Day Sixteen

This morning they put Esa on a regular nasal canula, or in other words, oxygen. We were really excited that he was finally getting to that point because that meant that he would be able to go up to the floor soon, within 24 hours. However Esa's heart started with SVT again, where his heart rate would go from the 130s to 180s+ and back really quickly. He was obviously uncomfortable as well. They put him on some heart medicine through his pick line, which they had been meaning to take out that morning. The pick line was one of the things that he needed to be able to get rid of before he would be able to go to the floor, so this made it so Esa would need to stay at least 24 hours more, maybe even a few days. We were pretty bummed because we thought he was in the clear from the arrhythmia problems, but apparently the heart medicine they gave to him after his surgery can stay in his body for up to a month depending on the amount he was given, so this was just showing up now because the other medicine was wearing off. They said he still might grow out of it in as little as a few months or a couple of years. We are hoping, but obviously we can't know until we get there. It's a bummer that he'll have different doctors then, because we are moving, but at least we'll be near John Hopkins and a few hours drive from Boston's Primary Children's.
Once they put him on the medicine his heart rate calmed right down. We spent the day snuggling, taking breaks for me to eat and pump. They offered to let me give him his bath and he yelled at me the whole time. He sure does look handsome when he is clean, though. It has actually been really wonderful to hear all of the little and big noises he makes. Sometimes it gets a little scary if he gets too upset, but I think it was way worse when I couldn't hear him and he was super upset. I think his grunts are the best.
They usually start working with the babies to get them to learn how to eat, but since Esa was throwing up and then had his heart arrhythmia come back, they are delaying it a bit longer. He has been taking his pacifier sometimes, though, so that gives me some hope. Dr. Su talked to me about it and said to really try to get him to take the pacifier and that that would help him to get used to it. He also said that sometimes with heart babies, where they've never had to eat before(some of them do a bit before they have surgery), it can be a bit frustrating and a bit of a process for them to learn to eat. They have a speech therapist work with them, though, so I am really hoping that that will help him out and we can get him on track.
Every Thursday in the CICU and PICU they have "parent hour" which is usually just a lunch for parents to get together and talk, but that day they gave a little presentation about things that we could do for siblings to help them to adjust. They made us coloring books for each of the boys with pictures of Esa and me holding Esa along with pictures of things in the hospital. They also told us about classes that they can do with the siblings with these little stuffed dolls to show all of the different monitors, etc that Esa has to help them to understand, so they would come and do that with the boys a few days later.
The plan for the night was just to watch his heart rhythm and his breathing levels, so it was a pretty quiet night.
I was able to get a sleep room and the lactation specialist came by that afternoon to tell me that I should start going 6-8 hours without pumping at night because my volume is high enough, so I was pretty excited about the extra sleep I would be getting.