Day 41

As I was standing there listening to the doctors make their rounds today I heard them say, "Jolianne Clayton, 41 days old." It kind of hit me like a ton of bricks. She has been in the hospital for 41 days. Forty-one days of x-rays, PICC lines, IV's (she has a new one today), blood transfusions, needle sticks, temperature checks, throwing-up, desaturations, ventilators, puffy eyes and Lord knows what else. Forty-one days of funny faces, sweet smiles, squeezing my hand tightly, seeing Jeremy's face while he holds his sweet baby girl, Andy holding his sister for the first time, feeling her chest rise and fall as I snuggle her close to me. Have you every missed someone so much it is hard to breathe? Have you ever cried so hard that it was impossible to see? Have you ever wanted something so bad, but you know that it is not in your power to make it happen? Sometimes I feel so helpless.. It feels like a piece of my heart is missing. Every time I walk out of that hospital I leave a part of me behind. I wish I could make her better, I wish I could hold her in my arms and make all of her pain go away. When I get home and I see my family, my heart is overjoyed. I find that I listen more closely to what they have to say. I linger a little longer at night when saying good night. Seeing your child fighting for every breath and every heart beat makes you very aware of how fragile life really can be. Jeremy and I have become very aware of this. What an adventure this has been. I use the word adventure because you never know what is coming around the bend. We make plans, Jo Jo says "No, I don't think so, I do what I want to!!!" They are talking about doing one of her surgeries next week. We are going to try to do a Heart Catheterization at the end of this week to see exactly what her heart is doing. They always told us that the way her heart made a way to work would be temporary. As she gets bigger it struggles more and more to keep up with what her body needs. It seems like they are wanting to get her heart surgery done before she reaches 10 lbs. We will just have to wait and see. She is doing better today, she is all puffy from the ventilator and extra fluid retainage. She doesn't look like herself to me. She looks like she hurts. She sleeps most of the time and when she wakes up she is very unhappy. I hope that she will not be this unhappy for a long time. I HATE SEEING HER THIS WAY!

As always, thank you so much for all of your love and support. We will make it through this with God at our side.