Monday, April 26, 2010

Waiting is hard

This morning I was still riding the high of our decision to skip the amino. I called the Maternal Fetal Medicine group and cancelled that portion of the appointment. I updated the OB on the decision and then I called Children’s Mercy to try and figure out exactly what was going on and how things should go. After several calls back and forth the MFM group decided that they didn’t want us to come in and ask questions, instead they would rather we consult on the phone with the genetic counselor and hold the medical questions until the Cardiologist appointment which we will have on May 14th. I updated the OB again and let them know we were just going to have a phone consult and wait on the rest. I had about 15 questions for the genetic counselor, she was able to answer some, but most have to wait until we can figure out what we are dealing with at the cardiologist. Waiting is hard, I’ve decided its time to go back to being happy to be pregnant and to just enjoy this process. There is nothing I can do to change what’s coming, I shouldn’t let that rob me of the joy of this experience.

Sunday, April 25, 2010

You just love him, I'll take care of the rest...

Last night as I fell asleep I was praying. It is not my usual prayer which is “good night, thanks for everything, you’re doing great, I love you” I wish it was. Instead it was a litany of what should I do, when should I do it, how do I do this and what if, what if, what if… Suddenly, the thoughts all stopped and I felt a response. The thought was impressed upon me, and now I’m clinging to it like a lifeline “You just love him, and I’ll take care of the rest”. After I felt that, I drifted off to sleep, and I slept well.

Today, I’ve been very anxious regarding the amnio scheduled for Tuesday. After talking it over with TheMan and my Aunt, I’ve decided to ask to post-pone the amnio unless it can tell them something significant regarding my son’s care. We’ve got a 1/10000 risk of the baby having Downs, and a 2/3 chance that the heart defect is not related to Downs. That’s not worth a 1/400 risk of losing my son.

If they need the amnio, we can wait until later and take steps to mature the lungs just in case things go wrong. Nothing changes if we find out the kiddo has Chromosomal problems. We still will do our best to deliver a healthy baby and we’ll still have to deal with whatever we find after the fact. The amnio answers a question that will be answered in a few months regardless, there is no point in taking the risk.

All we need to do is love this baby, God will take care of the rest.

Saturday, April 24, 2010

We're off to a rocky start

I'm 23 weeks pregnant with my first baby (a boy). When I first went to the doctor I mentioned that I was born with a VSD (which I was always told was no big deal, it closed on its own). My OB immediately decided that all my screenings should be handled through Maternal Fetal Medicine. We did the sequential screening and after the measurements and both sets of blood work, my risks were at 1/10000 for chromosomal issues. The first time we tried the level two ultrasound was at 18 weeks, the baby liked to sit as low as possible and at a very awkward angle, but everything we could see looked good, except they thought there was maybe something going on with the heart and that I had a single artery umbilical cord. They rescheduled me for four weeks later.

Thursday, April 22, 2010, we had our second attempt at the level- two ultrasound. This time the baby was up and about and we were able to get great measurements. Everything was measuring as normal, the baby's growth was slightly ahead of his estimated due date and we watched him practice breathing. The sonographer said she'd be back in just a minute because she needed to catch up with a co-worker. Then she came back, along with a genetic counselor and the doctor. They told me my baby had a heart problem, an A-V Canal Malformation with overriding Aorta. I've since learned that this same cluster of heart issues goes by several names including Endocardial Cushion Defect, Atrioventricular Canal Defect (AVCD), common atrioventricular canal (CAVC), AV Canal Malformation and Atrioventricular Septal Defect (AVSD). The doctor and the genetic counselor spoke a lot about down syndrome. The information page at Boston Children's indicates that 1/3 of babies with AVSD also have Down Syndrome ( I also read that if the baby is NOT a down syndrome baby, the heart defect is usually more complicated.

We’re in for a long and complicated ride, with a steep learning curve.