Friday, March 11, 2016

Not a Good Day - March 11th, 2016

So this morning we came to see you and found that there was a nurse taking care of you that we have not met before. We are always open minded about new nurses. However, she told me that she would be changing your diaper today which made me a little upset because that is the only thing that I am able to do as a parent. I got tears in my eyes, but tried not to let it bother me. As she was doing your care, I didn't like the way she was doing things. Maybe it was just me being upset about not being able to change your diaper. Later at 3 when I came back she didn't even do your care - she left for 15 minutes and then when she came back she was trying to gather up nurses to help redress your PICC line. She told me I had to step out while they did that so I just went home. I was told that they usually do those types of things between the hours of 4:30 and 6 and tell us not to come between those hours for that reason. Tonight when we came in, I saw that your pacifier (which was too big for you) was in your little bed and shoved in your little armpit. Your prongs to your CPAP had blood on them (they have never had blood on them anytime that I have been there) and I just didn't get a good vibe from that nurse. Even the nurse on tonight said that your home was a mess! Not a fan. At least when we came back tonight I was able to change your diaper and take your temp., and most importantly, do some kangaroo time!
This morning the doctor came to talk to us as she always does. She asked if we had talked to anyone about the results from the ultrasound and we told her the doctor last night said the bleeding stopped and that there is fluid but nothing we can do right now about it. She then said "from the last ultrasound, it didn't just get worse, it got a lot worse." She then showed us the ultrasound and compared it to the previous ultrasound. She was right, there was a lot more fluid than the last ultrasound. She said that you had hydrocephalus. She said there is nothing that they can do right now. She said your little head would expand to relieve any pressure and they would be measuring your head everyday to see if there were any changes. I asked when they would intervene and she said that they like to wait a while because if they insert a shunt now, you will grow and have to have another surgery to fix that and they do not want to have to do multiple surgeries. Daddy asked what the long term effects could be and the doctor said "good question." She said that anytime there are complications, it increases the chance of something being wrong in the future and reminded us that you have had a few complications already. So the likelihood of something being wrong in the future is increased already. She said that you could have cerebral palsy, learning disabilities, problems with speech and hearing, etc. Mommy cried. Daddy told me that since we don't know anything yet, not to get too upset until we know more information. The doctor also said that we won't know what the long term effects would be for awhile, and some do not show up until you are of school age. Until then, they will be doing an ultrasound every week to follow what is going on.
In a couple weeks you will have an eye exam to make sure everything is okay there. You are back off phototherapy. They are starting your feedings back up at 5 ml every 3 hours.
That is about it for today. I am so happy that I got to have some kangaroo time with you tonight because it was really needed after hearing the news of the ultrasound this morning and from the added stress of having a nurse that decided she was going to do your care. Anyway, mommy and daddy love you. Keep fighting Mason!! You are our hero!!