Our "Lucky" Unlucky day

We were feeling pretty good when we went to sleep last night. We were taught how to put the NG tube in and it wasn't as bad we thought. Before we went to bed she drank 23 CCs of the 50 CCs she was given of milk. Her previous record was 10CCs. We were really excited! Shortly after feeding time her heart began to race again. We were almost near 200 bpm. She was lying very calm and still in my arms, but heart was racing and her head had began to sweat. We couldn't get the nurse to do much. She suggested we give her loratab. As much as I hate her to have these drugs I knew that loratab would calm her. We were desperate and agreed. This morning we woke up and waited for the Cardiologists to do their rounds. Her heart began to race. For the first time she exceeded 200 bpm. The nurse came in and said she was going to give her loratab. I wasn't comfortable with the idea. My aunt, who has a sick grandson, told me on Christmas Eve that I wasn't here to make friends with the nurses. That all I needed to worry about is that Gracelyn is being taken care of properly. She told me that Heavenly Father would make Jeff and I aware of her needs and that our instinct would kick in. I trust my aunt 100% and decided that I needed to listen to her council and I told the nurse that I didn't want her to have the loratab. In the mean time Jeff overheard the doctors outside saying that we were going to be discharged. Finally they came in to look at her and her heart was at 209. I told them she had been that way for 20 minutes. The cardiologist looked at me and said she wasn't comfortable with her going home the way she was and the look on my face had to have already said it, but I mouthed to her that I wasn't either. I told her that the same thing had happened the past few days and that it was just being treated with pain killers. She went out and told our nurse she wasn't to give her pain killers, that we needed to figure out what was wrong. I was not happy with the idea of staying, but I knew we couldn't take her home the way she was. Something was wrong. The doctors went out to the desk to talk and her heart continued to race. The nurse kept silencing her alarms. When the cardiologist got up to leave she glanced at the screen and saw that she was at 219. Not to long after it was in the 230's. Within a few minutes we had 10 people in her room working on her. One of the first things they did was get an ice pack. I was told that I would want to leave and I did. Jeff stayed, he watched as they placed the ice pack over her entire face to try to stop her heart for a beat and get her pattern back to normal. I could hear her screaming from so far away and then it stopped. I hated it! Finally Jeff came to find me and let me know they were done. What they were trying to do didn't work. They ordered an EKG and began to study it. They gave her a drug to slow her heart down and it worked instantly. The gave her some fluids thinking that the racing heart may be due to her being dehydrated. It helped some. They ended up giving her some loratab because after studying everything they felt it could be due to pain. Yesterday Jeff suggested to me that they give her scheduled Tylenol to control the pain so that we don't have to go through the pain getting so bad. This was the idea they also came up with today. That seemed to help and she remained in the 160's. They wanted her to be above 180 for 2 hours. She did that. I felt comfortable that it WAS just pain. During this time she drank 1/2 a bottle again. We were are so happy to see her progressing. Shortly after one of the cardiologist came up to talk. The look on his face said it all. I knew something was wrong. He came in to tell us that one of the doctors on his team had been studying her EKG and he diagnosed her with AET (Atrial Ectopic Tachycardia). Her heart basically sends two signals instead of one. We were told that this is rare. With this little baby's heart it was no surprise. They could possibly fix it through a cath, but at this point she is too small. Maybe when she is older. They have put her on a beta blocker called propranolol. They decided to try her on a half dose and see how she did. She did great! She is getting ready to receive her third dose. She has been in the 140's the entire evening. They want to monitor her for a few days on the beta blocker and then we can go home. She will be given this drug three times a day, possibly for the rest of her life. We are so disappointed to know something else is wrong with her heart, but we are so lucky to have found this before we got home and she went into heart failure. I have been very nervous about leaving the hospital, but it finally feels okay to take her home.

(After getting rid of everything yesterday, Gracelyn was hooked back up to more machines and IVs.)