Our Precious Cayla Joy: 02/16/12

Rejoice in the Lord alway: and again I say, Rejoice.

Let your moderation be known unto all men. The Lord is at hand.

Be careful for nothing; but in everything by prayer and supplication

with thanksgiving let your requests be made known unto God.

And the peace of God, which passeth all understanding,

shall keep your hearts and minds through Christ Jesus.

Philippians 4:4-7

It took me about 30-45 minutes to stop and let this news sink in. The nurse from Hillcrest called me tonight about 5pm and said, "I have the chromosome test results for you." I kind of froze and waited and then realized she was waiting for me to respond. When she said her tests showed normal chromosome levels, my heart felt like it stopped and I wasn't quite sure how to respond to her on the phone. I sat up, and tried to catch the rest of the conversation and realized she was going on and explaining the next steps to me. So, I went into a whole different mode and didn't give myself a chance to process the news. There are some tests that they want to do that will help them determine the extent of the damage in the left side of her heart. I listened as she went on about these tests, and then she switched gears and started talking about the gestational diabetes and the chart I sent her. She hadn't been able to catch the doctor since he's not been in the office, but would call me as soon as she saw him. Then she started talking about the Celiac disease and my carbs and blah, blah, blah. I was really trying to listen, something about getting their dietitian to help me find good carb, gluten-free substitutes and so on. Samuel walked by and I mouthed the words, "It's not a chromosome problem!" He stopped and did a jig and then asked if he could call dad. So while he's calling and all this is going on, the nurse is still talking. Too hard to focus. She told me to talk to my husband and call me in the morning. Uhh, what was I supposed to talk to him about... it was the testing and all. So, I said I'd do that. I didn't know which end was up at that point. I went to the kitchen and turned all the burners down so things wouldn't burn while I was focused on other things. I had just sat down and was trying to think through everything that had just happened in the last 5 minutes.

The phone rang again, it had only been about 10 minutes and it was the nurse again. She was excited because Dr. Rajabi had just come through the office after being at other hospitals all day, and he was able to see all my charts, paperwork, and results since she'd just had it all out talking to me! I love God's timing! She said that he wanted me to up my insulin a little, get with a dietitian to help me work through the carbs choices with Celiac, and he wants a test done before he sees me next Wednesday. I don't recall what she said the test was, but right now, I'll do whatever he says to do. She will call me in the morning to see what is available tomorrow since everyone had gone for the day.

I got off the phone with her, turned to Lowell, who was now home, and just hugged him. I still hadn't cried or anything. Got dinner ready while I called Marla, my sister-in-law, and then shot myself with insulin. I talked to my dad while I ate. It wasn't until I sat down again at the computer to write a quick update on facebook, that the tears kicked in. Lowell came around the corner at just the right time and held me while the dam broke. I was finally able to let my emotions of relief out. He prayed for Cayla as I cried which I think kept the tears coming. Samuel came in and we had a "group hug". :o) Lowell was teasing him that we used to do this and get hugged around the knees from Samuel, but now they're both hugging my head instead. We had a laugh, and I felt better than I'd felt in a long time. I was going to make some more family calls, but Lowell said we needed to do some grocery shopping. My evening has turned out well. I am sitting here resting, about to fall asleep, even though some more calls need to be made. So, this has all been written for me to just get it all out there.

Now, a brief version of what all this means. Cayla's chances of survival just went from 0-50%. I'll take it. Of course, this is just as it stands at the moment through the eyes of the doctors. When you add God into the equation, there is no percentage, it's just His ultimate will that will be done. I will have to go in and have different tests done so they can get as much info on her heart as possible before delivery. This is a syndrome and not a disease. He said the difference is that a syndrome involves many possible levels of outcome which means that there is no set problem and solution. It is very different in every individual. I said in an earlier post that there are 5 parts of her left heart that could all be at different levels of development or lack of development. It's Dr. Rajabi's job to help prepare the surgeons by gathering as much info as possible before she's born. He said they need as clear a plan as possible of where they're headed when she's born since things could turn out differently then. They will need to keep the valve on the right heart open for her 1st surgery. That I think is done right away by medication the first week since the valve closes within a week or so.

I'm sure there's more to be said, but it will have to wait for now. I'm feeling tired, but joyful. Cayla Joy is one active little girl. I don't remember Samuel moving around this much at all, of course that was 17 years ago and with my memory... I love it though! She's waking me up at night with some well places stretches and kicks, but more power to her! I love her, I love my family, I love my God, and I love all the prayers that are being sent to the throne room of God on our behalf! I love the friends that are so encouraging and praying too! Thanks! I wouldn't be able to go through this without God and all the prayers!