Wednesday, October 31, 2007

More problems

Brandon isn’t getting better quickly. Some things improve and some things stay the same. Although over time there is a little improvement, he doesn’t seem to make big leaps towards recovery. We keep hoping that he will reach a point where his recovery will take off.

We called yesterday morning to see how he was doing. We were told that the nurses couldn’t talk because “they were in the middle of a procedure”. This is a phrase you don’t want to hear as a parent of a baby in the NICU. The nurses often take care of two babies so we asked the receptionist if they were doing the procedure on Brandon. The answer was “I think so”.

More than an hour later, we learned what had happened. They had discovered through an X-Ray that he had a pocket of air between his lungs and the sack that surrounds the lungs. They surgically placed a tube into the area where the air was, so they can drain the air. The tube is still in place and it will drain any more air that leaks. Obviously this means there is a tear in his lungs. The doctors have told us that they will need to be careful with the settings on his ventilator but that the tear should heal on it’s own.

While it looks like everything will eventually get better, I feel so bad for Brandon. He just can’t seem to catch a break. He has a lot of personality, even with a tube down his throat, but he has been very sedated in the last couple of days. He is getting older and every time I look into his eyes I can see he just wants to get that tube out so he can be held and start learning to play.

Friday, October 26, 2007

Brandon is doing well

Brandon certainly isn’t completely well but he is making good progress in a lot of ways. Starting Wed night he began peeing, a lot. This is really good because he has so much fluid that he needs to get rid of. His girth has gone down. His ventilator settings have improved. The blood clot has gotten smaller (they had hoped just to keep it from growing). He had another small bowl movement. All of the other tests that they give him have also begun to improve. He was awake and happy a lot more yesterday. The nurse told us how he played with his disco ball for a while yesterday.

I haven’t taken many pictures of Brandon because he has looked so sick. He looks a little better now but the effects are still visibly apparent.

He looks better but as you can see. He still has a long way to go. It does appear that he has finally turned the corner and it is just a matter of time before he recovers from this infection and all of it’s effects.

Katelyn is doing well. However she did decide that she wanted to eat every 2.5 hours last night instead of her previous schedule of every 3-3.5 hours.
We took the boys to see Brandon last night. Derek wanted to wear one of his Bateman costumes to the hospital. Derek has acquired several costumes lately and he loves to dress up as Batman. The costume had the effect he was looking for and he got attention from everyone. He must have had 20-30 people talk to him about being Batman on the way in the hospital. It was pretty cute and Derek was really proud. He was sure that they didn’t know it was him under the costume and that everyone thought he was the real Batman.

Wednesday, October 24, 2007

Brandon is very sick

It is great to have Katelyn home. She is doing well and it seems that she enjoys being home. She is still attached to the oxygen through a 57 foot long tube. We also hook her up to a monitor for her heart rate and breathing. This makes walking around the house while holding her a little tricky. The monitor has a rechargeable batter and we have some smaller oxygen tanks so we don’t have to stay home all of the time. She had her first doctor’s appointment on Monday and she will have to return often to make sure that everything continues to go well.

I mentioned previously that Brandon was sick. However I didn’t really explain it well. I don’t give a lot of the numbers and details because they are rather confusing and it would take a lot of time to describe them well. However, he is really sick and he looks really bad. He is very swollen over his entire body. He is bigger than Katelyn but that isn’t a good thing. He is usually very heavily sedated. He is back on the ventilator so he can’t make any noise even when he tries to cry. He has a bad infection; they believe it is pneumonia. They also found a blood clot in his heart. At first the nurses were very concerned but the surgeons have told us that, wile it could be potentially dangerous, it is rather common. They are treating it to keep it from growing and they hope it will come out when they remove the tube that it is attached to. His support and many of the various things the tests have been very bad over the last week.

The good news is that he is making progress in the last couple of days. Some of the numbers have started to come down. He had a bowl movement so his operation seems to have been successful. His ventilator settings have dropped a little. He still is very sick but we have hope that he is on his way to recovery. It is still very hard for me to see him in this condition. It is especially hard because, in such stark contrast, his sister is doing so well. He looks an awful lot like Katelyn.

Saturday, October 20, 2007

Birthday with good news and bad news

Brandon before surgery

Yesterday was Amy’s birthday. She didn’t get much of a chance to celebrate. The boys helped pick a cake out but we still haven’t had a chance to eat any.

I will start with the bad news. Over the ast couple of days Brandon has done really poorly. Every time they tried to wean him from the ventilator he ended doing worse and they had to increase his settings. They had to move him to the oscillator, a ventilator they typically use on more serious cases. He even got to a point where they were giving him the maximum support. Even with the maximum support he wasn’t breathing well.

One of the ways they check to see how well he is breathing is to draw blood and check the gasses in his blood. Brandon’s Carbon monoxide level was really high. This means that he isn’t exhaling like he should. If it isn’t exhaled it acts like a poison. His “blood gasses” continued to get worse. They began checking them every hour.

His stomach was rather distended and it was putting pressure on his lungs. He was in quite a bit of pain and was requiring a lot of pain medication. They figured out that he had an infection. They can see that he has an infection because of the way his white blood cells are acting even before they know what the infection is.

Brandon’s condition was very serious and it was very hard for us to deal with emotionally. We have seen him in a very bad situation but it felt like we had fallen so far back. Everything seemed to be deteriorating with Brandon on the Same day we were taking Katelyn home. A couple of days after the surgery we were talking to the surgeon and he told us that his reconnection surgery was one of the more difficult surgeries he had done, and he is very experienced. They difficulty came because the two section he was connecting were very different sizes. Almost 5 to 1. This made the reconnect very hard. He also had to spend a lot of time removing scar tissue.

Even with the infection and respiratory problems Brandon was showing good signs of recovery from his surgery. His stomach began to retract and become softer and the biggest good news is that he passed gas. This means that his bowls are beginning to work and that the passage way is clear. The good news is that today things are looking better. His blood gas has improved. And they actually have been able to reduce the settings on his ventilator. Even with this good news it is hard to se our baby who was very happy and interactive a few days ago in the state he is in.

On to the good news. … Katelyn is home! Amy spent most of the nights last week at the hospital and I spent the last two nights there. The last two nights they put us in a room by ourselves and we took care of Katelyn as thought we were at home.

It took a little longer than we had planned to get her out of there but the good thing is that the extra day allowed her to get a shot that helps prevent RSV. Seeing Brandon’s reaction to an infection just reminds us how sensitive they will both be when they are home. The doctor stressed that we will need to keep them away from people for six moths to make sure they aren’t exposed. A simple sickness could be devastating for them.

Katelyn was sent home on oxygen and with a monitor that makes sure she is breathing and her heart is beating. I thought I would be more paranoid when we brought her home with this equipment but it actually works out well. We have a couple of portable oxygen tanks so we can make trips to the doctor. We also have a big tank that will last for weeks. It sits in a central location in our house and it has 57 feet worth of tubing. This way we can reach most areas in our house.
Having Katelyn home and Brandon in the hospital will present a new set of challenge but we are so happy to have Katelyn home. It feels like we can actual begin taking care of our three month old baby. (102 days in the NICU.)

Thursday, October 18, 2007

Almost today

Today is day of life 100 for Brandon and Katelyn. She was almost ready to come home today. She needed a shot to get a shot to help prevent RSV. It was finally authorized today and she was the first baby in the State to get one. We were happy to wait one more day to get this extra protection. She will be coming home in the morning.

Brandon is doing well. His recovery is a little slow but he is doing just fine. I will give a better report after I visit him tonight.

Things have been crazy. Both Amy and I spent the night at the hospital last night and we will do it again tonight. Obviously I haven't posted many pictures but I will soon.

Wednesday, October 17, 2007

Katelyn – coming home soon

Brandon is recovering. He still has some challenges. His oxygen needs have increased and he seems to be retaining fluids. All of these things are expected but it feels like a big step back because we have already gone through all of this. There aren’t any real problems. We will just have to watch him.

Our frustrations with Brandon have been because of other challenges. They moved him once again. This must be a record because it is his 8th bed space. They also had nurses take care of him that didn’t know him well and information wasn’t being passed on. For example, we know that his urine might be green because of some dye they used during surgery but the nurse had no idea. The hard part is that the nurses all still think they know what is going on. The good news is that he has one of his primary nurses today and he should be well covered for the next couple of days.

Amy has spent that last couple of nights at the hospital with Katelyn. She drops in at home for a while during the day but the boys and I still miss her. She has been feeding Katelyn throughout the night. The current plan is that I need to be at the hospital this afternoon to learn about how to use the equipment Katelyn will need when she comes home. Amy and I will spend the night and make sure we can do everything on our own. If everything goes well, she will be released from the hospital in the morning.

We have a weird mix of Jubilation and fear. We won’t have a lot of the monitors and daily tests that we have become accustom to. I’m sure I will be paranoid all night long. We will also have a new set of challenges as we have one baby at home that needs a lot of care and can’t be exposed to many people because of your weak immune system and at the same time Amy will need to begin to feed Brandon soon. We will work everything out. Even with the fear, our little girl is finally coming home!

Monday, October 15, 2007

Surgery results

Brandon’s surgery went well. It took a long time and waiting so long made us very nervous. When it was all over the surgeon sat down and explained what happened. In order to hook everything back up correctly they had to cut out another small portion of his colon. While this sounds scary, the surgeon said it shouldn’t have any long-term effect on him. When we left him he was still pretty sedated. We have called since and he is starting to wake up. We will have to watch and see how well he recovers.

Katelyn has eaten well so far tonight. The nurse told us that, if all goes well throughout the night tonight, she might suggest that we continue during the day and turn this 12 hour feeding period into a 24 hour period. It is kind of scary how fast things seem to be moving with Katelyn.

Sunday night update

I don’t have much time so I don’t update the blog as often as I would like. It seems that I often get a chance on Sunday night.


I just left Amy at the hospital. She is feeding Katelyn for an overnight 12-hour period. Luckily they let her use one of the sleep rooms so she can get some sleep in-between feedings. The success varies from feeding to feeding. She usually eats just under her target amount of feed at the end of the 12-hour period. She hasn’t been gaining as much weight as we would hope when we do these 12-hour feeding periods. No one is quite sure what this means. We will keep trying. Once the doctors are satisfied that she is doing well enough with the 12-hour periods they will try a 24-hour period.

They retested Katleyn for C-Diff and she was positive again. There seems to be a lot of question about what it means if she is positive for C-Diff and even a questions if they treat it again. We will have to talk to the doctor on Monday and see.

They Dressed Katelyn up in a pumpkin outfit and took some more photos:


Brandon’s big news is that his operation is scheduled for 1:00 on Monday. Keep him in your prayers. This certainly isn’t as big of an operation as his first one but they have prepared us for all of the potential problems. Even if the surgery goes well, recovery could be along slow process. Everyone has a different estimate and we have heard everything from 2 days to 21 days for recovery. It seems that a week is most likely but in any case they have warned us he may not look good for a while.

Brandon’s eyes are doing well. The doctor said they are regressing and he will take another look at them in a week. It appears that the chances of him loosing his eyesight are pretty slim at this point. It will be along time however before we will know if he will need glasses.

Here are some photos of the boys having fun:

Friday, October 12, 2007

A lot going on

Both of our babies are doing well. Katelyn is making progress on her eating. She has progressed to the point where Amy is feeding her every time she is hungry for a period of twelve hours. She then jumps in the car and runs up to see Brandon. She has done this twice now and she is going to do it again tomorrow. She has been doing well at this in general but still has been slightly under the target amount of feed. Once she has done well enough at these 12 hour periods the next step is a 24 hour period. This means she is getting close to coming home.

During these twelve-hour periods they have also begun to give Katelyn a bottle at some of the feedings. I was able to bottle-feed her tonight. One of the nurses helped us learn how to bottle-feed her. I know this sounds easy but they have some very specific methods that hey want us to use and many of the nurses don’t know how to do it right. Of course, I’m now an expert. She didn’t eat a full-feeding when for my bottle feed but I’m sure it was because she was awake for several hours before the feed and got tired. It’s not because I’m not great at it.
Brandon is scheduled for surgery on Monday! This is great news. It should go well. His recovery period can vary quite a bit but once he has fully recovered there is a good chance they will transfer him back to Utah Valley. This could be as early as a week from now but will most likely be a little longer.

Saturday, October 6, 2007

We have twins - 2 sets of them

Because they have been apart and we've been worrying so much about everything else, sometimes I forget that we have a second set of twins. These two photos reminded us how similar they are.
Both Brandon and Katelyn are doing well tonight so there isn’t much to report. I know that we keep posting pictures of Derek and Blake holding the babies but they are so cute we can’t seem to resist.

Blake holding Katelyn

The boys and Katelyn

Friday, October 5, 2007

Laser eye surgery

Brandon had an eye exam yesterday. Unfortunately the ROP (retinopathy of prematurity) in his eyes had progressed to the point where he needed surgery. The doctor told us that, if left untreated, his eyes had advanced to the point where he had a 30-40% chance of loosing his sight.

They didn’t waste any time and today at 4:00 he had the surgery. The doctor said it went “perfectly”. He was done really quickly and Brandon did well in surgery. They will need to watch him over the next two weeks to make sure that everything heals correctly and verify that the surgery was a success. These surgeries are relatively safe and very effective. They don’t completely eliminate the possibility of blindness but it is dramatically reduced.

We’ll need to have Brandon’s eyes watched carefully as he grows. It is likely that he will still need glasses from an early age but we won’t know what his eyesight will really be like for a couple of years.

By the way, Katelyn also had an eye exam recently and her eyes have really improved.

What! I need eye surgery?

Hanging out waiting.

I won’t feel a thing.

Thursday, October 4, 2007

Getting old

Katelyn with Catherine, the best nurse ever!

Both Brandon and Katelyn have been doing very well in the last couple of days. They are almost to their due date. They were due on October 7th and on the 10th they will be three months old.

Katelyn has been taken of the anti-seizure medication and they are hopeful that she won’t have another one. We are a little scared of being too hopeful because of how bad it will feel if it happens again. She has been very happy and content. As I gave her a bath last night she hardly cried at all. She did a lot of grunting and seemed very happy. She normally fusses when I take her out of the water and she hits the cold air but last night she didn’t complain much at all. Katelyn is getting chubby (at least she looks that way to us). She is now 5 lbs 14 oz. she is doing well with her feedings. Amy is feeding her twice a day.

Brandon has also returned to his normal self. He hasn’t had any problems for a couple of days. Who knows which of the many things they did, made the difference. He weighs 4 lbs. 2 oz. (1870 grams). The goal is to get him 2000 grams so they can do his “take down” operation. However, it seems like a relatively simple operation with a short recovery time. He too has been eating well and Amy might start him on two feedings a day again really soon.

Monday, October 1, 2007

Happy photo post

Blake kicking the ball
Derek running

Finding a place to rest

Celebrating after a goal

Sometimes it is more fun to stand in line. Blake is getting his nose pinched and Derek is the the hoodie.

Playing with Legos

Crazy pose for the camera

Derek wearing a cape and showing off his Star Wars toy

Uncle Nathan took them climbing. They were really good and taunted the adults as they beat them to the top.

Free climbing

Playing video games at the hospital. They really impress the workers withe thier video game playing ability.

Hats they made in pre-school

Too much excitment in one day. Yes, that is a Power Ranger costume. (Thanks Laura!) He loves to wear it to the hospital because of all the attention he gets.

This is the view from Primary Children's Medical Center

Same as above but at night