"Your Grace Still Amazes Me"

It's been awhile since I have updated, and I apologize for that.  This week we have had a few set backs.  Ryleigh had to go back on the high frequency ventilator, and we had a couple of scares. When I was holding Ryleigh on Monday during "Kangaroo Care", all the sudden she excubated, meaning the tube got disconnected from her throat. The nurses assured me that it happens all the time, and it wasn't because of anything I did. Ryleigh's oxygen support was gone, so the nurses quickly took her from me, and had to "bag her" which means they had to pump oxygen in her using the manual oxygen bag. It was very scary, and I lost it in the NICU.   Wednesday they moved her back to the high frequency ventilator, so that means no "Kangaroo Care" till she goes back to the conventional ventilator.
  Her lungs still look pretty weak, and she has a pretty big heart murmur. Since Ryleigh has not been getting stronger, and her lungs seem to be struggling, it looks like we will probably be having the heart surgery next week to close the PDA valve. There are risks with this, but if this is going to make Ryleigh better, then I am happy. Right now blood that is supposed to be flowing into her body, is flowing into her lungs.
  Today I was about to leave, and the nurse had suctioned her mouth (it's to clean out all the junk in her mouth, like they do at the dentist), when all the sudden everything on the monitor started dropping. Her heart rate, etc. It was all hands on deck as they once again had to "bag her" to try to help her start breathing better. She turned white during all of this. Every bit of me wanted to run for the hills, but I knew I should stay there to be with her. I honestly cannot describe the fear that I had in that moment. The nurses felt she may have had a spasm in her lungs that caused this after being suctioned.
   It seemed like hours before everything started  improving again. They allowed me to give her a kiss on the head before putting the lid back on her incubator. I don't know why I feel like I don't have a right to cry in those moments, but I went to the bathroom and weeped.
  I really wish Ryleigh was not having to go through all of this. I long for the moment when I can rock her in her rocking chair till she goes to sleep, nurse her, kiss her as much as I want, and see her smile. It makes my heart heavy just longing for that moment.
   We do have some blessings though! Ryleigh is almost 2 pounds now! She is digesting her food really well, and is going up 1 cc every 12 hours!
All week I've been thinking about the song, "Your Grace Still Amazes Me" by Phillips, Craig and Dean. I know the song was not intended to be about Ryleigh Grace, but I can't help but think about her.
"Your Grace still amazes me. Your love is still a mystery. Each day I fall on my knees, cause your Grace still amazes me.  Your Grace still amazes me." I know that no matter how much I feel Ryleigh belongs to me, she actually belongs to God. He has a plan for her life, and this is her story. She truly amazes me. Each day is a miracle with her.
  Specific prayer requests are:

1) Prayers for Ryleigh's lungs to get stronger!
2) Prayers that if we do have to get the PDA valve closed, that it improves her lungs quickly, and takes care of the heart murmur
3) Prayers that the Ecoli is all gone from her trachea
4) Prayers that Ryleigh doesn't remember any of this!

4) Prayers for the other NICU moms

5) Prayers of thanksgiving for my favorite nurse Carrie

As always thanks for all the prayers and support. Each of you are what keeps me strong when I truly don't feel like I can face the day.

Here are some pictures of our sweet Ryeligh

This was right after things improved this afternoon. She still wasn't her normal color, but you can't really tell here.

                   This is just to help people grasp how small she is! She is getting much bigger!

      
Ryleigh has my big hands, so Rod's ring wouldn't fit over her hand. We instead placed his ring on her leg.

      I have been feeling like Aubrey is getting left out, so I wanted to post a pic of her too. I love my sweet Aubrey. As you can see, she loves apples! In this picture you can really see her crazy hair!

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