Thursday, June 9, 2016

Heart Rate Drop - June 9th, 2016

Over night you had 2 events out of your three feedings you took. The other feed you were sleeping for, so they hung your feed for you. Other than that, she said that you stayed at the same weight and you were just relaxing. She said overall, you had a good night.
When I saw your nurse, she told me that she had heard from the night nurse that I am taking over everything. She told me that she would help me if I needed it, and if not, she would let me do my thing. I changed your diaper and took your temp while she heated up your feed. Right then, the doctors rounded.
The doctors said that they wanted to increase your feeds to 70 ml every 3 hours. Other than that, everything pretty much stayed the same. I asked about the car seat test and when we would need to bring that in, and they said usually they do it within 72 hours of discharge, because it expires. I said we would just bring it over the weekend and whenever it was time, they would have it there. They said that they have tons of emails about Mason and all of his appointments for follow ups. They are scheduling everything for me before we leave, which definitely helps me save a lot of time.
As the doctors were talking, I held you because you were screaming. You were so hungry! I fed you as soon as your milk warmed up and you took all 15 ml with no episodes. I got together the syringe and tube so that I could drop your feed. I held you for a while after that. You did not sleep between feeds again!
Close to noon you started crying because you were hungry so the nurse got your bottle in the warmer and then heated the rest of the milk for you while I took your temp and changed your diaper. I started feeding you and you were doing so well. I took the bottle out of your mouth and you dropped your heart rate to 46. You started coming back up on your own, but the nurse told me to move you upright from side lying and to tap your back. You were done after that. I was so upset because you never have episodes for me so I felt like it was completely my fault. I went to lunch after I hung your feed and cried. I cried because I thought it was my fault (and still think so) and because I feel as if you are never going to be able to come home. Usually if stim is required - it is at least another 5 days before you are allowed to go home. Although that still puts us at the timeframe that you are supposed to come home, it still kills me knowing that you did that while I was feeding you.
The phone rang and the nurse gave it to me. It was the case manager and she asked about the monitor. I said that the doctors said that they didn't think you needed it, but they said you could go home on one if it made us feed more comfortable. She said that the insurance wouldn't cover it if you didn't need it, so she had to make sure that the doctors had a code for insurance. She said that if insurance didn't cover it, it would cost 300-400 dollars a month to rent. I said no thanks to that. Although I really want it - I am not going to pay that much a month. I just hope the Owlet works as good as they say! She said that she would call the doctors and let me know, but she never got back to me. I am hoping she gets back to me tomorrow. This is cutting it too close for me. I need to know these things ahead of time!
I went back to the room and held you for a bit longer until daddy came. We had to watch two videos before being discharged. One was shaken baby, and the other was back sleeping. We signed off on papers that we watched them. One less thing to worry about. The other thing that we have to do before going home is to insert your NG tube by ourselves. I gave daddy the option of going first. I am always there so it doesn't really matter when I do it. He decided to go first and he did a great job. He said it is a lot different than inserting it on the mannequin (that's what I am nervous about). You screamed and cried the whole time but hopefully we won't have to do it often. I have to do it before we leave, and then after that, it can stay in for one month. Unless of course you decided to pull it out. Which is very likely. Daddy and I worked together after I fed you the bottle and we got your feed together to hang and we also gave you your prune juice. I feel like we can work as a team to do this without a nurse coming to the house.
We left shortly after that and I cried on the way home. Just very upset about the episode today. This is why we need a monitor. We will see what they have to say tomorrow.
I called at 6:40 like usual and she said that not much has changed sine we left. She said that you were pretty tired for your 6 pm feed, so you only took 5 ml and then went to sleep. At least you had no episodes. I am hoping the same is true tonight. She said that she would be back tomorrow, so I am happy about that. She was very nice.
I love you so much and everyone is praying that you learn to eat. One day you will. Until then, take your time and we will work with you as much as we have to. See you in the morning buddy!