Okay, I haven't blogged a lot recently, but it's for the most excellent reason ever. ... WE'RE HOME!
I guess I should catch everybody up on the things that happened while I wasn't writing. So here it is:
So they tried to put an NJ tube down his nose to help wake up his system and take away some of the hunger pains. When they brought him back he had blood in and around his nose, but no tube. It wasn't pretty. I guess they had tried a few different tubes and even two different radiologists to get the tube down, and an hour later his nose was bleeding and his stomach was bleeding from being poked, but his sphincter at the bottom of his stomach just wouldn't open up and let the tube in. It was clenched shut and asleep.
To make things worse, I got sick that night and had to leave the hospital because I was afraid that Micah would get it. However, after a good night and most of the morning sleep I felt good again. I went back to the hospital and got a lecture from our favorite nurses that I need to take better care of myself and not run myself down, and that if I needed to go home to sleep then I needed to do that. Micah started having problems that night though, and there was no way you can drag me away from my baby when he's in trouble. At around eleven Micah's heart rate started going from 150 to 311 and jumping around everywhere in between. The nurse started panicking, and that just made things worse.
Please, please, PLEASE if you are a nurse, this is for you. I, personally, count on you guys to keep your cool in any situation. I know you've worked here for a while, I ask questions about all of the nurses before they get there and take care of my baby. So seeing you freak out, I'm sitting there going 'Okay, this nurse has worked here for a while. She sees lots of sick babies and has been in quite a few situations. If she is panicking like this then it must be something really bad. I knew that this wasn't normal, but now I think it's terrible.' And I'm guessing that's going to be more than just my own personal reaction. Please, if you're scared don't show it. Nothing is scarier than having something wrong with your baby, the panic just makes it worse. The thing I appreciated most about the NICU nurses was that even when things were going bad they like seeped of confidence. They gave off the attitude that they had seen this before and could handle it, and that even though it wasn't normal it wasn't the worst thing on earth. I appreciate the job that you do, you've helped heal my baby at least equal to the doctors if not more. They may have done the surgery, but you healed him after it. Thank you... just.... don't panic.
Anyway, everybody in the room was on edge, and they ordered an EKG and they drew blood for labs, and they did a chest x-ray. The surgeon on call handled things a lot better, telling me this was probably something that they had done that they could fix easily. Whether it be an imbalance of electrolytes or the PICC line being in too far that it could tickle his heart, they were going to figure it out. So we waited, and I swear I could have powered that room with my pacing, and when I was sitting I still could have with the way my leg was vibrating. I just wanted to hear they could fix it. I didn't want another problem, and I really didn't think I could handle something more being added to my plate.
Life happens that way sometimes, though, and they couldn't give me answers. I knew we were being moved to the cardiology unit closer to the surgeons before they said it. I calmed down the way I do when I know I'm going to have to deal with something difficult, and I just stood up and started packing. I told Urian that he needed to pack too, and together we just focused on what we needed to get done.
There's nothing like being in that state of mind. It's no longer a matter of if something is wrong, it's a matter of what is wrong, and you know being scared and crying wont help it. You feel like crying at first, but then you just know that, for the sake of your baby, you need to get things done and get the answers you need. And in that moment, it was packing and moving to the next unit.
The nurse did end up coming in and telling us we were being moved immediately, and we were ready to go. When we got there the nurse and the tech hooked him up to even more wires. They called the main cardiologist from his home, and pretty soon we had an entire team in the room. The cardiologist listened to him for MAYBE five minutes before they went to talk in the hall. A half hour that they had a diagnosis.
Micah has Supraventricular Tachycardia. He has an extra pathway in his heart that allows the electricity to loop back around the the beginning over and over again, and makes it beat faster and faster. It can be handled with medications, and in a year if it hasn't taken care of itself they'll go in and freeze the pathway. Really, as far as heart things go, we'll take this one. It can be handled with hopefully no surgery, and even if they have to go in it's just an overnight stay. They caught it early, so it isn't very risky. We're thankful that they caught it when they did.
Micah was pretty bored the next few days, still not able to to leave his room or eat. His boredom was almost humorous, if it hadn't been so sad. After a few days of this, though, things started to go uphill. His stomach finally started to wake up, and open up. He was able to start eating, and an echocardiogram showed that there wasn't any damage due to his heart from his SVT. They found that a hole in the top of his heart didn't close with birth, but they theorize that it will close itself up in time. And if they aren't worried about it then we aren't.
Soon, on the 21st, we were told we could leave! It was really just like that, they came in and told us we could leave! I think they were waiting till the last minute to make sure everything was okay so that they wouldn't get our hopes up just to take it all away.
I'll post tomorrow afternoon about our experience being home. I can answer questions in the comments and tomorrow I will actually be asking a few questions for other moms of Hirschsprung's babies that I would appreciate being answered in the comments.