Twins Everywhere

Blake drew the picture above. He really wanted to put it up on the internet so everyone could see it.

Both Brandon and Katelyn are making good progress. They are getting better at everything. They are still small but in the last week they have been growing better than the previous week.

Brandon has done so well breathing that we have been able to take him completely off of the oxygen during the day. We have to keep the oxygen close at hand because every once in a while he needs a little. He also needs some oxygen at night when he sleeps. It feels so good when we are able to walk around without having Brandon attached to cords.

It seems that most people have some sort of twin connection. Somewhere in their family or in the family of a good friend there is a set of twins. It’s interesting how often we come in contact with twins. The other day was a warm day and Amy decided to put the babies in the stroller and walk to the park. The babies don’t get out of the house very often unless they are headed to the doctor’s office. The boys where playing in the park when an older girl asked them if they were twins and she began to compare them to see how much they looked alike. She, and the guy that was with her, asked them to stand next to each other and, when she did one of the other kids that the girl had asked to step aside said that his twin sister was playing on the other side of the park. The guy who was with the girl who started the questioning said that he was a twin. This same girl said that she was a twin but her twin didn’t survive. None of them ever realized that one more set of twins, Brandon and Katelyn, where nearby covered up in their stroller. Of the 15 0r 16 people in the park eight of them were twins.

Hope

This week has been busy and Blake and Derek have caused their share of trouble but I don’t have another crazy story to tell. Life is certainly busy and it is hard to get much done other than taking care of the basics (and even some of the basics get neglected) but the older the babies get the more it seems like we might survive.

Last week I wrote about how we learned that it was very likely that Brandon was going to have some trouble with the left side of his body. Amy was at the appointment where they discussed the possibility and it was extra hard for her. The doctors used phrases like, “It’s seems to be really mild so we don’t want you to worry, he will probably be able to walk.” They talk about how many children with disabilities don’t let it slow them down. The talked about how hard it is for some parents when their children need to be picked up by the special education bus while all of the other kids in the neighborhood are going to a different school. Obviously this is all very overwhelming when an hour before you didn’t know for sure that anything was wrong. To make things even worse they talked about how it is hard at first because many parents are in different stages of acceptance and one may be in denial while the other one is depressed.

This certainly made it hard for me to be my usual optimistic self, even if so far I had always been right. Luckily, this week ,we had a good experience when we talked with one of the occupational therapists that has worked with Brandon for a long time. She gave us a lot of reassuring information. She had seen Brandon get through a lot of things much more difficult than this. Although the neurologist gave us a wide range of possible outcomes, she let us know that she felt really good about Brandon and the possibility of it being so mild that only a neurologist could tell there was a problem. We have many things that we work on with Brandon and we have a specialist coming this week to give us more information. Brandon also seems to be making really good progress. Although, it is pretty clear that his left side is not developing as fast as the right it also seems to change depending on the circumstance. We have seen several times when he uses his left hand almost as well as his right. This gives me a lot of hope.
The experience with the neurologist reminds me of an experience that Amy and I had a short time after the babies were born. A nurse, whom we now secretly and affectionately refer to as “Crazy” talked with us about some of the choices we might have to make. She had good intentions and I can see why she thought it might be good for us to hear what she had to say. She saw the condition Brandon was in and knew that it was likely that we would have many more problems than we actually had. She began to talk to us about quality of life and how many parents struggle with the decision to continue to extend the life of a child who has severe problems. She was very nice and stressed that this is no wrong or right answer but she also hinted that we should think about it. Of course this was a little overwhelming. We were just hoping that Brandon would make it and we didn’t even fully comprehend all of the problems that could arise with such a premature baby. However, we were blessed incredibly and we never had to even consider a decision similar to the one this nurse was describing. It was a situation where a nurse was anxious to help us and give us information but it might have been better to wait and see what problems we actually were going to face before talking about the possibilities. Luckily we detected a part of this nurse’s personality that earned her the nickname, so we were able to take this conversation well

The hospital called and they rescheduled Brandon’s surgery for Wednesday the 16th. This is a little harder for me than on a Friday. In order to have all of the tests done it is likely he will need to stay longer o this may mean more time off work. On one hand we are anxious to get everything taken care of but on the other hand we are really nervous to send Brandon back in the hospital. They have warned us that because he will need to be sedated and on a ventilator longer to complete all of the tests that it may take longer for him to recover. However one time is still better than two.

It’s been 8 months today!

Blake and Derek

Blake and Derek have been at it again. We had some warm days last week so Amy let the boys play in the back yard while she fed the babies. They came back in the house a short time after being outside and told her they found a toy on the other side of the fence. They went back outside after Amy told them they would have to wait before she could help them. Not too long after they went back outside she heard voices in the backyard so she went to see what has going on. Three of the neighbor’s teenagers explained that they had come over to help them get the toy and had also offered cookies to Blake and Derek to convince them to come down off the roof of their shed. You can see from the picture that they must have climbed up on the fence and then climbed on the roof of the shed. It’s a good thing that we have great neighbors.

Unfortunately this isn’t the end of the story. Amy told them they could continue to play outside after their cookie if they stayed in the backyard. She also told them to hurry back. When Amy went to look for them a few minutes later, they were gone. Amy first found Derek in the back yard. He explained that Blake had gone to find someone to help them get the toy that was stuck between the fences. Amy met Blake and another one of our great neighbors walking back toward our house. She lives about five houses down on the end of the block. Blake had convinced her that the toy retrieval was very important and that she should walk back to help him. She too was of course unable to get the toy that was stuck in the approximately 1 inch space between the two fences and told them just as everyone else had all afternoon that they would have to wait for their dad. One of the funniest things about this is it was not even their toy – just a random toy that has probably been there for years.

Brandon

We have had many health care visitors at our house. We have carefully watched many aspects of both Katelyn’s and Brandon’s development. One thing that we have been watching is that Brandon seems to favor his right hand. This is something we might have noticed but not thought much about it. However they pointed out that he had a tendency to make a fist with his left hand and rotate his arm out. They told us it could potentially be a sign of a problem but we should work with him to make sure he uses both hands. As we did we observed that sometimes he would use both hands but he had a very strong preference for his right hand and often he would leave his left hand in a fist.

This last week we had an appointment for Brandon with the ophthalmologist and the neurologist. Brandon’s eyes seem to be doing really well. He will continue to need glasses but so far everything is good. When Amy asked about the future of his eyes the doctor said that most likely he will need to have a stronger prescription as he grows. When Amy asked about long term the doctor seemed super optimistic but wouldn’t speculate. He said that just 15 years ago they wouldn’t have been able to save his vision at all. He can’t even imagine what they will be able to do in another 15 years.

This reminded me of some other interesting information we once got. We once asked about the long-term prognosis for Brandon’s lungs. The doctor said that there was very little long-term problems and that in a couple of years the lungs would completely heal. However she mentioned that they didn’t have much data for what happens after the age of 20. They haven’t been saving babies in this situation long enough to have data past 15-20 years.

When the neurologist looked at Brandon we got a bit of bad news. The bad news is that she was pretty confident that he has a problem. The good news is that she is also pretty confident that it is a mild problem. It could be cerebral palsy that was a result of prematurity or it could be a result of a stroke he had back when he was having problems with a blood clot. Needless to say this information was pretty hard to take.

We won’t really know the effects until we watch Brandon develop. It could be so mild that only a neurologist could detect it or it could turn out to be pretty severe and we would see it manifest itself more as he develops (although it wouldn’t actually be getting worse.) If they can work out the complicated details, when Brandon goes for his operation on April 11th they are going to try and do an MRI at the same time. Although this will make his stay longer, we really hope to get both things taken care of with one sedation rather than going back twice. It is already going to be a hundred times harder to send Brandon off for an operation than it was when he was already in the hospital.

Although we have been already incredibly blessed and things have gone so well we still have to ask for more prayers and blessings.

Despite this depressing possibility both Brandon and Katelyn continue to be more active and social. Several of the doctors and nurses have noticed how much Brandon likes to interact with people. In fact he often is much more happy making noises and smiling at people than he is playing with toys.

No Photos

This time I’m blaming the delay in posting on the Blog on our camera. It was having problems so we had to send it in. Luckily it was still under warranty. We just got it back but while it was gone we didn’t take many pictures. It’s hard to post without pictures.

Both Brandon and Katelyn are making developmental progress. We always know what should be the next in their step. We are always working to help them to get better at this next step. The problem is that we also know what to watch out for. This can make us a little paranoid. The instant we see them doing anything that might be a warning sign of possible trouble, we panic a little. However, they always seem to move on and get pas it quickly. We get visits from many specialists who are trained to look for problems. Of course they often mention things that could turn into problems and we should watch out for. It can be really emotionally draining to hear about these potential problems.

Katelyn is starting to work on her crawling. She is really good at rolling around. She can’t quite crawl yet but you can see that she is getting close. She is also getting better at everything else. Katelyn has quite a temper. We have known this from the beginning. Even the nurses in the hospital noticed her temper. She is delightful when she is happy, which it most of the time. She can sit in her swing and play contently with her toys for long periods of time. When she smiles she can brighten the room. She can be amazingly charming. However, when she is mad she can also really let you know how she feels. If you set her down for a second, when she wants to be held, she acts as if she was just placed on a bed of nails. She lets out a scream as soon as she hits the ground. She also has a specific grunt/scream sound that she uses when nothing is really wrong but she wants attention.

Brandon is also making good progress. He is starting to roll over. Brandon can certainly do his share of crying but in general it takes him longer to get really angry. He also loves to be kissed on the cheek and he loves to “talk”. He will often stare at me and exchange grunts and smiles for long periods of time. He too can be really charming but it feels a little more calm and interactive. Katelyn, on the other hand, is more about energy and excitement. When she smiles, her arms flail because she can’t contain all of that happiness in her little body. Brandon’s happiness is calmer but every bit as charming. Even the heath care people commented about how social he is.
Our big challenge at the moment is that neither of them are growing much. In fact, sometimes they will lose weight for a couple of days. We are doing everything we can. We are adding extra calories to Brandon’s bottles and feeding Katelyn fortified solids but they are still really small. I don’t know what more we can do but it is a little worrisome. They are already so small. I just hope they both go through a growth spurt soon. One explanation that the doctors have mentioned is that even thought they are still a new-born weight they are old enough that they may experience more growth spurts and plateaus.

The other day Amy sat in church behind a family with a baby. She watched the baby play for an hour and as she got up to leave she asked how old she was. The baby was born on the same day as Katelyn and Brandon. Of course she was much bigger and a lot further along. Even though we know that we should focus on our adjusted age it is hard not to compare and feel a little weird when you are looking at other babies the same age. We know 5-week-old babies that are bigger than Brandon and Katelyn even thought they are approaching 8 months old.

The big news we got last is that Brandon has his last hernia surgery scheduled for April 11. This surgery is much simpler than his previous surgeries but, because of how hard it was for him to recover in the past, this makes us pretty nervous. Every time someone who doesn’t know Brandon’s history gets a look at his scarred tummy it seems to surprise them that a baby so small could have gone through so much. If everything goes well, he should only be in the hospital for 23 hours. The good news is that, if he recovers quickly we will soon be out of RSV season and we will be able to bring them places. Amy and the babies will be able to come out of seclusion.