Just Taking It Day by Day

Carli Update #2 (February 26, 2007)
"We have had a rough week and a half or so. We went up to Kansas City to see the specialist up at KU Med on the 15th of February. We went in and he basically told us that there was a chromosome defect and that he recommended an amnio to verify it. I was fine with the amnio, decided that we needed to know exactly what was going on. At his U/S he said that he thought there was a hole in her heart, but that it was in an odd place, that her liver was rotated and that there was a cyst on it, that her kidneys were hooked together in a horseshoe shape, and that she has something called rocker bottom feet. He pretty much gave us absolutely NO hope!! I went in on Friday to see my regular dr after telling work that there was no way that I was going to be able to be there that day!
I went in and my dr said that basically this dr told him there was no hope either. The KU dr wanted me to be induced, which isn’t going to happen after 2 c-sections, and basically let her die. My home town dr, Dr. Sides and the specialist in Topeka, Dr. Evans, both felt that was a little crazy. They did a test called a fish test, which tested 5 of the chromosomes over night. Friday afternoon about 4pm they called and said that that test came back "surprisely normal". But we needed to wait for the full amnio results to come back before we knew anything certain. They told us that if we hadn’t heard from them by Thursday to give them a call. Well I called Thursday afternoon, got the machine, left a message. Called Friday, same thing. Called this morning, same thing!! I had a follow up appt with Dr. Evans in Topeka today.
Today was a relief!!! They told us that this dr in KC had grown at least 100 pairs of chromosomes to test. They ALL came back NORMAL!!! I guess in most cases they only test 12-40. Dr. Evans felt so bad for how this all went down, even though it isn’t his fault!! I expected this dr to be blunt, which he was, but he could have had a little tact too!! He called me last Monday to make sure that I had gotten the results to the FISH test, which I told him I had. He then asked if I had any questions. I told him I had one....did she have any lung growth at all. His response was...."Yes, but that’s not a concern anymore!!" All I wanted was a yes or no answer!!!
Dr. Evans did another u/s today and didn’t see anything that the KC dr had. He was surprised when he was told about all that the other dr had seen. We are still going to have to deal with the CDH diagnosis, but we don’t have the chromosome issues to deal with now. We are running pretty close here...down to the wire. We are 3 weeks from when my c-section was originally planned for. We have some quick decisions that have to be made about where we will deliver and such. I have more hope now than I did about a week and a half ago. I know we still have a battle ahead of us, but at least it is a little more positive. On the positive side....we got to see her practice her breathing, which is a very good sign considering the CDH diagnosis. There is not any extra amnio fluid, which is common with CDH babies. The tech told us that there is pretty good lung growth on the left side, which is where the stomach is coming up thru the diaphragm. She is weighing in right where she should be for this age...estimated to be 5lbs 11 oz at this point. And the amnio did reveal that she is for sure a Carli Mae!!
I will be having a non stress test done at least once a week, and next week we will have another u/s to make sure that everything still looks ok with growth and the amnio fluid. We are seeing about setting up an appt with the Children’s hospital in KC for the end of this week.
We would appreciate it if you all would keep us in your thoughts and prayers still!! We still have a rough road ahead, but at least I am being able to see the positive side now!"