You are going to need an advance directive...

So Gesina and I saw her neurologist and it went fine. I described the most recent incidents and together, we decided that those episodes were suspicious but we aren't ready to call them seizures. The plan is that after Gesina has been seizure free for 3 months, we start to change her meds to slowly put the bulk of the seizure management on the oxcarbazepine and lower and eventually wean her off the phenobarbital. This is our long-term goal and I'm happy with that plan. Also, I got a little more direction on the time sensitivity of her meds so I don't have to wake her up for meds in the morning, etc. All said, it was a nice, comfortable visit.

That evening I get the NICU development clinic results in the mail. My 5 1/2 month old at the time of testing is functioning like a 1 month old. Of course this bums me out but I'm not really shocked. Gesina doesn't use her arms in any premeditated way so I know she is behind but I deal with the emotions and decide to move on as best I can emotionally. The next day I go to her pediatricians office. I always look forward to these visits because my pediatrician is very supportive and positive. She usually calms my nerves and I leave with a sense of "Ok, I can do this." Well, this visit was a bit different and I knew it would be from the minute she walked in the door with trepidation in her step. Grrr...

She does the usual routine and then I ask her that while I know milestones don't mean much for a developmentally delayed child, do we have any sense of whether or not Gesina will approach milestones in "batches" or in quick progressions? I know she can't answer specifically for Gesina, but do these kids ever really catch up? Her response, "With her scans, no, she will not catch up." So there it is, hopes dashed.

She then asks me what neurology has told me about her prognosis. I mention that they don't tell me anything, that we won't know more until time has passed. As an aside, I view her "true ability" on all dimensions right now as a moving target and it is simply too soon to tell where they lie on the spectrum of various abilities. We need more data/time to ascertain were she is on these spectrum. But, back to the story. My pediatrician says that she can't believe no one has told me anything and that she was going to tell me what no one will say. She doesn't mean to sound callus or mean, she just thinks I need to know...

If Gesina's brain atrophy gets worse, and we should know more when they do a follow up MRI or CAT scan in the future, then this fall during cold season I'll need to get an advance directive (essentially a living will) for Gesina. If she were to get pneumonia, I need to prepare for what heroic efforts I'm willing to take because I probably don't want to her live the rest of her life on machines and in pain...woowzah. Next, Gesina got her vaccinations and I got to leave with that crushing blow to make sense of. Needless to say, Gesina and I spent that whole day crying and for her, in pain. Today, she is in way more pain (sleeping and screaming) and I'm making sense of it all. Here are my thoughts.

Gesina's scans HAVE to look awful. This would lead to the initial two doctors who told me on her first day in the NICU that it "didn't look good" and for her pediatrician to now have these beliefs. While I have briefly mentioned that I'd like to see the scans to my neurologist he distracted me from the notion and I left it alone. BUT, I'm going to listen to my neurologist and his team who say they are the only qualified doctors to even discuss her prognosis and they refuse to speculate at this time. Why? Because even the experts don't know enough about the plasticity of the brain at Gesina's age. Also, my neurologist and his team had assured me that her atrophy won't get worse. I'm going to have faith in that response and ignore my pediatrician's belief that it could get worse. I'm going to trust the doctors with years of experience with babies with strokes and their recovery. What I do need to take from this experience is that yes, Gesina is going to be developmentally delayed. That it is not likely she'll ever be normal or near normal, unless there is a miracle I currently don't know about and I'm not one to believe in miracles. However, I've gotten a lot of encouraging words from those around me that I love that I'm leaning on.

• If Gesina stayed exactly as she is right now, it would be fine. She is much better at calming herself than she was when I first brought her home. Also, she is an excellent snuggler and she loves her momma. What more could I ask for?
• Gesina has accomplished and experienced more in her 7 months of life than normal babies her age. She didn't get to start at "zero," she had to start at a negative number for development. Thus, being calm most of the time and learning to eat are HUGE milestones and she deserves credit for them!
• Gesina is already a strong, beautiful and very loved little girl. It doesn't matter how she develops, we will all love her anyway.

And my ultimate conclusion, I had to jump through some serious hoops to have a baby. It wasn't cheap in any sense of the word to have Gesina. I fought for her because I wanted to love a baby and introduce her to the world. Gesina is perfect for me; she is in need of a lot of love and a lot of teaching. This is what I fought for and I'm going to enjoy it. If she remains forever in this state, so be it. I'll spend whatever amount of time we have loving her and teaching her about the world around her. Screw those brain scans, I'll just do what I can to ensure she uses whatever brain matter she has as effectively as she can!