Sorry this post won't be as short and humorous as the last one my husband wrote!
So we had another appointment today. Today we went to UVA to have yet another ultrasound done and then met with the pediatric Neurosurgeon. The ultrasound went fine, same as it has always gone. They tell us they can't see everything they need to..... I think that is starting to just become what they say to us because we have now had four and every time they tell us they can't see everything they need to. My hope is that they are looking for things that aren't there!
We met a new doctor today after the ultrasound. He is a high risk pregnancy specialists and came in to look at the images and only spoke with us for a few minutes. He didn't really give us any new information. He said he could not the sac at the bottom of the spine still and he couldn't explain why we haven't been able to see it (with Spina Bifida there is a sac where the spine is pulled down and collects). He did see the split in the spine and said it was in the lower spine (Lumbar and Sacral) and that it being lower down is always a better sign than it being higher up (The farther down it is in the spine, the less it will likely affect). He asked about amniocentesis and or any other testing that I have had done. I explained that we did not do the amnio but I had the quad screen done and they tested for MSAFP (this blood test will look at the fluid in the mothers body and can indicate if spinal fluid is leaking into the uterus which would likely pass through the blood stream which would indicate an open tube defect). We chose to do this test because it wasn't invasive and although it is not a "yes or no" test, it can give us high risk or low risk for certain chromosome abnormalities. We had it done before all the excessive ultrasounds and would you know that the blood test for the MSAFP came back as low risk? That my chances of having a baby with Spina Bifida is a 1 in 3,400 chance. Maybe I should play the lottery because those odds are very low but all the ultrasounds indicate otherwise. I asked the doctor why that was and he was very shocked to find that out and said I was a very unusual case...of course my husband chimed in and said he could have told him that from the beginning! So really no new answers about that.
We then met with the Pediatric Neurosurgeon and talked about what things would look like after delivery. The high risk pregnancy doctor will schedule a date for me to have a C-section at UVA and then the baby would have surgery to close the open spine within 24 hours after delivery. From there, the baby would have to stay on its stomach for about a week. Then depending on the amount of fluid on the brain, the baby may need to have a shunt put in within a few days after that. Basically she told us that everything will depend on how the baby looks after delivery. No one will be able to give us a definite on any plan until they are able to assess the baby when it is born. We will also have a Urologist assess bowel and bladders concerns and also an orthopedic doctor to assess hips, knees, and feet issues. We will not need to meet with the neurosurgeon again until after the baby is born. It was nice meeting her and feel very comfortable with her doing the surgery.
The most frustrating part is the waiting. We have been wanting answers for so long now and we still aren't getting them and it is looking like no one will be able to give us all the answers until after the baby is born. I'm really not a patient person and this has been very hard about not knowing. I crave any new information we can get and just haven't been able to get much. One very reassuring thing the neurosurgeon told us is that the best thing we can do right now is have a plan. She said the baby may come out fine and we will all be happy and excited but at least we have a plan. It's better to be prepared for anything. So even though the doctors throw around all these big words and fancy medical terms, I am relieved to know that we at least have a plan for the worst case scenario but are hoping for the best!
I have to say, Jeremy and I have gotten pretty good at these appointments. I'm glad that the shock has worn off because that was just downright exhausting and stressful. I still have my days of worry but have been much more content and accepting of everything as we progress. I'm thankful that this is our first child because I have no other pregnancy/birth/child to compare any of this to. This is all that we know and we are taking it all in. Our love for our sweet little girl has not changed and will not change through any of this. We know that she is a fighter (and obviously a little stubborn from the ultrasounds) but none the less, she will be perfect for us!
I know we have mentioned this before but we are extremely thankful for the love and support that has been given to us. It's overwhelming that so many people have reached out and comforted us during this time! We really have some amazing family, friends, and co-workers! It's good to know that we don't have to do this alone and that there are always people to lean on! Thank you, from the bottom of our hearts, for everything!!
