More photos

Pictures of the family helping with Katelyn's bath.

What's been going on?

Once again it has been an emotional and eventful week.

On Thursday the doctors had once again decided to give the Dragor ventilator another try on Brandon. These ventilators function much more like regular breathing. Rather than using very rapid, short breaths the Dragor allows the lungs to deflate and inflate more. Brandon didn’t do well the first time they tried this other ventilator but he was looking good enough that they wanted to try again. This would be considered a step toward getting him off of the ventilator completely. A test had also come up positive for staff infection but they weren’t sure if it was a contaminated sample or if it was real. They planned to continue to test him for a couple of days to see what they could find.

Thursday night Brandon didn’t do well. He had several swings where he needed a lot more medication. His blood pressure got very low and he was requiring 100% oxygen from his ventilator. They switched him back to the oscillating ventilator. We headed up in the morning after getting the news.

By the time we got there he was much more stable. All of his tests had started to return to normal. We got a chance to stay for rounds and talk to the doctor and the rest of the staff. There is a good size group that does rounds at PCMC. They again assured us that while these swings can be very alarming and dangerous, that they are actually common for a baby as small and premature as Brandon. He also told us we should expect to see more, in fact if nothing like this happened again before he got to go home, the doctor offered to buy us dinner. He was very reassuring and made us feel much better.

However, the nurse was very guarded and didn’t want us to disturb Brandon. She didn’t want us to lift his blanket or touch him. Shortly after rounds we learned that the room he was in needed new countertops and all of the babies in the room needed to be moved. I asked a couple of questions about how it worked. About 4 nurses did the initial move. They basically unhook everything from the wall and push everything into the other room and plug everything back in.

The move didn’t go well. About 2 minutes later they had Brandon in his new room and had begun plugging everything into the wall. The problem is that his heart rate had dropped and he didn’t seem to be breathing correctly. We watched for about 5 minutes (this is a long time to watch) as about 10 nurses and doctors worked on Brandon. His heart rate dropped low enough that they began chest compressions and they seemed very alarmed that his ventilator didn’t seemed to be working. It was very scary. Eventually they got everything working and he returned to a much more stable situation. (Later we had a talk with the several people about why the decision was made to move him because of new countertops when the nurse was concerned enough that she didn’t want us to disturb him.) Needless to say, it was a very stressful and emotional experience.

Because they found infections in only one location, the “art line” the doctor decided to take the old one out and put a new one in. It took a couple of tries but a new one is in now. Brandon did very well last night and they are again going through the weaning process for the nitric oxide (that they had to again start using again during his recent bad spell).

Amy and I got a chance to go up and bathe Brandon last night. This was the first time we have been able to do it. The nurses do their best to disturb Brandon as little as possible but he loves his mom and he seems to respond really well when she interacts with him. He looked really good last night and he seemed very calm and relaxed. He spent a lot of his time trying hard to turn his head and look at his mom. We didn’t take many pictures because the flash is startling and they keep the lighting very low.

Just as an intresting note, Amy went in for an appointment with her doctor. This doctor has access to all of the medical records for Brandon and Katelyn. She told Amy how amazing it was that Brandon made it to this point. She read the notes and said that at first the doctors didn’t think Brandon was going to live. We knew this but they had always phrased it more gently. Now that he had made it past the most difficult part, hearing the doctor say this reminded us how lucky we have been so far. Tomorrow they will be 3 weeks old!




This is a funny angle and the tube is pulling at her cheek. She still has the tape marks on her face but isn't she cute?



Katelyn

Katelyn is doing better in general than Brandon but she also an incident on Friday. The evening after we had watched Brandon struggle we went in to help give Katelyn a bath. We had completed most of the bath when, while suctioning out her mouth; her ventilator tube was knocked loose. We watched while they pulled her tube and put a new one in. She went a while without the tube in her mouth and she turned purple. Again it was a pretty scary thing to watch. They got her back to her normal setting pretty quickly.

Amy took the kids out of the room. I did get to hear Katelyn cry for the first time while they had her tube out. It was pretty horse and could hardly be considered a real cry but I still heard it. I was hoping to hear her first cry under much better circumstances. Also, once they go the new tube back in, we got our first chance to see Katelyn’s face without tape covering her lip. I took a picture but it is from a funny angle. Luckily she is very feminine looking and Brandon is more masculine. We think they are both very cute.

Katelyn also had a positive test for pneumonia about the same time we found out that Brandon had staff. The good news is that they caught it early and immediately got her on antibiotics. She never really showed signs of being sick.
Another piece of good news is that Katelyn’s feedings are going well. She is almost to the point where they can stop feeding her intravenously and rely completely on breast milk. (She still is fed through a tube.)

Video of Katelyn

Here is some video of Katleyn. It isn’t the best but I will try and work on getting better video. I couldn’t catch her opening her eye. This is a big file so I only suggest that you click on it if you have a fast Internet connection

http://www.bla-dam.com/Katelynbath.MOV

Ups and downs

The doctors clearly told us that our experience over the next couple of months would be a rollercoaster ride with a lot of ups and downs. A couple of days ago we hit a couple of bumps in the road with both Brandon and Katelyn. No major problems but we did see a couple of concerning things.

Brandon's ventilator setting rose a little bit and his blood pressure dropped. They where worried that he might have an infection but couldn’t find anything. One of the steps they took was to switch to a different type of ventilator. They hoped that this would be a step toward getting off any kind of ventilator. Once he was placed on the new ventilator for a day, he actually got worse. The good news is that they switched him back and he seems to be doing really well today. The results from all of his tests today looked good and we should be back on track to improvement.

Katelyn’s x-rays of her lungs had been “ a little hazy” for a couple of days. On the same day that Brandon took a step back, they also discovered that Katelyn had pneumonia. They monitor everything so closely that they caught it in the very early stages and instantly began treating her with antibiotics. She seems to be doing much better today and things are looking good again.

Katelyn has a lot of spunk. Everyone once in a while she gets excited and starts thrashing about. However, the nurses have discovered she likes curling up in a ball on her stomach.

Katelyn is really charming in this position.

The diapers that look so big in the photos are actually really small.

How long are they going to be in the hospital?

The official answer is that no one knows. It depends on how things go. The nurses have told us to at least plan on them being in the NICU until their due date. This would mean that we would have them home around the first week of October. However everyone quickly pointed out that it isn’t uncommon to go a couple of months past the due date. We will have to just wait and see.

For now they are in two different hospitals that are about 50-60 miles apart. There is always the possibility that Brandon could be transferred back with his sister once he has improved, but this won’t be anytime soon. It is really hard to go too long without seeing them so we have put a lot of miles in since the 10th.

This is a display at PCMC

I know it is blrry but we couldn't get the boys to hols still for long.

Mom giving Katelyn a "bath".

Katelyn

Brandon - Believe it or not his color has really improved.

How big are they?

I know everyone wants to see pictures of these little guys. After being around them for a long time, I have gotten used to their small size. The funny thing is that now when a look at a 5 or 6 lb full term baby they look HUGE.

Here are some pictures taken the day after birth. Hint: Pink hat = girl and Blue hat = boy

Yes, That is my wedding ring.

More Good News!

You would never think that pooping would make a father so proud. Brandon's bowls have begun to work. He's filling a bag now so it makes diaper changing easy. Although he has been a strong peeper for quite some time so there still is something to change :)

Just before Amy went to visit Brandon tonight he got the hiccups. He didn’t like it much and it made him a little agitated. The good news is that when he stopped the nurse had to drop his amount of oxygen a lot (about 10). It seemed to open up his lungs.