Biding my time

The meeting was today and a lot of the information I already knew was reiterated. This is okay because the more I hear it, the more it sinks in. Most important to me at the moment is (1) what has happened with Gesina is really not my fault. Everyone tells me this but I seemed to not hear it so the more it's repeated the better. With the doctors I was able to ask more specific questions to put to rest some of the crazy theories I've dreamed up that some way or another make this all my fault. The doctors refuted those theories and maybe now I can stop blaming myself.

Another important piece of information is (2) being told her prognosis was "bad" on the first day at the NICU was a mistake and shouldn't have happened. The neurologist said only a neurologist is even close to making that determination AND she herself wouldn't even try to guess how Gesina is doing even a year from now. We don't know her prognosis and the range goes from in a wheel chair to completely fine. Based on the location of her two infarctions it is possible she may have issues in decision-making when she's older but we don't know this for sure and she could also be just fine. Because of the self-fulfilling prophecy research, I've decided she is going to be just fine and will treat her accordingly. Also, her developmental milestones will be followed rather closely by the hospital's specialists for the first 3 years and the doctors will be able to quickly direct us to the appropriate resources and therapies as needed. Because I will follow through on any and all doctors recommendations, I will again just assume she is going to be fine.

The final important point is (3) Gesina will be at the hospital at least a few more weeks. They are determined to give her more time to take the bottle for all her meals and give her EEGs a chance to get to the normal, non-seizure potentiality results. When she does go home, she will be on seizure meds for at least a year or two so they won't be messing with taking her off completely for a long while. They will have me take her home with a feeding tube IF that is what we have to do but in the meantime, Gesina is getting better with the bottle every day. The doctors are very pleased with her progress with the bottle. In fact, last night she took 60 ml of her 100 ml feeding from the bottle. And today when we were visiting with her, she was loudly sucking on her pacifier which she had never done before. We quickly swapped her bottle and pacifier and she happily drank from the bottle for a little while. So we'll see how that continues to go and in two weeks we'll see what they say.

Mentally, I understand that Gesina is getting better everyday. She is headed in the right direction on everything we've been doing and I'm very lucky. She is alive and thriving and I really couldn't ask for better. If I focus on the positives, and there are a lot of them, then life is good. For perspective, some women go through pregnancy and labor and end up with no baby. That didn't happen to me as Gesina is alive.

Emotionally, I'm a bit beat up. If I just keep moving forward everyday without putting too much thought into the situation, I'm emotionally pretty stable. A meeting like today, however, is all about focusing on the situation which forces me to slow down and process what is going on. This means lots of tears, fears, and self-pity. I'm in a very ambiguous situation and if I let my imagination run wild, well, nothing good can happen. I'm fine as long as I don't stop and think too much about it. So now I need to add some order to the chaos to manage the ambiguity of the next few weeks. I also have to keep my perspective and focus on the positive. So while I process my emotions and work on getting my head wrapped around all this, here's a picture of Gesina at 4 weeks. This is the artwork created by one of the nurses so Gesina's area is festive and is a celebration of her.