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March 31 Next AppointmentsHello everyone,
Sorry we have not put more updates on here, but we haven't had an appointment lately. Our next appointment is Tuesday the 4th, so we will update soon.  March 21 BackgroundOn January 3rd we went in for what we thought would be a routine ultrasound. We kept looking away from that screen because we weren't planning on learning baby's sex. But then the tech said she had some "concerns". We were shocked to learn that our baby has a birth defect called a congenital diaphragmatic hernia (CDH). Our midwife referred us to a perinatologist.
We didn't get an appointment with the perinatologist until 2 weeks later! This was probably the worst time. The waiting. We did research and of course scared ourselves with what ifs. CDH is basically a defect in the formation of the diaphragm which keeps the diaphragm from separating the lung cavity from the abdominal cavity. This allows abdominal organs to take up lung space (see links for better explanation and pictures) It is common for CDH to occur along with other defects, especially heart defects and chromosomal abnormalities.
We met the Tacoma perinatologist and became very frustrated because we had done research and knew what CDH was, but he couldn't tell us how severe our baby's was. He said there was a high mortality rate and a lot of people terminate the pregnancy. Also, he said we wouldn't be able to deliver in Tacoma because they didn't have ECMO in the NICU should the baby need it. He did do an amniocentesis and we set up an appointment with a pediatric cardiologist.
We did some research on different facilities and Krista's mom talked with doctors in Portland and got a recommendation for a certain doctor. So we called and made an appointment for the next week.
In the meantime, we learned that the amnio was negative for Down's syndrome and other similar chromosomal abnormalities. We weren't planning on finding out the sex, but with all the tests we were having, Krista couldn't resist when the amnio results were returned. There are 2 "X" chromosomes - a girl! We also found out there are no major heart defects found - however her heart is being pushed over to the other side of her chest by the stomach.
We went down to Portland and met the new perinatologist. Basically he's told us we're in the middle of the CDH spectrum - not the best case, not the worst case. Baby's stomach is definitely above the diaphragm and some portion of liver. They didn't calculate a lung-to-head ratio because in the middle of the spectrum, that number doesn't necessarily give the best prediction how a baby is going to do.
The fetal-maternal medicine clinic that we're going to is great - so far they have coordinated appointments for us the meet the neonatologist and pediatric surgeon. The neonatologist said that we should expect our baby to be placed on a ventilator after delivery. Then they work to stabilize the baby and do surgery. This can take a few days to a few weeks.
Currently, Krista is 30 weeks (due date is May 27th) and feeling well. We are pretty set on the name Jolee Jean (JJ) - although we still reserve the right to change it in case it just doesn't fit. We feel good about the doctors we've chosen and hospital we'll be treated at. Emanuel's NICU rates in the top 10% of Level 3 NICUs. It's hard to travel down for appointments but when baby is here, it will be nice to go back and forth from Krista's mom's house (about 1/2 hour away).
Blake is pretty cute. He says baby sister and plays "nosey, nosey" with mom's belly button (he thinks the belly button is her nose). JJ will definitely know her big brother's voice.
As we learn more about delivery plans, we'll let you know. |
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