Today has been an emotional day. We were able to find the hospital without a problem... I just need to look at the directions before we get to that part of the trip. It was actually harder to find the Dr.'s office in the hospital. I realized I have no idea what Hillcrest Hospital is, but it's definitely more than just any kind of pediatrics branch of Cleveland Clinic...
Lowell and I had a very good, informative talk with Dr. Rajabi. He was so good! He drew pictures to describe Cayla's condition, answered all our questions, and was so patient, clear and understanding with us. The whole staff there was wonderful. So over-the-top in helping us through every step. He explained that this is a syndrome in that it has many levels of possibilities in severeness which makes every case very individualized. He is looking for 5 main things in the left side of her heart. Each could be at a differing degree of defect. I don't know that I could remember it all, but something like the aorta, the aorta ventricle (or something), the valve between the 2 chambers, and the lower chamber... ok, so I really can't remember. Anyways, he said he will be looking at these parts as closely as possible today. He also said that he did not want to do the amniocentesis unless the ultrasound showed any other unexplained abnormalities that would lead to a possible chromosome problem. That was a relief to hear. He also said that even if it's just the heart defect with no chromosome issues, she still will only have a 50% chance of living once she's born. Ok, so that's not what I wanted to hear, but I can't bury my head in the sand. Thus went hour #1.
Hour #2... the ultrasound. Lowell's mom and Samuel got to come back for this. The ultrasound tech was one of those people that just has a perpetual smile, and I just feel drawn to people like that. So nice. Here we go for level 3 ultrasound. I was hoping it might be a 3-D one, but it wasn't, just a stronger and more powerful one than our hospital. She showed us her fingers, her nose, smile, face, spine, humerus, ulna, radius, femur, and even her little, left club foot. Kind of hurt my heart for a minute there to look at it, but made me so thankful for technology and doctors that can supposedly fix it without much of a problem, I hope. I had to turn on my side for her to see the heart and then I couldn't see the screen. Lowell said he could see the right heart as she labeled it, but then couldn't see anything else. Granted he also said he really wasn't sure what all he was looking at. Bless these people that can tell what's what on those ultrasound screens. Her left heart looked very small indeed. Dr. Rajabi said that out of the 5 point he tried to see, there were problems with 3 of them that he could tell. She was moving quite a bit giving them a challenge to snap the picture at the right moment. He was not trying to be all gloom and doom, but just trying to be realistic and up front. So... he did see another problem outside of the club foot that could easily be caused by chromosomes. The umbilical cord was not formed normal, although it seemed to be working fine. Here we go again... don't quote me on this... something about it supposed to having 2 arteries connecting it and there was only one...? Combine that with the club foot and he had enough reasons to want to test for chromosome causes. Since no where that we know of in either of our families has anyone had a club foot, which is usually hereditary, that leads him to think it is a chromosome caused problem too. At this point as the ultrasound was ending, I was feeling exhausted, and my emotions were rising, but with many prayers from so many people, I was able to keep them in check since we still had more to do that I needed to be sane for. Thanks again for all the prayers today!
Hour #3... the Amniocentesis (yay.) I was mentally ready to do it today, so jumped right into the whole process. The prayers of God's people were definitely answered during this hour! When it came time, they sent everyone else out. I was kind of hoping Lowell could've stayed, but then remembered how bad he is with needles, and realized it's for the best. (Love you Lowell!) The prep took forever it seemed, and then out comes this long, lovely needle... Did I mention it was kind of long? The ultrasound tech had the view on screen and was showing him exactly where he was with the needle. She never took her eyes off the tip of the needle and was telling him to pull back, move left, and so on. I hardly felt the needle go in and felt less pain than the last blood sample drawn that turned my arm purple. Everything went perfectly and God was in the midst of that room! I smiled, answered the doctor as he talked to me throughout it. I have to say I was nervous during the prep, but actually when the needle came into view... I know this sounds weird, but at that point is when I was overwhelmed with peace. I watched it go in, watched the screen and the tip of it, watched the fluid fill up the tube like I was observing someone else. While the tube was slowly filling up, he's telling me what they do with this. They take the skin cells from the fluid and grow it in the lab like a culture and then they are able to take that and separate out my 23 X chromosomes and match them up to Lowell's 23 Y ones. Then they can look for any extra... Praying it's God's will that there will be no extra ones floating around in there. The doctor even thanked me for being a such a good patient and handling it so well. To God be the glory. He just smiled. So did I.
God upheld us all the way through the 3 and 1/2+ hours we were there. I was told to go home and stay off my feet the rest of the day. Loved hearing that since I was about to fall asleep on the ultrasound table. We made our appointment for 2 weeks to go back and get the news of the test results and of course, another ultrasound. This will be one well photographed little girl! I have this sneaking suspicion that these next 2 weeks might seem longer than the next 3 months. We all talked as we left, made some phone calls, let them know I wouldn't be at church and called my replacements. Chit chatted in the car about it all, but the tiredness was stronger than my emotions for most of that time. We did see a rainbow on the way home and it hasn't rained in a while. It put a smile on our faces that God was reminding us that He is still in control. Love when God throws in special little things like that when He doesn't have to. Got home at 5:15 and went to bed. Woke up around 8. Got a bite to eat and went back to bed. Didn't sleep this time. This is when I was now somewhat rested and now the emotions took over. I am so thankful for my loving, sweet husband! He just held me as we cried and talked about the day and how we were feeling and what were the hardest things for each of us to deal with through this. I hurt for Cayla. I hurt for Samuel. This was not an easy day for him. At one point he just plugged his ears as I was telling my family the results of the day. He's got a sensitive heart and this is really affecting him. Both he and Lowell are having to really focus hard at work and school. We really appreciate all the prayers being offered on our family's behalf. God has sustained us and will continue to during these next months and Lord-willing, years.
I wasn't going to write anything until tomorrow, but I felt so refreshed tonight despite the late hour and the day, that I decided to get up and pour my little heart out onto the blog. We serve an awesome God. He is everything He's ever promised He would be. There is no better place to be in the world than in His will and in His care. You know, for anyone who's kind of backed off from God or never even known Him personally, you don't realize the wonderful peace, rest, love and so much more that you're missing despite what your circumstances are. God is real. God is amazing. I wish everyone that reads this would come to know and understand this first-hand and not just take my word for it. My email address is firstname.lastname@example.org. Send me a note if you want to know more. I'd love to talk about it with you. It would make all this worth it!
Thanks for the umpteenth time for all your prayers! God is working behind the scenes in ways I can't imagine right now. I'm ready for tomorrow... one day at a time. :o) Woah, I guess it's time for bed since it's now 1:20am. Goodnight my friends!