Long day ahead

Tomorrow Rylee has her MRI. It's going to be a really tough day for me & her. She cant have any formula after 2:30am & we dont have to be at the hospital until 7am. Who knows when they will decide to actually do the MRI, & then after she is done with that she has to have another complete Renal Panel workup (basically, lots & lots of blood drawn being taken from her heel.) As I type this, my eyes are filling up with tears. The MRI is such an emotional thing for me. I'm not really sure what exactly gets to me so much. The room is so sterile & cold. They do let me sit in the room, but I have to stay seated about 8 feet from the machine. The machine makes so much noise that Rylee & I have to wear earplugs. Last time, I sat in a chair & watched as 2 MRI techs strapped my 15 day old baby into a harness, injected her with dye, & slid her back into a tunnel. I couldnt touch her, hold her, console her, or even talk to her. I just had to sit & wait. Wait to hear whether or not she had brain damage. The procedure took about 30 minutes. I spent that whole time praying. Praying that her little brain would be perfect. That nothing was wrong with her. There was a projector in the room & it was projecting an ocean scene on the otherwise white walls. I would stare at the ocean & then stare at the huge machine that my little girl was completely inside. I hated that machine. Im claustrophobic, so I hated seeing my baby girl in there. I had to sit on my hands to keep from jumping up & trying to jerk her out. There was one window in the room & on the other side was all the staff. At one point, I looked out & saw Rylee's nurse & one of the MRI techs laughing. "how could they be laughing at a time like this?" I thought. Here I was literally locked in this solid white room with a machine that was "screaming" at me & watching a hole where my baby was slid through, & they were laughing. To me, this was no laughing matter! I was scared. Scared for Rylee. Scared for me. Scared for Josh & the rest of our families. The results of this one test were what we had been waiting for since Sept 6th. Finally, the test was over. The door opened, & I think I finally took a breath. It was over, & despite the outcome my baby was out of that machine.

If you have been following Rylee's caring bridge website, then you know that the MRI showed that she did have some brain damage. That wasnt the result I had prayer for, but I just had to let go & let God handle things. When strangers find out that Rylee has brain damage they are shocked. She doesnt look like she has any mental or physical disabilities. Im amazed at the people that say, "I think you have a miracle in your hands." We know we have a miracle, but it's strange to here random people say it.

I'm not worried about the outcome of tomorrow's test, but I am worried for my baby girl. She has been at home for about 8wks now & she is very aware of her surroundings. I am afraid that she is going to be very scared in the MRI machine. They need her to be still, & I am anticipating that they will have to sedate her. I just dont want to see that. Maybe that is just me being selfish, but she was sedated for the 1st 3 days of her life, &, unless you have experienced it, I cannot explain how seeing your baby lay lifeless feels. I get sick to my stomach just thinking about it. I think tomorrow will be a true test of faith for me. I will probably be an emotional basket case. I'm praying that I dont snap at Josh or any of the hospital staff. <side note: Kosair is a wonderful place. I wouldnt want Rylee anywhere else.> Im just so ready for this all to be over with, but I dont think that is going to happen anytime soon. There will always be a follow up appointment or test. We will always be waiting & wondering when she will hit her next "milestone." I guess I just need to snuggle up in God's arms & let Him carry me through this. Everyday is a gift that shouldn't be taken for granted.

On a positive note, Rylee is pushing herself up during her tummy time. She hates it, & she whimpers through most of it....but she IS doing it. (This is one of those milestones that we anxiously anticipate.) She seems to like holding her head up better when she is on her bobby, rather than the floor of couch. I took a few pictures of her doing this:

And, yes, I know she has some crazy curly hair! This was right after I washed it. It's turning blonde too, which makes me happy. As you can see, she is doing really well with holding her head up. I think she's nosy like her mama, so that gives her the drive to keep her head up & see the world!

Well, I am going to try waking her up soon. She was too tired to eat after she took her meds tonight (they make her sleepy) so I would love her to get 1 good feeding in before she has to fast. Please keep us in your prayers tomorrow, for my to be able to hold myself together & for Jesus to comfort Rylee while she is getting the test done. I know He was in there with her the last time bc she was wide awake & squirming like crazy until they started sliding her into the tunnel. I think she was just so comfy in His arms that she went right to sleep!