Change of Plans

Brandon and Katelyn both woke up this morning a little congested. We called the hospital and talked with the anesthesiologist. She said that with any other baby they might just proceed but with Brandon it certainly added more risk. If this was just he start of a sickness and he got worse tomorrow, being under anesthesia could make it a lot worse and his recovery could be a lot longer. They left us with the ultimate decision. It was a hard choice but we decide to cancel today. There was no reason to add any more risk. We can put off the surgery for a long time without any problems.

We don’t know when they will be able to reschedule yet. We should find out soon and we will post here once we know. I’m sure that all of your recent prayers will also count when it is actually time for his surgery. We appreciate all the support we have received. It would have been very nice to be done with this soon. The biggest problem is that now we will now have more time to worry about all of the potential complications.

Surgery Day

We found out that Brandon's surgery is towards the end of the day on Wednesday. We have to be at the hospital at 3, but he won't be taken back for surgery until 4:30. One of the hardest things is going to be his food restrictions, but as long as the OR schedule doesn't get too far behind it shouldn't be too bad. He can't have solids aftter midnight, and only clear liquids after 10:30 and nothing after 1:30. The good news is he'll get his first taste of apple juice which I am sure he will love! There are several things that we found out could put a stop to this even at the very last minute, but we are hoping to just get it done at this point (Actually we are both really hoping to get him there and have them tell us that the hernias closed on their own and that he doesn't need surgery at all! But we won't hold our breath.)

Thank you for your continued prayers for Brandon and also for his amazing surgeon Dr. Downey whom we truly love. We'll post more as soon as we can.

Big smiles

We finally got some pictures of Brandon smiling. He always stops when we pull out the camera. He at least started out smiling and in the later pictures returned to his blank stare.

Both Brandon and Katelyn have gained more weight in the last week than they have in the last month. It certainly appears that feeding them both solids, three times a day, is working. I just hope they can keep this up for a long period of time.

We are finally starting to feel a little more normal. Well, normal for a family with two sets of twins and one set needing a little extra attention. I guess we will never really be “normal”. We will have to embrace our abnormality. It will be interesting to see what people say when we are in public with all of our kids. We already have interesting stories with one set of twins. When we started this blog things were very different than they are now. This has been a great way to communicate with everyone but it also means that we have missed out on a lot of personal contact. We are still super busy but looking forward to more contact with friends, family and neighbor s with RSV season almost over and our babies’ health updates are more on a week by week or even month by month basis as opposed to the day by day or even hour by hour as when we started this blog. We will try and do better at things like responding to email and work on returning to normal life.

Keeping busy

Watching TV at the doctor's office

Eating dinner

These glasses just get in the way!

I actually ate some too.

Fighting over toys

Bad photo, but you can see her fuzzy mohawk

Stylish hat

Notice the super hero sticker on her chest. derek found a good spot for it.


It’s been a while since my last post. Last week our whole family was sick. For a family who has tried hard all winter, to stay away from crowds, wash our hands and generally avoid sickness, we sure have seen a lot of it. This last round of a stomach-flu hit pretty hard but luckily it only lasted about 24 hours. With the staggered effect of passing the sickness on to each other, it remained our family for much longer than 24 hours. The boys got sick and threw up in many interesting places, so I did a lot of cleaning during this period. We all seem to be better now and I hope we are close to reaching the end of RSV season so we can come out of seclusion soon. While the babies have been sick several times, we have been lucky and avoided RSV or anything that would come close to re-hospitalization.

Speaking of going back to the hospital, we are quickly approaching Brandon’s surgery. The surgeon has assured us that a hernia repair is so much simpler than his past operations but we are still very nervous. We hope to have him home within 24 hours but we are well aware of all of the complications that can arise from surgery. Brandon’s current surgery is scheduled for the 16th. Please keep him in your prayers.

As I have mentioned previously, Brandon has been diagnosed with hemiperisis. This means that his left side seems to be less responsive and it is developing slower. While it is certainly is apparent and very real, he has made really great progress. He has good moments and bad ones. We were encouraged with the therapist came over and couldn’t tell which hand was the problem hand. Brandon recently had a splint made that helps keep his thumb outstretched rather than always curled in. We keep it on him for two hours at a time throughout the day.

One of our big concerns is that they are still growing very slowly. They are almost 9 months old. Katelyn is 10lbs 10 oz. and Brandon is 11lbs. 7oz. One of the things we are doing to help them grow is feeding them solids 3 times a day. Despite her smaller size, Katelyn eats a lot. She is very messy but she loves to eat. She is also very active and one of the therapists was pretty sure that her high level of activity was burning a lot of calories.

Katelyn is pretty effective at moving around the living room and finding things to play with. She loves Brandon’s glasses, TV remotes and power cords. Brandon and Katelyn often get a hold of the same toy and engage in a tug-of-war.

The other day a funny thing happened with Katelyn. She has not been taking a bottle for months. When we first brought her home from the hospital we worked hard to get her to take a bottle but she resisted. We spent a lot of time with the occupational therapist trying many different tactics but our strong-willed girl resisted. The other day Brandon finished his bottle but still seemed hungry. Amy put a little more milk in his bottle and while carrying Katelyn walked the bottle back to Brandon and me. During the walk back, Katelyn grabbed the bottle with both hands and started drinking. Within a very short period of time she had downed the whole thing. I guess we can give bottles another shot :)

A section of our fence recently blew over in a storm. Yesterday I was outside trying to figure out how to fix it. The handle on the gate also was damaged. I had the latch in my hand when the boys convinced me we needed to race across the yard. I was feeling confident and I told them that I could beat them even if I was running backwards. It turns out I was wrong. They got ahead of me. I turned on the speed and really began to move my legs and arms. Blake figured out that the shortest path to the finish line was to run in my path. The metal latch, which was still in my hand, connected solidly with Blake’s head. As a result, we spent some time in the doctor’s office getting staples in his head. Not only did I feel horrible for seriously injuring my son, after repeatedly lecturing Blake about running with objects in his hand, but I also had to explain what happened to the doctor and nurses. He was very brave and upon returning home he asked if we could go back some time. I’m sure this desire was influenced by the pile of Batman and Star Wars stickers that both Derek and Blake got from the nurse. However, I would have much preferred to skip the experience.

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.