I wanna see my momma!

Tuesday, Day 6:

Sorry my post is late. I hit a wall last night and just needed to sleep. I need to start taking care of myself or I'm going to get sick and not be able to visit her and that message was received last night. But for Gesina, the day was good. Her last 3 EEGs are stable. All are still in the abnormal range but are telling us that she is NOT having any seizure activity that we can't see. This is good and they have taken her off of one of the seizure drugs. The one they took her off of did the most in putting her in this more stable place but it acts more like an emergency inhaler for seizures as opposed to the long-term inhalers we need to focus our attentions on. She tolerated that change so we've taken her off the drugs associated with controlling side effects for that "emergency inhaler" style seizure med and she is doing well with those changes too. She is now getting a reduced dose of one of the 3 other seizure meds. Next, we start the investigation for the best seizure med combination for her while we continue to try to find the cause for all this. The cause investigation continues later this week where we get another MRI with an additional MRV and MRA (MRI for veins and arteries). Stay tuned on that as all the "common" causes have been ruled out so far and now we are looking for less common causes.

Gesina is still unconscious due to the other seizure meds she's on and the doses. BUT, she heard my voice yesterday and fought like crazy to open her eyes to see me. I got to see those beautiful grey/blue eyes and assured her that while mommy appreciates the effort, she should rest and not fight the sleep too much. You could see her get more roused over the things they do to her now. A diaper change will cause some arm and leg movement. Each time she gets an EEG, so far once a day, the goop they put in her hair is hard to get out. So now when we try to brush it out, she squirms and her face bunches up. She would so cry right now if she could!! So even if she's not fully conscious, I can see snippets of her personality and she is a spunky one <3.

I also wanted to let you all know that even though I don't have time to respond, I am reading every one of your messages and comments. I gain an immense amount of comfort knowing you are all out there rooting for little Gesina. It's also been comforting to know that I'm not the only one out there experienced in "life in the NICU". There are more success stories out there than I realized and that gives me lots of hope.