I love her and I want to keep her.

That was the phrase I told Adrian on Sunday while visiting Gesina in the NICU. He said since I let him keep the kitten, he will allow me to keep Gesina ;-) Now I'm focusing all my attention on getting her home and refuse to waste any time thinking otherwise. Also, I figured the best way to keep everyone up-to-date on how Gesina Marie is doing is through a blog. And today was a good day!

How this all started: 

Starting about 2 hours after birth (on Thursday, 12/5) I finally got to see her for the first time. As she was laying there peacefully, a buzzer on a machine woke her up and she started crying. I noticed that when she started crying her eyes were rolling upwards. When this happened the second time I asked the neonatologist if this was normal. We had already discussed sending her to a different hospital to observe her as she may have had some internal bleeding but this behavior was a little concerning. We later found out she was having seizures as a response to the bleeding in her brain.

After an EEG, MRI, and CAT scan, we knew she had diffuse bleeding (my word, not the doctors) in her brain and seizures were the response. Her number of seizures was high and anti-seizure meds were the first step. The ultimate plan is two steps (1) stabilize the seizures, and (2) figure out what caused the bleeding in the first place so we can stop it or prevent it from happening in the future.

Friday, Day 2:

It took all 4 seizure meds they have available to stablize the seizures. I'm pretty sure that because of this I was warned that her prognosis was "bad" at my first visit in the NICU with one of the many doctors on the case. I was lucky to have Adrian and my family there with me through that dicussion as that was a tough pill to swallow. I could not have made it through the day without them. With their support, however, I changed Gesina's diaper for the first time and got to hold her. My sister taught me how to "mom up" which is our version of "manning up". On this day, Adrian earned the man of the year in my book as he has been my rock emotionally. There is nothing I can't do with his support! An additional EEG showed improvement from the prior day's EEG so that was a good thing.

Saturday, Day 3:

Joe and Amy came to see Gesina and spent time with Adrian and myself. It was nice to have friends there and to show them all the things I learned from being in the NICU. I'm learning how to read lots of machines and learning how amazing the NICU nurses can be. They have made hand print cards for me and Adrian and have generally been kind and attentive teachers. The doctor's have also been pretty nice too. Always willing to explain what's going on in terms I can understand. I'm beginning to feel more comfortable and less overwhelmed.

Sunday, Day 4:

Holy snow storm! We braved the weather because we couldn't bare the thought of our little girl being alone for even one day. We like to think our visits are making her better (and everyone's positive thoughts and prayers)! We will believe that until evidence tells us otherwise. Another EEG was done this day (because I saw hiccup motions the day before and hiccups look very much like seizures) and the good news was that the EEG was better than the one before. They are still abnormal, but improved from Friday. Also, she was finally given some food through the feeding tube. To this point it has all been IV "food".  I also took the advice and encouragement of the lactation consultant and Adrian and started to use the breastpump. Sorry to all those guys out there reading this, but if this is the only thing I can do to help, then I'm on it! It's nice to feel like I'm able to help somehow.

Monday, Day 5:

My baby girl got her first breastmilk! I didn't realize I'd feel like such a proud momma but I do. Gesina has had negative test results for a viral infection and any bacterial infections so she is now off the medications associated with those conditions. She is also negative for any blood clotting diseases as a cause of her seizures so genetically, there is no cause so far. We are waiting for 2 more tests but so far "negatives" are making me feel pretty positive. Her EEG this day is again improved so they have taken her off her respirator and are looking to slowly take her off the sedatives. This means tomorrow I may get to meet my little girl because she'll be conscious! They are also going to start adjusting the seizure meds to figure out the cocktail that continues to keep her stable while we simultaneously look for the cause of the bleeding in the brain. My figures are crossed that step 1 of stabilizing her seizures is in place so we can continue to focus on step 2. Either way, I can go to sleep tonight with some real hope. 

Keep up the positive thinking and prayers!