Thursday, March 22, 2012

Dr. Rajabi's visit today

"O give thanks unto the LORD; call upon his name: 
make known his deeds among the people.
Sing unto him, sing psalms unto him: talk ye of all his wondrous works.
Glory ye in his holy name: let the heart of them rejoice that seek the LORD.
Seek the LORD, and his strength: seek his face evermore.
Remember his marvellous works that he hath done; his wonders,
and the judgments of his mouth."
Psalm 105:1-5

I have to start off by saying how blessed we are!!  I don't think I totally understood how amazing it is what God has done in our precious Cayla Joy's heart!  I've read parts of other's stories today with this Hypo Plastic Left Heart Syndrome, and all I keep finding is struggles getting through that 1st surgery.  They seem to be making it, but with many setbacks and scary moments.  I found other stories that haven't turned out well.  Reading all this, made me realize just how blessed we are if Cayla really and truly won't need the 1st reconstructive surgery for the aorta!  I'm sure I'll write more about this, but I just have to start tonight by praising God and making known His deeds and wondrous works!

Here's a profile picture from today's ultrasound of our precious Cayla Joy.

Dr. Rajabi didn't mention it today, but has said in the past that he thinks she doesn't have a definitive bone or point in her nose... can't quite remember how he worded it, but time will tell what other little things or even big things might be wrong with our little girl.  We just get to wait and see what all happens.

I did go to Hillcrest today to see my OB, Dr. Rajabi.  I am thankful for my mother-in-law taking me out there.  Actually, she likes me to drive, which I enjoy since my "boys" are always chauffeuring me around everywhere. :o)  It's about 50 minutes, not quite as far as Cleveland Clinic main campus, but still a good drive.  The ultrasound tech was able to finally get a somewhat good look at her left foot.  It's definitely a club foot, but no one's worried about that in comparison to her heart. She was taking 3-D pictures of her foot.  She said Cayla weighs 5lbs 4oz now which is exactly 1 pound more than 2 weeks ago!  She should be gaining about a 1/2 pound a week which is right what she's doing, so he was happy about that.  She's looking good, and I too have gained a pound since last time, thanks to Cayla.  This gestational diabetes is keeping me from any kind of weight gain with this pregnancy.  I am 4 pounds more than when I started.  :o)

I am actually at 34 weeks and 3 days along, but they will induce me at 39 weeks and 1 day, Lord willing.  My due date is April 30th, but D-Day (delivery day) is April 24th. Both our heart rates are great.  Got to see her little heart just a beating away.  It's kind of weird watching it, because you really can see just the one side pumping looking somewhat like it's in some kind of time warp the way it goes in a wave as it pumps.  I have to say that it was almost harder emotionally to see her club foot on the screen than her half of heart.  I don't know why, but I found myself holding my breath as she was finding her little foot.  Maybe because I've seen hours of her heart beating... literally, with Dr. Lorber.  Oh! I can't believe I forgot to tell this right off!  Funny!  I asked Dr. Rajabi if he'd heard the awesome news about her heart and aorta.  He said yes that he'd got a call from Dr. Lorber about it all, but didn't understand most of what Dr. Lorber said, other than she might not need the 1st surgery and has a functioning aorta on the right side of her heart!  My mother-in-law and I had to laugh.  I thought it was just us, but to hear Dr. Rajabi say that he doesn't understand everything Dr. Lorber says was just too funny!  He definitely agreed that Dr. Lorber should take some "How to talk to non-heart specialists" lessons from the surgeon, Dr. Stewart!   Bless Dr. Lorber, he's such a great doctor... I said I wouldn't pick on him, but I had to share.

Moving right along.  Dr. Rajabi went over what to do insulin-wise the night before surgery.  I have to change it up that night to try to get it just right for the next morning.  If my sugar is too high or too low, they will have to postpone surgery to the afternoon.  What's messing it up is the fact that I can't eat after 10pm.  I don't think it will be an issue, but if when the time comes, you think to pray about this for me, I'd appreciate it. 

I also told him about the swelling in my ankles, and he said that is very common and he's only going to worry if my hands or face get swollen.  He said just to work on elevating it at night or afternoon to relieve it and keep doing what I'm doing.  Avoid salt, drink water, elevate it, and he'll check on me next week.  He did say that he wants me coming in every week now which I kind of figured. So, I'm off to elevate my foot.  I did this earlier today and fell fast asleep on the couch.  Samuel said I was snoring so bad, I was sounding like a machine gun going off.  He couldn't resist pulling out his pretend one and "using" it every time I snored like that since I was doing such great sound affects for him... That made me laugh then and is making me laugh now.  I usually wake myself up when I snore, but I didn't hear a bit of it today, so I must have been pretty tired.  Love that boy! :o)

We got home about 6pm tonight from the doctor's, took my insulin, ate, shopped for tennis shoes for Lowell, grocery shopped at 2 different places and then came home.  I sat down, tested my sugar and ate some wonderful, sugar-free popsicles while my sweet 16 year old carried in all the groceries AND put them all away for me.  :o)  I am truly blessed!

I just can't quite express how I feel today after reading other's stories with HPLHS.  It's actually pretty overwhelming to think about.  Such hard stories to read that some I had to quit reading and other's just skimmed over.  I don't think I'm emotionally stable enough right now to read everything, but just enough to really realize the enormity of God's work already done in Cayla's little heart.  All I keep hearing is Dr. Stewart saying, "This is a heart she can live with!" and "There's a chance she might not need that 1st surgery!"  I'm crying all over again just typing this.  There's still so many unknowns yet, but my God who created her is in control of her precious little life.  I have such peace just knowing His will will be done in her life, it does pass all understanding.  That's just how God works.  It's after 11pm again, so I've got to go for now!  Thanks so much for all the prayers! :o)

"And God saw everything that he had made, and, behold, it was very good.
And the evening and the morning were the sixth day."
Genesis 1:31


  1. Linda,
    What is the exact time of the birth or when they will be prepping you on the 24th? I want to get it on my phone to remind me to pray, pray, pray.
    Love to you,

  2. Since I can't reply, I'll just add a comment. We have to be checked in by 6am and my C-section is scheduled for 8am that morning, one month from today! :D Thanks Kim for that! It really means a lot to all of us. God is answering prayer already and is still in control no matter what happens! :D