Tuesday, February 20, 2007

No Test Results for Amnio Yet

This is Cindy's mom, Kathy. When we went with Cindy and James for the last ultrasound, the doctor told her we would get the results of the amniocentesis for the major potential problems in two to three days, but then it would be cultured and a full report would come in 2-3 weeks. Of course, we have all been anxious as it has been a week and no word from any of it. This morning Cindy was able to reach the doctor and was told that no report will be coming for at least 1-2 more weeks. She said they had so many patients, were backed up, etc. etc.
So for now, we wait.

I just wanted to say how much I appreciate all the people who have commented on her blog, and others who have not commented but I know are praying, too. We just have to lift them up to God and continue to trust Him. I know Cindy and James appreciate all the prayers and good thoughts that have been sent their way. They know they have a lot of support from family and friends and will not have to deal with any of this alone. Cindy's step-dad and I will be going with them on March 8th to see the pediatric surgeon. Cindy, James and I will all be posting to keep everyone up to date on what we know.

We found some more current information on CDH and Cindy changed the link in her last post to it, so check it out. It was much more encouraging than some of the older information that is out there on the internet. I read this morning that a 21 week old baby was born and survived, so it's amazing what they can do for babies now.

Thursday, February 15, 2007

Ultrasound and Bad News

Last Thursday James and I went to the doctor for my 19-week ultrasound. We had been anxiously awaiting this day for months because we wanted to find out the gender of our baby, aka "the bean". The ultrasound tech examined the baby from head to toe, focusing for a long time on the chest area. I thought the heartbeat was neat and all, but was ready for her to scoot down to the baby's bottom to see if it was a boy or a girl.

But then the tech stopped and said she was going to get the doctor to come in and look at something. James and I looked at each other and said "uh-oh". When she came back she said the doctor was in surgery and would be there in about 30 minutes. We asked what was wrong and she said our baby's heart and stomach looked too close together, but it could just be the way the baby was laying. She finished up the ultrasound and told us we are having a girl (Claire Elizabeth).

Afterwards we waited for the doctor in her office. When she got there she said our baby might have a congenital diaphragmatic hernia (CDH). She explained that the diaphragm acts as a barrier to keep the heart and lungs on top and the stomach and bowels on bottom, but our baby's diaphragm has a hole in it and it looks like her stomach might have moved up into her chest. She scheduled an appointment for me the following Tuesday at The Kirklin Clinic to get a higher-resolution ultrasound to make sure.

We came home and looked up information about CDH and realized that it is very serious. I told my mom and best friend about it and they told me not to worry, that it was hard to tell anything from an ultrasound and that it was probably the way the baby was laying. We wanted desperately to believe this and spent the whole weekend in denial, but were also really worried. Since we didn't know anything for sure we didn't tell many people because we didn't want to worry them unnecessarily. I couldn't wait until Tuesday so that they could tell me Claire was fine and put my mind at ease.

My mom and step-dad drove down to go to the appointment with us on Tuesday. While sitting in the waiting room I felt the baby move for the first time -- it felt like a butterfly fluttering in my stomach. We went in for the ultrasound and it took about an hour. The doctor didn't say much the entire time. Finally she finished and told us that our baby definitely has CDH. It's on the left side, and her stomach and about half of her intestines are up in her chest cavity where only her heart and lungs should be. Her heart is shifted to the right and her lungs don't have room to develop properly. The doctor said on a scale of mild to severe, that Claire's hernia is about a medium. She said her liver appears to be down, which is good. She will most likely be put on a ventilator immediately after she is born, and will need surgery to move the organs back in place and fix the hernia. Then her lungs will have room to grow and will hopefully finish developing.

She suggested I get an amniocentesis done and said they could do it right then. I was really worried about the chance of miscarriage, but we figured we needed to get all the information we could about her condition so I signed the form and let them do it. We should get the results back next week. We are scheduled to meet with a pediatric surgeon on March 8th, and are making a list of questions to ask. We are also supposed to take a tour of the NICU that day, which is going to kill me.