Month: June 2016

Thursday’s transition to the ninth floor was wonderful.  Everything went very smooth and Charlie seemed quite happy about moving one step closer to home.  When we arrived his oxygen began saturating at 100 and we quickly weaned him almost to room air.  1% to go.  He was full of smiles and greeted all of his new caregivers with joy.  The following day he had his first tub bath in nine months, excellent therapy/play times with huge strides forward and he slept through the night.  The ninth floor is very different from the NICU.  There is a lot more privacy and independence.  Their goal is to get Charlie home.  The NICU’s role is to keep alive and get him stable.  So, it is a welcome change as we love taking full care of him and getting more independent.  We have learned a lot and there is more to come next week.

 

It was a very sweet farewell (I mean see you later!) to Charlie’s primary nurses in the NICU.  Here are some of the faces that were there the day Charlie moved.  It was a teary farewell as we recalled all that we have been through together.  These lovely ladies and several others have hung in there with us through thick and thin.  Months of blood, sweat, and tears for this precious little boy.  There are no words to thank you all enough.  Thank you for tending to wounds, changing diapers, feeding, giving meds,  playing with, advocating for, dreaming about, rocking, praying for, dressing, bathing, and LOVing our little Charlie.  Charlie’s primary nurses gave him a signed book written to “Charlie” and personalized.  It was a very special farewell. The gal with the yellow flowers and balloon pictured above has become a very sweet friend.  She was so excited that we were on a floor where we could have live flowers and so she welcomed us into our new room with a sun balloon and beautiful flowers!  So sweet.

I was so happy that Sarah could be here to help us move and get settled.  She is an amazing helper and Charlie thinks she is wonderful too!

 

Ninth floor here we come…just minutes away from Charlie’s BIG move upstairs.  The “Finebunch” couldn’t be more excited or thankful!  God is SO faithful!

Today we heard the words we have been longing to hear for a long time!  TRANSITION CONFERENCE!!!!!!  Yes, Charlie’s transition conference will be held tomorrow in preparation for moving upstairs to the ninth floor.  Our house is elated as are many of our prayer warriors I know!  Even our littlest one’s were rejoicing that “Charlie’s going to the ninth floor!”  They tell everyone they see.  Strangers have no idea the joy behind that announcement.  Nine months, nine long months…and God’s gracious favor moves us forward in HIS perfect timing.  We are hopeful that we will get to move up soon after the conference but don’t know when that will be yet.

PRAYER REQUESTS:  SUCCESSFUL TRANSITION CONFERENCE, SMOOTH MOVE UP FOR CHARLIE, QUICK STAY UPSTAIRS, SMOOTH TRANSITION HOME, DECREASED OUTPUT, ABILITY TO EAT MILK. THANK YOU WARRIORS!  YOU HAVE BEEN SUCH FAITHFUL FRIENDS THROUGH THIS JOURNEY!

Charlie is wearing a T-shirt that says, “Jump! Jump! Jump! For JOY!”  This is what mom and dad were doing yesterday during Charlie’s FIRST WALK out of his room.  I think if Charlie could jump he would have been as well.  We had been talking about his “first walk” for a while but it took a few things falling into place for that to happen.  We had discussed a few different distances that we could attempt and if at any point he acted overwhelmed, we would turn back.  Well, he never acted overwhelmed!  We went down the hall, out to visit the fish tank, down the elevators, out to the front picnic area, around the building, back in through the side doors, down the halls to the elevators, back up the elevators,and back to his room.  He was so happy and interested in all the new happenings.

 

(Charlie through the fish tank)

 

 

 

 

 

It was such a joyous time taking our boy for a walk.  It felt so…normal, awkwardly normal.  THANK YOU GOD for the gift of Charlie and for all the mighty works you have done in and through him since September 3rd 2015.  I marvel at the healing you have brought to Charlie’s little body, the preservation of his sweet little spirit, and the joy in his heart and on his face.  It brings us joy indescribable!  And God- thank you for the sweet little walk you gave us with Charlie!  We do not take one little thing for granted with this little boy.  Glory be to YOU!

Psalm 24:7-8
Lift up your heads, O gates, And be lifted up, O ancient doors, That the King of glory may come in! Who is the King of glory? The LORD strong and mighty, The LORD mighty in battle.

We are getting closer each day to moving towards the ninth floor.  We received a tour and got the low down on all of the differences of the ninth floor versus the NICU.  I nearly cried when they showed me the PRIVATE rooms.  YES!  No more fish bowl living.  The rooms have no open glass windows or doors and she even said that they knock before they come in…what?  Don’t get me wrong…  I am SO grateful for the great, 24/7 care we have received over the last nine months, but imagining being in a room alone with my Charlie, where I am his primary care giver is such a wonderful thought. We will miss the sweet nurses that have cared for and nurtured Charlie with all their hearts.  Sadly, we can’ take them up with us.  We couldn’t be more thrilled about the steps towards home!

Once we get to the ninth floor, it will probably take us 3 weeks of full time hospital to get all the training, proficiency, and requirements met so that we can bring Charlie home.

The med that they used to try to slow down or stop the output didn’t work as effectively as we had hoped and so they stopped that and will give his body time to sort things out.  Our hope and prayer is that his body will maintain this lower output as we remove the med and that it would continue to drop.

PRAYER REQUESTS:

OUTPUT SLOW DOWN; BOWELS WORK PROPERLY; BEGIN MILK AGAIN; STRENGTHENED EYE MUSCLES SO THEY DON’T CROSS; SMOOTH TRANSITION TO NINTH FLOOR AND HOME; PROTECTION FOR SICKNESS AND INFECTION.

Charlie is taking his Sunday afternoon nap now while Naomi is snuggled up to me reading a Golden Book aloud.  I love listening to beginning readers read!  We spent the morning on the play mat with Charlie watching church, singing, praying, and enjoying God.

I am struggling being patient!  Bob said it well…he said getting a discharge date is like getting a beluga whale to do a flip.  Now that made me laugh!  That analogy summed it all up.  Charlie is ready for home except for getting this high output/gut situation sorted out.  We have been told it could be a few more weeks before we make it to the ninth floor.  This is discouraging as the medical team turns over again tomorrow and we do not want to lose momentum.  So, here is how you can pray:

PRAY THAT CHARLIES GUT WOULD BEGIN TO FUNCTION PROPERLY:  DECREASED OUTPUT AND ABILITY TO INTAKE BREASTMILK.

PRAY THAT WE WOULD NOT LOSE MOMENTUM TOWARDS HOME (RATHER GAIN) AS THE DOCS TURNOVER THIS WEEK AND WE GET A NEW DOC THAT HASN’T MET CHARLIE BEFORE.

PRAY FOR MORE ENDURANCE, STRENGTH, HOPE, AND JOY AS WE WAIT AND WALK.

PRAY THAT CHARLIE WOULD CONTINUE TO GROW, DEVELOP, THRIVE, AND FOR PROTECTION FROM INFECTION.

                                     (Thanks for the fun day at the pool Grandma and Grandpa!)

We are so excited about all the progress Charlie is making.  He continues to work hard to meet milestones in his development.  Of course his mommy and daddy think he is a genius- no matter what!  When his Aunt Jenny was here this week Charlie began mimicking puckering and kissing.  We were elated!  There is a little video of one of his first one’s on Instagram- Debbie Fine.

The medicine we started last week has caused his output to steadily decrease.  Today there will be discussion about whether we stay on the medicine or not, which will determine when we can move to the ninth floor.  In some ways this journey has gotten easier as Charlie has gotten better and better, in other ways it tugs more on the heart strings- we want him home!  Oh how we long to reunite Charlie with his family.  He is so hard to leave at the hospital when I go home.  Then it is tough to leave the family when I am at the hospital. BUT GOD! Has been faithful to give the strength, the joy, the hope, and the encouragement to continue on.  It is hard to imagine the emotion that will come when that day arrives that we can bring him home with us…  We have longed for and prayed for that day for so long.  We continue to trust that God’s timing will be perfect.  Thank you for your prayers!  The main prayer request is for this output to decrease to a point we can begin giving him substantial breast milk and transition him off of IV nutrition to food.

Today we had a care conference that enabled us to determine a goal for getting moved to the training floor.  The team was very optimistic that this could happen soon.  His respiratory status is excellent and if his gut weren’t involved we would already be up there.  The continued prayer request is for decreased output.  This would remedy many things!  Regardless we should be moving upstairs within the next couple of weeks.

We marvel at how relatively “simple” Charlie has become!  He has come SO far and even the doc was marveling at how little support he is on.  He is so happy and loving his new found mobility.  Today I thought he was going to jump out of the crib into Sarah’s arms.  He has this way of thrusting himself and rolling all at the same time to get where he wants to go.  Today we got him onto a play mat and worked on sitting up, rolling, and just enjoying new scenery.  It was precious.

This is our sweet PT who comes up with all sorts of ideas to help Charlie catch up!

Charlie had got to meet another prayer warrior who has been on his team for many months.  They came from Utah and were good friends of my mom and dad’s.  What a blessing for him to meet so many from all around the country that have linked arms with us through prayer for this little boy.  Thank you Barb and Rusty!  And thank you to so many of you that pray for Charlie…may God be glorified by all the prayers and the healing that God has brought to our boy.

Today Charlie received his first haircut.  Riley was so gracious to come and use her beauty school skills to trim him up.  Charlie wasn’t so sure about the clippers but loved the scissors.  He kept looking at Sarah with wondering eyes asking if this haircut thing had her approval.  He looks so handsome!  Thank you Ri!!!

 

Greetings from Charlie at Children’s Hospital! Charlie has had some really amazing days with lots of progress. He is on the fast track home! We are so thankful and filled with rejoicing. The days are still full and long and we anticipate the intensity of our journey picking up again as we receive loads of training and preparation for going home with our little lion-heart. We will be moved to the 9th floor within the next couple of weeks where they begin to turn everything over to mom and dad to prove our capability to care for Charlie. They do many simulations, classes, tests, and then a final exam- 24-48 hours alone with Charlie with no staff to assist unless there is an emergency. I am working diligently to be proficient in everything I need to know.  It comes easily as I have been doing or watching for many months now.  Who would think that changing a trach tube could actually be really neat?! Praise God for giving me the desire to have fun learning things I never would have likely signed up to learn!

We have one little road block that could slow us down from coming home, and so I am asking you to pray. Charlie continues to “dump” stool (too much liquid comes out too fast). We need his little body to start slowing down, digesting, and absorbing his food and fluids. He has done well before and so we know his body knows how. God has been SO faithful in bringing wisdom at the right time, we trust He will continue!
“If any of you lack wisdom, let him ask of God, that giveth to all men liberally, and upbraideth not; and it shall be given him.” James 1:5

Charlie has begun sucking really well.  He is showing signs of wanting to nurse or eat by mouth- this is all very encouraging.  He loves to be held, read too, sung too, play with his o-ball, sit in his stroller, do exercises and play games with the physical therapists.  He is so much fun to be with.  Yesterday the girl’s and I along with a good friend took a class to learn everything about how to care for the central line.  That was fun!  We had a “Chester” the chest to practice changing caps and dressings.  We had lots of laughs and loved learning the nitty gritty of it all.  Charlie loved his visit with his big sister’s- oh how he loves and trusts them, it is quite sweet!