Clara is 75 days old, and gestational 35 weeks. She is over 4 lbs and 42 cm. These photos were taken today. You can see her big bad scars. I was shocked to see how large it was. Something defiantly she will carry with her. I have not mentioned yet that Clara is officially out of her isolette and into a bed. They might even soon put her into a crib. This bed that she is in has a warmer above so is helpful to keep her warm, while she can't be clothed and swaddled. 

It has been three days since surgery. The doctors believe that she will only see about a 20% gain, respiratory speaking. Although her vent settings are slightly better, not near as what we hoped. This was again disappointing. We had high hopes, even though we knew it might not have helped at all. 

Today her oxygen was up even more, especially when she was on her back and side. She does better on her belly, like the photo, so they kept her there most of the day just turned her head often. 

They were still trying to manage her pain, which could have a part in her higher oxygen settings. But no way of telling until she has had adequate time to heal.  Her de sats have been better, not as severe or as much. 

We do not regret that we choose the surgery. She recovered very well, better than they thought, and at least we know it is fixed. Since it is fixed we hope to see even more growth (to out grow the lung disease) and hopefully smaller gains throughout the future. 

Every now and then she would peek her eyes opened at us, but slept most of the time. Because of her prematurity and lung disease Clara does not respond to touch. Rubbing her, like you would a baby only agitates her. However if her arms or legs are flailing you could hold them down to calm her. She likes containment, like she would if she was still in utero. Noise and sudden movement, also agitates her. That's why her lights are usually off and her glass door is closed. All of this is hard for Jason and I, because naturally we want to touch and soothe her. There is nothing more frustrating and painful not being able to comfort her.

However I can watch and memorize everything about her that day. A lot of times when I am there, my sadness just consumes my thoughts and I am not able to focus on just how amazing she is. Today I really tried to just spend time watching her and focus on how much I love her and how beautiful she is. 

Through out the past several weeks, I have often asked why this is happening to us and to Clara. I even asked my minister this when he prayed with us on Tuesday. I say all the time, I just don't understand. Tonight I read something related and wanted to share. The author of one of my favorite little books, Under God's Umbrella by Holly Gerth writes about losing her baby, and feeling like a small holocaust had happened in her heart. She remembered saying "I don't know, but I feel as if God is asking me 'Will you love me for who you want me to be or for who I am?'" Even though we want God to allow no suffering we have to "release those expectations and decide that despite it all, He is good, He loves us, and we Love Him."

In my frustration I ask  God why can't he intervene, why can't he change Clara's story. Why hasn't he, when will he. I believe with my entire being that he can. But why hasn't he? This question stays with me all the time. But Holly Gerth in "Under God's Umbrella" says

"At some point we all come to the place where we're asked to open our hands, release our questions, and embrace the One whose ways we do not understand but whose heart we know. And the moment we can finally trade our "why" for a "who", the rest of the journey changes" (Gerth) 

And I realize that I may never get my questions answered in the lifetime, but that does not shake my belief or trust in Him.

Please continue to Pray for Clara this weekend. Next week we will have a family meeting and decide what our next step is.