This weekend was fathers day and for us a positive/confusing weekend! On Friday we received the MRI results back, the baby was very wiggly so the images weren’t the best. But the had scanned the brain twice and in both of these they saw some veins on the brain. They can’t rule out these being …
Continue reading “Happy Fathers Day to the Greatest Daddy in our Universe!”
Today we got to meet the amazing FMU specialist sonographer. He treats his scanning as if it was art! Everything is so precise and he is soooo passionate. He immediately made you feel relaxed. You were definitely in safe hands and he knew what he was doing. We then had a consultation with the drs …
Today is the day for MRI. The next step! We arrived 20 mins early and wanted to do our usual routine of going to get a Costa so we felt a little more relaxed. The wait was unbearable, it felt like everything was heightened. So I got my work out and started to distract myself. …
In a place of emotional torment and conflict we tried to maintain as much normality as we could. Playing with the twins on a daily basis with loads of cuddles was medicinal. It really kept us going. As did simple dinners. Food that we both loved but wasn’t effort to make. This kept us sane …
Continue reading “Trying to grasp normality in the Spina Bifida Chaos”
The scan at 20 weeks told us there was an issue with the brain, she ultimately thought our baby didn’t have part of his brain and was brain dead. The spinal issues weren’t even picked up! I was furious. There is some serious training needed here. I could see it when shown on the scan, …
Continue reading “How could the sonographer get it so wrong?”
The amniotic test was to see if were are any other chromosome issues or genetic issues that would prevent the surgery going ahead. As they would deem the benefit not worth the risk if this was the case. I will receive these results in two weeks but will have the UCLH tests meanwhile too to …
We showed up to our chat with the specialist consultant at our local hospital to discuss our options and the amniocentis was already waiting. Our consultant spoke to us about the options we had again and the route we wanted to take. Before taking us into her room with another dr where she needed to …
We had the weekend to come to terms with the diagnosis and decide what we wanted to do. We only told my parents as they were looking after our twins whilst I was having the scan. But wanted to keep everything to ourselves until we had gotten our heads around it all. Despite how we …
The morning of our fetal medicine consultant appointment was the first time I managed to capture our baby kicking on camera. The first time we had really seen it as well as feeling it. Mixed emotions followed. Our baby was brain dead, how was this possible?! At the consultants appointment we arrived crazy early, got …
This was the moment we found out there may be issues with our baby. Our 20 week scan went as everyone else might expect. We were so excited to be finding out if we were having a little boy or a little girl. We didn’t actually think about all the other measurements and checks that …
Spina Bifida Baby