God of HOPE

When the world says, "Give up",

Hope whispers, "Try it one more time".

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Throughout the past six weeks I have found myself hoping almost everyday for Clara. Hoping for growth, weight gain, negative test results, procedures/medicines to work, etc. I have also clung to the HOPE that GOD is faithful and we are loved, he has a plan.  YES even a plan for all of this. 

However in the day to day brunt of what we are going through, sometimes it feels that Hope is disappointing and exhausting. In brief moments I forget about hope, probably because I am so overwhelmingly scared. 

Holly Gerth in "God's Umbrella" says that hope is not just an emotion. It is so much more. 

"Hope is more than a  word-it's a state of being.

it's a firm belief that even if you don't know how,

even if you don't know when, God will come through

and better days are ahead. Life brings rain....

Hope dances in the puddles. Until the sun comes out again."

This is the part I really like and has really spoke to me tonight, "Hope comes from perseverance and a stubborn belief that God is faithful even when the evidence suggests the contrary. There are many times when hope seems to be gone. That's why it's important to make a conscious commitment to living in hope rather then relying on emotions."

"We must be committed to HOPE no matter what happens. Even if we don't see or feel it"  

I think I must make a conscious effort to LIVE in Hope no matter what happens. Scripture says "Those who hope in the Lord will renew their strength.....Isaiah 40:31

Show me your ways, Lord, teach me your paths. Guide 

me in your truth and teach me, for you are GOD my savior,

and my hope is in you all day long. Remember, LORD, 

your great mercy and love, for they are from of old

Pslam 25:4-6

Clara was having a problem late last week with unexpected weight loss. We were like "what is going on now", expecting an infection or more respiratory problems. She was to get extubated last week, under the condition that she would gain weight. Two days came and went and we were peddling backwards. Saturday her nurse discovered maybe it was because of the feeding pump, perhaps being set a the wrong mode, since she had noticed 2mls of milk still in the syringe. ?????? So since this discovery Clara gained weight Sunday and today.  Saturday she weighed 840 and today weighed  weighs 890 grams. Almost two pounds. She looked so much bigger and longer to me today. I was delighted to see her all stretched out on her belly when I walked in her room this morning. 

Plans for this week: 

This Wednesday Clara will have her first eye exam, looking for ROP. Retinopathy of Prematurity  is is a disease of the eye affecting prematurely-born babies generally having received intensive neonatal care. It is caused by disorganized growth of retinal blood vessels which may result in scarring and retinal detachment. Her chance of having some form of this are 90% because she was born less than 750 grams. This is something that babies can outgrow with minimal or no harm done by the time are 3 to 4 months past their due date. 

After this exam, maybe this Thursday, with hopefully more weight gain they will try and extubate Clara again. 

She also had another blood transfusion because of a border line hemoglobin. They wanted to give her another boost before the possibility of extubation. 

I did get to listen to Clara's heart beat today through a stethoscope, and listened to her PDA murmur. It sounded like a washing machine!! They do think it has gotten smaller and that why it has a different pitch and is louder. 

Her vent setting did get tweaked a little over the weekend, and her PIP went back up to 16. She has has some unexplained bradies, where her heart dips low and slowly she gets it back up. They haven't had to assist with this, and as of today didn't seem to think it was a problem. 

Specifically pray for getting off the vent this week, successful eye exam with: peace and understanding with outcome, and continued weight gain. 

I also wanted to send out a huge thank you for those who have sent cards, gifts, dinners, etc. If I haven't sent an individual thank you note to you yet, please know we appreciate your thoughtfulness. I think of you, every time I put gas in my car, pay for parking, or sit down and eat a great meal. Our hearts are full of love and gratitude for everyone. I hope that you have been equally blessed by GOD, with your love and support of our family. We will never forgot how you individually got us through this time in our lives. 

Good night!!