It's Okay not to be Okay

God has not promised sun without rain, 

joy without sorrow, peace without pain.

But God has promised strength for the day,

rest for the labor, light for the way,

grace for the trials, help from above,

unfailing sympathy, undying love.

Annie Johnson Flint

A new friend from church came to visit me at the hospital today. I know she must be truly amazing because she drove in rain and traffic just to spend a little time with me. I wish it could have been longer Sherry. She brought be a bag full of goodies, books! One particular book "Under God's Umbrella , Gifts of Hope & Encouragement to shelter your heart in life's storms" by Holley Gerth. I have started reading it tonight. The first chapter is called It's okay not to be okay. It has really spoken to me and I think how applicable this is in any situation where you are struggling. I am going to paraphrase this chapter. 

"A lot of us handle the storms in our lives like we are fine, just fine. We stand in the rain, soaking wet, with a smile on our faces and say "I'm dry, really I am dry". Sometimes as Christians we think we need to be happy all the time. if you are not happy, what will people think about Jesus. But what happens when it's just not a little shower but a full out force hurricane in our lives. Should we remain just fine? The author talks about when we let the hurt pour out, we will not find stares if disapproval but we will find something unexpected, LOVE. We will find the kindness of friends and family. We will hear comforting words, and the whisper that GOD is with you. We will also discover that everyone has some type of rain in our lives. We are one big beautiful, soggy mess. It's okay to admit that we are not okay. That when we embrace that grace. we're finally free to discover that love is waiting for us in the center of the storm. " Gerth

I decided to be come so forth coming with Clara, through this blog for many reasons. One reason was to keep friends and family updated with news about Clara and to tell her story, and the other was to just pour out the frustration, hurt, fear of what was going on. Also with scripture that I post, which is encouraging me, maybe it can encourage others. Through out this all We have found LOVE through other people. We have found kindness, understanding, felt prayers, comfort and through others we have heard the "whisper that GOD is with us" 

A week or so ago I read "Beware of trying to impress others by acting as if your giant steps are only baby ones" (young, Jesus Calling) Also very interesting and very encouraging that it's okay to show others "we are a soggy mess". 

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Clara today is 820 grams,  over a pound and a half? Team reported that she made some progress over the weekend. Chest xray films look better, and her heart is 1/3 smaller (it was bigger because of the fluid) "Clinically" (a word Dr. used...whatever that means?) she look like she is improving. He decided to do another round of indomethacin for PDA, three total doses. First dose this morning, one tonight, and one more tomorrow night. Then we will see. Dr.  is not anxious to recommend surgery because of the infection, which is still being treated. So PRAISE some progress, just need many prayers the next dose really helps. 

She also got another blood transfusion today. They did go down a little on vent to a PIP of 16, however I noticed her oxygen was up mostly in the 50s and 60s. All morning she bradied like three or four times. That is when her heart rate would dip very low and then come back up. Only once I think nurse had to assist to  bring it back up. The O2 number also swung up and down all day, which is from the PDA. At one point I felt so overwhelmed, because there was nothing I could do for her and I just listened and watched her and wanted it to stop. I told the Nurse Practitioner that I was over this PDA, and I just want it to be fixed. I feel that we have been stuck in the same spot for weeks, and I am anxious for things to move forward. She reminded me to be patient, and that all parents feel this way. So nice to know I am normal. Over all frustration! 

My time did get better because I got to change two diapers, and help hold her up so they could change her bedding. Bonus! She was very alert today and active. I stayed a little later than normal and felt that I spent lots of time helping her. I felt more like a mommy. 

This evening we had a wonderful dinner prepared for us and a nice visit from a long time family friend. Also my best friend came to visit as well. Sooooo...three visits from great people, overall good news,  and lots of time with Miss Clara. God is Good.