I feel like I should tell you about the week we basically decided to move to the North. The day we found out my in-laws got in the car and drove 14 hours over night to be with us. We spent the weekend making phone calls and trying to stay busy and preparing for a possible move up. I also had to get in touch with my work and let them know what's going.
I finally got to talk to someone from CHOP about what I needed to do before we came up and they said they couldn't do anything with an amniocentesis. OH NO. I really wanted to avoid that horrible test. I really didn't think I could handle any more bad news if the test came back with something else wrong. I also was so scared that we could miscarry, since I was only 20 weeks. BUT I did what I had to do and that was take that test regardless. They scheduled my amino to be down South but we also needed to have a day's rest before we headed to Maryland. So after some tricky scheduling we worked it out to have the test done early on Tuesday and we would leave late on Wednesday. Our appointment at CHOP was on Friday so it was a pretty busy week. I tried to pack on Monday since my sweet husband isn't the best packer in the world. He tends to leave things behind, bless his heart. :) Finally we were on the road late Wednesday and got to his mom's house early Thursday morning.
Friday morning we had our appointment and it was an all day affair. There were tests after tests and meeting with doctors and going from floor to floor. The first test was an MRI. I have never had an MRI so I really didn't know what to expect. Well it was certainly not a pleasant experience. It is a tight space for someone who was pregnant with a child that wouldn't be still! Plus being on my back wasn't the most comfortable position. So after about 45 minutes I began to freak out a bit. They said it would only take about that long and they weren't anywhere close to being finished since Joey wouldn't be still enough for them to get the pictures they needed. Finally after having to take a brief break and them giving me oxygen (yes, I had to get oxygen) they finally got what they needed. Thankfully!
After the MRI, we had to go for an Echo ultrasound to check his heart. Which he passed with flying colors. His heartbeat has always been very strong. The tech was very impressed. Matt and I were very proud parents. After that test we had about 30 minutes for lunch before the 3 hour ultrasound. We traveled next door to the University of Penn for that test. I was excited about seeing Joey but 3 hours felt like a lifetime. They looked at every single bit of him. From the very top of his head to each vertebrae on his back to the tips of his tiny toes. The tech was so sweet though. She even printed off pictures of his precious face. After that test we were finally done with tests, now we just had to wait on Dr. J. He is the doctor that would be doing the prenatal surgery.
Unfortunately Dr. J did not have great news for us. We weren't candidates for fetal surgery. Which we were completely prepared for but I don't think I was prepared for the rest of the news. He pulled out a diagram that he drew of Joey's back to show us what they had seen. He then went on to tell us that there are a couple of different types of spina bifida and the type Joey has is myelomeningocele, the most severe yet most common. He explained that Joey's lesion or opening was at the T 10 vertebrae which isn't great. Since it's so high up he won't have movement in his legs and possibly his hips. He also will not be able to use the bathroom on his own, which means catheters and enemas. They also noticed he had a 90 degree curve close to the bottom of his back. This is called kyphosis. And if this is not fixed once he's older he could begin to bend forward and eventually he would suffocate. This is the main reason why we couldn't have the fetal surgery. Another concern was the spinal fluid on his brain. This is known as hydrocephalus. Since there is an opening the spinal fluid isn't being pushed back up, it is just being pushed out into the amniotic fluid. The reason the fluid is just sitting on his brain is because his brain is being "sucked" down like a vacuum called a chiari malformation. So along with the surgery to close his back, he will have a shunt placed to do that job for him. BUT the good news we did get was that Joey would probably not have any brain damage since his head is still flexible. They want to keep an eye on his ventricles in his head to make sure they don't get too big. If they did he would probably have to be taken as early as 35 weeks. He also suspected that Joey has bilateral club feet. Which is another wonderful complication that comes along with spina bifida.
So after that meeting we had the 45 minute drive back to Matt's mom's house. And it was a rough ride. I'm so thankful Matt and his mom were in there with me because I didn't hear a word the doctor said. They had to tell me all of the news again. That was probably the hardest day of my life. I just remember crying and feeling to blame for MY baby having to go through all of this and there was absolutely nothing I could do. But I am luckily enough to have a husband that helped me through all of that news. He has been right here beside me and I know that I can tell him exactly how I'm feeling without feeling judge. So after that day I think I learned a lot about Joey and spina bifida but I also learned how lucky I truly am to have a husband and family and friends that support and love Joey and I.
