun to follow his footsteps into high school, because everyone that knew him loved him. Grant also has a genuine love for people and truly would lay his life down for others.

We thank the Lord for two very special uncles for Charlie.  Charlie, may you love people and fight for good things like uncle Grant and uncle Brian!

Thankful for progress

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Charlie has been doing very well.  He has increased milk intake again today and is doing beautifully with it.  His incision continues to heal and the leaking fistula inside the incision has decreased it’s output dramatically.  This is a VERY good thing.  Decreased output will encourage it to close and heal. We are still very hopeful that it will resolve itself. If this heals it means we can start putting food in his belly and we will be much closer to going home!  He is requiring very little O2 help, he is growing, sleeping, and having happy wake times.  Praise God!  Charlie enjoyed many visitors today, lots of snuggling, kisses, and loving touches.  He definitely remembers his siblings and loves when they come to visit.  Home will be a good place for him when the time is right!  Charlie’s nurse brought in a little swing for him last night and his day nurse graduated him from the little warmer bed to a big boy crib.  This was very fun for him because we were able to put a mobile and other fun toys in and on it.  He loves his little black and white mobile and will stare at it intently.  (oh anoather flight for life just arrived, always gives me the chills because it reminds me of Charlie’s arrival at Children’s – so thankful for the life saving efforts this hospital exerts daily…it is remarkable!)  Charlie is swaddled up like a burrito sleeping peacefully in his big boy crib right now.

Thank you for your continued prayers and support…God bless you!  Good Night…

Taste and See that the Lord is Good!

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Psalm 34:8
O taste and see that the Lord is good: blessed is the man that trusteth in him.

Charlie may not be drinking this green smoothie directly but he is getting it indirectly now (thanks to my green smoothie makin’ friends!) YES!  He is getting milk!!!  He is getting about 100ml’s of breastmilk every day at this point and tolerating it beautifully.  Praise God! Thank you for those of you who prayed to that end.  Once again it seemed an unatainable desire until God simply moved the mountain that stood in the way.

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(milk in a syringe being delivered to Charlie’s small intestine)

A while back two of my children came with dad to visit Charlie and I at the hospital.  My first thought when they walked in was that they had both grown!  Now, that in and of itself is nothing strange, children do that- they grow!  What struck me was that the food that was helping them grow wasn’t my cooking.  At least it hasn’t been for many weeks.  A huge portion of it has come from our amazing church family, neighbors and their church, friends, and family.  So many of you have lovingly served my family during this time by providing food for us.  It is an overwhelming act of mercy and kindness that has taken on a deeper meaning to me.

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Hot meals delivered to my family, Costco runs, grocery store runs, green smoothies to the hospital, friends droping by with lunch, bringing dinner to enjoy a double date in the hospital NICU lobby (romantic I know), a cousin who labored to bring nourishing food in the first days, a friend who maintains a weekly drop of a 3 day supply of 3 meals a day for the week here at the hospital, pizza with cousins, granola bars by mail, baskets of fruit, bags of trail mix, and so much more!

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It is humbling to be served and loved in this way during this trial.  We are grateful and overwhelmed by the sacrificial service by so many of you!  Thank you for caring for one of the “least of these” (Charlie) by helping us keep our feet on the ground while we try to care for him an hour away from the rest of our family, in order to bring him home where he belongs!

Charlie continues to do well.  He no longer has any tubes in his mouth!  This is a huge relief for him and for his mom who wants to kiss his cute little lips.  He has increased his milk intake daily while decreasing everything else.  His fistula continues to leak but everything else is looking so good.  Today Charlie was very happy and content with good alert times and great sleep times.  I held him most of the day.  We also met with a physical therapist that gave me some great ideas of things to be doing with Charlie to help him gain strength and health.  There are so many lovely people in this hospital!