Friday, March 4, 2016

All Around Rough Day - March 4th, 2016

This morning when we came to visit you, I knew we wouldn't be able to do Kangaroo Care because you had a long day ahead of you. (That is why I cuddled you twice yesterday!) We figured getting your PICC line in, belly button line out, and your ultrasound would be too much for you already. The nurse let me change your diaper and take your temperature. Your temperature was 99.7 and when I told her, she was not concerned. I take your temperature every day and it has never been that high - ever! Anyway, she told us that the ultrasound was ordered and that you would have the PICC in later today. When she came back in, she told me that the lab called and that your HH was low so you may need a blood transfusion. She said the doctor would be in to speak with me.
Daddy had to go get a haircut so I stayed to read to you until he came back to get me. As the nurse was doing what she had to do, alarms were going off continuously. Your heart rate went from 180 to 85 to 202. Knowing that I can only sit there and there is nothing I an do but watch and pray absolutely kills me. I cried because I have never seen your heart rate so high and watching it go all over the place and listening to all the alarms on the machines going off killed me. In the midst of it all, the doctor came in and quickly left. The respiratory doctor cam in and took a look at you and the machine and told the nurse that you looked uncomfortable and she disagreed. When he left she told me you were comfortable and although the doctor was respiratory, he didn't know what he was talking about.
The PA came in to check on you and she saw me sitting the crying. She came over and sat down next to me and asked what I was crying about and I told her that I have never seen your heart rate so high and then quickly drop. She told me that especially in preemies and even in full-term babies that when they get upset, their heart rate can go into the low 200's until they calm down. She said that they have monitors out in the hallway where they sit and that they were watching hi closely. She told me that I was a great mom and that I was strong and that they were going to take very good care of Mason. She was so caring and thoughtful to take a few minutes of her time to sit and reassure me that everything will be okay.
When Daddy came back from his haircut, I informed him or everything that happened while he was gone. The doctor came in and said that he would need a blood transfusion today and she was going to do lab work to see if he has an infection at all. When we would come back at 3 pm she would tell us the results of the brain ultrasound and the blood work.
At 3 pm, your care was already done. The nurse told us that you have been making her earn her money today. She had spent a lot of tie in your room while we were gone.
The doctor came in to tell us what had been going on while we were gone. She started by showing us the ultrasound of your brain. She put the new pictures next to the ones you had last week to show us the differences. Last week you had a grade 2/3 bleed on one side and a grade 2 on the other side. Today, they were both grade 3's. There was some fluid built up pushing on your ventricles. She said that you would have another ultrasound on Monday or Tuesday to see more of what is happening. If there is more fluid, it could cause pressure on your brain so surgery might be necessary. However, she said it is still too early to tell.
As for your blood work, you have an infection somewhere. She thinks that it is a coag neg. staph, so she was going to hold off on getting the PICC in today and go ahead and take out the line in your belly button. She started you on a general antibiotic to be proactive until a culture came back to see what the infection was. Once she gets that information she will put you on a more specific antibiotic. She said that you don't look or act like you have an infection, so I guess that is a good thing. The PICC line won't go in until the infection is gone. For now, you have to have a perforal IV in your arm until the infection is gone.
When we were there, you were almost finished with your blood transfusion. The nurse said that while we were gone and they had to bother you, you didn't brady or desat like earlier. She then said that the reason you were having a hard time earlier was because your ventilator was too far down (which is probably why respiratory said that he was uncomfortable).
The social worker came in today as well to talk to us and make sure that we were doing okay. She gave us information on SSI and Medicaid and said that you qualify. I'm sure we will need any help we can get since you have a lengthy stay ahead of you!
As you can see it was a very rough day for all of us. The doctor said that it usually takes weeks for preemies to start to level out. So for now, there will be a lot of ups and downs and to take it one day at a time. We decided that you needed a break tonight so we did not go to your care at 9 pm. We knew that the nurse we loved would be on and we know that she will take great care of you and give you the rest you need to grow big and strong! We love you so much and can't wait to see you in the morning!