Day Two

The second morning Esa had been breathing really fast for a long time, even with the ventilator, so they decided to try to take him off of it, to see if it would help. They tried, but as soon as they took him off he stopped breathing completely, so they put him back on. One thing that was kind of hard was that I wasn't able to be over there very much. Between pumping, eating, getting checked and trying to get some sleep I wasn't over there anywhere near as often as I wanted to be, but fortunately Art was. The whole day Esa kept up the super high breathing rate, with the nurses and doctors trying everything they could think of to help him come out of it. Our poor day nurse, Heather, was anxious with all the rapid breathing that she had to leave at one point with her eyes full of tears. Normal infants breathe at a rate of around 40, but he was around 70-90 for the entire day. Sometime in the early evening he went all the way up to a rate of 147, so they decided to give him a paralytic to make it so all the muscles in his body, with the exception of his heart, were completely relaxed. This allowed the ventilator to do all the breathing for him. He was also having a few other issues. Because of the TGA he still wasn't getting an adequate supply of oxygenated blood to his body, so his body compensated by making his blood gases low, which they think contributed to the rapid breathing. It was his bodies way of trying to get rid of CO2.  They gave him bicarbonate to try to help that, but his breathing still wasn't slowing. At one point they thought to try removing the respirator because the panting may have been the result of him trying to work against the machine. However, removing the respirator only made him stop breathing all together. On top of it all he also was having some arrhythmia with his heart that they were concerned about.

That night Art went and got the boys so that they could come visit for a little bit and to see Esa. Here is another reason I couldn't be more grateful for PC's. They have rooms where the kids can just play with toys, they have snacks, in the Cardiac ICU they have a slushy machine, they have outside areas with picnic tables, etc. In every way possible, there is an effort to make the environment as warm as possible. They have "the child first always" plastered everywhere and they live by that. For fun, we took the boys in my wheelchair to see statues, of Superman and Spiderman, on the third floor. They were super excited and it helped them deal a little bit with everything that was going on.

We are so grateful we knew beforehand about everything because we were able to prep the boys a little bit for what they would see. Despite me showing them pictures online of another baby with TGA, they were still a little apprehensive, but I think a lot better than they might have been. Plus he's brand new to them anyway. They kept saying how cute he was and that they loved Esa Onni. We only stayed in there for about 20 minutes before they headed back to my sisters house, but I am so grateful that they came to visit because that was the night that they decided at 1 in the morning that he needed to have the surgery to repair the TGA the next morning.

Originally, Esa's open heart surgery was originally planned for Monday or Tuesday but it was moved up to Friday. Nothing was improving, and so they just wanted to get the surgery done to take care of a lot of Esa's issues all at once. I had just gone back to my room at 12:30, when Art called me and told me the news saying I should come back in order to hold him before they took him off to surgery in the morning.

We both got to hold him, which basically means they pad you with a ton of pillows and lay him in his little bed (they call it a nest) on top of those, I was surprised they let us hold him  because of all of the wires and tubes he had, but we were so grateful just to have him a little closer. I wanted so badly to just hold him close and sing or rock or somehow comfort him. Instead we held his hand and touched his head and held each other. I stayed until I started feeling sick and had to go pump and lay down. Art was still holding him when I left.