1. Feel like you are going to have a heart attack
2. Make you cry for long periods of time
3. Make you want to vomit numerous times on the NICU floor
First, I am sorry about last nights post. I don't know what happened. Let's say lack of sleep and an emotional breakdown may or may not have cause a computer malfunction. I apologize to all. Monday night, well Sunday night also was a rough one for us. Let's start with Sunday. Some of you may have noticed that Sunday's post was a little shorter than normal. That's because I could barely get through it. We received some crappy news about our little Patrick on Sunday night. Get some Kleenex, this may be bad.
Patrick
So, when I said they had their brain scans and they looked better, and that the bleeds were resolving, I wasn't lying. However, the doctor told us that they found some other things on his. There are two forms of matter in your brain. there is grey matter, and white matter. The white matter controls your motor functions. They told us that they found some small cysts on his occipital region of his white matter, in the back of his head. They said that this can lead to motor skill issues down the road, and it could lead to Cerebral Palsy. The doctor said that it is called PVL. I would love to give you a link on it, but I was to much of a mess to look into it. Please forgive me. He said that PVL does not equal Cerebral Palsy, but if it became worse it could. The reason we didn't tell anyone on Sunday was because we didn't have a lot of information on it. we wanted to wait and go in the next day to see the doctor, where er had time to really sit down with him and ask a shit ton of questions. Sorry for the swearing. We went in Monday to find out about PVL. The doctor said that when there is space in your body that doesn't have something there, or has something that died, it fill the area with fluid like cysts. At some point, Patrick's brain had an area that had a lack of oxygen to it, and cysts formed. Th places where the cysts are have died. Those areas will never come back. Now, we don't know when this happened. It could have been during the last few weeks of pregnancy when there was cord compression in his cord, or when he had the belly infection. The infection pulled a lot of blood into it and may have pulled some from the brain. They have been doing ultrasounds from the start to check for bleeding, but they don't check for PVL until around 1 month of age. Could it have been there the whole time, sure, could it have showed up last week? Maybe, we will never know. what we do know is that he said that there is a huge range of symptoms that he can have. It could be something so small like a finger tick. It could be something so small that you don't even know it. On the other hand, if it develops more, which he said usually it doesn't, it could be so sever that he could be in a wheelchair, unable to hold his head up. Here is more swearing, prepare yourself. I ask you this, can't this kid get a fucking break already, I mean come the fuck on?!!? I must have been a wicked nasty person in my past life, and karma is punishing my kids. Deep breath moving on. He said that normally it does not spread, but a few more can pop up. He also said that they are small, which is good, praise the lord. He said that we won't even be able to see the signs, if any until he starts to develop in a few months after leaving, or as long as 4-5 years later. Has anyone seen the Everybody Loves Raymond episode, where Jeffrey and Michael cut paper? If you have, you know what I am talking about. If not, I will get into later, or try to find a video. Anyway, he said on the positive side, he has two things going for him. First, he said, and he said he is not just saying this because he likes us, he said we seem like excellent parents. We are there every night doing hands on, and talking to him, and moving them. He said that is great, because it provides stimulation for him. He said the other thing, is that he has Brady. He said Brady is going to challenge him. He said he is going to see him walking, and playing, and he is not going to want to be left behind, which will make him work harder. He said that is extra stimulation for him, which is great. He said that because they are preemies, they will need extra help/rehab anyway, he just might need more. Long story short, after a major breakdown, I am fine now. Haha. trust me when I say, I will do whatever I have to do to help my child get through this Curse you stupid roller coaster of hell (fists clenched pumping them in the air!!) We will beat you!!!!!! We will get through this!! I debated even telling everyone about this, because I don't want everyone to feel sorry for him or treat him differently. The nurse said she doesn't even tell the other nurses because then they treat them differently, when there is no reason too. He is still Patrick, no matter what, does everyone hear that?! Good, cause I will crack skulls if anyone doesn't get it .No, for realsie. On to the good. His Fentanyl is down to 0.5, yeah baby. He had an x-ray of his belly and there was still some gas in it, so the surgeon chickened out (per the doctor) and said hold off feedings for 48 hours. I am fine with that. He is up to 2 lbs 1 oz. Yeah!!! He is still getting his IV food.
Daddy checking my temp
I love my dad
Brady
Brady is hanging in there. His vent setting was being turned down to 25. He seemed to be doing well on his O2. The nurse said that id he continues to do well, he might be on the CPAP soon, which is the O2 mask. He is up to 5.8 ml of milk/formula. They had to start giving him formula since I am not producing enough. They switch it back and forth as I get it. They also have started saving some for Patrick for when he starts to eat. We did hands on again, and managed to miss a poopy diaper again. I don't know how we keep missing it! The biggest news of the night was that we were able to do kangaroo care!!! Yea!!! First time skin to skin contact with Brady! They say it so good for babies to be able to sit with the parents and snuggle, but they said it is even better for preemies. They said it really helps their development. This was great. He was so warm, and his little skin is so soft!
Can't wait to have two of them in there!
So, that was the night. Some bad, some good. Some things we can't change, we just wait and see what happens, and pray until our knees bleed. In the end, all that we know is that we have more love for them then we know what to do with, and we will fight as hard as we can for anything that they need.
Thanks for checking in with us! Keep your good thoughts coming! Pray hard!
Love you all!
Em and Craig
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