Day 5...The Roller Coaster of the NICU

My precious baby boy being comforted by mommy's finger. This is how I spend my time with him. He likes to grip something, so my finger is better than anything else. This is about all the pics I can show. This was the most conservitive photo I could spare to show. The others are not appropriate, because of all the tubes and wires coming out of everywhere. This was taken a couple of days ago, he has a lot more on him now and you can barely see his face. He is opening his eyes when I get there and bend down next to him and start talking to him, which makes me feel good.



Ok, so this morning I called first thing and his nurse said he had a good night. We like to say that he hit rock bottom yesterday and his has made a u-turn and is headed in the right direction now. So this morning, Randy mowed and Aunt Jen came to get Reaganne for a playdate, and we originally thought we would have her take both kids, so Randy and I could go together, however my poor Taylor is have REALLY BAD seperation anxiety and started crying saying he wanted to stay with mommy and he did not want to go and he was just soooo upset. So, we decided we did not feel comfortable with leaving him in his current state. So, Reaganne left and as soon as Jen walked in and Taylor was hiding behind my leg holding on for dear life. He was crying running after me as I was going to answer the door saying, stay home, stay home. So, he enjoyed his one on one time with Mommy and Daddy today. Taylor and me went to Walmart while daddy got ready for the day, and then the three of us at lunch together. While at Walmart, I had Taylor pick out one of those bear/blanket new born gifts for him to give J.R. He was so proud of it and excited. We got all the way home and realized we could not find the gift and Taylor was so upset, because he said that he bought that for "his J.R." It was so sad watching him get so upset about it. I promised him I would go back on the way to see the baby and get him a new one. Then I got everything ready to head to the Hospital, and called before I went and the roller coaster had already started. His nurse had told me that they had run a couple of blood gas test in the morning and decide to lower his Respitory percentage to 40% from 85% and I am not a doctor, but that was absolutely ridiculious in my eyes. Well, of course that was making him work too hard and they ended up having to raise his blood pressure medicine and put him on 100% oxygen again. I was in shock that they did that, so I get off the phone and head out in a rush. I run over to Walmart and talk to customer service and they let me go get another bear/blanket. So, I show up at the hospital and his nurse is holding him down by letting him hold her fingers (because he likes to grip things). He was having a really bad moment and was crying again in "Mute". She asked me right away to take her place and I started to talk to him, while she had to adjust somethings with the machine and raise his blood pressure medicince again. So, I sat in one position for about an hour and half letting him hold on to my fingers and cuddled my arms around him and sang and talked to him. He finally started to calm down and was trying to look at me through his little eye covers he has on right now, because he is on the Jaundice lights. He finally settled down. It is so hard to not to pick him up and lay him on my chest and cuddle him. I did enjoy swaddling him with my arms, but when I finally was able to move after he settled down I was dringed in sweat from the heater and billie ruben lights. Oh, when I got there they put in a feeding tube again to feed him some of my fresh breastmilk because it is good for him and has the antibodies that he needs to fight stuff and also they wanted to see if it would soothe him because they thought he might be hungry. So, he ate 15CC's and seemed much happier. They said they need me to bring in fresh breastmilk to atleast one of his feeding times during the day, because he needs those antibodies. Which is no problem because I am producing so much and they even have a bin full of my breastmilk freezing. That is all I can really do for him is make sure that I produce my milk and eat well and take care of myself, so I can take care of him when he finally comes home. Then the night Doctor came in and I just thought the world of him, he had a great bedside manner and had a very take charge attitude and explained things to me in ways that I could understand. He mostly ran the nurses off from around him, because he was starting to get worked up again with the noise and he pulled his tube and unhooked it and I had to plug it back really quick, because the alarms started to sound. The doctor was not liking how he was making his blood pressure rise really high, because of the tantrum his was having. So, he ordered a very strong sleeping medicine that would help him relax and sleep. He needed to rest and the doctor help make that happen and that was good. He ordered a X-ray for that evening because there was not one ordered and should have been. Then he talked me through the past five days. I mainly wanted to know why the day doctor felt it was OK to take him from 85% to 40% with his oxygen. The doctor reviewed the sheet and all his numbers and could not tell me why they did that,that it was a good call on my part, because there was no good reason for doing that. I told him I thought it was crazy and that it made him start from the bottom again at 100%. He agreed and could not find a reason with reviewing the numbers that would make this a good decision. He promised that it would not add three more days to his stay. It was explained to me that every time they move him back to 100% it makes him start back from ground zero and that it adds three days of monitoring to start bringing it down again. I tell you I am dying with having 4 VERY DIFFERENT DOCTORS working on him at the same time throughout this experience. They all have very different opions and personalities and it never makes you feel good when a doctor says that he would not have made that decision then like the other doctor did. He was very honest with me, which is what I need and want at this point. He spent a good hour and fifteen minutes with me on his condition. It has all come down to PULMINARY HYPER TENSION, and a few other conditions in the back of their minds due to signs that point to those conditions. So, the doctor told me to call him at 9:00 tonight and he would give me an update on his X-ray. So, I called and he had gotten good blood gas test results and was able to move to 87% on his oxygen. The sleeping medicine was working wonders and he was able to sleep and rest, she said when they changed his diaper he barely moved and was a lot more comfortable. So, I just called up there and it is three in half hours later and the roller coster is continuing. His blood pressure is fluctiating again and got really low and then they had to give him more sedation medicine because he was walking up and geting upset. But, he is on 83% oxygen which is closer to the goal that the doctor has for the night. (70-75% is the goal) His blood pressure is mainly too low due to the sedation medicine. They took his feeding tube out because it could enter fear with the blood pressure medicine that he is on now. So, we will see what tomorrow morning brings. I have to go to sleep now...I get my staples out tomorrow and it is so funny, because it sure doesn't feel like I have had a C-section five days ago, the nurses say it is because I have my mind on him and don't have time to worry about myself or the physical pain I am feeling. I am nervous it will hurt to get he staples out though. Good night. Keep him in your prayers, please.