Finally, Mom's Thoughts

 I have been meaning to write this post for some time now; we are learning the blessing of time. It's hard to even know where to begin. I want to thank each of you who have been praying for our family, and have offered encouragement, prayer, support, you name it. This is by far the most humbling experience I have ever endured. I cannot describe into words how much the emails, posts, texts, prayers mean to us.  Those of you who have been through this journey with your child, thank you for providing me with empathy and pictures of your family.
   It's hard to believe we have only had Ryleigh a week now. I feel like I have been on this road forever. I have never experienced pain like this in my life. I honestly can say this experience has given me a greater understanding of how deep God's love is for us. It is very, very painful for me to see Ryleigh hooked up to so many cords, fighting this fight. I would do this for her in a heart beat. God feels the same way about us, when we are experiencing pain. One of my distant relatives that had twins sent my Dad a profound message that said, "Once again a tiny baby is spreading the gospel." I know God is using Ryleigh's birth and life to bring others to their knees in prayer. Thank you Ryleigh!
  There are so many things that I took for granted with Aubrey in her first few months of life that I didn't even realize were a privilege. When Ryleigh entered this world, there were no sounds of a baby crying, there were no smiles on people's faces, only the sound of the doctors as they tried to help Ryleigh breathe. She was taken away before I could even see her. We were told just hours later that it might be good for us to come and see her. They were taking some last measures to hopefully bring about a change but they didn't want to give us false hope. Seeing such a tiny baby was almost more than I could endure. I will never forget placing my finger in the incubator, and Ryleigh grabbing it. I believe she was sending me the message, "Don't give up hope Mom, I am still here. The doctors don't know how strong a fighter I am." I didn't hold her hand for long, it was more than I could emotionally stand. I told Rod I couldn't take it. That could have been the biggest mistake of my life. Ryleigh, I will never give up on you like that again. All of you prayer warriors were at work. You did not give up hope. The next morning we got a call saying her levels were up and she was doing better. We still are in the roller coaster world of NICU life, but we are all hanging in there.
  What does Ryleigh's name mean? Rod and I spent hours trying to find a name that we felt defined Ryleigh and the journey she has been on since she got here.  Ryleigh was a name we had discussed for many month's and as we searched names with meanings like courageous, brave, etc., Ryleigh came up over and over again. The definition of her name means brave, courageous and lively. Even while Ryleigh was in the womb, I spent one night rocking in the chair, and I got this overwhelming feeling that her name was supposed to be Ryleigh. Now that we have had Ryleigh, it is completely fitting for her to have that name. Ryleigh's middle name is Grace. We spent some time talking about the various meanings of Grace. Our first thoughts centered around meanings like unmerited forgiveness. But we also talked about the meaning as Paul used it as he concluded each of his letters. The Greek word Paul uses here is also used in Luke 1:30 - "But the angel said to her, do not be afraid, Mary, you have found favor with God". Ryleigh do not be afraid my girl, you have found favor with our Mighty God.

Specific prayer requests that you can be lifting up for Ryleigh currently are:

1) Tomorrow the doctor will try to run a PICC line  up her arm to her heart, and the first time didn't work. If it doesn't work after another couple of trys, they will have to have a surgeon make a incision in her shoulder to place the line in. I really don't want her to have to undergo surgery!

2) She has a PDA (Patent Ductus Arteriosis) between her two chambers of her heart. Most babies are born with it closed, but premies often times are born with it open.Blood that is supposed to run out and into her body is running into her lungs. She is currently on medicine to close it, but if that doesn't work, she will have to have heart surgery to get it closed. We will find out tomorrow if the medicine is working, and if her heart murmur has improved.

3) Each day she is gradually having to get more oxygen support. Which means she may have to go back on the high frequency ventilator.  This is typical of the journey in the NICU, however, we would love for her not to have to go back on it.  The high frequency ventilator gives her alot of vibration, and it makes me feel like she is super uncomfortable.

4) The X-rays showed Ryleigh has developed a slight case of lung disease. The nurse assured me this is also typical of a baby born at her age. She had such a tough start that her body got worn down. She said that because Ryleigh is so young, her lungs will develop the cells that she lost over time. Pray that her lungs continue to get stronger!

5) Pray for the other NICU babies and parents too. Unless you have been down this road before, I truly cannot describe what it feels like to see your precious baby go through this.

We love you all and we will post pictures later! Blessings, Rod and Kam