Nothing is ever etched in stone in life, is it? Other than the wonderful mercy and grace and love that I know God has for us. Which is by far, the most important. Death and taxes!! We were so close to the finish line....
Long story short, Avery will not be coming home Monday. She had 1 and a half Brady episodes this morning with Dad. Gma and GDad came to visit her which I'm absolutely sure she loved. My child is so lucky to have 5 grandparents. What a blessing! At her 11:30 feeding, Dad said he stimulated her a lot (took her blanket completely off, rubbed her head the whole time) and she did well. No Bradys.
They did a follow up head ultrasound to the one they did on her when she was a week old. The nurse practitioner said that the radiologist found something "abnormal" on her current scan that wasn't on the scan when she was littler. Both her and the doctor assured CJ and later me that it was most likely nothing, but they wanted us to come in tomorrow morning and look at the films with the doctor. The radiologist recommended a follow up scan in 30 days, to go with the follow up kidney ultrasound they also ordered. So I've very quickly come to the conclusion that the waiting part is going to be the literal death of me. I'm too emotionally exhausted to even pray, to be completely honest. My faith in the Lord to heal our child has not waned.... I'm just so tired out, from crying, from being mad, from being anxious and let down.
She had a Brady when I fed her at 2:30- I felt her hold her breath and was already slapping her back by the time the alarm went off. She very quickly recovered, but the damage to my heart was already done. Nita (love love love her) taught me yet another new way to hold her, to stimulate her into staying awake. It's basically just making Avery so mad she stays awake. Hey I will be the first in line to do that! Rubbing her back in a very irritating way, taking her blanket from around her, rubbing the back of her head.... she doesn't much like these things, but she finished the rest of her bottle and was bright eyed and bushy tailed. I have to do this. I have to figure out how to feed my child so she can breathe at the same time.
My spirit is a little worse for wear again tonight. I am more riddled with guilt than I ever have been, that my stupid body wasn't able to hold her in longer, that she wouldn't be going through all of this if I had done something differently throughout my pregnancy. Maybe if I hadn't worked out every day, or worked the long hours.... I feel like its my fault that she's going through all this. I'm weary and wonder how much longer I can function like this... constantly waiting for the other shoe to drop. Holding my breath until the next blow lands. I know that it could be so much worse. I am utterly and completely thankful that for Avery, its not. She is a healthy baby, as far as we know right now. She has some coordination issues associated with eating, and that is merely b/c I'm still supposed to be pregnant. It's so weird to think about that. My body made my daughter do things way earlier than she was ready to. I can't wait until she is old enough so I can beg her forgiveness... not that I don't already. I want to hear her sweet voice (which yes, I already know she will have) say, "Mom, it wasn't your fault... I'm here and I'm fine". Oh what a wonderful day that will be.
Thank you Jesus for your perfect plan. I prayed that if it wasn't Avery's time to go home with us, that he would close the door in some way. And He did. So, thank you Jesus for being so faithful enough to answer that prayer. We still await Your perfect timing for our girl to make it home safe and sound in our arms. Thank you for everything you continue to do that is so amazing in her life. We love you, we honor you, we thank you for being strong where and when we are not. Please continue to work your miracles in her life every day, as we trust that you do.
I will post about the rest of her night tomorrow- we are headed back up to the hospital to try for a Brady-free feeding and then to dinner at my Dad's. Thank you everyone for praying for us and sticking with us through this tough time... mostly b/c I know I'm no fun to be around : / One day I promise I'll be normal again!
Have a great night xox
Cortney, there is a song that makes me feel better when things are really tough, and I don't think I can take anymore. It is called "His Strength is Perfect".
ReplyDelete"I can do all things, through Christ who gives me strength, but sometimes I wonder what he can do through me. No great success to show, no glory on our own, but in my weakness He is there to let me know.
His strength is perfect when our strength is gone, He'll carry us when we can't carry on. Raised in His power, the weak become strong. His strength is perfect, His strength is perfect!"
We can only know the power that he holds when we truly know how deep our weakness goes. His strength in us begins, when ours comes to an end, and He hears our humble cry and proves again...
His strength is perfect when our strength is gone, He'll carry us when we can't carry on. Raised in His power, the weak become strong. His strength is perfect, His strength is perfect!"
Here is a version sung by Stephen Curtis Chapman.
http://www.youtube.com/watch?v=QGC9KT918Kk
Sweetie, I could not be more proud of you and Jay, and your faith in God the Father and his son Jesus our Lord and Savior. Remember to let HIM carry you when you cannot carry on by yourself. "His yoke is easy and His burden is Light," I finally figured out that the reason the burden is light when we are yoked to Christ is because HE carrys most of the load. You are such a precious child as is Chris, and Avery, and God loves you so much. Everything you are going through will make you stronger in your faith and in your marriage, and as parents.
Jeremiah 29:11 states "For I know the plans I have for you, plans to prosper you and not harm you, plans for a hope and a future!"
Proverbs 3:5-6 Trust in the Lord with all your heart and don't depend on your own understanding of things. In all your ways acknowledge Him and He will show you the way. "
These scriptures are my life verses, and I try to live them every day. I love you sweetie...let me know when you are ready for me to come, and I'll be there in a flash! Cindie
Cortney, no one can comprehend what you are going through,, but please know that we are standing with you, trusting God that He is bringing Avery Grace to maturity, and He has His hand on her. I can't imagine what you are going through, but we are standing with you. Yes, Jeremiah 29:11 is my favorite Scripture. My Dad (your Grandpa) used to quote the Scripture that says, "All the promises of God are Yes and Amen . . . . etc." I realized that what that means is that every promise He has given in the Bible is for US today too, so we stand firmly on that Word, believing God, and thanking Him for what He is doing. Love you - - all 3 of you.
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