Wednesday, May 2, 2012

Surgery is postponed until Friday

"In the day when I cried thou answeredst me,
and strengthenedst me with strength in my soul."
Psalm 138:3

This verse describes Monday and Tuesday.  Cayla is struggling with the breathing tube... not breathing, but the tube.  Who wouldn't?  I went to look at her yesterday and realized that she was crying but no sound was coming out.  The look she had with that silent cry was heart-rendering.  I lost it.  I tried to console her all throughout the day whenever someone had to poke, prod or do anything to her.  Whenever they did something, inevitably the tube would be jarred and she would cry, but the tube is blocking her vocal chords so she has no voice, no sound at all.  It is truly one of the most pathetic and sad things to see.  The look in her eyes says, "Mommy, do something to stop this..."  At least that's how I interpret it. Every time she cried, I found myself crying.  It was a little rough going there for a while.  My mother-in-law and Tina Siesel came up to see us yesterday which was so nice, but I got all caught up in comforting Cayla that I felt like I wasn't very good company. 

She would respond to my voice and my touch and for the most part calm down and stop crying.  I let her hold my finger and squeeze it and my other hand was lightly rubbing her head as I talked to her.  It was nice to be able to do that, but all could focus on was her look and cry.  God has changed all that today. 

I started today by taking my first step in the hospital and bursting into tears.  I was fine outside, but I cried all the way to the NICU.  I sat out in the lobby to try to settle myself down, but gave up and just went in her room crying.  Well, the sight I was greeted with was this.

They were just running an EEG on her, but since I was already crying, I thought I better just go get my breakfast and come back in a little while.  So I did.  I took it out to the waiting room and called my sister-in-law Marla.  She answered the phone and I couldn't speak.  I finally got something out so she knew I was on the phone, but then burst into tears again.  It's a lot of hormones and being tired I know, but it pretty much took a whole long conversation with her to settle me down and stop crying.  Plus, it helped to get some food into me (2 gluten free English muffins but could only eat one, 2 hard boiled eggs and a fruit cup!  I don't eat this good or much on my own...very nice.). Anyways, Marla encouraged me in the Lord and when I was off the phone, I prayed and asked God for peace.  Peace to settle my soul and be able to get through a day.  Nothing wrong with tears.  They're very necessary and healing, but I was kind of out of control.  Well, let's just say I was able to walk back in the room which was now filled with 8 doctors, nurse practitioners, fellows, nurses and so on who were just starting a run down on Cayla and what her plan for the day was (another picture, didn't even get them all in the picture)...

I was able to laugh, tease, smile and radiate peace in that meeting.  So much so, that Dr. Vladimir (in the green shirt), the head Dr in the NICU even made a comment about how different I seemed today.  I said to him and everyone else that God was answering a lot of people's prayers and that I was full of God's peace.  He smiled and said, "I can tell."  When the EEG was done, they were trying to remove all the tape and stuff off Cayla's head, but she was grabbing everything and crying her little, silent head off. I walked around to the other side of her bed and tucked her one hand under the pillow and held on to her other one while putting my other hand across her chest gently.  I just talked to her and ran my finger around her cheeks and was able to NOT cry and get her completely settled down while they scrubbed her head to get all that stuff off.  It was hard to watch, but it was just God that allowed me to focus on Cayla.  Overall I think it was harder to see her with that breathing tube than all these wires because I knew these wires were temporary and would be off soon. 

But that is how the rest of my day went.  I stayed by her bed watching her and loving on her through the arm holes in the side or when the nurse opened the top up too.  It just made for a long day, but I guess I got all my crying out of my system, since I didn't cry again today.  God strengthened me with strength in my soul!  What a great verse!   :o)

At noon, Dr. Stewart, the cardiac surgeon, came down to see me and told me that he has two concerns with Cayla having surgery tomorrow.   First, there is some fluid in her lungs which will need to be removed before surgery.  Second, there's thick, yellow mucus being suctioned up from her breathing tube and from her mouth.  It's not an infection, but will cause her problems breathing after surgery and is a great breeding ground for bacteria after surgery to get an infection then.  Until those are cleared up, he's postponing surgery until Friday.  He also told the other doctors that there is to be no more blood drawn for testing.  He wants her to have as much blood in her body as possible during surgery.  Makes sense to me.  It was interesting the reaction of other doctors to Dr. Stewart.  He is actually a very quiet and meek man, not wanting to be in the limelight.  But, he is very highly respected and apparently has the final word on what happens.  They all just stopped and listened to every word, no arguments, just a bunch of yes sirs and utter respect.  I heard another patient say that Dr. Stewart will stay at the hospital and won't go home for hours and hours if one of his patients is not stable. Can't beat compassion like that in a doctor, I think. 

Well, that means that I don't get to see Lowell and Samuel tonight or Dad and Pat.  Dad and Pat are coming from Canada tomorrow and will be here with me a day and a half before surgery which is nice.  Don't get to see my boys until Thursday night with Grandma.

The lactation nurse came and sat with me today asking how I was.  She said I looked great and seemed to be handling it all well.  So, I gave all the credit and glory to God and told her all about the amazing prayer support we have.  She's been on me, constantly checking on my milk supply and all, but after this conversation,  in which her only response was, "Sounds like you have a good faith." (it's not about my great faith, it's about my great God), I think maybe talking about God made her uncomfortable.  I don't know.  Wonderful people though.  I just want everyone to know that God is my strength and upholding all of us through this.
Oh yes, I got a massage today too.  The lady came through and my nurse instantly said that she had a mom who needed a massage.  So, I got a 5-10 minute massage.  It felt wonderful.  Nice touch.

Cayla also had another echo cardiogram today.  I suppose we'll get the low-down from the cardiac doctors tomorrow. 

Quick little story about the little fighter I've got on my hands.  I was sitting with her when I realized she'd worked her one hand free and grabbed the breathing tube.  She was pulling on it with all her might to get it out.  It's taped on pretty good, but she was really moving it and hurting herself and crying all within 2 seconds before I realized what was going on.  I took my one hand and went to remove her fingers, but they wouldn't budge.  I had to bring my other hand over to hold the tube steady and then try to pry her little fingers off the tube.  She had a death grip on that thing and it took me a good 20 seconds to pry her fingers off that tube.  She's a hard could it be?  Apparently hard when you have a determined little girl wanting that tube out....

Here's another little blessing from RMH.  I had forgot to turn in my meal sheet yesterday at the hospital, so I just get whatever they decide to send me.  For dinner yesterday I ended up with a small grilled chicken breast and a little pile of mashed potatoes with a cup of coffee.  It said on the sheet that I was supposed to get mixed veggies and a salad too.  I didn't complain or anything but was really wanting the veggies.  But last night when I came back to the RMH, I stopped in the community kitchen to see if there was anything gluten free to eat.  Guess what was there... A huge veggie tray and a container with cooked broccoli, cauliflower and carrots.  So, I loaded up on a ton of veggies and God provided just what I needed when I needed it!  :o)  Tonight, they had a huge bucket of grapes and strawberries.  :o)  Love how God does things like that! 

Once again, I know there was more to say about today, but it's now Wednesday morning and I need to get going for the day.  So, I ask you to pray for Cayla's lungs to clear, her tube to clear, and comfort for her these next 2 days waiting for surgery.  Pray too for Dad and Pat as they drive down from Cananda this morning.  Thank you for all the prayers and support!  Love to all of you!