Wednesday, February 4, 2015

DAY 4

After the awfulness of Day 3, my parents decided it was time for them to start heading my way. It was clear that this was not going to be as easy as we thought and that we would need more support. I was also starting to worry about how all of this was affecting Emmy, so I was ready for my mom and dad to be there so that they could get Emmy back into her normal routine and make it easier for us to make trips back and forth to the NICU.

Before we went to bed on Day 3, his night time nurse came by to talk to us about putting a PIC line in Dawson so that they could stop having to re-do his IV.

At 3 a.m. that morning I woke up crying and didn't know why. Not 2 minutes later that same nurse walked in and told us that they had inserted his PIC line and that it was working great and that he did good with the procedure. One of our many prayers had been answered that night. He wouldn't have to be poked nearly as much as he had been.

That morning we weren't as excited for the meeting with the doctor. We were afraid of more bad news and didn't think we could handle hearing any more. After looking at the EEG, the doctors had agreed that there were no signs of seizures, which was a relief. However, they noticed that there wasn't as much brain activity in certain areas as there should have been. We asked to have a meeting set up with the neurologist in hopes that he could explain more about this and more about what areas of the brain weren't responding as they should.

Just when we thought the meeting was over, the doctor added one more thing that made us realize that there was a chance that no amount of money may be able to help him. She told us she suspected that he had Trisomy 13, which would mean that his life expectancy would be incredibly low.

I didn't even ask to hold him that day. He was going to get the wires and wrap off of his head from the EEG and have his brain x-rayed so I knew he would be exhausted from all of that and didn't want to cause him to lose any more sleep.



That afternoon my mom arrived and I was released from the hospital. Logan, Emmy, my mom, and I went back to our house. We ate a normal dinner, bathed, and Logan and I decided we couldn't handle it any longer. We had to get back to the NICU and see him. It felt so wrong being home without our baby boy. It felt wrong sitting in what was to be his room, no longer pregnant, but without him laying in his crib.



At some point that night I did what everyone always tells you not to do: Google it. I started to look up the signs of Trisomy 13 and even looked at pictures. While many of the pictures and signs were much worse than Dawson, I knew in my heart at that moment that he had Trisomy 13 and that he most likely would not be healthy enough to come home with us.