Today was an awesome day! We met with the pediatric neurologist, and she is absolutely wonderful. She is extremely knowledgeable (well, duh… she is a brain surgeon), but she is also extremely compassionate.
I was so nervous about meeting her… about finding out all sorts of clinical details from some genius doctor who would talk over my head and give me all sorts of gloom and doom scenarios. I expected this to be our reality check. A day when we would receive knowledge that would take away the comfort of the “unknown” and leave us with just our faith. I prepared myself for the worst, knowing that no matter what we learned today, I would still choose to hope for the best.
But that wasn’t how it was at all. Immediately, I felt at ease when I met the doctor. She was very friendly (and quite fashionable I might add!) and was interested in what we wanted to know. She was very forthcoming with information, but waited for our questions and truly took her time with us.
She started off by saying that no matter what our ultrasounds are showing her, it does not give us an indication of what Brooklyn’s condition will be. She has seen a wide range of scenarios, and every child is different. Common sense, sure, but I expected a medical professional to be more black and white. But let me tell you that all that gray is a HUGE comfort to us.
She told us that she has seen children with defects in the upper part (thoracic) of their spine walk successfully, while others with very low (sacral) defects can’t walk at all. In other words, you really don’t know those types of details until the baby is born. Brooklyn’s defect is in the mid-lumbar/sacral area, so there is a lot of hope that she will be able to at least walk with braces. Her clubbed feet will have to be adjusted, but once they are, walking with assistance is a very real possibility.
Long term, she may or may not end up having to use a wheel chair. That will depend on her quadriceps strength, her weight, and her personality. It will also have to do with how much we motivate her and encourage her to be independent. The hospital really encourages independence, something I know Jeff is extremely committed to and ready to tackle. Heck, if he has his way, she will be running marathons! I am committed to this as well, but I know it will be hard as the Mommy. As the neurosurgeon told us, she will have to pick up her toys and make her bed, even if she has to do it differently than her sisters. We have to push her so that she can have a full life, even if it that means it’s a little hard on us in the process.
The neurosurgeon also told us that she wasn’t concerned with the fluid in her brain (hydrocephalus). It is only mild, and it is very common. Once the defect in Brooklyn’s back is closed, they will closely monitor the fluid levels in her brain. In fact, the goal is to NOT use a shunt (to help drain the fluid in her brain) unless absolutely necessary. I won’t bore you with all of the medical details, but while shunts have saved many, many lives in the last 30 years, they also create lots of complications (infections, mortality, etc.). So whereas 20 years ago they would have quickly put in a shunt, they now wait it out to see if the body can heal itself and learn to absorb the fluid. It’s a little more of a “cutting edge” approach, and Jeff and I are on board 100%. This may mean that Brooklyn will be in the hospital a little longer (an average of 3 weeks), but every day she gets older and stronger without a shunt is an advantage. The surgeon assured us that if they see any evidence that a shunt is needed, they will definitely use it. And they will only release Brooklyn from the hospital when they are sure she is stable and truly ready.
We also learned about possible feeding challenges (very common), learning challenges (math can be difficult), and the logistics of moving Brooklyn from delivery to surgery, as well as the series of events that will take place while she is at the hospital.
In the midst of all this information, we also talked about personal stuff…my pregnancy, our girls, her children. She referenced her other patients by name, and she told us she couldn’t wait to meet our little girl. I believe her. She made sure to introduce us to the very nice office people I talked to on the phone. They were just as friendly. As Jeff said, we felt like we were becoming a part of a family. And that was such an amazing feeling.
I can honestly say that Jeff and I could not feel more confident that this is the perfect surgeon to operate on our baby. No matter what the outcome, Brooklyn is going to receive the best care. I know these people will not only take care of our baby, but care for her.
Once again, our prayers were answered. Keep ’em coming! 🙂
