Saturday, February 18, 2012

A call from Nurse Mary Lou

It's about 4:45am this "lovely" Saturday morning... and I can't sleep with what I think is the beginning of a cold.  I can't breathe laying down, so here I am at the computer in the wee hours of the morning now sneezing and blowing my nose.  I see a nap or two in my future... I couldn't write about this phone call last night, since it was still bothering me in some ways, but I guess I'll just write whatever comes out this morning...

I've been feeling good after hearing that Cayla doesn't have chromosome problems.  I guess I still needed a reality check though to help me realize that she's still got many hurdles to cross.  I answered my phone yesterday around 4:45 and had a very nice lady tell me that she's my... I don't remember exactly what she called herself... my counselor nurse, maybe?  She works at the Cleveland Clinic Main Campus (CC) and will be my "go to" person over the next months.  She will give me tours of CC and introduce me to all the surgeons, doctors, social workers, genetic counselors, and people from the Ronald McDonald House (RMH).  I have to say, when she started talking about the RMH, I was overwhelmed at that thought.  It never really hit me before, but I remember over the years, seeing pictures of families there with their sick, recovering children and thinking, how hard that must be.  I couldn't imagine what those poor families were having to go through. When she started saying how they would help me, let me sleep there for $20 a night while Cayla's at CC, provide transportation across campus back to the hospital, and all the other things they do... it hit me.  We're going to be one of those families.  I'm not sure why, but that thought was a huge reality check in itself.  I missed part of what she was saying to me because I had to stop and let this sink in.

She went on to say that CC has just finished a brand new pediatric surgery center or something like that.  She also said that Cayla Joy will be most likely delivered there with her heart condition.  Maybe it was a new SDU, special delivery unit, I'm not sure.  I didn't start taking notes until about halfway through the conversation.  She was glad to see I have an appointment there next Friday with Dr. Lorber who will do an eco-cardiogram on Cayla's heart.  I guess it's a 3-D ultrasound thing that allows them to see the heart and the computer will rotate it, or make it so they can see the heart whether Cayla cooperates or not.  Don't quote me on any medical stuff... Anyways, I still see Dr. Rajabi next Wednesday the 22nd at Hillcrest.

Then nurse Mary Lou continued her reality check as she kept pointing out that Cayla's problems could be genetic in nature, meaning that her kidneys and other organs could be affected and they just can't tell right now.  She kept telling me worst-case-senarios and making sure that I knew that Cayla's chances are still very uncertain.  I had to keep teling her that Dr. Rajabi has done a great job of keeping our feet on the ground and telling us about her future chances and struggles.  I kind of wanted her to stop talking...  She's a very nice lady, I don't doubt that for a minute, but I think she needed to remember she's talking to a pregnant, hormonal woman who is dealing with all this news from the last 2 weeks with as much grace as possible.  I know she will be a great help during these next few months, and I am thankful for her abilities, I'm just telling how I felt after yesterday's talk with her. I still can't believe it was only 2 weeks ago that we found out about all this.  What a long time ago...

She did keep asking me how I was feeling and was trying to figure out how I was handling all this.  I am thrilled to say that at least 3 times during the conversation, I got to talk about my Rock I'm leaning on, Jesus Christ.  I don't know if she wanted to hear about it, but I didn't want to hear all the worst case scenarios either, so we were even. :o)  Towards the end of the call, she said, "It sounds like you've got a great faith and support system." I said, "Yes, because I've got a great God that made Cayla and is more involved with her care right now than anyone else!"  She has no idea what kind of support system I've got right now... so many wonderful people praying for us!  Situations like this just give you a boost towards God becoming more real than ever before.

I guess the Lord felt I needed to remember that just because it's not a chromosome problem, which is huge, it could be many other serious things.  I don't want to get comfortable and say that God is going to heal her, or make everything ok, because I don't know that. He could, and we are praying for His healing hand very diligently. But ultimately we just keep praying for God's will to be done and that He receives all the glory for this precious little life He's created!


  1. Hi Linda! I'm Cathie's friend and have been following along with your blog. I was so happy to read that Cayla's chromosomes are normal! I just wanted to let you know that Dr. Lorber is great. He took care of my Ben prenatally. Also, Ben had open heart surgery at the CC in May. They took wonderful care of him as I know they will Cayla. Feel free to contact me if you have an questions about the echocardiogram or anything else related to to Ben's stay at the Clinic.

  2. Laura, Cathie gave me a link to your blog about all you've been through! I have to say that I LOVE the picture of your little Ben that pops up on the front page. We all looked at him and ooed and awwed over how cute he is. You are blessed with him and your older little guy. I've never met Dr. Lorber, so it's nice hear good things about him. I am feeling good about being at CC with their doctors able to do the best for Cayla. I'm just going wherever they tell me to right now and seeing whoever they feel I need to see. It's as if I'm just in automatic mode... Anyways, I would love to talk sometime and it's great that you're here in the area. I appreciate the encouragement!

  3. Praying for you!! I am excited to see and hear all that God is going to do for you and Cayla. It will be exciting to hear the many people he is going to let you tell of His love. Keep glorifying God!!! You are such a beautiful testimony, praise the Lord.

  4. Just seeing the ultrasound of Cayla Joy touches my heart so makes me smile...and I pray to the Healer of all healers that she be made perfect in every way..God bless you all!!