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.

Katelyn:

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:

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:

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.

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

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.

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.

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

Finally an update

Derek took this photo

Mom and her boys

Mother and daughter

Dad holding Katelyn

The hardest part about taking so long to update is that it is difficult to report on what has happened over a long period of time. It is much easier when I have posted recently.

I will start with Katelyn. She’s had every test they can come up with to try and figure out what caused the seizures but they still haven’t found anything. While it is very good that they haven’t found a big problem it is still very alarming that they don’t know why. The good news is that it hasn’t happened again. I also wrote about a strange twitching incident in a previous post. It seems like this was nothing. It began to happen again as I held her a couple of nights later. The doctor at that time didn’t think it was a problem and when I woke her up (she wasn’t sedated) it seemed to stop. This made everyone pretty confident that the twitching was just due to an immature nervous system and wasn’t a seizure of any kind. I’m sure I will be alarmed at anything strange for the next year or more.

One of the changes that happened around the time of Katelyn’s first seizure was that she had diarrhea. She’s been tested for a bunch of infections and problems that might have caused this (and possibly the seizure). A couple of days ago a new nurse practitioner had another idea. She had Katelyn tested for something else. They found that she had a virus called “C. Diff”. The way I understand it is that this virus is really common in newborns (and adults) but that these babies usually don’t have the receptors. This means that typically it doesn’t matter if they “have” this virus. The doctors and nurses seem to agree about this. Some say that there is no way she is old enough to have this effect her and others are sure that it could be a problem. However if she did, they all seem to agree that this could put her in a state where she would be more susceptible to seizures. In any case they are giving her a seven-day course of medication to treat it. She seems to be more happy and acting as if she is feeling better.

The interesting thing is that C. Diff is very contagious. Because of this they put Katelyn in isolation. What this really means is that everyone has to wear a gown and gloves when they are around Katelyn. Most likely once she has tested negative we won’t have to put on the gloves every time we visit.

Another interesting note is that one of the nurses did some research. The one change in Katelyn’s medication on the day of her first seizure was that they gave her Gaviscon to treat her upset stomach. The nurse discovered that in very rare cases it has caused seizures in infants. Who knows? Maybe it was the combination of C. diff and the new medication. It may not be verifiable but at least we have a possibility.

The question now is what to do with her seizure medication. It isn’t good to keep her on the medication for a long period of time so they don’t want to give it to her needlessly. However, if it is preventing seizures it wouldn’t be wise to discontinue it. The doctors decided to discontinue this medication and watch her very closely.

Along with acting older and older all of the time, Katelyn is getting kind of chunky. She still is small when compared to most newborns but she is filling out well. She has a lot of personality and she is nursing well now.

Brandon was doing well for a long time but in the last couple of days he began to worry us. His oxygen needs have been fluctuating quite a bit. He also hasn’t been nursing well. They have been testing him for various infections and viruses because this is often and indication that he is sick. This morning he had a particularly bad incident where he basically stopped breathing for a while. He returned to normal after a couple of minutes. Luckily this happened as the doctors where “rounding” on him so they were able to observe how poorly he was doing.

He has been doing a lot better since then. It could be a result of several things. They replaced the tubing around his nose, they gave him a dose of caffeine (because they recently took him off of a similar drug that helped increase his respiratory drive) an his Mom and Dad did a lot of praying. He has been much more stable the rest of the night.
They did more tests including a Lumbar puncture. Guess what they found….. C. diff. One interesting note is that they tested him for this about a week ago and they didn’t find anything. They are going to begin treatment and see what happens.