I've been attempting to write a post for several days now, but with four kids at home I have CONSTANT interruptions and lose my train of thought. I compose coherent essays while going to sleep at night, but when I sit down to write them during time at the computer, things sound fragmented.
I have several posts mulling in my head about doctors, challenges, perceptions, accomplishments, you know, things like that.
I will attempt to post something today despite the interruptions that frequently occur.
For us, since G was born, we have encountered quite a few doctors. Even before G was born, I guess. Once we found out about the spina bifida, we were sent to a group of perinatologists, and they thought it was brilliant if you saw each and every one of them. I hated that. How do you get comfortable with who is attending your birth? You don't. You don't know who will be there, and they think if you meet each of their doctor's at least once, somehow they'll remember you at your birth. Or you'll be more comfortable since you met this doctor. Or something. It's beside the point, really. My intention for this isn't about that.
At each visit, I had a lot of questions, and I wrote them down in this small notebook I purchased. I referred to it as my Brain because it contained names, addresses, pertinent questions, important answers, and it did the work for me to remember everything I couldn't at that time. Once G was born, I continued using this notebook and bought a new one in January. It's been invaluable.
One of the main questions I had at this time was "What can I expect?" Initially, when we were given a diagnosis, it wasn't correct. It was believed he would die due to his brain malformation. When we saw the perinatologist after an agonizing ultrasound, he said, "Oh no, it's just spina bifida." We were given a pamphlet and some other reading material, and we went home with our minds swirling. I read the handouts, I read stories online, and heard some stories from others about someone they knew with spina bifida.
What I wanted to know, though, what can I expect from this baby, my baby? What will he be able to do? How long will he live? Will he be able to walk? What about his bladder and bowels? What about the shunt? Will he be brain-damaged? How much? Will I be able to breastfeed? What is he going to be like? Will he look funny? Scary? I mostly focused on the birth plan after awhile because contemplating these questions and the possible answers were tough to deal with.
I remember we spoke to the neonatologist before G was born, and the answers he gave were vague and didn't really answer much. Basically, it came down to each baby with spina bifida is individual. The severity is different for each one. My baby's lesion was lumbar 4ish, and it was probable he'd walk, but it wasn't promised. He could have severe hydro and be mentally handicapped, or he could not have hydro at all. The range is wide for spina bifida babies.
It was tough to accept that we wouldn't have definite answers, but I decided I had to. After he was born, the doctors we've seen, the neurosurgeon, urologist, orthopedic, haven't given us false hope. They haven't given us devastation either. They've presented us with information and caring, of which I'm much appreciative. They haven't once said, "Oh, he won't be able to do this or do that." or "He'll have nothing wrong! He'll be able to walk!" They've told us clearly, They Don't Know.
In some ways, it was hard to accept this answer of I Don't Know, but as time has gone on, it's been okay. They were right. They don't know what my son will or won't be able to do. They have an idea, I'm sure, but as one told us, he didn't offer that kind of speculation anymore because he's been proven wrong more than once. I appreciate that. There's the knowledge of what he can potentially do/cannot do in regards to his lesion level, but nobody's stuck him in that box.
I feel that we've had very positive experiences with G's doctors so far, and I'm very thankful. This isn't to say we haven't had negative experiences because we have, but his main team has been excellent.