November 24, 2013: We moved to our new room on the 7th floor, Room 7303. We were so happy that Baby Z was getting better and we were hoping to go home soon. We now had some privacy because this room had a door vs just a curtain like before. We unpacked our things and met all the new nursing staff. The goal of the Step Down Unit is to teach you how to take care of your “special needs” baby while at home. The nurses there had many patients, 7-1, so they were there just in case you needed them. They would come in every few hours and take his vitals and asked if we needed anything but we were in charge of diapers and feedings. We were super nervous about taking care of this little guy. This was our first baby thus we were still learning how to do the normal baby things and on top of that, how to care for a heart baby. We had to weigh each diaper and record the weights on a dry ease board along with how much he was eating each feeding. We loved being able to do the normal parenting stuff. The sleep schedule: Daddy stayed up until 3:00 am with Baby Z then Mommy’s shift would start while Daddy got some sleep. We both ended up with about 3 hours of sleep a night. The first night Baby Z was sleeping so Dad thought he would sneak in a quick relaxing shower, wrong. I was awoken by the sounds of alarms going off and a room full of doctors and nurses. I was so sleep deprived I honestly could not comprehend something was wrong at first. Dad came out of the bathroom and had no clue what was going on either. A nurse came over to us an explain that Baby Z was having what called tachycardia. His heart rate was in the 250’s and if it did not stop they could give him a medication that may help but they wanted to wait to to see if it would go down on its own. After ten minutes, which felt like 5 hours, he was able to get down to normal range. I was so relived but the relief was short lived because once all the doctors and nurses left his room they had to come rushing back because it had started again. Alarms were screaming, his heart rate very high, and little Baby Z just sat there staring at us like he had no clue what was going on. He was able to fix it every time and did not need to medication. We had about 10 episodes that night. Super scary night for Mom and Dad. November 25 2013: The doctors say tachycardia can be common after surgery. They started a drip of magnesium, his blood work showed it was low, and the cardiologist are put him on a medication for rhythm issues . Unfortunately, all this meant that we would be staying a few extra nights. He still had his chest tube in and so he was on Tylenol because they can be painful. That day, they started to wean him off the Oxygen and he seemed to be doing well with that. The new heart medicine was horrible. He hates it. One of the nurses said that some of the bigger kids says it can make their mouth numb. It took us forever to get it down him. Then once he had taken the medicine, he screamed for hours. It was a 2 hour ordeal and we had to give it every 8 hours. I was sleeping and Dad was on duty when I was awoken by the familiar loud dinging. The room filled up with doctors and nurses again. There was a new doctor on night shift and he wanted to try somethings that may help him come out of tachycardia faster. They put ice on his face. He was not happy about this. He screamed and it did not seem to be helping. After a few minutes they put in a rectal thermometer. They were trying to get him to bear down, not working. He was able to come out of it on his own after a few minutes. Just like the night before the alarms continued to go on and off all night. He had 5 episodes that night. November 26, 2013: Today was our hearing test just one more thing to check off our list before going home and thankfully he passed with flying colors. The day consisted of the normal: EKG’s at 4:00 am, Chest X-ray at 5:00 am, Meet new doctor at 6:00 am, Meet new nurses at 7:00 am, wait for the doctors to make rounds all morning to see what the plan for the day would be. Not much changed this day. I dreaded to see the sun set because when night fall came I did not what it would bring. I may or may not be awoken by alarms going off and my sweet little baby’s heart racing. I would sit and watch the monitors all day and all night long. It would drive me crazy just wondering if it would alarm. When Baby Z would move about it would make the sensors misread and it would ding. You never knew if it was a misread or a real issue until you ran and looked at the monitor. I was driving myself nuts. Dad had finished his shift for the night and now it was my turn. It was 4:30 am and I had just got finished feeding him and was rocking him to sleep in the rocking chair. It started, the alarms were going off. My stomach fell to the floor, not again. Dad awoke, in came the staff and they swept him out of my arms onto the hospital bed. I felt so helpless. After 6 minutes they decided to try the ice and try to get him to bear down, did not work. As always, he came right out of it on his own and acted like nothing happened. Unlike the previous nights this was the only time the doctors came in the room, no more attacks all night November 27, 2013: After the normal day of EKG, X-rays, etc the head doctor made his rounds. He was not happy that the new doctor placed the ice on his face that early. He said his orders were to only do this after 15 minutes of SVT. He told us to not let them do it if they try. We called him Dr. House. He got the job done and he wasn’t worried about hurting someones feelings. The plan for the day was to change his heat medicine to another in hopes it worked better for him and that he would like the new one better. Chest tubes came out this day and so did the Oxygen! I was so happy we were making some progress in the right direction. Night came and we were able to sleep because we had a normal heart rate all night! I was so relieved. November 28, 2013: Happy Thanksgiving! I was so thankful for everything! Many people felt bad that we spent the holiday in the hospital. We were just thankful that we had our sweet little family all together. Today we got our first bath! It was not a tube bath just a sponge but still it was relaxing for him and he passed out afterwards. Mom and Dad had to take a CPR classes and we had no SVT all night! This would make 2 nights in a row and if we go SVT free tonight we get to go home! November 29, 2013: Things were finally winding down and we were checking things off the list before we could go home. We still needed to do the car seat test. This is were they sit the baby in their car seat and they have to stay in there as long as your ride home would be. The nurses watch their vitals to make sure they stay within normal limits. Since we lived 3 hours away, they decided to just do 1.5 hours because we would stop half way and get him out. I have no clue why but I was so nervous about this silly test. We put him in the seat and started the clock. It was not 3 minutes later the nurse comes in says “why are you felling.” His O2 stats were in the 70’s, not good, We made some adjustments to the seat, the newborn headrest was removed and we put in a booster pad, and that seemed to help. After 1.5 hours he passed! I was so happy and finally could quit stressing over it. If he did fell he would just have to have a bed like car seat that he lays flat in. Not the end of the world but something I did not want to have. We did not have SVT again so we get to go home tomorrow! November 30, 2013: Going home today and now the real adventure begins!