When I called this morning to see how you did last night, she said that you had an event with each feed. This is the same nurse that had you a few nights ago that didn't go to well. I was happy to come see you so that I could feed you - event free.
When daddy and I got there, the nurse had already did your care. Everyone reading this knows how I feel about that. I didn't let it get to me and I was ready to feed you. The nurse said that she didn't feel comfortable with me feeding you since you had so many events over night. I told her that when I feed you, you do not have events, so it would be fine. She called the team and they were busy and said to just drop the feed thinking the events were unrelated to the feeds over night. This was the very first time that she had you, and she kept telling me all these things about you. I told her that what she was telling me doesn't happen all the time, and she just kept acting like things did. I am with you day in and day out, and she is talking like she knows you better than I do. I don't think so. She was saying how tachypneic you are when you eat and after you eat and I was telling her that you weren't usually tachypneic after you eat. She said that you were probably aspirating and she didn't feel comfortable with you bottle feeding because of that.
Daddy and I had the CPR and NG tube training today, and the doctors hadn't rounded yet when it was 11:00 am. I wanted to make sure that we had time to eat, and that I could still feed you at noon. They finally rounded at about 11:40. They said that they put in the orders for your swallow study so that would most likely be done today or tomorrow. They told the nurse that they wanted us to continue to bottle feed you because that was the skill that we are trying to work on. The nurse said that since you continue to have events she didn't think that we should do that but she would try it and stop if anything happened. I told the doctors that you don't have events when I feed you and they said it was probably because they were the morning feeds which really doesn't make too much sense. You are sometimes awake and sometimes sleepy. It varies every day. The nurse kept saying how you have events with every feed. I bit my tongue but wanted to say a lot of things. They didn't change anything and just wanted to see what the swallow study showed to make a plan. Your noon feed was dropped (gravity feed) because your swallow study was scheduled for 2:30 and they didn't want you to get tired.
We left for the CPR training at 12:45 and then your swallow study was scheduled. Our NG tube training was scheduled from 2 - 3:30 and daddy and I wanted to be there so we changed the NG tube training to 4:30. The CPR training was good. Scary, but good. I feel like after practicing, it is something that I could do. I am not sure under all the stress I would be under it would be god, but I feel better that I know what I am supposed to do just incase something happens. Which I hope nothing ever happens where I need to use that.
We left CPR training and we went to your swallow study with you. When we got to the room, the speech pathologist was there. She asked me if I wanted to feed you during the study. She warned me that I would be feeding you in a weird position and that she would do it if I didn't feel comfortable doing it. After she said that, I told her that I wanted her to do it, but then I changed my mind and I fed you. I did exactly what they told me to do, and they said that you were not aspirating. They said that the milk came close to your airway, but never entered your airway. They tried thickened liquids as well and said that there wasn't really a change with that so we could stay with the regular feeds that you have been getting. They did all of that when you were laying on your side. They wanted to try you sitting up to see how you were doing as well. They didn't take too much time on that because we were already passed the time limit that they usually do. The SLP said that she would talk to the team to come up with a plan. We won't know that until the morning.
After the swallow study we went back to your room to get some things together before we went to our next class. I saw the nurses you had over the weekend and they asked how you were doing. I told them that you had events with every feed over night and they seemed surprised and were upset because they said you were doing so well. I wish my nurse was there for that one. She seems to think the worst. Anyway, they were happy that you were not aspirating and said that they hope your light bulb goes off! Before we left for class, I told the nurse that when I have been calling at 6:40 pm, they haven't been answering so the nurses are calling me now if I don't get through. She took my number down and said it is on her list of things to do. I'm still waiting for that call.
The NG tube training went well. It was just daddy and me and we had to practice on a doll. We will also have to practice bedside before you go home so that they know we can do it. I am assuming it is way easier on a doll since the doll doesn't move when we put the tube in. We were given a cheat sheet, a DVD, and detailed instructions just incase we forget how to change the tube out.
We left after the class to go to dinner with friends since it was mommy's 30th. I will be back in the morning to see how you are and to see what the plan is. I really hope that nurse isn't back tomorrow. I did all I could not to say anything to her today.
You hit the 7 lb mark! Keep growing buddy! We love you so much and hope you get better soon.