This morning when I arrived, you had two nurses on. I didn't realize it until about 10 minutes later, but one nurse was training the other nurse. The first nurse that I was speaking to when I came in didn't greet me like all of the other nurses. She didn't greet me by saying "Mason did _______ last night and he is doing _______ today." She just told me her name and went on with her business. A few minutes later she asked if I wanted to help with your care and of course I did. I changed your diaper and took your temperature. I asked her if you were going to have an ultrasound on your leg (because that is what was discussed last week) and she told me no and that the doctor came in and said that it looked fine. She said they also did blood work and the blood work came back fine. I saw that the pulse ox was on your left foot and it looked very swollen. I told her about it and she switched it to your hand. She said that hematology and neurology were going to speak again about your blood clot. She said that you will have a head ultrasound on Wednesday, and that the neurosurgeon came in and said that your head was fine and it didn't need to be tapped today. Your eye exam will be tomorrow. Your head and belly circumferences were fine as well.
When the second nurse came in, she introduced herself and told me that they were both working together. When she asked the other nurse if she did something, that is when I realized that she was training the nurse I first spoke with. I decided to ask her about the blood clot as well because I didn't like the first answer I got. I said it looked more swollen than usual and asked how they would know if the clot didn't move. She just said that they would keep an eye on it and make sure your color is good, she can feel your pulse, and your cap refill was good. Again, I wasn't happy with that.
I then noticed that your right eye was SO swollen. I told her about it and she said she noticed it this morning and she said she would change your position. She said that sometimes babies swell on the sides that they are laying on, and said that is why your eye was swollen. After a while of you laying on your back, the swelling did go down, and I felt much better about that. Your interface was messed up as well, so I told her to fix that too.
After I felt a little better, I sat back down and started doing some thank you cards because I am WAY behind with those. As I was writing them, all I heard were all of the nurses talking about their patients parents. I know that they want to talk about things that happen, especially when there is drama going on, but it is unprofessional to talk about them when there is a parent present in the same vicinity. This day was off to a bad start.
The nurse came to tell me that they were going to decrease your ventilator settings again (RR from 20 to 15) and then respiratory came in to fix that. A little bit later you had a cluster of brady's so the nurse called and had them change it back to 20. You were not ready to go to 15!
The second nurse asked me if I wanted to hold you today and I said yes. She asked if I did kangaroo or something else and I said kangaroo. She said good, that it was better for breastfeeding. A little while later, the first nurse asked me the same thing. I said that I would hold him at 3 after his feed. She said okay, great. Well, 3 came and went. Three fifteen came and went. Both nurses were with another baby giving her a bath. Guess I wasn't going to get to hold you today. (Later when daddy got there to pick me up she asked if I wanted to hold you and I told her there was no time now but I WILL hold you first thing tomorrow morning. She said she would let the nurse know.)
Your respiratory machine kept going off saying "disconnection?" and no one came over to check on you. Your one nurse was at lunch, and the other nurse was on the phone trying to get back her grad school email. She did not move one bit and kept talking on the phone the entire time. I am not talking like a few seconds or a minute of your machine going off. It kept going off over, and over, and over for a good 4-5 minutes. I eventually washed my hands, went in your isolette, and started fixing it myself. She still did not come over. After she was off the phone it started going off again, and she just started talking and did nothing for you. Eventually, respiratory came to check on you and fixed it.
Hematology came over at about 3:45 and asked if the team told me about the ultrasound. I said they told me you weren't having an ultrasound. She said that an ultrasound was done this morning and that your blood clot got bigger. She said now it is headed toward your heart, so they were going to start your lovenox with the approval of neurosurg. They would start you on half of the dose you were supposed to get for two days, and then see if there was any bleeding on an ultrasound on Wednesday. I asked if the clot could still travel for these first two days and they said yes. After they took a look at him, I left to call daddy. Today was not a good day with these nurses. He told me to call the doctor back in so that we could speak with hematology and neurology. When I spoke with the doctor to tell her that daddy wanted to speak with these people, she said that he will not be able to talk to your neurosurgeon. We would have to make an appointment 3-4 days ahead of time. Daddy was a little heated when he came.
When daddy got there, we waited and waited for the doctor to come back (she said she had to go see another baby and then she would be back). We waited an hour and a half before I said something and they called her. She said she told the nurses to call her when daddy got there. Anyway, she finally came and we asked a lot of questions. One question that I had was that if the one dose did show bleeding again in your brain, and the clot kept traveling, what would they do? She said that would be a tough call, and they would most likely start you on heparin, which they don't like to do with babies. Neuro's main concern with starting Lovenox is your most recent surgery, and the medicine making it bleed. There is also a concern with the bleeding that already happened to start rebleeding. This is why they are going to start you on half a dose of Lovenox first, so that they know if you will bleed and then make a decision from there. If you do not bleed, they will start you on a full dose on Wednesday after looking at the ultrasound. However, since you are not getting the full dose today or tomorrow, there is still a chance that it can keep getting bigger and traveling towards your heart. After she answered all of our questions, she said she wanted to start your first dose at 6 pm tonight. Your next dose would be tomorrow at 6 pm, and then the ultrasound would be Wednesday morning so that there had been enough time to see any changes.
We love you Mason and are praying that there is no bleeding that occurs and that we can get rid of this blood clot before it travels any further. Keep fighting - we know you can get through anything.