Skipping over large parts of last week to today, we have received the final part of the genetic testing. Everything came back clean, no indications of genetic abnormalities. With the exception of the CDH it looks like she might be a healthy baby girl. This is the news we have been waiting for since last Monday. I would write more but I have a 2 year old demanding attention. I will eventually finish the beginning of the story, but right now I need to go play trucks.
Just as the header reads, don’t host your own web page. I was going to take a few minutes and update the blog with the next part of last week, I thought I would take a look at my router to figure out why my wireless is not working properly while Daphne was sending mail. At which point I killed my network connection and spent the last 30 minutes putting everything back the way it was before I started changing settings. It’s working now.
Daphne took a few minutes and sent an email off to a local member of CHERUBS-CDH. Hoping to reach a local contact who has gone through what we are getting ready to go through. We will wait and see what comes of it.
I have been living on web searches during the last week. Gathering what I can and trying to piece information together. Trying to make sense of a situation that we still do not have all the information to begin understanding the situation. We are just waiting for the next set of test results. Waiting, waiting, waiting… oh, did I mention we we are waiting.
This sucks.
I am considering which self destructive behavior I should pick up for the next few months. I’ve been told I cannot eat my way through this, Alcohol is out as if something goes wrong, one of us is going to need to drive to the hospital. Besides if Daphne can’t use that one, it isn’t fair that I would. I asked Doug if I should join a motorcycle gang… he said no, not today. So I will need to keep looking. I suspect caffeine and late night gaming will continue to be my behavior of choice… though perhaps Doug will let me join that gang tomorrow…
We have been seeing a perinatologist, Dr. B, for the last few weeks. Our first child showed up eight weeks premature and we were working towards preventing it from happening a second time even though no one knew why it happened the first time. Monday during the ultrasound, things did not seem quite right. Though no one said anything to us until the ultrasound tech came back in with our perinatologist. He showed us the ultrasound and pointed out where things had gone wrong. We were then placed in a small room to await the arrival of a genetic counselor. Sometimes when there is one abnormality there are other abnormalities. Some of them with names like Downs Syndrome, or Trisomy-13, or Trisomy-18. Both of the latter have a survival rate or between 5 to 10%. There is a long list of things that are tested for and a nice long wait involved for most of the results. They rush the three tests I already listed and have them in two to three days.
To obtain the genetic material necessary for the testing amniocentisis is required. Let me just take a step to the side here and say the needle was much smaller than I expected. I suspect Daphne would have thought so too had she actually looked at the needle. I can’t say that I blame her. I don’t think this test was nearly as bad as was expected, the shot of Rhogam at the end was probably the worst part. The nurse could have used a lesson or two in bedside manner on that one.
A special thanks to one ultrasound tech/nurse in training. Due to a lack of childcare we had brough our son with us to what was expected to be a quick show and then a stop at the mall for a cookie. The cookie stop never happened but Carol spent almost two hours with our son in the waiting room for which we are grateful beyond words.
Thus ends part two… this post was long enough. More on the last 7 days later, and we are still talking about last Monday.
I did not post the rest of the last week. I did get the calendar of upcoming appointments running. Appointments for June 6th, 11th and 21st added. The hobby web page has been added as the gallery. Now it’s late and I’m happy with my progress. Time for bed. I will work on getting up to date later today.
Six days ago during a routine ultrasound we learned that our new child is a girl. We also learned she has a birth defect called a Congenital Diaphragmatic Hernia (CHD). In plain English, she has a hole in her diaphragm that has allowed her stomach to move up into her chest. Since there are other organs that need to use that space to grow, the heart and lungs in particular, we have a problem. I had set up this web server as a hobby box, it will now become a tool to keep the family and friends in the loop as to what is going on here in St. Louis. I will fill in the information for the rest of this past week later tonight. Hang on, it’s going to be a bumpy ride.