There have been no posts in the last two days because after 6 months of taking hundreds of pictures a day of Lauren my computer couldn't take any more. I really should have deleted some but I like to live life on the edge and push it as far as I can.
Today has also been a rough day emotionally for me. I think that much of it is because I slept beside Lauren in the ICU last night so that I could feed her and the flourescent light in the face and crying of the baby beside her made sleep quite elusive.
Looking at Lauren, you would think that she is perfectly healthy, and I have been focusing on that rather than her heart difficulties but today we were reminded of her sickness. I didn't cope with that very well.
This is what I see during that day...
When I look at her, I see her smile and the way she is reaching to play with her toys. I don't see the incision down her chest or the hospital bed around her. But when the doctor came to talk to us today, he told us that her heart function is still very poor. She has a significant amount of scar tissue on her left ventricle from 5 months of it squeezing as much as it did to compensate for the lack of oxygen. That scar tissue is impeding on its ability to squeeze blood out and her left ventricle is still twice as big as it should be. Then they started talking about learning disabilites that she might have from the time when her heart stopped. It was just too much for me. Rather than focusing on my beautiful girl and the fact that her valve looks good and her heart is getting oxygenated blood, I started to see nothing other than her poor heart function.
It took all day for me to be able to refocus again. I had to willingly choose to throw off my heaviness and put on the garment of praise. I have so much to praise the Lord for - the first being the fact that my baby is able to smile at me. As a mom, I ache to have her instantly healthy, fat again, and back at home with nothing to worry about, but there is only so much that I can do. I can keep myself healthy to be there for her and feed her and I can pray like a freak.
It is easy to think that Lauren is healthy and doing great, but she isn't. Her heart function is still poor, she is not yet stable with her medicine, she is still exhausted, and she is way too skinny. Please join with me in my mission to pray like a freak. I don't ever want to be told that her heart function is poor. I will be praying that miracles continue to happen. I will be praying that Lauren gets all of the nourishment that she needs from me and that she gains weight at a rapid rate. I will be praying that the doctors are able to balance her medicine so that her heart is able to get back to the size, shape, and function that it should be. And I will be praying that God gives me the strength to see my beautiful girl and the miracle that she is, rather than getting caught up in the fear and worry that can paralyze me.
Less than two weeks ago, my baby was covered in tubes and lines.
She was alive only because of the machines that she was hooked up to. Her heart was sitting still in her chest.
This morning, this is what I got to enjoy when I woke up.
Thank you, Lord, for every minute that you give me with my little baby girl. Don't ever let me take that for granted.
We will continue to pray - and pray fervently. God will continue to provide miracles in Lauren's life. He will not fail you. He is faithful.
ReplyDeleteI am praying for Lauren as well as you and the rest of your family. I am believing God for complete healing and restoration of her heart. I know God can make all things knew. Praying for peace and comfort.
ReplyDeletewow! what a beautiful smile your little girl has! i am always praying for her full recovery and don't be too hard on yourself amanda, you are a great mom. she is lucky to have you and all of your love! xo
ReplyDeleteWhat an amazing post, Amanda! Your revelations about your feelings and your faith are truly inspiring. This is the true test of your strength as a mom; never fear, you are handling it well and God is listening. My thoughts, prayers and love are going out to your family.
ReplyDeleteI love your photos, the last one especially. Love and prayers in abundance, B
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