It has been a long but blessed week. It started out with our first visit to a local neurosurgeon on Monday. He was only working with the ultrasound report provided by my OB and St. Peter's, so he could really only elaborate on what they had written. Likely paralysis below the knees, minimal movement at the hips, and probable shunting soon after birth. After a weekend of reading up on spina bifida, the idea of hydrocephalus and shunting were the most scary to me and Tim. Would the baby have learning problems, developmental delays, worse? Unfortunately, this doctor couldn't give us any answers other than the basics and the "in most cases." We didn't want to know about most cases, we wanted to know about our case.
On the way to the doctor's office on Monday, Children's Hospital of Philadelphia called with an opening for Tuesday. I stupidly turned it down since we had an appointment scheduled for Friday and I didn't want to cancel class on Tuesday. As soon as I hung up the phone, I thought "Duh." So I called Tim and he confirmed that I should have taken the appointment. I called them back but they had already given away that appointment. However, another opened up, and we were put on the schedule for the next day.
That night, after dinner with Mac, we drove down to Philadelphia to spend the night so that we could be at the hospital the next morning for our 7:30 appointment. It's pretty sad when your only "alone time" comes when somebody has to go to the doctor or the hospital (something we had learned a few weeks previous when Tim's mom was in the hospital). I didn't sleep much, and it took forever for the alarm to go off the next morning. Finally it was time to get up and go to the hospital.
We started with an ultrasound that took 2 hours. It was pretty cool -- much of it was a 3-D ultrasound, so we saw some amazing shots of the little man. The tech was really nice, and told us that he didn't see much swelling on the brain. That made us feel better. Then we had to wait an hour for a meeting with a genetic counselor. After that was lunch at McDonald's -- you know you are in a quality hospital when they have a cafeteria and a McDonald's. After that was a fetal echocardiogram, and finally an hour-long MRI. That was a very long and uncomfortable hour and at that point I was exhausted. Finally, we got to meet with all of the doctor's and go over the results of our tests.
We met with Dr. Sutton, the chief neursurgeon, Dr. Beddington, and OB, and a third doctor whose name I don't remember. They started off speaking very slowly and deliberately -- I was petrified that they had found something even worse. However, what they told us was actually much better than we could have expected. Rather than being an open legion, or a myelomeningocele, they believe that he has a meningocele, which is a skin covered legion. This makes a huge difference not only in when he has to have surgery (6 weeks to 3 months after birth, rather than within 24 hours), but also in whether or not he has swelling on the brain. They told us taht after looking at all fo the tests, he doesn't appear to have any fluid on the brain. And if their diagnosis is correct, he won't get any. We could not believe we were getting such good news -- our biggest fear was being taken off of our shoulders! We must have looked so relieved that the doctors actually started to remind us how serious a condition Oliver still has.
We decided that I will still have CHOP follow the pregnancy and then I will deliver down there at about 38 weeks. All of Oliver's follow-up care will take place there, as well. We dodged two major obstacles this week: a worse diagnosis and insurance issues. When Tim and I got to the elevator, we just looked at each other and said "That was good news, right?" I think that we were both in shock.
As the week has gone on, it feels funny not to have any follow up doctor appointments. I don't go again until the week after next, and that is for my regular OB visit. It is nice to be out of crisis mode for a while. Who knows when we will have to snap back in, but for now, it feels good.
In addition to learning what great family and friends we have, we have also been reminded that God is good and will take care of us. There is nothing more that we could ask for.
