Sunday, January 27, 2008

Long nights

Last night was a long night. Early this week Brandon was showing signs of being sick. He sounded congested, he was fussy and most importantly his oxygen needs went up. We called the doctor and he had us take him down to the hospital to be tested. They discovered that he had the virus. Of course this isn’t good but at least it wasn’t RSV. He seemed to quickly recover. His oxygen needs seemed to return to normal, with occasional swings that didn’t last long. In many ways he seemed to be doing really well. However, he has been very fussy. He has always had the tendency to pull at all of the tubing on his face when he is upset. However, this last week it has been really bad and especially bad in the middle of the night.

When he wakes up he begins by begin very wiggly and agitated. Usually a pacifier will calm him down but he can’t keep one in his mouth on his own. As he gets more agitated his really begins to flail and just keeping the canula in his nose can seem like a wrestling match. This makes it very hard to prepare his feedings. In the early stages the pacifier will stay in for a while so I began by getting him calm and hurrying down to make the feeding concoction of fortified milk and medication. Inevitably he would pull the canula out of his nose and I would have to run back upstairs to make sure he is breathing. After 3 or 4 trips up and down the stairs without much progress towards feeding him, I get pretty frustrated.

In the last couple of days I have learned to just take him with me the first time. This means that I don’t really try to keep him groggy and in an almost asleep state. This also means that he gets really mad. Last night I’m pretty sure we woke the neighbors. Brandon was screaming with all he had. He was angry and there wasn’t anything I could do. I couldn’t find anything wrong so I assume he wasn’t feeling well. Possibly he had a sore throat like the rest of us have had. Whatever the problem was, he has been like this a lot lately. He stayed mad for a while, after about 15-20 minutes I can calm him by holding a pacifier in his mouth but it can take more than an hour to feed him and put him back to sleep. With preparation time, it seems like I spend more time out-of-bed than in-bed.

Because Brandon has been fussy so often lately, we have spent a lot more time holding him and paying attention to him. Luckily Katelyn has been amazingly good. She is such a happy baby. She rarely complains and when she does it is often with grunts and moans long before she breaks into a full cry. She is always smiling and very happy. She also has been doing well at rolling over. She has been doing it for a while but lately she has been fast enough that when I walk away to get a diaper I will come back to find her face down in her toys.

I know that the purpose of this blog is to tell you about Brandon and Katelyn but I want to tell you a quick story about Blake. There is an interesting thing about having twins. Everyone wants to compare their personalities. We are often asked things like “Which one is the out-going one and which one is the shy one?” We have worked hard to not have Blake and Derek feel like they need to live up to theses labels. We would hate for either of them to always feel like they are shy only because they appear to be slightly less out-going than their brother. Also, as any parent knows, it isn’t as simple as picking a personality trait because they will act differently if different situations. In a case where Derek might appear shy, Blake could be very outgoing and in another situation they might appear to be the opposite. I mention this because Blake can be rough and tough in a lot of situations and might be easy to miss the fact that he has a heart of gold.

Yesterday was a comparatively warm and sunny day. We let the boys ride their bikes for the first time in a long time. Blake’s first question, asked through his messenger, Derek, was, can he deliver “emails”. I had forgotten that during the summer one of his favorite things to do was to deliver “messages” to the neighbors. While riding his bike he would often disappear and we would find him down the street knocking on doors. We worked hard to get him to limit his door knocking and to have him ask permission before choosing a neighbor to disturb. The funny thing is that many of these neighbors would later tell us how their day had been brightened (sometimes on a bad day) by Blake’s message of ”I love you” followed by a big hug. The great thing about Blake is that he really means it.

Monday, January 21, 2008

Still busy

It has been a long time since I posted an update. I have good intentions but, as you may guess, we are very busy. I was really excited this weekend because I found time to take out the trash and change most of the light bulbs that had burnt out. Of course there is still a big list of things that we should still do but a lot of the items on our list get put off until later. Unfortunately this Blog has been a part of the do-it-later list.

I also haven’t taken many pictures or video lately. I know we are going to regret this later, but it is hard to find time. It seems like the only time we think about taking pictures are when the kids are asleep. You will notice that in all of this week’s pictures the babies are asleep. I will work hard to make sure that this changes for my next post.

Katelyn continues to do really well. She’s very vivacious and she is generally a really good baby. She smiles a lot and often gets so excited that she can’t control her arms and legs. She just beams with happiness. Her smile and happy noises are very charming. However, when she gets mad she really gets mad. Her cry can sound loud and very, very angry.

Brandon is still getting adjusted to his glasses. When he is calm, he actually seems to like them. The problem is that lately, when he is upset he resorts to shaking his head back and forth and thrashing his hands around his face. This does all kinds of bad things to his glasses. He also pulls tubes and causes a lot of problems. The problem is that when he is in one of these moods, it’s hard to walk away and do anything else. When he pulls his canula out, he can’t breathe. This can make feedings in the night really hard to do. I can’t go get his medication or warm his milk because I can’t walk away from him. He has been doing this a lot lately. I think that he is just reacting to his bad gas. He certainly has a lot of gas and he often dirties his pants more than once during a feeding. The poor guy must be in a lot of pain. It’s still incredibly frustrating when he keeps making things worse and I feel like I’m wrestling him to get his oxygen re-connected.

When he isn’t having gas problems, he is very sweet and gentle. I’m getting used to his glasses and I now think they give him a lot of personality. He too is very charming but it is for a totally different reason. His calm smile and his stare of wonder can also seem to melt everyone but he certainly isn’t as full-of-energy as Katelyn.

Brandon is eating really well in general. In fact, a couple of days ago we thought that we were close to getting rid of his NG (feeding) tube. The problem is that despite his good nursing and bottle feedings, he isn’t growing like he should. He also seems to have good days and bad days.

Luckily neither baby has shown any signs of being sick. Both Blake and Derek have seemed to make a full recovery but now Amy is very sick. Is seems different and more severe than what Blake and Derek have. Amy is forced to wear a mask around and wash her hands a lot. She just went to the doctor today and hopefully the medication she got will help her make a quick recovery. She is doing so much and feeling so badly. I just wish there was more I could do.

Sunday, January 13, 2008

Glasses debut

Brandon’s glasses came much sooner than we anticipated. They told us to expect the glasses to take up to five days to arrive but they came in Saturday. He seemed to have a really good reaction when we first put them on. He smiled a lot. It’s hard to be sure but he seems to like them. However, they don’t sit right on his face so I think we will be in to have them adjusted soon.

Both Derek and Blake have a fever. Derek seems to have it worse and Blake just a slight fever. This is pretty scary to us because we are working so hard to keep Brandon and Katelyn healthy.

Friday, January 11, 2008

More photos

Our family with Grandma.

All dressed in white.

Katelyn was full of smiles.

Such a happy girl.

Brandon wasn't in such a great mood.

Derek givng Brandon a kiss.

Katelyn really likes eating her banannas but she isn't very good at it. She moves her tounge in and out but she doesn't let the spoon go above it.


The funny thing about this picture is that Blake asked me to take a picture with his stuffed animals and "put it on the computer so everyone can see it".

Preparing medication for four days.

Once we've filled the syringes, we label the baggies and put them in the fridge.

The freezer in our kitchen has been used exclusively to store milk for the last couple of months. We are finally getting to the point where there is a little room for something else.

This is what our sink looks like after a very slow day because of good feedings that didn't require extra syringes.

We've filled the bottom of our pantry with supplies.

Thursday, January 10, 2008

6 months full of blessings

Today Brandon and Katelyn are six months old. At least that’s their official age. Because they came three months early we often go by their “adjusted” age when looking at developmental milestones. It is funny how things like free time and sleep seem like such a distant memory but at the same time it is hard to believe that our babies are six months old. It is amazing when we look back and see how blessed we have been. There are times when it seems very overwhelming to have a second set of twins. I find myself thinking about how much easier one baby would be to take care of. However, I’m very happy to have both of them and I wouldn’t give them up for anything. A doctor recently told us that, because Amy has been sensitized, most likely we’ll never be able to have more children that will be able to love us back. When I think about this I realize that having babies two at a time may have been the only way for us to have all of our kids.

In between the chaos, when I’m holding these very cute babies (this happens often when they are both sleeping at once) the thought runs through my mind that I must love my kids more than any other parent. I quickly contradict myself and think that every parent may love their children as much as I do and most likely they all have these same thoughts. It seems arrogant to think that other parents aren’t capable of loving their children as much as I do. Well, the other day when I was having one of the calm moments this same thought again came over me. This time I came to a different conclusion. I have decided that I actually do love my children more than any other parent and there isn’t anything wrong with letting myself believe that this is true. This doesn’t mean that other parents don’t have an incredible amount of love for their children they just couldn’t possibly feel it as much as I do. The only problem with this realization is that it doesn’t seem right to tell the other parents. I should just let them continue believing that they are the ones who love their children the most so lets keep this a secret.

Because the doctors have told us to keep Brandon and Katelyn home and away from the public, we were able to arrange to have the baby blessings that are normally done in church, take place in our home on Sunday. We only have a couple of relatives nearby but a cousin of mine was able to come. One of the nurses who took care of both Brandon and Katelyn came and we also invited a couple of close friends. We had our small group of visitors verify that their families where healthy. They left all of their kids and home. They washed and disinfected their hands when they came in and they didn’t hold Brandon or Katelyn. It was a great experience. It was the first time, in a long time, that we have had so many people in our home. Blake and Derek got a little excited and crazy with so much company and Brandon was a little fussy but everything went well.

On some of the most recent tests we found that Katelyn was low on potassium. The doctor has us feeding her bananas to help her get the extra potassium she needs. She loves the taste of the bananas but we are reminded that there are several reasons why parents don’t typically start feeding a three-month-old baby, solid foods. One reason is that they aren’t very good at the physical act of eating. Katelyn’s tongue starts moving when she tastes the food but it gets in the way at lot more than it helps. It is difficult to get a spoon in her mouth above her tongue. It is very cute to watch but very messy.

Brandon had an appointment with the pediatric ophthalmologist that did his laser surgery yesterday. We knew that there was a good chance that Brandon would have to wear glasses as a young kid but we got some unexpected news. He is near-sighted and he needs glasses right away. We had prepared ourselves for the eventual need for glasses but we were caught off guard when we learned that he’d wear glasses as an infant. I understand that wearing glasses is a very trivial thing when you understand everything Brandon has been through. In fact the ophthalmologist was very, very pleased at the outcome. With glasses, Brandon will be able to see. This is not the case for many babies that get the same eye surgery Brandon had to have. When I stop and think about why I felt this way I realized that I feared that his appearance with glasses would make people assume that he has other challenges. It made me stop and think how parents of children who have disabilities that are visible must feel when they know that people look at their babies and make judgments and likely even say things that might be hurtful. I know that I shouldn’t worry about this and I should just be grateful that he only needs glasses but it just seems hard not to feel anxious.

I also know that glasses will be one of Brandon’s defining features. He wont be the kid with big eyes or the kid with blonde hair, he will be the kid with glasses. We are going to have to work hard to not make him ever feel that wearing glasses is a bad thing. I already realize that this is going to be tough. Even the few people we told about it today have the natural reaction and say things like “that’s too bad” or “Oh, how sad.” Our challenge during his childhood will be to help Brandon feel confident so that wearing glasses doesn’t bother him.

Friday, January 4, 2008

Photos and an update

Katelyn taking a bath. (No tubes!)

Brandon in his new swing.

Brandon in his new swing.

We have seen a lot of this expression lately.

Brandon in his chair.

We are now down to just one tank!

We have a room full of equipment.

It has been really cold lately. This is a shot out of our window.

Things are certainly crazy. It is still surprising how hectic taking care of our kids can be. However things are looking a little better. Lately Brandon has had troubles eating because he has some painful gas. He starts crying about half way through his feeding and can’t finish on his own. There are many factors that could contribute to his gas but one of the big ones is that both he and Katelyn have C-Dif again. At first the doctor didn’t want to treat it but because of his problems we started medication today. For the first time ever he ate two compete feedings on his own – no tube involved. He is such a good little boy. He just needed a chance to do it without pain.

We went to the doctor’s office yesterday and we were quite a site. We have a twin stroller but I still had to carry Katelyn because the other seat was taken up by equipment. The good news is that Brandon’s heart and lungs seem to be improving. We were able to take him off of two different medications. The doctor also explained to us that by about 8 years old, the lungs have been pretty much replaced with new lungs so all of the scaring and problems should go away.