A couple of photos

Here are all four of our cute kids. We continue to sturggle trying to teach Blake and Derek how to be gentle. They LOVE playing with the babies and the babes love it too.

BYU had a bye this week but they still climbed in the poles due to losses from teams previously ranked above them. These are photos from Last week’s game. The final score was 44-0, the second shut-out in a row.

Inside Brandon’s Head

Many people want to know what’s going on inside their baby’s head. Now we know. Last week Brandon had an appointment with the neurologist to go over his MRI and MRA. There weren’t any real surprises. It was exactly what we had expected - he had a stroke when he was about 3 months old. However, it was a very strange experience in several ways. I felt a wide variety of emotions.

First of all, here is what we had confirmed:

Before Brandon’s second operation they attempted to put in a PIC line. This is very common in the NICU. It’s a line that goes from the arm into the chest and near the heart. This allows the doctors to easily administer drugs and take blood, and most importantly deliver quality nutrition. Just before the operation they tried twice to place a PIC line and where unsuccessful both times. As he went into the operation and they still couldn’t get the line in they choose instead to use a Broviac line. It is very similar but it is surgically placed directly into the chest.

A while later they discovered that Brandon had a blood clot attached to the end of this line. This was very dangerous. They gave him some medication to help break it up and in a couple of days it was gone. We knew there were a lot of risks involved. About a week later it came back and they gave him some more medications and then eventually pulled it. The only reason that we even found out about it is because they were doing echos to follow his pulminary hypertension. (which is oficially gone now!)

It appears that this clot or a piece of it must have dislodged and traveled up into the right side of Brandon’s head where it restricted the blood flow to part of his brain. Without the blood flow to this area of the brain this section of the brain ceased to function. It was in the area that is responsible for motor control on his left side.

One other possibility going in to the MRI would have been that Brandon had some bleeding in the brain. This is a common problem for very premature babies. The blood vessels in the brain are so small and sensitive that they often bleed becuase of the early exposure to oxygen. This bleeding can be responsible for a lot of brain damage. We had never seen bleeding in Brandon’s head when they had checked while he was in the NICU. Also, we knew he had the blood clot so this was the result we were expecting. It didn’t appear that this was the problem.

Here is an image the doctor printed from the MRA. They are taken from below as if you were looking from his feet up into his head. It shows the blood vessels and you can plainly see the lack of blood vessels in the circled area of the Right side of the brain. It should look similar to the left half.



This is an image from the MRA. On each of these procedures they would take a picture and then move up about a quarter inch and take another one. This resulted in images that are like peeling away a layer each time a new image is taken. It’s like removing a slice of bread each time from a loaf of bread. Once they moved up to the right height, we could see the extra fluid that filed in the places where the blood flow had been restricted.


The damaged area is contained in the motor skills area. All of his learning and other areas of the brain seem to be OK. We will have to watch vision because there are a couple of vision areas that run through this section of the brain. They could potentially result in blind spots on his left side but it appears that the problem is pretty localized. The good news is that it’s not something that will get worse. In fact, as we have seen with Brandon’s progress, it is likely to improve. If an adult suffered a similar stroke, we wouldn’t be likely to regain the motor control. However babies adapt well and other parts of the brain may take over the lost function.


The human body is amazing:

I have learned a lot with these babies. While I sat and looked at these pictures I was once again amazed. First, there are so many things that can go wrong it’s amazing that anyone survives. It is also surprising how something so small and seemingly insignificant as a blood clot could be so harmful. On the other hand, it is incredible how resilient the body. If part of the brain is damaged another part can just take over. Wow.

Encouraging:

It was encouraging news. Brandon is progressing really well and it appears that he is learning how to use his left hand. The doctor was very positive and so am I. I always joke with Amy that our baby who was 1lb. 7oz. at birth will end up playing in the NFL. She is optimistic too but she thinks I’m crazy. However, I really believe that as he grows up, no one will believe his story because he will do so well. In fact, your casual observer wouldn’t even notice a problem now (other than his delay stuff like crawling).

Upsetting:

I sat at looked at images of brain damage of this little boy I love so much. It’s almost hard to share these images and show everyone that there is something wrong with his brain. It’s hard to admit that he isn’t in perfect condition. It also appears to be such a large section and is so obvious that even I can see it in the MRI. Despite the encourage outlook, it’s not an easy thing to see as a parent, even if it what I had expected.

New Outlook

As we visited the pediatric neurologist’s office I could look around and see many kids that have some obvious neurological problems. I know that Brandon’s problem is minor in comparison and I don’t really understand what these other families go through. However, as I mentioned in a previous post, I can’t help but feel more empathy for these families.

Pirate Girl & Carnival

Katelyn put on this pirate hat and she would get mad every time I tried to take it off.

She just ate breakfast and I hadn’t had a chance to clean her up.

The boys decorated 2 liter bottles of pop for their school carnival. They were pretty proud.

They got to pose with Star Wars characters at the school carnival.

We have a costume box and the boys love to dress up just for fun. Derek likes dressing as a Pirate or any Star Wars character and Blake really likes the raccoon costume.

Soccer and Teeth

These are some shots from Blake and Derek’s soccer game a while back. You can see that Brandon has a bunch of teeth that have recently came in. This meant a lot of nights with poor sleep for me. However, he has been much better this last week. I think he is feeling much better.

Brandon has also gone without oxegen for a while now, (even at night). For a long time he has been very inconsitant. Some night he didn't need anything and some he needed more. Recently I took a good look at the probe we were using and I think we were getting bad readings. I beleive he hasn't needed oxegen for a while now.

Brandon also went the pulminologist today. He was doing great with no major problems!

Walking

If you have noticed from the previous posts, Brand0n is getting much better at sitting. Even though she is still under 13lbs. Katelyn is close to walking on her own. We recently pulled out this push toy and she LOVES it.

BYU Victory

My good friend from high school and roommate at BYU now lives in Idaho. We bought BYU football season tickets this year because we had high hopes for the season. The Popes drive down for all of the home games. The Dads and one kid go to the game while the rest go do fun stuff. It’s fun for everyone. Yesterday BYU crushed UCLA 59 to 0. The outlook for the season is looking really good! (I predicted an undefeated season before the first game and now I sound a little less crazy)

Here are some pictures we took before the game yesterday:

Brandon's a sitting boy now! (His glasses got smashed so he will be without them for a few days while they are being repaired)

She must have wanted the big football. Katelyn does a lot of crying lately when she doesn’t get what she wants. We’re going to have to work on that

Siblings

Lately Blake and Derek love to play with Brandon and Katelyn. We have to remind them to be very careful because they all get really excited but they have a lot of fun. The babies love the attention and usually laugh and laugh so it can be hard to convince the boys to calm down when they get rowdy. The boys also love to hold the babies. Here are some photos:

Aunt Stacie sent some cool shirts for the boys, right after they started Kindergarten. If you can’t tell, they thought the shirts where pretty cool.

Costco with 8 kids and 2 strollers

All of our good planning efforts went a bit astray today and we ended up biding our time with a Costco trip with the Sinemas. So my friend Aimee and her 4 kids ranging in age from 9 to 10 months and me and my 4 kids went on a Costco shopping trip. Blake & Derek took turns pushing the Sinema's baby and I pushed Brandon and Katelyn in the double stroller and Aimee did the cart with 3 kids in it. We were a moving traffic jam and no doubt quite a spectacle making out way through the store. I think I got asked at least twice if I had triplets. No, thank goodness - no triplets here! It was a very amusing trip and we always have fun with the Sinemas!

Matter of Perspective

Katelyn can't figure out how to put them on.

Katelyn showing off her muffin. She was REALLY excited.

A trip to Thanksgiving Point with the Popes.

I think it is funny how a lot of parents feel that the hardest number of children to manage is the number they currently have. I will often hear things like “I thought two kids were hard but when we had our third, it really got hard. We could handle two kids but it was much harder to go places with three young kids.” This simply means they have three kids.

Although Amy is amazing and takes all four kids to a lot of places, if she sends me to the store with all four kids, I have to brace myself for the worst. However, if she takes just one, and I only have to take three kids, it feels so much easier. It doesn’t even matter which kid. I think it is all a matter of prospective. When you are used to four kids, handling three is just easier.

There are a lot of ways that our experience with Brandon and Katelyn has changed our perspective. Even though we’ve been through a lot we feel really lucky. The outcome has been great. We have seen many other parents that have a lot of varied outcomes and some of them have not been as lucky as we have. It’s amazing to see how happy these parents can be when their child is able to do something that many people take for granted. When someone tells us about how their baby came a month premature and stayed for a couple of weeks in the NICU, we obviously have a very different perspective on how big of a deal that situation is. However, to most people this would justifiably be a very big and potentially stressful event. There are also many people who we know who could look at us and say we got off lucky and we have not idea how bad it could really be.

Amy and I recently came in contact with a mother who obviously had some sort of paralysis on one side of her body. When I first saw her I knew nothing about her condition. However, because of Brandon’s situation I instantly had a very different feeling than I might have had in the past. Brandon is making good progress and I have some serious hope that the long-term effects of his hemiparesis will be very minor. Even though our two situations may be very different, I can’t help but feeling this instant connection to this woman. I look at her very differently after having thought about how something like this might affect one of the most important people in my life. I often feel the same way when I see other kids with other disabilities. Because we have narrowly escaped many of these trials, I feel like I understand better. When I think about the difference I have come to the conclusion that my new perspective allows me to feel even more love for these strangers. It’s not that I didn’t feel this way before but it is now deeper and with more understanding.

Brandon has an MRI & MRA scheduled for this week so we can better understand what’s going on in his brain. Because Brandon had a blood clot in his Broviac line, I believe that Brandon had a stroke that caused his hemiparesis. Hopefully this test will let us know if this is what really happened. We have to meet with the doctor to discuss the results so it will be a couple of weeks before we know anything.


The medication that Katelyn has been taking for her lip seems to be helping. We think her lip is looking great.