What it's like..

As I've had a chance to adjust to the ups and downs of the CICU I've learned a lot about life, a lot about love and a lot about  myself. 

Now that things have slowed down and I can even think a normal thought I reflect on how long yet so short these 3 weeks have been. This journey sometimes has already felt like a lifetime."

The night before surgery I remember holding her and just holding back from bawling. I knew that tomorrow she would have her perfect chest scarred. Her heart would be stitched in all different places and she would be either with us or not with us. Below are pictures the night before with her jaundice and chest being rubbed for sanitation purposes.

I knew her chances were great but there was a chance I would never hold her again. I would never smell her smell again. I would never feel what it was like to see her look at me. I bawled leaving the hospital and just prayed "heal London..and I hope it's with me."

Surgery day comes around and I could truly feel the magnitude of prayers for us. I honestly believe I couldn't have done it without it. I sat in the family room with family and just zoned out. I honestly don't remember what I even thought about it felt. God gave me an "out". When it was finally over we were allowed to go back and see her. London did excellent during surgery but horrible late that night and throughout the night. I looked at Trey and cried saying "I just need to wake up and it's tomorrow." Im not going to put it lightly, we were brought to hell. Having 15+ people surrounding your baby and her losing so much blood they bring in 22 transfusions is nothing I will ever forget. The rush and stress of the room will never leave me. Clearly as you can imagine we felt so helpless and are basically begging God for this to go well and turn around. 

My first big meltdown was the day after surgery. I walk in and she looks like a totally different baby. Most moms would probably  take pictures to remember what the baby went through..I will never want to remember that. Her personality was taken from me. Her chest was still open. No matter how many doctors tell me otherwise, the feeling of "I did this to you" screams at you all day. Your child looks that sick and it's a horrible mind game. I cried at many reasons: she's temporarily "gone" from the sedation, she's so terribly sick from a heart that will never totally be "fixed", and I miss her. That day is a hurt I will never forget..How much I missed London. 

Every time a doctor or technician comes in her room to look at her my stomach drops. A Hypoplastic heart has robbed me from thinking "that wouldn't happen to us?"..now I think all things would happen to us. I love her so much and have already known way too many times the feeling of "what if she's not here tomorrow?"

With a heart baby there are many emotions. The main emotion I feel is fear. I will admit many many times I am scared of London. She's such an angel and this world tells me every second I should be scared of her. A friend of mine that has a hypo-plastic  baby sent me a message the other night and we were talking about this very thing. She used to remind herself of that precious verse.."I have prayed for this child and have been given the desire of my heart."

I know for a fact Jesus knows how much I love London, how much I want London here with us and the desire of my heart. The desire of my heart has already won many battles medicine told me were not going to be won.