Positivity is Power

I fell asleep last night reading the words written on a bracelet our dear friend Amanda gave me. "Positivity is Power!" Yes indeed it is. Amanda and her hubby Sean came and visited Miss Elle yesterday while they were in the neighborhood. Amanda is probably the strongest person I know and I just know that some of her strength rubbed off on Elle and me yesterday! Elle had a wonderful day until about 10:00pm! Lee and I got to the NICU around 8:00am and first thing we noticed was Little Miss Priss opened one of her eyes! She opened it for a second and then instantly closed it - kind of like she was playing peek-a-boo with us. Too bad she didn't enjoy the game long enough for us to see what her little eyes look like! She isn't on any sort of sedative so she is truly a sleeping beauty. She has slept since her arrival in the NICU at 9:00pm on Monday. She didn't even need sedation when she went in for the MRI. At 9:00am yesterday we met with the Neurologist. Both her MRI and EEG from Wednesday came back abnormal. The lead doctor, Dr. Fernandez, did his best to explain to us the situation. Her MRI showed bleeding on her brain - but not the type of bleeding that is associated with seizures. He said it might have been a side effect from birth. The EEG was also abnormal. While they were doing the EEG, Elle had one of her "episodes." It looks like she is throwing a hissy fit. For those of you that have seen me throw a hissy fit - Elle does the exact same thing. She clinches her fists and starts shaking a little and I'm sure if she could - she would stomp her foot just like me. They were initially worried that each of these episodes were seizures. However, the EEG showed that these little episodes aren't associated with epileptic tendencies. The neurologist felt that while both test came back abnormal - they didn't feel that she was or is having seizures. They want to run another EEG in a few weeks. This was the news the cardiac team needed to hear to begin planning Elle's surgery. Cardiac had to have the ok from Neuro so they can give Elle heprin during the surgery. Neuro gave their ok and Elle's case will be presented on Monday to plan the surgery. After the neurology team came and talked with us, the nurse told us the wonderful news that I would be able to hold Elle - wires and all! It was the most amazing experience and one I hope I never forget! Lifting her out of bed for that little bit showed us just how much hair our little one has!

The wires made Lee a little too nervous so he elected to wait for his chance to hold little miss. After getting to hold her - it was my turn to change her diaper.

I tried to sneak out and use the excuse that I had to go pump - but that didn't fly with Laura the nurse. She caught me and stayed by my side as I changed her diaper for the first time. Lee stayed far far away taking pictures of the historic event. Yesterday was another first for Miss Elle - she started a feeding tube. We also tried to get her to start on a pacifier - but she really didn't want anything to do with that.

After the feeding tube was put in and Elle was resting back in her little bed - she started to open her eyes - more so than in the morning. We still can't determine what color her eyes are because she didn't keep them open for very long - but it was so exciting to see her at least try to open her eyes! Later on that afternoon Elle was extabated - they moved her breathing tube from her throat to her nose. Evidently this was an awesome step for Elle and her breathing. I didn't particularly like it because the tubes covered up her entire face. At least when the tubes were down her throat - we could see her face. With the tubes out of her throat - she started trying to cry. It was the sweetest sound - a hoarse cry. I absolutely loved it! The afternoon was filled with visitors that kept a constant stream next to her bedside. At 10:00pm last night, Lee, Vickie and I were about to walk back into the NICU to go and say goodnight to our little angel. We pushed the button to have them open the door to the NICU and as soon as we did - the alarm started going off that there was an emergency in the B pod - which is where Elle is. I had that sinking feeling that it was our daughter causing all the drama. Sure enough, a few minutes later, the doors opened and my cousin walked out and gave us the news. Elle's oxygen levels had dropped. Her feet started to tun blue, her hands turned blue and her lips had turned blue. The nurse called the doctor and they had to bag her to keep her breathing. She was without oxygen for about 30 seconds - maybe a minute according to the doctor that worked on her. When Lee, Vickie and I walked around the corner and into Elle's area - she was surrounded by a team of 10 doctors. What a nerve-wracking sight to see your little daughter surrounded by a team of doctors - knowing that they just saved her life. She was resting peacefully when we got to her bedside and she looked so much more comfortable than she had with the tubes down her nose. We waited until they had run her blood gas to leave. Everything looked good - so around 11:30pm - we left the NICU. It was such an emotional day - filled with extreme highs and the extreme low. Even through all of this - crying and worrying about her well being - there is still that comfort of knowing that Elle is being taken care of. Not only by the wonderful doctors and nurses but by the Great Healer. He has a plan for our little one that only He knows! We will trust in Him completely!