Pictures of Brandon

I don't have email access on the laptop from the Ronald McDonald House so I brought the computer to the hospital tonight so that I can post some pictures of Brandon that I have taken here.

No News Is Good News and Bad News

The opthemologist came to look at Brandon's eyes today around 1:00. He did not see any change in Brandon's eyes from when he saw them on Thursday. They were not any better and not any worse so he does not need the surgery yet which is good news but the bad news is he wants to see him again next Tuesday. His eyes can still get better on their own and he does not have plus disease yet which is why he does not need the surgery yet. If there is no change he will want to continue to see him every week. We are hoping if that is the case that the opthemologist who looks at the babies eyes at Monmouth will feel comfortable doing the follow up and we can go back to Monmouth. If she is not comfortable he will have to continue to stay here until he is ready to be discharged which could be another 4 1/2 weeks. They tell us here that most preemies do not get discharged until around their due date and he still has 4 1/2 weeks until then. We were told at Monmouth that he probably would have been out in about another 2-3 weeks roughly. I will be staying here by myself since Stu will be going home tomorrow to go back to work. Then he will be here on weekends and next Tuesday for the next eye appointment. Brandon was down 30 grams last night from the night before. Hopefully tonight he will gain some weight again. The doctor had the nurse lower his oxygen from one liter to 3/4 liter. So that is a good sign. He is still in the isolette but is set at room air temperature so if he continues to stay like that for a few more days they will try him in a crib again and see how he does with that. We also talked to the doctor to see when they plan on starting to try some bottle feeds again since they have not tried that since he got here. It seems like that should start again too. I just hope the doctors here plan on moving him through things at the same pace as they were planning to at Monmouth. It seems to me like they go slower here.

September 8, 2008 morning part 2

Stu and I sat in on rounds a little while ago. The doctor did not seem concerned that Brandon's platelet count is low or that his white blood cell count is slightly high. Brandon does not seem to be acting sick at all so as of now he is not concerned about it being an infection. They will continue to watch him and see if he starts to act sick. He will have another CBC done on Wednesday to see what his platelet counts are then. Brandon will be up to his feeds goal at 12:00 today. His iv was removed last night when we were here. The doctor also did not seem concerned that Brandon's respiratory rate has been slightly elevated at times. He said they look for the trend and it is okay if his is up and down. They would be concerned if it was constantly high.

September 8, 2008 morning

Brandon gained 40 grams yesterday. He is now just over 4 pounds 9 ounces. He seemed a little stressed out yesterday afternoon about everything that has been going on here but seems much more relaxed now. It was very loud in his section yesterday and I don't think that he liked that. He is now relaxing in his isolette and they did put a cover over it like he had at Monmouth (this was after the nurse yesterday in the day told me that they do not cover isolettes at 35 weeks corrected like he is now). It amazes me how much the nurses here contradict eachother. I had been asking for days for a bulb syringe so that I could suction his nose with it and kept being told they don't have them here and that they don't suction with them. Yesterday's nurse said they do have them and got us one. It seems that way with a lot of things. Some nurses say they don't do it, others say they do. Brandon's platelet count is still down. It is close to needing a platelet transfusion so we will see what the doctors say during rounds. It has been low ever since he had his virus last weekend. His white blood cell count is a little elevated too but we just talked to his nurse and she said he looks great and is very active so she does not think he has an infection.

Stu and I got a room at the Ronald McDonald House last night. We will have it the whole time Brandon is here. It is actually very nice. Our room looks just like a hotel room. Plus there is dinner every night if we want it and tons of food that we can cook for ourselves. There are computers to use and tons of other things. And the cost is only $15 a night.

September 7, 2008 morning

Brandon weighed 2040 grams last night. He is one gram away from being 4 pounds 8 ounces. He got put into an isolette today. They had him on a warmer since he got here. Sometimes they needed to give him some heat, sometimes he was keeping up his temperature while he was dressed and wrapped in a blanket. Since he was up and down on keeping up his temperature they decided to put him in an isolette. He had been in one still at Monmouth and was almost ready to go into a crib but not quite so I am sure he is almost ready here too. This way he can work on other things he needs to do and not worry about maintaining his temperature. He is still dressed and wrapped on a blanket. He is just getting some heat in the isolette.

Brandon is now at 25 cc's of formula every 3 hours and will be at 30 cc's at 12:00 today. They will let his iv fluids run out and then take him off of those since he will not need them anymore. He has been tolerating his feeds well. His feeds had been stopped when he had the virus last weekend.

Something I keep forgetting to write on here is that when we first got here on Thursday and I was holding Brandon I asked for a boppy pillow. At Monmouth they had a bunch of boppy pillows for anyone to use. You just had to put a blanket on top of the boppy before you used it. I figured it would be the same thing here so I was very surprised when a brand new in package boppy came up for me. I didn't realize that by asking to use a boppy I was really buying myself a boppy. Or rather my insurance company was buying me a boppy.

We can't wait for the eye exam on Tuesday. We feel like we are just sitting here waiting to see what happens which is a little frustrating. I will try to update again later. Our parents are all coming today to visit. If anyone else is up for making a trip to Philadelphia to visit please let us know.

9 Weeks Old

Brandon was 2 months old yesterday. Last night he weighed 2005 grams so he is between 4 pounds 6 ounces and 4 pounds 7 ounces. His milk has been being increased pretty quickly. I guess they are trying to get him back up to the amount he had been getting before he got sick quickly. They increase the amount he is getting by 5 cc's every 12 hours until he gets to 38 cc's. At that point I am not sure how much they will increase it. He still has his iv fluids too (he was put back on the iv when he got his virus last week). Here they make them stay on them until they are at least at 30 cc's. Monmouth is completely different about when they take them off of their iv. He had been off of his iv by the end of July.

At CHOP

We are here at CHOP. We arrived yesterday afternoon around 3:00 and shortly after the ophthalmologist came to look at Brandon's eyes. The part of his eye that is affected is zone 2 and it is a stage 2 problem. The ophthalmologist wants to look at Brandon's eyes again on Tuesday. It is not bad enough yet to need laser eye surgery but is almost to that point. He wants to see on Tuesday if it has started to correct itself which in some cases it does or if it has stayed the same or gotten worse. If it has stayed the same or gotten worse he will do the surgery. It will be either Tuesday night or Wednesday morning if he does it. We will be here for 2-3 weeks. Monmouth had told us 1-2 weeks. If he gets the surgery he will need to stay here a little while after for the doctor to look at again. We had been told prior to coming here that the doctor likes to keep him an extra week but the doctor yesterday told us he likes to keep the babies an extra two weeks unless the eye doctor at home is comfortable following through. Then maybe we can come home one week after the surgery.

I really hate it out here. It is very inpersonal. They do things here completely different than they were at Monmouth (the way they feed him, suction his nose, etc.) and when I ask about doing it the way we were before I get told that is not how we do it here. If you want to talk to the nurse when you are not here you call and they page the nurse and then you wait for the nurse to pick up. They also page the nurse when you get to the NICU and you need to wait for the nurse to come get you. You can't just walk in.