Brandon & Katelyn

A New Family Blog

2009-01-19T20:48:00.001-08:00

We are closing a chapter in our lives and in our blogging. When I read our blog heading I realize how far we have come. The last year and a half have been full of ups and downs but for the last long while we are mostly up. Life is still very interesting, but it is life - all our lives. We have decided to start a family blog to replace our posting to Brandon and Katelyn's. Our new blog is www.twiceblessedtwice.blogspot.com We will keep our blog public for now and you can follow our family there.

Christmas Photos Plus

2008-12-27T22:21:00.000-08:00

This is the photo we used for our Christmas card this year.

They wonder why we don't want them to sleep in our bed.

These are more of the photos we took in California. We picked these as the best of our family. However, Brandon didn't have any good shots.

The BatMan Wings are still on all the time.

Merry Christmas

2008-12-25T17:19:00.000-08:00

I got a new camea for Christmas. This means we will have better looking photos on our blog. I still have a couple of videos from my cell phone that I took in the last couple of weeks. We had a fun Christmas indoors. There was a lot of snow outside.

Remembering Blessings

2008-12-25T17:15:00.000-08:00

I started to write this post quite a while ago but I have finally gotten around to finish it today:

A wide variety of people read our blog . Every once-in-a-while I feel the need to write something a little more personal than I would normally write to this diverse audience. An experience I had on our last trip reminded me of something that happened quite a while ago. When I look back, I can see it was a big turning point for Katelyn.

The recent event occurred when we were in California. One of my brothers was having some health issues and asked for a blessing. My Dad, my brothers’ in-law and I all participated. They all hold the priesthood. These guys have diverse personalities but they are all very solid men whom I would trust with my life. I was struck with the power that these otherwise unassuming guys had. It’s a great feeling to be a part of something that has strength that so obviously is beyond one’s normal ability.

Amy later reminded me of another blessing that was given to Katelyn when she was in the hospital. Katelyn had just had her second seizure and had to return to the more intensive part of the NICU. Before this point she had been doing well and we had begun to discuss when she could come home. She then had two seizures and really went downhill fast. After not needing any help breathing for a long time, she had to be put back on a C-Pap machine. The medication she was given caused her to swell over her entire body. She also got some water in her lungs. In short, she was in terrible shape and looked very bad. It was heartbreaking to see our little baby girl in this condition especially after she had been doing so well for so long. We had a conversation that was so overwhelming it brought the doctor to tears . It was touching to see how much he cared as he talked with us about how a second seizure meant it was very likely that Katelyn would continue to have more seizures. It was also likely she would have some brain damage as a result. This news was very hard to handle and left us, once again, very saddened. This was our baby that was doing well just a couple of days before.

This time my cousins were visiting the hospital and able to assist me in giving Katelyn a blessing. It was a very sincere and powerful experience however, it was hard to evaluate her condition because we were always watching for new seizures and we never felt that she was out of danger. The great news is that Katelyn never had a seizure again and has fully recovered with no noticeable side effects.
Even thought it was hard to recognize at the moment, looking back now it’s easy to see how significant that blessing was to Katelyn. I know that with both Brandon and Katelyn we have been very blessed as a result of priesthood blessings.

Oops

2008-12-14T23:05:00.000-08:00

When I dress Brandon and Katelyn, I’ve been known to make an occasional mistake. I may not pay much attention to what I’m doing and have done things like put the wrong pants on the wrong kid. More than once I’ve slipped Brandon’s glasses on Katelyn. I usually realize what I’ve done when she gives me a bewildered look. The other day I was in a hurry and I made a bigger mistake than usual…

My boy looks good in pink.

Brandon liked Santa but Katelyn, not so much.

Brandon needs a hat in this cold weather.

Addresses Needed

2008-12-04T21:37:00.000-08:00

Okay so this week I have been working on our family Christmas cards and then it dawned on me - I have no addresses. My oh-so-complete Christmas Card file that I have been building for years vanished earlier this year when our computer crashed hard! So I have nothing. If you are reading this and you receive cards from us or even if you want to receive Christmas cards from us please email your address to this temporary account: foxchristmascard@hotmail.com

Phone pictures and video

2008-12-03T22:28:00.000-08:00

Our good camera died on our last vacation. We are working on getting a new one so if anyone has any suggestions for finding a good deal, let us know. I have used my phone to take pictures and video a lot more lately. It's really bad quality but Katelyn has been doing some funny stuff. I will need to get some photos and video of Brandon soon.

The candy bowl fell on the floor and Katelyn managed to open this sucker. we strapped her in the booster seat and she was very happy as she made a sticky mess.

These are Batman gloves. When she crawls on them it triggers fightin noises. She won’t take them off.

Dr. Katelyn

She opened the closet and pulled out paper and pencil. She thinks that she’s an artist

You will notice that she loves hats and just about anything she can put on.

The funniest part about this video is right after I quit taking the video, she put her face up against the wall to check and see if that is what she really ran into.

Katelyn stole the toy from Brandon and used it as a walker ... and yes, the thing on her head should be covering her diapers.

Thankful

2008-11-29T21:50:00.000-08:00

Before the Thanksgiving moment is totally past, I wanted to share my feelings about gratitude and memories of last Thanksgiving. I think it is obvious that we have a lot to be grateful for. But to name a few things. we are grateful for how well Brandon and Katelyn are doing. We can't count all the bullets we have dodged. For Derek and Blake who are amazing little boys who have exceeded any possible expectations during the last almost year and a half. Being great big brothers comes naturally to them and I have honestly never heard a word of jealousy from either of them. We are so grateful for good friends and family who mean so much to us.

This year we enjoyed Thanksgiving dinner at our home with my mom and the Sinema family. We had a great dinner and then went to see Bolt and then back home to enjoy pies and ice cream. It was a great day.

Last year Thanksgiving was another of those really, really low points for our family. And one that I think needs to be acknowldged. There is something about reflecting on the past that I think is so important. It teaches us so much to reflect on where we've been.

On Thanksgiving day we were preparing to have a nice dinner with our family. We were preparing the meal and were so excited to have Katelyn home and we were preparing for Brandon's transfer to Utah Valley. While dinner was finishing up we were upstairs doing something and then we came downstairs to finish up with dinner. We put Katelyn in her swing and walked across the room when we heard her choking. We quickly discovered that the nasal canula that deliverd the oxygen she needed was filled with water. Blake had been playing around and turned the humidifier on the oxygen upsidedown. When we came down the water started flowing down the tubing. This resulted in a frantic 911 call while Brent tried to get her breathing (she was basically drowning in all the water) and a visit from the paramedics and later a trip to the emergency room at Primary Children's which left Brent and the boys sleeping in the van waiting to find out what to do. Thanksgiving dinner was ruined and the day was horrifying.

Looking back on the whole thing, I still see everything unfolding through the viewpoint of someone else. I couldn't believe it was happening to me. What a difference a year makes. We can't say that enough at our house. More than anything else, I am grateful for my family and how happy our life is now. While it may not be normal by anyone else's standards, it is our normal and we love it.

Firsts

2008-11-21T23:45:00.000-08:00

I wanted to share the some of the recent firsts in our family.

Katelyn wore shoes last Sunday. We have looked and looked for shoes that would fit either of them with no luck. Both she and Brandon's feet are not only small, but Katelyn espeically has very narrow feet. Not the typical fat baby feet. So anyway, a lot of effort and thought has gone into trying to find something that would work. On Sunday I put some thick tights on her and then happened to think of some shoes that Wendy gave to us and they were just narrow enough for her to keep on her feet, but after all of that effort - she hated them! She wouldn't even stand up in them. She wouldn't let her feet touch the ground in them. Today we tried again, and she loved them, but they really are just so big she couldn't keep them on. But she liked them a lot more and really liked her dad's shoes too.

Brandon is cruising. Okay, so this doesn't mean that he can stand and cruise independently, but he can side step and mostly support himself at our ottoman. I am just elated that he is doing some reciprocal movement with his legs. It is very encouraging. He is also sitting pretty consistently. He has been on and off for the last couple of months - frustrating! But he seems to like it now.

Blake and Derek are making the adjustment of being in separate kindergarten classes just fine. They like it and they both seem to be thriving in every way. The social aspect is tricky when it comes to playing with friends, etc. Blake has gotten a couple of invites that have been for just him, because they are in his class. Until Friday it has always worked out so that they have both been able to go and play. But on Friday Blake went to go play at his friend Will's house and Derek had his friend Rilee over to our house to play. I know it sounds silly, but it is the first time thier social calendars have parted. And It was a bit weird for me, but not for them. The funny thing is that for all of the planning and discussing that went in to making this a happy thing for everyone (and trust me there was a lot of that!) Blake's friend's mom emailed me Friday morning and said that Derek was welcome to come. That is totally what he would have preferred to do, but I think he still had a fun afternoon.

Katelyn took her first steps this week. She has been standing and wallking with toys for a while, but we've decided she is just too chicken to let go and walk. So I started working with her to get her to let go and come to me and she is doing it! She is so afraid. She loves to push things around thought, here is her recent favorite push toy (this also happens to be Brandon's favorite toy to play with). On her hardwood floors she practically runs with this thing. I got out of breath trying to capture her doing this. (yes, i am THAT out of shape!)

And yes, those are her bloomers on her head. We are looking for a cute hat for her for Christmas. She loves to wear things on her head!

Brandon's lungs seem to be healing and making progress. By summer he was only needing oxygen while he was sleeping. While we continued to use the pulsed oxymeter to monitor his oxygen saturations we started to see an unusual trend by early Fall. Some nights he would need oxygen and some nights he wouldn't. Finally one night Brent said he'd had some trouble with the probe that goes on his foot to measure the oxygen saturation. I changed it later that night and he hasn't needed oxygen since, so it was really just a bad probe I think. So sent the big oxygen tank back and just kept a little one for security through the winter months with respiratory season and all. This is the first time in 13 months we haven't had a big tank on the stairs.

This has left a permanent mark on the carpet on the landing of our stairs- a good reminder of where we have been will help us be grateful for where we are.

And last of all a family first for us. We have Christmas lights on the house and they are all up already. I am so excited! I wish we had more, but maybe next year. For now I am happy that the bottom roof line is lit and maybe next year Brent can figure out getting the top level, but I love Christmas lights and have always wanted to have a fun lit house at Christmas. Maybe I will post pics later.

Too Many Doctor's Visits

2008-11-13T22:13:00.001-08:00

This blog has become more of a family blog than a blog about Brandon and Katelyn. We are considering starting a separate family blog. However, the way we work, it will take a long time for us to get around to it so in the mean time we will keep sticking everything here.

I miss our old camera. These photos just aren’t as good.

It’s been a busy week. Amy and the kids made several trips to the doctor. Everyone has been sick. Brandon and Katelyn have been sick and we are treating them as if they had C-diff (although we didn’t have them tested again). Derek had a really bad fever and Blake had a bad ear infection. We are still working hard to avoid getting sick but we can’t seem to avoid it completely. It makes me nervous about what might happen this winter.

To try and keep babies from getting RSV and having to be hospitalized a medication called Synagist can be administered. However, they only give it to babies or kids that are at high risk and qualify for it. We found out that both Brandon and Katelyn qualify. It wasn’t surprising that Brandon qualified because he’s only been off of oxygen for a short time but it was good news that Katelyn qualified. The bad news is how much these shots cost. The bigger the dose the more it costs. As they grow the dose needs to be increased and the shots get more expensive. They will need a shot every month during RSV season. Most likely 4-5 months. The dose that they will need this month will cost.....

…$3K a piece for a total of 6K. That’s right, $6K this month. It gets even trickier because there are a bunch of ways to get these shots. They will even come to our house. However, each method has different insurance coverage so Amy’s spent a lot of time on the phone trying to figure out the best method.

The other day the insurance guy came in to give everyone the lecture about signing up for next year. The topic of the lifetime family maximum came up. He said that it’s $2million but assured us that no one ever reaches that max. The insurance company can't easily give us our total -when we ask they just tell us to add up everything on the paperwork they’ve sent us. They must not understand that this is literally several reams of paper. We keep thinking we have to be misunderstanding the total, because our best guess is that we have crossed the $2 million mark. Health care costs are just so amazing and it is funny how confident the insurance guy was that no one ever reaches the max.

These where taken in our backyard the other day:

Here are some photos from Halloween that I should get up before Christmas:

Halloween Memories

2008-10-31T21:40:00.000-07:00

Halloween was so fun with all four kids. I couldn't help but think of last Halloween. Katelyn had been home for a few weeks but Brandon was still at Primary Children's Medical Center. That day he was still very sick after surgery and we found out he had blown a Nuemothorax (a small hole in his lung) and there was free air in his abdomen. They had inserted a chest tube to release the air. He was so ademetous that nothing we had gotten him for halloween would fit anyway, but he was so sick and had so many lines and tubes that it didn't matter anyway. We laid his onesie that Derek had made and the hat we had picked out on top of his swollen body for pictures. It was a sad day and I remember vividly the disappointment and pain of the day. When the babies were first born we told Blake and Derek that they would probrably be home around Halloween. It was three weeks past term and we thought it was a safe estimate, but that day especially it was abunduntly clear it would be much longer for Brandon.

Tonight we enjoyed taking all kids trick or treating and the worst thing that happened is Brandon threw his glasses out of the stroller without us noticing. But we noticed fairly quickly and were able to find them - well Blake was able to find them (which was no easy task in the dark, after a light rain, with leaves everywhere - thanks Blake!!!) They were completely unharmed in spite of the fact that they were on the sidewalk on Halloween night for 20 minutes!!!! What a difference a year makes! It is truly unbelievable how much different life is now than it was last year. I would take looking for miniature glasses any day over what we were dealing with last year. We are so richly blessed and there simply aren't words sufficient to express my wonder and gratitude for the miracles that are my children!

Sorry for the bad lighting! Our camera with a flash is not working, so this is one was taken with our video camera. Blake was a black ninja and Derek was Obi One Kanobi. I was Chewbaka.

Brandon and Katelyn got to go "trick or treating" at Brandon's motor class at Kids on the Move.

The cutest little devil!

Brandon wearing his signature pumpkin hat in the NICU last September.

Derek with Brandon - Halloween 2007

Brandon - Halloween 2007

Halloween 2008

Drink!

2008-10-30T23:26:00.000-07:00

Our latest challenge with both Brandon and Katelyn is getting them to drink. A couple of weeks ago Katelyn decided to quit nursing. We’ve also been working on weaning Brandon. This all sounds great but we’ve really struggled to get them to drink enough. They aren’t showing any signs of dehydration but it’s not uncommon r them to drink half of the daily minimum, despite the fact that we are constantly offering them drinks.

We’ve tried all kinds of cups. One of the interesting things we’ve tried was hair coloring bottles. They made it easy to squeeze and help the babies get the milk through the straw. They still weren’t getting enough. We talked to the doctor and he said if they get less than 10 oz. for a couple of days in a row that we needed to bring them in. This was kind of scary because we know what kind of things they do when babies aren’t eating and drinking enough.

Despite our efforts to keep our family healthy, we’ve been sick lately. Derek had Strep and Brandon had a Ear infection. Although Katelyn didn’t show many other signs of sickness weh ran a slight fever and threw up a couple of tijmes. This made it even harder to make sure whe was getting enough fuilds.

With the suggestion from one of our therapists, Amy did some hard-core modifications to some of our sippy cups by replacing the straw with some tubing. The good news is that it seems to work. They drank more today than they have for weeks.

When we were in California we had some family photos taken. The photographer was great and he posted a handful of the pictures at his blog. I put some of hem below.
Here is his blog: http://www.briankhang.com/blog/the-fox-family/

I got a bunch more photos of our trip to California from my family.

The water was very cold but we couldn't slow them down, even after Blake took in way too much salt water and lost his lunch. He was heading back the waves before we could burry the evidence.

California

2008-10-24T00:17:00.000-07:00

It’s been a while since our last post. We’ve been busy. We recently returned from a trip to California. The boys had some time off of school and it had been years since we visited my family in California. It was time for the kids to get to know their cousins, aunts, uncles and visit Grandma and Grandpa’s house. We got a chance to go to LEGO Land, Disney Land and the beach. The boys loved all of it.

Our camera quit re-charging part way through the trip. However, with the help of cell phone cameras and getting pictures from the rest of the family, I have a bunch of pictures to post. As we get more from everyone else I’m sure we will continue to post pictures of our trip.

Brandon has recently started tucking his legs under his body when he sleeps. This was taken at our brief stay and my Aunt and Unlce's house in Vegas on our trip. We came into town very late and left very early each time we passed through Vegas.

Brandon with "Fireman" Uncle Nathan.

Cousin's and and Aunt Deanna on a roller coaster at LEGO Land.

Watching Their Weight

2008-10-01T14:54:00.000-07:00

Brandon and Katelyn are still very small. Although I don't know exactly how big Brandon and Katelyn are - last time Brandon was weighed he was 15 lbs (about 3 weeks ago) and Katelyn is narrowing the gap. As I have been doing some shopping for them to have the fall/winter clothes they need I have had to laugh. They are wearing 6 month clothes now. I find that shopping forthem is kind of the opposite of shopping for myself. I hate to shop places where the sizes run small and I need to buy a bigger size to fit me. I would always rather be wearing a smaller size on the tag ( I know this is completely ridiculous, but true!) I do the opposite for the babies. I love Old Navy and Target's sizing because I can buy bigger sizes and the fit them. There is something very exciteing about them wearing a 6-12 months and having it fit well because it least it has their age on the tag.

Now that we are transitioning out of traditional baby food to more and more table foods, we have to find new ways to sneak in a few extra callories. Squeezable margarine can go in almost anything, although we don't usually use it in food that is not sweet. But we are adding heavy cream to the whole milk they are getting in a cup. We still add formula to any baby food they get and yogurt, applesauce, etc. Who would have ever thought you could do these kinds of things to keep a kid growing. Katelyn is still also on her appetite stimulant as well. We go in a few weeks to the doctor so we'll find out how much they are gaining then.

A couple of photos

2008-09-28T22:58:00.000-07:00

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

2008-09-19T21:26:00.000-07:00

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

2008-09-19T21:01:00.000-07:00

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

2008-09-18T23:04:00.000-07:00

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

2008-09-14T22:50:00.000-07:00

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

2008-09-14T17:24:00.001-07:00

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

2008-09-14T17:00:00.000-07:00

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

2008-09-12T23:08:00.000-07:00

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

2008-09-01T09:30:00.001-07:00

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.

Bath Time

2008-08-29T10:17:00.000-07:00

I just love this picture of all the kids! I had bathed Brandon and Katelyn first and gotten Katelyn out but Blake wanted to get in with Brandon and then when the two of them were having so much fun Derek had to get in two and Katelyn was content to just stand on the side and direct things (this comes very naturally to her). I can't remember if we've said on here that her "first words" appear to be "Hey guys" shouted - always shouted! I fear her next word will be stop it. I don't know where she learns these things?????? Brandon is waving and saying hi, but not unless he is in the mood!

That is Blake's fist coming over and making Brandon roar with laughter!

First Day of Kindergarden!

2008-08-25T10:00:00.000-07:00

Blake & Derek are at Kindergarden right now and Brandon and Katelyn are both asleep. I am so gitty with this free time that I don't know what to do. But I wanted to share some of these cute pictures of Derek & Blake on their way to school. They were so excited! I can't wait to go get them and hear how it went!

No news is good news

2008-08-18T00:30:00.000-07:00

Dad and the kids

The Fox kids and the Sinema kids (execpt Lilly who didn't want to be in the picture) on an outing to Thanksgiving Point.

Blake at Thanksgiving Point.

Derek at Thanksgiving Point.

Fortunately there hasn’t been as much to report lately. We are really busy but things are going well.

Brandon is rolling around and sitting up much better. We continue to work with him but we are very pleased with his progress. He is using both feet and both hands much more often. Even without crawling he can roll and spin. He gets around pretty quickly. We are concerned about his eyes and worry that he might need another surgery. He has an appointment this week so we should find out more.

The big news with Katelyn is that the dermatologist told us about a new drug that seems to be very effective for getting rid of hemangiomas. This new drug usually works quickly and effectively without many side effects. We are waiting to get approval from her pediatrician before we start. The spot on her lip has been significantly reduced by her current treatment but it requires her to get multiple shots every couple of weeks and it has taken quite a while to shrink it down to where it is now.

They are both growing. It’s not huge growth but we are pleased. We often get strangers asking how old our babies are. When we answer 13 months there is often an awkward pause. It’s funny because people will say all kinds of things that could be considered offensive but most people seem to fear that they will offend us if they say anything about them being small for their age. The other day, Amy took the kids to a restaurant. She was feeding the babies macaroni and cheese and Brandon was excited about eating the meat. Amy said that she was being closely watched by a lady near by. She finally asked how old the babies where and once she found out that were over a year old, she told Amy that they looked really young and she had been worried about what Amy was feeding them.

Progress Report

2008-08-03T23:05:00.000-07:00

It’s been a while. Both our computer at home and my computer at work have had major problems. We finally had to break down and get a new computer at home. Also, work has been crazy but now that I’ve got access to computers, I have fewer excuses not to post.

Brandon has recovered really well from his surgery. He still has a couple of steri-strips on his incision (one has come off and the others should come off soon) but other than adding a new scar to his collection, he’s totally recovered and doing great. I’m glad he’s a boy because I’m hoping that all of the scars on his stomach are cool and not embarrassing when he is a teenager. Brandon has been doing well with his oxygen. He went a couple of nights without needing any. His alarm has been going off tonight so he is on 1/32 (the lowest possible setting). He’s also making progress on other developmental stuff too.

We took both Brandon and Katelyn in for another follow-up clinic the other day. While he is making great progress the neurologist told us about all of the potential problems to watch for because of his hemi-paresis. It was pretty discouraging to hear but I have to remember that we have heard about a lot of terrible possibilities and things have turned out great so far. We will get a MRI done soon so we can better understand why he has the hemi-paresis. We continue to see therapists and work with Brandon with many different exercises and stretches. Progress doesn’t come instantly but it does come and we are very encouraged by this progress? Brandon’s newest favorite thing to do is wave Hi.

Katelyn loves to clap and she is still a ball of energy. She seems to be more on track with her adjusted age and her biggest challenge continues to be her growth. She has been eating fairly well and she loves anything that we are eating. However in the last couple of days she has decided she isn’t interested in nursing. The problem is that she still doesn’t drink from a sippy cup or a bottle so we have to work hard to make sure she gets enough liquid. Brandon is small too. He is just less than 14lbs. but Katelyn is still under 12lbs. and progressing very slowly. The good news is that we are going to try switching what we use to supplement her food. What we are now using is incredibly expensive. 6 cans run $250. We’ve also started a medication that should increase her appetite. I’m pretty hopeful that it will have a very positive effect and help her grow.

Katelyn loves her soft blanket and she will curl up with it and go to sleep almost anywhere. Yes, she's asleep in this picture.

Blake and Derek got toothbrushes with suction cups on the bottom. They thought it would be funny to hook them together.

This is a sketch I did of Katelyn while she was asleep in church. We haven't taken many photos lately.

Surgery Details

2008-07-22T23:01:00.000-07:00

Brandon dressed for surgery.

One of the hard parts about getting a baby ready for surgery is that he can’t eat for several hours before the surgery. They gave us a complete schedule. His last solid feeding was the night before. His last feeding of breast milk was early in the morning and his last bit of clear liquids came about three hours before the surgery was scheduled.

Everything didn’t go super smooth. We made it to the hospital right on time. We filled out paperwork and dressed Brandon for surgery. It was going great until the nurse came in and told us that there had been an emergency surgery and that we had to wait another three hours. Brandon was able to drink some apple juice at that point but he’s not fond of drinking out of a cup so he got VERY little.

The funny thing is that Brandon is very outspoken when he gets hungry so I anticipated trouble but he was great! We walked around the hospital most of the time to keep him distracted and he was pretty happy the whole time. I was amazed.

We had been told that he had two hernias but when the surgeon looked at Brandon he felt like only the left side needed to be repaired. Afterward he said it was a very complicated surgery. Because of his former surgeries he had a ton of scar tissue. The doctor said it was bad enough that he couldn’t tell what was what. He told us that when this happens they need to use “another technique” but he also said that it went really well and everything was good.

As I mentioned, when Brandon woke up he was mad. One of the nurses said that he was one of the loudest babies she has ever heard. He has learned to scream lately and he can certainly make some noise. We he is calm and happy it’s hard to imagine but he and Katelyn can to a great job of disrupting church every week. Even the next morning Brandon was pretty drowsy when we first went back to see him but he was pretty calm. He was able to begin nursing right away and he was acting pretty normal within a couple of hours. He was however very calm and he just wanted to snuggle with his mom. Both Brandon and Katelyn have a slight fever but they are doing well and I assume the fevers have nothing to do with the surgery.

We had been told that the goal was to keep Brandon less than 24 hours. Based on what we heard we were expecting it to be closer to 23 hours but when Brandon was doing so well in the morning they sent us home pretty early.

We got a chance to stay at the Ronald McDonald house (Katelyn, Blake, Derek and I), or as the boys call it, the Old McDonald house. In addition to a very inexpensive place to stay it’s a great place. They have a huge kitchen. They have a bunch of free food that is donated by various people groups and restaurants. And a different group comes in each evening and cooks dinner for everyone. In addition they have stuff like free passes to the zoo and the children’s museum. The boys wanted to stay longer than one night. However, we did get a chance to hit the zoo for a couple of hours so they had a lot of fun. As great as it was, I hope we don’t ever go back.

This is the wagon we used to pull Brandon around the hospital.

Katelyn didn't want to stay in the wagon but luckily Amy moves fast.

Brandon in the recovery room.

Pictures from the zoo. (My grandfather always pointed out that those cougar statues were sculpted by a relative - Unle Avard)

The funny part about this picture is that Derek was actually mad at me for finishing his ice cream cone. He was grumpy so when I told them to look mad he didn't want to do what I said and he smiled, Blake looked mad liked I asked. They should be actors because they both look convincing.

Good news

2008-07-21T22:21:00.000-07:00

Brandon's surgery was a success! He is doing well. He was very sleepy when I left but the docter said that when he first woke up he was as mad as a hornet. That was good news.

I will posts more details soon. Amy is at the hospital with Brandon. I'm at the Ronald McDonald house posting with my phone. The boys are asleep and I hope Katelyn decides that she is sleepy soon. I'm very tired.

Third Time's A Charm

2008-07-20T16:06:00.000-07:00

Well, I think we might make it for Brandon's surgery this time. This is our third time on the schedule and so far so good. Brandon is well and so is everyone else in the house. In fact Brandon didn't need his oxygen most of the night last night, so he is stronger and doing better! He is also bigger and I think he is going to do well. We'll keep everyone posted tomorrow. He is scheduled for tomorrow afternoon and the goal is to be there less than 24 hours.

Fun Hospital Visit

2008-07-13T23:16:00.000-07:00

Well you know you are weird when the funnest thing you do to celebrate your babies' birthday is to go to the hospital, but that is what we did. I had been thinking about doing it, but knew that we had invited all the people we most wanted to see to the party. But when Catherine (the nurse who was a "primary" to Katelyn & Brandon) called to say she probrably wouldn't be able to make it to the party I dedided to just go. It was a fun visit and we got to see a lot of people in the NICU. We also visited Perinatology, but we didn't get any pictures there, they were busy preparing for a transfusion that day. The pediatric surgeon who has done Brandon's surgereies and who we think is an inspired genus happened to be at Utah Valley that day so we went to see him in the clinic. As we left the hospital that day Derek said "Mom, does everyone at this hospital know us?" No, thank goodness - not everyone!

Brandon with Dr. Downey (who as long as we can keep Brandon healthy, we'll be seeing again on the 21st for the hernia repairs)

Katelyn gets a little overwhelmed when we do these visits. But here she is with Catherine.

Brandon is a bit more easy going.

Brandon with Rafino, a Resperatory Therapist.
Brandon with Deann a lactation specialist.

That night we let them open presents. They both enjoyed it, but we got some great shots of Brandon's joy:

I love Brandon's expression in this one!

The Party

2008-07-13T22:39:00.000-07:00

Here are a bunch of photos from Brandon and Katelyn's Birthday party. Amy had fun making cupcakes. A couple of friends came over the day before and helped out. They made a wide variety of great tasting and exotic cup cakes. We had 9 types of cupcakes to choose from and ther were over 200 total.

I took a couple of leftovers to church the next day and I think it was the most popular lesson I've ever taught.

We wated to take pictures of everyone that came to the party with the babies. We started out doing well at the beginning of the party (thanks Aimee) but we didn't do so well at the end. Bassically we have a bunch of photos of poeple who arrived first.

Mammaw with Katelyn

Out good friends the Pucketts.

Brandon was one of Jane's first patients at Primary Children's

This is our neighbor Kristie who helps Amy out a lot.

Our good frined the Francis Family

Our neighbors the Dunfords

Becky, one of Katelyn's Primary nurses at Utah Valley Hosptital.

Another good friend, Aimee Sinema

We gave the babies each a birthday cake - it took Brandon a little longer to figure out he could eat his but they both loved it!

Video

2008-07-13T22:21:00.000-07:00

Here is video of Katelyn at the parade on the 4th. She likes to drink out of a cup but she could still stand to have a little more practice. Can you tell?

Brandon and Katelyn opening birthday presents, with a little coaching from their brothers.

Brandon enjoying his birthday cake.

Happy 1st Birthday Brandon & Katelyn!

2008-07-10T06:16:00.000-07:00

A year ago when our fourth transfusion for Brandon and Katelyn started to go with poorly with Brandon's heart rate dropping we could never have imagined what lay ahead. Even today I cannot readily remember a lot of the past year. But I never loose the awareness that we have been blessed with miracle after miracle beyond what we could possibly deserve. Brandon and Katelyn are just supposed to be here and I feel a little extra excitement to watch their lifes' purpose on earth unfold. But for today I am just so grateful for the opportunity to raise them and know them. I prayed countless times for the opportunity to do that and my prayers were answered. They bring so much joy to our family. Happy Birthday Brandon and Katelyn, I am so glad to be able to celebrate this day with you!

Birthday Announcement

2008-07-06T23:29:00.000-07:00

We've been so busy that we've had trouble getting Brandon and Katelyn's birthday party announcments out. We decided to post one here. We are looking forward to celebrating with all the many family and friends that have helped us so much during this last year. It will be an open house.

Below are larger version of the photos we used on the announcement:

Crazy 4th of July Weekend

2008-07-06T19:21:00.000-07:00

The fourth of July is big around here. There is a lot of really fun stuff to do. Amy’s mom recently moved here and the Popes came to visit too. We had a blast.

On the 3rd we got up very early and went to watch the hot air balloons launch.

Emily and Derek looking up at the balloons.

A big group of friends spent the night on the parade route to save a
good spot and were nice enought to share.

Brandon hanging out in Brynlie's car seat.

This expression pretty much sums up what Brandon thought of all the festivities!

Derek and Blake had so much fun roughing around
with some of the older boys.

The Foxes and the Popes

Mammaw and Blake at the parade.

Lilly and Kaylee with the babies at Brick Oven after the parade.

The babies enjoyed watching the fireworks.

Katelyn loves food - other people's food. She is strong enough and determined enought to get it too. She would not let us take this sample away from her. She also loved the dippin dots.

Blake wearing armor at Colonial Days.

Derek in the armor.

We have started giving the babies baths together.

They love it! And we do too, it is so much easier.

Katelyn showing off her new bloomers.

After all of the 4th of July festivities we did some birthday partying. Jordyn is 14 today!

Katelyn exploring her first birthday gift.

Derek and Blake roughing around with Bill.

Birthday Party Aftermath

2008-07-02T23:48:00.000-07:00

Blake & Derek were so tired today after the non-stop festivities yesterday that they fell asleep in the car on the way home from our errands. This happens sometimes, but I had a very hard time waking them when we got home. Then I got in and quickly began nursing the babies and I couldn't find Derek who I knew he was coming. I kept yelling for him, but he wasn't responding and then when I got up after looking around I found him passed out over the chair. Then I went out to the van and Blake was still out there and was difficult to wake up. He was crying by the time I got him moving and a few minutes after I got him in the house I found him on the landing. It took me more than an hour to wake them peacefully from their afternoon nap.

Busy July

2008-07-01T22:34:00.001-07:00

Work is crazy. We have a lot planned for the 4th of July weekend and all 4 of our kids have Birthdays in July. (Funny how that works with two sets of twins born in the same month.)

Brandon and Katelyn have a party coming up soon. I can’t believe they are almost 1 year old. Here are a couple of recent photos:

Katelyn and friend Brynlie.

No, those aren't oversized plates. Just normal 10" paper plates.

Here are some photos from Blake and Derek’s party today and our family dinner after:

Happy 5th Birthday Derek & Blake!!

2008-07-01T21:50:00.001-07:00

Today we celebrated Derek & Blake's 5th birthday. It was a super fun day from beginning to end. They are such amazing little boys and I love each of their fun and unique personalities. It took some convincing this morning with Blake to get him to believe he was 5 even before his party started. And Derek was very concerned about the last minute preparations and whether the house would be clean enough for his friends to go through or whether we would have to direct traffic straight to the back yard as he had seen at a party they day before. They had so much fun playing with so many friends at their pirate water party- between friends from preschool, friends from our old neighborhood and some new friends from this neighborhood their initial list of people to invite looked more like the size of a football team than a 5-year-old birthday party. I don't know what it says about their future, but out of the 14 total kids there were only 4 boys (including Derek & Blake). Should I be scared?? Derek especially says he likes girls best. Blake is already enjoying chasing them.

Although they have had as rough a year as anyone in our family, they have been amazing! Being Derek & Blake's mom is one of the most fun, rewarding, humorous, joyful and fun-filled things I have ever done. Thanks for putting up with me boys! I love being your mom!

Two Weddings with a Funeral Director

2008-06-26T23:34:00.000-07:00

That sounds like a good title for a movie. My uncle runs a mortuary. He was at both weddings. I just threw that in there because it made for a catchier title. Things have been very busy and it has been a long time since I posted anything. Let me start with the two weddings.

My cousin Tyler was recently married not to far from where we live. My parents and sister Staci where able to come for the wedding.

Blake and Derek before the wedding

Brandon at the reception

My niece Sienna at th wedding

Not long after my brother, Nathan, got married in Cabo San Lucas. Amy survived 5 days without me. This was no simple task. While I was gone the dishwasher quit working so she also managed to take care of that and all four kids. Here are some photos from Mexico:

Candind shot of Nathan and Dianna

View from out room in Cabo.

Kids playing in the rose petals.

The rehersal dinner

My sister Staci and her family after the wedding

4 of the 10 Grandkids - the ones who made it to Mexico

Baby Update:

Brandon has cut his first tooth (while I was gone). He continues to make progress with using his left arm and leg, however some days he seems to regress. Those days can be pretty discouraging. Overall he is doing well. One of the new activities we have been working on is teaching him to crawl up our stairs. Crawling on the stairs can be easier than on a flat floor but he learns the same movements. He really wants to move and he gets frustrated when he gets stuck on the floor and can’t get where he wants to be. Both Brandon and Katelyn have been pretty sick. Brandon’s oxygen needs went way up. He even had to use oxygen during the day. However, he is down tonight and I haven’t heard the alarm for a while.

Katelyn’s new trick is clapping. (It looks like I need to work on getting some video up.) We also took her in today to get more shots for her lip. It is getting much better. I really hope it continues to improve at the same rate. Katelyn’s biggest challenge has still been growing. Niether Brandon or Katelyn are growing like they should but poor little Katelyn seems to have the most trouble. We have been doing everything we can. One problem is that she often throws her food up. Because she has been sick lately it has only gotten worse. Amy took her to the pediatric gastroenterologist last week. We have changed formulas and we are trying a bunch of different approaches. One problem is that this new formula is crazy expensive. and has to be ordered by the case.

Our good friends the Pope's came to visit. We had a lot of fun spending time with them. Here are a couple of photos:

Holding Hands, Playing, Rocking and Sleeping

2008-06-13T00:18:00.000-07:00

Attack!

2008-06-13T00:11:00.000-07:00

Graduation

2008-06-12T22:25:00.000-07:00

It’s been a long time. I’ve been super busy but luckily Amy stepped in and posted a couple of times. So much has happened lately. The boys graduated from preschool. They had a pretty elaborate ceremony where they sung a bunch of songs and they covered a lot of the subjects they learned this year. Below are pictures from the graduation.

Blake's favorite thing about his preschool gratduation, was "being in front of all the people"

This is Blake and Derek with their amazing preschool teacher Mrs. Cathie.

They miss her already!

Fox Family Freak Show Hits The Road!

2008-06-04T23:40:00.000-07:00

We took our little circus on the road last weekend on our first family vacation with four kids four and under. We went to Boise, Idaho to see our friends the Popes. It was so fun to be out of the house and doing things together with family and friends.

I am thrilled to say that traveling with everyone was fairly uneventful. The babies behaved themselves remarkably well in the van. They slept, ate and played on the way there and I don’t remember any fussing or crying at all. (I was starting to think we should spend every day traveling!). There were some pretty crazy moments trying to keep the babies fed along the way.

They were angels while we were there too - and what baby wouldn’t be with five extra people giving them constant attention. We had a great time while we were there just hanging out. Their son Jacob was baptized on Saturday and it was such a special day. He is such a great example. The ride home wasn’t quite as smooth, but still relatively uneventful. All of the stopping along the way added a couple of hours to the trip, which was definitely rough on the boys. The first time Blake asked if we were there yet was when we had barely gotten to Pleasant Grove (about 10 minutes from our house). I wish I could say it got better.........

We couldn't leave home without video games, so we brought Rock Band to play. Although everone enjoyed it, I think Katelyn may be the one who had the most fun. I will try to get some cute video of her rocking out up later.

Derek & Blake's Unbirthday

2008-05-20T15:12:00.000-07:00

Today was Derek and Blake's Unbirthday at preschool. They were so excited and I was supposed to go in and thell their classmates about them and show some pictures and all that jazz. Brent had arranged to sit in the van with the babies, but when we got there Blake and Derek wanted to show thier brother and sister more than anything else. They desperately wanted to bring them in and even though I had picutres, it just wasn't going to be enough. So we took them in and all the kids were pretty excited, but one of their classmates turned to Derek and said why does your brother have glasses. Derek looked at him, a little confused, and said "So he can see things better, especially things far away," with a tone that said it was a pretty silly question! Way to go Derek!

Chopped My Hair

2008-05-20T14:41:00.000-07:00

I cut off all my hair last week and am donating it to Locks of Love. I am getting used to it, but it is taking some time! I have NEVER had it so short, but it is certainly harder for the babies to get ahold of now and it is a much needed change.

What's Been Going On - Part II

2008-05-19T20:59:00.000-07:00

Things have been busy and so we haven't posted in a while, but there is so much to say. Mother's Day was great. Blake and Derek gave me a brush and a mirror that they picked out themselves :D It was also the first day that the whole Fox clan has ventured to church. It was wonderful to be able to be there together as a family. It was the best Mother's Day present! The babies were great. Brandon took his bottle in the first 30 minutes or so and then slept the whole time. Katelyn got a little rambunctious in Relief Society (the women's meeting), but I think it was mainly because she was sitting at the back of a room full of women and they weren't all looking at her. She was so loud just letting out these squeals and yells.

We've been venturing out a lot more and it sure does feel good to be able to do things. We attract a lot of attention wherever we go. We have the twins thing, then with Brandon's glasses and if he is asleep we have his oxygen too. What a spectacle!

We saw the pediatric surgeon Thursday afternoon. We agreed to do his surgery later this summer. Hopefully he will be off oxygen and will just be even bigger and stronger. He said these inguinal hernias just don't go away. They can be mistaken for other things, but he looked back in his notes and he saw Brandon's with his own eyes, so he definitely has at least one. We will be calling this week to get him on the schedule.

What's been going on

2008-05-19T08:42:00.000-07:00

Just a cold

2008-05-08T23:04:00.000-07:00

The good news is that Brandon just had a common cold. Both Brandon and Katelyn are getting much better. They are both still small. Katelyn is particularly petite but very cute and full of energy.

Cancelled Again

2008-05-05T08:53:00.000-07:00

Once again Brandon is sick and we had to cancel his surgery. Both Katelyn and Brandon have been getting sick for a while now. We were worried about him being sick again for his surgery but we had hoped that he would improve. Instead, he got much worse. Yesterday afternoon, not only was he coughing a lot but he was wheezing and his oxygen needs where way up. Amy called the pediatrician and he wanted to see Brandon right away. They gave him some medication that seemed to help. The doctor wrote a prescription and ordered a nebulizer for us. He also sent Amy down to the hospital to have a couple of tests done. Brandon had a chest x-ray that seemed good. They assume that his problem is asthma. This shouldn’t come as a surprise. We know he has week lungs and Blake has a little asthma. We are still waiting for one more test that should come back sometime today that should tell us if his sickness is something to really worry about or not.

By the time Amy and Brandon got home it was really late. We ate a late dinner and got the kids ready for bed. By the time we were ready to run the pharmacy and fill Brandon’s prescription the only place open was the 24hr. pharmacy across town. He was doing fine and it wasn’t too long ago that he received a good dose at the Doctor’s office so we decided to wait until morning. That turned out to be an unwise decision. About 4:30 this morning I was off to the pharmacy. Needless to say we are both pretty tired this morning.

They are still very sick but both babies seem to be breathing much better this morning. Katelyn went to the dermatologist today and got another shot on her lip. The dermatologist is slowly raising the dosage each time and watching to see how her lip reacts. Hopefully we will get even better results this time.

Surgery Update & Prayer Request

2008-05-02T14:55:00.000-07:00

So Brandon is still getting over his cold, but we talked to the OR today and they said without fever and at the end of a cold they might go ahead and that we'll just need to come in for surgery (we check in at 10:15 am on Monday) and they will make the final determination during his pre-op check. So this is a mother's plea for prayer - please pray that he will be well enough for surgery and a speedy recovery if he still needs it (yes we are still holding out a small hope for another miracle - that he won't need this surgery at all). We know that the power of prayer is real and we have seen first hand the results of so many answered prayers. So please pray for our little Brandon one more time. We want this surgery and another hospital visit behind us, but not at the risk of him having post-op trouble. Thank you to all of you who care about our family and pray for us. We appreciate it more than words can say.

Getting Out

2008-04-27T23:18:00.000-07:00

Ok, these hats may be a little big

Blake took this photo

Brandon and Katelyn both went in for their nine month check up the other day. They are both doing well. Katelyn is developmentally at or beyond expectations for her adjusted age (6months). Brandon might be a little behind but he is making great progress and certainly not falling behind. They still are small but doing well. Both of them are surprisingly social. We hear this reaction from many of the different health care providers. Brandon often seems more interested in the people in the room than the toys around him. Katelyn kept surprising the doctor with her strength. In fact, he mentioned it several times with increasing surprise in his voice.

Last night we tried something a little crazy. We’ve been keeping the babies away from public places. We should be able to take them out very soon but we haven’t really done it yet. A small local theatre was performing the Pirates of Penzance. Derek’s favorite movie is Star Wars (any episode we will let him watch) followed closely by the Pirates of Penzance. We found a night when the attendance would be low because of the Jazz game. We called and they let us come with the babies. We sat in an empty section in the back. I was very nervous that things would go terribly wrong. Luckily it all worked out fine.

The boys seemed to really like the play, especially when they pulled out the light sabers as a gag. They got a little antsy in the middle but the en d was action packed and kept them very engaged. The babies behaved surprisingly well. We made a couple of trips to the bathroom and had a diaper change. We even fed them rice cereal during the show. They made a little noise but not enough to disturb anyone and it never seemed to happen in the quite times in the show.

We had another interesting Blake and Derek event. A while ago, Amy let them go outside and play with some of the neighbor kids. A few minutes later they came home with a bunch of treats in their hands. We asked them where they got them and they said the neighbors gave them the treats. When we pried a little and they explained that after they passed up the kids in the yard to knock on the door, they told them that they didn’t have any food or money. As you can imagine we were pretty embarrassed. We made them go back and apologize. The problem is that it worked. They have learned they can get a lot with a smile. We are going to have to work hard to make sure that they don’t become the annoying kids on the block who go around working the neighbors.

Video

2008-04-17T23:19:00.000-07:00

I promise to post more videos soon but here are our first videos on this blog. The sound isn't great because they were taken with our camera and not our video camera.

We feel good about our choice to postpone Brandon's operation. Most of the time both Brandon and Katelyn only have runny noses and they don’t show any other signs of being sick. However Katelyn had some real trouble keeping food down. It is amazing how much food that can come out of such a little body. The good news is that after she was done clearing out her system she seemed to be as happy as could be. Brandon hasn’t had as much trouble but he did have enough to let us know he really is sick.

Change of Plans

2008-04-16T09:52:00.000-07:00

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

2008-04-15T22:58:00.000-07:00

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

2008-04-09T19:53:00.001-07:00

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

2008-04-06T11:16:00.000-07:00

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

2008-03-25T23:06:00.000-07:00

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

2008-03-18T00:18:00.000-07:00

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!

2008-03-10T17:57:00.000-07:00

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

2008-03-04T22:33:00.000-08:00

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.

I’m back

2008-02-24T22:59:00.000-08:00

I got home from my trip early Saturday morning. Because my plane was re-routed, I climbed into bed just before 5:00 a.m. It is really good to be home. Unfortunately Brandon and Katelyn haven’t gotten much bigger while I was gone but I certainly can see developmental progress. They both seem to be better at everything.

While I was gone Brandon had another incident where his heart started racing. The technical term for this is called tachycardia. When it happened before the one thing the doctors told us would be helpful is to catch it on a EKG. Amy called me when it happened and she raced over to the closest hospital emergency room.

Sadly, the choice of hospitals may not have been good. They were very nice and immediately rushed them in. The first sign of trouble came when the man administering the test said that he had never done it on a baby but told Amy not to worry because he had the manual. We have seen this done several times and his placement of the leads was very different than anything we had seen before. He was still able to catch the tachycardia but as soon as he did, he took all the monitors off. The problem is that the doctors really wanted to watch it over a period of time and in particular, see how it ended. He explained that they couldn’t monitor him continuously when he was only checked in as an outpatient and also mentioned that if the doctors saw a continuous problem they would immediately throw him in and ambulance and send him to another hospital because they weren’t equipped to handle it. Needless to say, we didn’t get much information from this trip to the ER.

It can be a concern but the doctors don’t seem overly worried. They have an idea of what is hapening but they would need to see better test results to know. We will keep watching him and see if it happens again. The most disturbing thing is that to help stop it next time, they told us to put a bag of ice on the bridge of his nose and across his face and hold it there for 20-30 seconds. I really hope it doesn’t happen again!

Another interesting incident happened while I was gone. Blake and Derek like playing around on the computer and lately have started doing it when we aren’t around. They got on Amazon (the web browser was left open) and ordered $57 worth of videos. I must say that I’m very impressed with Amazon’s interface. While they recognize letters, they certainly don’t read. I’m also pretty sure that they haven’t watched either Amy or I order anything online. However, they managed to order the movies that they wanted. They also knew what they were doing and clearly explained afterward that they ordered movies and they knew what they had ordered. Amy was able to straighten it out but we are obviously going to be a lot more careful in the future.

Rolling, Rolling, Rolling....

2008-02-18T21:47:00.001-08:00

I know this picture doesn't go with the post, but

there won't be any new pictures until Brent comes home.

Today Brandon rolled over. Althought Derek was the only one that saw him do it, I think his description was pretty acurate. He ran in the kitchen and told me that he saw Brandon roll over and then he got really mad so Derek rolled him to his back and that made him mad too! Every milestone with Brandon and with Katelyn are just so exciting. I thought I would feel differently about looking at everything in terms of their adjusted age, but I find that I don't pay attention to any age. They are just on thier own schedules and we are thrilled with each and every development.

Emergency room

2008-02-17T09:46:00.000-08:00

I’m on my way to a conference for a week so I will see if I can get Amy to update the Blog while I’m gone. My Mommy and Daddy are in town to help out while I'm gone.

Last Tuesday we spent another night in the emergency room. After the boys had gone to bed we were feeding Brandon and his heart began to race. The only way we would have known is because of the monitors. He seemed like everything else was OK. Just to double check we hooked up the second monitor, that we usually only use when he is sleeping, and it registered the same fast heart rate. We called the doctor and he suggested that we take him down to the emergency room.

Luckily my cousin and his wife live near by. We called and she came over and slept at our house so we could leave the boys asleep. We drove up to Salt Lake just in case they would need to admit him. The short story is that they ran a couple of tests. Watched him for a couple of hours and didn’t find anything wrong. The episode only lasted about a half hour (ending about the time we left for the hospital) and nothing like it has happened again. We will just have to watch him closely and hope it doesn’t happen again. The rough part for us is that I climbed into bed about 5:00 the next morning.

7 months

2008-02-11T22:33:00.000-08:00

Yesterday was the 10th and so Brandon and Katelyn are now 7 months old. It's still weird to think about how old they are. Thier adjusted age is only 4 months old and they are still really small for 4 month old babies.

I guess the lack of sleep is getting to us. We find ourselves falling a sleep a lot. This can cause problems …

A couple of days ago Amy was feeding the babies. The boys had gone to bed and after the babies had finished eating they had all fallen asleep. I had also fallen a sleep sitting on the couch but I was the first to wake up an hour or so later. I finally got my chance to clean up after dinner. I began to prepare a bottle for the next feeding. I boiled some water to sterilize the bottle. I prepared and fortified the milk. I then unsuccessfully tried to wake Amy up. We still had more than an hour until our next feeding so I decided to go upstairs and get something done. I would come down and wake them up when it was time for the babies to eat. I must have fallen asleep.

Amy woke up about 2:00 a.m. She still had both babies on her lap and the room was filled with smoke. She had no idea what was going on so she scooped up the babies and headed upstairs. Because Brandon is attached to monitors it makes this even more difficult than just carrying two babies upstairs. On her way up she was shouting for me but it took a while to actually wake me up. Once I woke up and she explained why she was in such a panic, I immediately guessed why the room was filled with smoke. I had forgotten to turn off the oven that was heating the boiling water.

I opened the doors and turned on the fans. It smelled pretty bad. It took a while to clear out the smoke and the smell. The picture below is what remained of the bottle. Yes, that stuff at the bottom was at one time, a bottle. The next problem was that we only had one of these bottles and it had been the only one that worked really well for Brandon. Amy headed out in the middle of the night to Wal-Mart to find a replacement. Needles to say I have found other ways to clean a bottle and get it sterile for feeding. No more water boiling for me.

This sad part about this story is that we did something very, very similar when Blake and Derek were babies. I can hear the alarm now. It's time for another feeding so I guess I'd better wrap this post up.

Photos

2008-02-08T08:02:00.000-08:00

Long time - no post

2008-02-08T03:10:00.000-08:00

As always, it has been a busy week (well almost two) and I wish that I had posted more often. In addition to the usual craziness I have been very busy at work. Unfortunately this means that Amy is left to take care of even more stuff at home. I actually started writing this post almost a week ago but I never finish. Instead, I just modify it and add to it.

When I think back last week was a productive week, especially for Brandon. Early last week Brandon again pulled his NG tube in the middle of the night. It had been hard to fit the tube down his swollen nose on the last couple of times so we decided to leave it out and just do oral feedings. We called the doctor the next day and talked it over. He hasn’t had an NG tube since. We hope that we are done and we won't ever have to shove one in his nose again.I always felt like I was participating in a torture scene from "24" every time I had to stick it down his nose again.

Brandon eats really well most of the time. Every so often he has a bad feeding or two but he nurses really well and while Katelyn won’t touch a bottle, Brandon often does extremely well with a bottle. We give him a bottle a couple of times a day. The biggest problem with Brandon is that he is still very fussy a lot of the time. It’s hard to know exactly what is causing the problem but he does a lot of crying. He has a lot of gas. We found out today that both Brandon and Katelyn are positive for C-Diff still so this could be one contributing factor to Brandon’s crying.

Brandon had an appointment with the pediatric surgeon last week. He evaluated him and decided that he is ready to have his hernia repaired any time. We are a little hesitant to do it right away. The hospitals are overflowing with kids with RSV. It is particularly bad this year. We talked to many nurses and parents who have taken their babies in for a simple procedure and have stayed for weeks because they caught RSV in the hospital. In the ideal situation Brandon would only have to stay overnight, but they will reserve a bed in the Pediatric ICU for him because of his history. Right now we plan on waiting a while for the season to taper off a bit before we have the operation done. The one thing that makes us even consider having the repair done soon is that the surgeon explained that, even thought the standard answer is that the hernia wont effect his crankiness, he said that it is also surprising how many parents with fussy babies report a big change after a hernia repair. However, we think that that it is worth the wait to avoid a potentially life-threatening problem.

Before his appointment with the surgeon we dropped by the perinatologist’s office. These are the doctors that gave Brandon and Katelyn blood transfusions while they where still in the womb. We had grown pretty attached to these doctors during our appointments. We would go several times a week and we spent many hours with them in the operating room during the transfusions. One of these doctors was the one who actually delivered Brandon and Katelyn. Visiting them is a great reminder of how far we have come. It is strange for them ask how things are going and have them expect for us to talk about all of the current problems that Brandon and Katelyn are having. The great thing is that the only thing we can say is that they are doing great and Brandon is wearing glasses. It is very surprising to everyone how we have beaten the odds in so many ways.

Brandon made some great progress recently on his developmental milestones. He has gotten a lot better at reaching for things and interacting with people. When he’s in a good mood he is very fun to play with. He really likes to “talk” and he makes a lot sounds that almost sound like laughs. He is also a big sucker for kisses. A kiss on the check often results in a big smile. An ocupational therapists came in and looked at Brandon yesterday. There are a couple of things we need to help him with but for the most part he is right on track for his adjusted age. They are approaching 7 months, making their adjusted age nearly 4 months.

Both Brandon and Katelyn weight gain has been a concern. They are both gaining some weight and the Doctor doesn’t seem overly concerned but it is something that we watch closely. This means that even though they might sleep through the night without us disturbing them we still wake them up to eat every 3-4 hours and we are always trying to get them to eat as much as possible. We add a special formula to Brandon's bottles to make sure that he gets the max amount of calories possible. We weight them often but we always to do it in grams so I’m never sure of how much the weight in pounds and ounces. If I remember correctly a couple of days ago Brandon was 10 lbs. 5oz. and Katelyn is just a little smaller.

Katelyn is also doing really well. She is incredibly outgoing and often very happy. She likes to test out her voice and lets out loud squeals often. She has also learned how to demand things so when she wants attention she lets out yells that sound a lot like she is clearing her throat. During Brandon’s visit with the surgeon she must have felt left out because she kept interrupting with her squeals. She was loud enough that we had to stop and pay her some attention but as soon as we did, she instantly calmed down and smiled. I think we are in trouble for a long time to come.

For those of you who read this from outside of Utah, we have had a lot of snow in the last month. It appears that we will get a break this week but for a while it seemed like it wouldn’t ever stop. This heavy amount has caused many of the deer to come out of the mountains looking for food. I have taken Blake in Derek around the neighborhood in search of deer several times lately. It has been surprising how easy it is to find them. In fact, we often have a group of deer that hang out in our back yard for hours at a time at night. They like hiding under our trampoline and although I have never seen them actually jumping, they have no problem clearing our six foot chain link fence that is also surrounded by shrubs.

I have picutres and video that I plan on posting really soon.

Long nights

2008-01-27T09:24:00.000-08:00

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.

Still busy

2008-01-21T16:07:00.000-08:00

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.

Glasses debut

2008-01-13T23:33:00.001-08:00

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.

More photos

2008-01-11T08:07:00.000-08:00

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.

Yummy!

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.

6 months full of blessings

2008-01-10T04:36:00.000-08:00

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.

Photos and an update

2008-01-04T16:59:00.001-08:00

Katelyn taking a bath. (No tubes!)

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.

Happy New Year!

2007-12-31T11:29:00.000-08:00

I finally got my computer running smoothly again so I can now post from home. It has been pretty crazy but we are starting to get the hang of things and I feel slightly more under control. While things are much better it is still amazing how buys it can keep us. For example, I calculated that we use somewhere in the neighborhood of 45 syringes, of various sizes, in a 24 hour period. This means that if we are too tired to wash them one night, the next night we have about 90 to clean. Needless to say we have a lot of medical supplies and they take up a lot of space.

We got a call from the doctor shortly after my last post. He gave us the results of Katelyn’s oxygen study and she is now completely off of the oxygen. It is so much easier to move around the house now. At first it was strange to see her face without the canula attached. It was like seeing someone who you have never seen without glasses for the first time without glasses. She is as cute and feisty as ever. Her smile is very charming and she smiles often. She still isn’t growing as fast as the doctors would like but there isn’t any real cause for alarm. She is still on a handful of medications but other than that she is doing well. Of course, although she is five and a half months old, she is acting like her adjusted age of two and a half months. She seems to be doing all of the things she should be doing at her adjusted age.

We had to replace Brandon’s NG tube 6 times (3 times a piece) in the first 4 days he was home. They can last anywhere from 10-14 days, if he doesn’t pull them out. We’ve tried to really tape it down well this time and so far it has lasted a lot longer. I hope it lasts because he replacing it so often seems to really have irritated his nose. His nose was a little bloody after the last couple of tube replacements. He has also been a little congested and this affects his ability to breathe. Because of this congestion his oxygen needs have gone up a bit lately over the last couple of days. However, today we to a replacement for his tank and he seems less congested. We were able to turn down his oxygen a bit more. He is eating really well in general, much better than he has every done. He still has ups and downs and we have a while before we won’t have to use the NG tube. He certainly has a different personality than Katelyn. He seems much gentler and less feisty. You can even hear the difference in the sound of their cries.

Wow! This is crazy

2007-12-27T16:36:00.000-08:00

This is my house. Take that!

We are sooo excited to have Brandon home. He has done really well. He really seems to enjoy the attention and extra stimulation. He hasn’t been out of a hospital room for almost six months. He opens his eyes really wide and looks around at everything. He really seems to enjoy the attention, both from his parents and from his brothers. He hasn’t fixed his eating problems overnight but he has done really well in general and it appears to be really good for him to be home.

However, even with this happiness and excitement we feel very overwhelmed. My Birthday was on Christmas. I planned on eating cheese cake instead of a birthday cake. (I like cheesecake much better). We have one in the freezer and I still haven’t found time to take a bite. I’ll give it another shot tonight.

Christmas evening was like a scene out of a movie. It was so crazy and stressful I think you would’ve had to seen it to believe it. The afternoon went great, but by evening the boys were running around yelling and screaming. We had to wade through a sea of wrapping paper and toys. We didn’t really get that many gifts but it is amazing how much space toys and junk can take when everything is taken out of the box. A nurse showed up to help us learn how to use some of the equipment. Katelyn was crying because she was tired. Brandon was crying because he was hungry. They both needed medication. I was holding both babies trying to listen to the instructions. Amy was listening while preparing the medication. The alarms on the monitors kept going off and we had to determine which baby they where attached to. We kept tangling the massive pile of tubing and cables in knots. I think the highlight was when, as the nurse was talking over this ruckus, Amy shot me in the head with some of Brandon’s medication. I’m pretty sure that the nurse was happy to get out of there when she was done.

Brandon quickly pulled out his NG tube in the middle of the night last night so I got to place my first tube without a nurse around. It made me pretty nervous and it was even more worrisome because he pulled the tube during a feeding. This left milk in his nose that of course caused some breathing difficulties. For a while we were pretty worried. By morning he was still had noisy breathing but a quick suction took care of the problem.

It’s continued to be crazy but Amy is amazing. She is working hard to get organized. We are getting smarter and filling syringes with medication for the entire day. We are mixing large daily rationings of food for Brandon and dividing it up into feeding size proportions. Amy has made a chart to track what needs to happen and mark when it has happened. We are going to make it, but it certainly won’t be easy.

In addition to the baby responsibilities it seems like other problems keep popping up. Our garage door has become finicky and doesn’t want to open all of the time. The dish washer seems to be following the garage door’s example. We got some plastic stuck in the garbage disposal and this morning I was in the attic checking to see if our roof was leaking. Our computer also seems to by dieing. We have somehow seemed to handle all of these problems but needless to say, our house isn’t looking as clean as I would like.

Even with all of this stress, it is all worth while when we realize that we have both of our new babies home and they are doing so well. At the doctor’s appointment today he told us about his conversation with the nurse that help revive Brandon shortly after his birth. We were reminded of what bad shape he was in and how lucky we are to have him at all.

On Christmas, before the mayhem broke loose, I was planning on writing a deep and contemplative Blog post about how grateful we are. I guess I will save that post for later…

I’ll be home for Christmas…

2007-12-23T21:44:00.000-08:00

It’s official. Unless something goes wrong, and we know it easily could, Brandon is coming home Christmas day. It’s extra funny because my Birthday is Dec. 25th and Katelyn came home on Amy’s birthday in October. This will make Brandon’s total stay in the NICU around 5 and a half months.

Let me start by telling you about Katleyn. She is doing really well. We gave her the overnight room-air trial several days ago but the doctor hasn’t looked over the data that is recorded on the saturation monitor to let us know how she did. We hope that he will get a chance to evaluate it tomorrow and let us know if we can take her off of he oxygen. It was kind of strange to see her for so long without a tube stuck to her face. She is sleeping really well through the night. She sleeps very deeply and every once in a while, her apnea monitor goes off. A little stirring seems to do the trick but it makes me want to keep the monitor for a long time. Katelyn is becoming very social. She smiles a lot and she will spend long periods of time trying to talk back to us. She seems to quickly charm everyone with whom she comes in contact.

Brandon is also becoming more social. It seems like getting rid of the morphine is really helping him. He also does a lot of smiling and he is very cute. While he certainly can be demanding, he seems much more calm and sweet than Katelyn. It makes me wonder what this means for our future.

Brandon’s feeding is improving but he is not any where near being able to eat full meals on his own. What this means for us is that we will have to continue to feed him through a tube until he is able to eat on his own. It also means that we will need a lot more medical equipment. For Katelyn we have oxygen tanks and the apnea monitor that tells alarms if her heart rate or breathing rate falls out of the normal range. In addition to these things, we will need a pulse oximeter (to tell us the oxygen saturation levels in his blood/how well he is breathing), a pediatric scale to measure how much he is eating when he is nursing and a pump to push down his feedings smoothly over the correct period of time. We are really just moving the NICU to our house.

In addition to equipment we also needed to get training. We needed to learn how to use all of the equipment. Amy and I also had to learn how to pass a tube down Brandon’s nose and into his stomach. We’d seen this done often and but this worried me a lot. Of course, just before we had to do learn how to do this, a nurse told us a bunch of horror stories about what can go wrong. I actually ran into some troubles on my first shot. It wasn’t because I didn’t know what I was doing so it was actually nice to run into problems with a nurse there rather than having this happen at home. It will still take me a while to totally feel at ease, but I can do it now. While we have high hopes that his eating will quickly improve when he is home, there are some advantages to using this tube. For example, we can check and see how full he is before we feed him and if he has gas, we can just pull out all of the extra air. Quick and easy burping.

I’ve learned a lot and they often joke about giving parents honorary nursing degrees after they’ve had a baby in the NICU for a certain amount of time. However, Amy has really learned an exceptional amount. She does a much better job at remembering the names of all of the medications and what they do. While I forget the name of anything I can’t spell. The other day, Amy was visiting Brandon. The nurse that was taking car of Brandon was a more experienced nurse and she often helps the other nurses. Another nurse came in the room and asked if Brandon’s nurse could help her change an ostomy bag. Brandon’s nurse was taking care of two babies and said she couldn’t but she volunteered Amy. “She knows all about ostomy bags.” Amy went to help and it turned out that she actually had some good tips and tricks that she had learned up at Primary Children’s that she was able to share. Because they don’t have a surgeon at UVRMC they don’t often have babies with an ostomy bag.

I’m often reminded that we are really lucky. I don’t think we have any idea how many bullets we have dodged. The other day when Brandon passed his hearing test one of the nurses told us how amazing it was because he had been exposed to so many antibiotics. We didn’t even know that this was a possible side effect of getting so much antibiotic exposure.

It’s beginning to look a lot like (after) Christmas

2007-12-19T09:28:00.000-08:00

Katelyn is doing well and Amy tells me she is quite the celebrity at the dermatologist’s office. They even took some pictures during her visit today and gave us copies. (I will scan them and post them soon.) She wore a reindeer outfit today that was pretty cute. Here lip is progressing quite well and everyone is very optimistic. We will get a monitor that measures the oxygen saturation in her blood today. She has been doing really well on her last couple of tests without oxygen so we are going to take her off of her oxygen and watch this monitor for a day. If this room air trial goes well, we will be able to take the tubing away for good.

Brandon has officially passed Katleyn in weight. Katelyn weighed in at 8lbs. 8oz. yesterday and Brandon was 8lbs. and 9oz. a couple of days ago. It is still going to take a while to get Brandon home. I have resigned myself to the fact that it may be closer to a full six months stay in the NICU (Jan10th) before he can come home. He is doing well but with the current weaning schedule he won’t be completely off of his medication until December 23. He has shown some good progress in the last couple of days. His average intake when nursing or taking a bottle has jumped from 10-15 up to 20-35. His full feeding is around 70 ml. so he still isn’t near a full feeding but we are happy to see progress. He also isn’t consistent. He often gets tired and we have been advised not to push him and make it a bad experience.

Our "plan" is really a goal

2007-12-12T22:45:00.000-08:00

I have learned in the last couple of days is that our "home by Christmas plan" is really just a goal. Brandon has been off and on for his feedings but even more troublesome is that he isn’t doing well with his morphine wean. He is getting pretty irritable and not eating well. They may have to go slower than we had hoped. It’s only been a couple of days but it certainly makes me doubt if he will be home for Christmas. Amy and I have also suspected that the morphine has a big effect on his willingness to eat. We keep hoping that once he is off of the morphine his eating will improve.

I finally tricked Katelyn into taking a whole bottle. It has been a while since she has been willing to eat much from a bottle but she has been eating a lot when she is nursed. This morning I was trying the bottle without much luck. Amy was feeding Brandon so she didn’t have many options. She still resisted and finally fell asleep. She stirred about a half hour later and I tried again. She wasn’t fully awake so I don’t think she noticed it was actually a bottle. She sucked the whole thing down in a couple of minutes.

We slipped Katelyn into the hallway at UVRMC the other night to get some photos.

Danger: Keep Away

2007-12-11T00:15:00.000-08:00

We've been bad about taking pictures this week. This will be the second post without any pictures and I promise to work harder to take more soon.

One of the big challenges we are going to have over the next 5-6 months is keeping Brandon and Katelyn healthy. We need to keep both of them out of public places and fairly isolated during this time. While this is a common recommendation for many newborns during the winter months, it’s especially important for these two little ones.

They both have a weakened immune system and very damaged lungs (that hopefully will get better over time). A common cold could put them back in the hospital and even has the potential to be fatal. We have seen what a standard infection can do to them and it is pretty scary. We all wash our hands often and we have a lot of antibacterial lotion all over the house. The boys know it as “magic soap”.

One of the most difficult things is to explain this to everyone is that they need to keep their distance. We often have to fend off strangers. It is pretty amazing how much attention a baby can attract when we take her somewhere like a doctor’s appointment or anywhere public. Everyone wants to see and even strangers want to touch the blankets and some even want to hold her hand. We are working on ways to tactfully ask them to stay away without sounding mean.

It's even harder with family and friends. Brandon and Katelyn are both so cute and we really want to show them off but we know it is much wiser to wait. It’s even harder to find a way to tell a good friend or neighbor to keep their distance. We’ve been considering making a sing to put on her car seat that says “Danger: Keep Away” but I’m not sure how effective it will be. We noticed that a common tactic used by the nurses in the hospital was to write notes as if they are from the baby when they want to leave directions for everyone else. This way it seems a little friendlier than the nurses telling them to stay away or not to wake them when they are sleeping. We might try that too and see if it works.

Happy Birthday

2007-12-11T00:14:00.001-08:00

Today was Brandon and Katelyn’s 5 month Birthday. (Technically it was yesterday because I’m writing this after midnight). We’ve been busy and it’s been a while since I posted.

Katelyn is doing well. She is growing and become more and more active all of the time. She still hasn’t changed her mind on the bottle. She won’t have a thing to do with it, but it doesn’t mean that I won’t quit. Every once in a while she surprises me and takes a lot but it has been a while since she has done that. She has learned to sleep through the night on some nights so our sleep is getting a little better. She has had several dermatologist appointments and both the doctors reassured us that her hemagioma will most likely go away on it’s own and even if it does leave a little scaring, it won’t be anything that can’t be fixed.

Brandon is very healthy and he is also doing well. His main challenge is eating. He had nursed a little before his operation, but after a month of not nursing it was like starting over again and he didn’t take off as quickly as we had hoped. A full feeding for Brandon would be somewhere between 60 and 70. Both nursing and with the bottle he has been doing as poorly as 4-15. He just gets tired and quits or seems to have no interest. After trying to give him a bottle or nurse for more than a half hour we just have to quit and let him be fed through a tube.

The good news is that in the last couple of days he seems to be improving. In fact, tonight he took a record 47! This isn’t even close to a full feeding but at least he is going the right direction. Amy talked with the doctors and nurses about how soon we can get him home. Because of the fear of withdrawal, they need to wean his morphine very slowly. The current weaning schedule will be complete in 10-15 days depending on how he reacts. He may not be eating well enough at that point but we are going to start learning how to insert the tube and remove the tube so that we can take him home even if he isn’t completely ready to eat on his own. With this in mind, we have a good chance of having him home for Christmas. Katelyn came home on Amy’s birthday and Brandon may come home on my birthday.

We feel like Brandon just needs to be home. His head is getting flat and he really needs a chance to roll around and lift his head more often. While the nurses are great, there is only so much they can do to help with his normal development. There is also the fear of him getting sick while in the hospital. We have learned that hospitals are rather dangerous places and getting sick could be very dangerous for both Brandon and Katleyn.

We now have a plan for getting Brandon home!

Super Cute

2007-12-04T06:24:00.000-08:00

One of the nurses took a very cute picture of Brandon the other day. We also finally got a decent picture of Katelyn smiling. She smiles a lot but he delay on the camera can makes it hard to capture in a photo.

Brandon is doing well in back at UVRMC. The best thing is that his oxygen has been able to be reduced quite a bit. Yesterday, the results from his Blood-Gas test were the best they had ever been. This means that he is breathing well and in particular' exhaling the carbon monoxide well. We have continued to work on getting Brandon to nurse. He hasn’t done a stellar job. He does OK at times but he also has feedings where he doesn’t eat much. There are a lot different things that can play a part in his progress. They are still finishing weaning him from his pain medications. This can take a while and can often cause difficulties in nursing. The nurses also believe that some of the noises in the NICU may cause a distraction so they moved him to a private room to see if it would help. Amy continues to nurse him four times a day. While this is still difficult, it is certainly much better now that he is close to home.

Katelyn is also doing well. She is getting much better at sleeping for long periods during the night. She also seems to sleep very deeply. This can be scary for me when I see her so asleep that it takes a lot to make her stir. When she sleeps so deeply sometimes the monitor doesn’t pick up her breathing as well and it sets off alarms. I glad we have the monitor but when it goes off, even if I can tell there isn’t a problem, it can still cause me to jump. She weighed 8 lbs. last week. Even thought this is very tiny for a baby that is almost five months old, I have to remember that she is a lot more than 4 times her birth weight. She is also gaining weight really well now. She still hates bottles.

Close to home

2007-11-29T00:04:00.001-08:00

We spent the weekend at the Ronald McDonald House near Primary Children’s in SLC. It turned out to be very helpful. Amy was nursing Brandon 4 times a day and taking care of Katelyn in between. We had big plans to do a lot of fun stuff when we were up in Salt Lake but we were busier than we expected. However, we did get a chance to go to the children’s museum. The Ronald McDonald house is great. The rooms were pretty modest but they had a lot of entertainment. They had big screen TV’s on every floor, a game room in the basement, movies to check out and watch, free passes to the zoo and museums, They had a large kitchen with a completely stocked refrigerator and every evening a new group came in and cooked dinner. It made our life much easier last weekend.

We have been talking about it for a while but it is finally real. On Monday they did an echocardiogram on Brandon and determined that he was doing well enough to send him back to Utah Valley. It took a while to figure out all of the details but Tuesday morning we packed him up and he was back-transported via ambulance. The great part is that as they wheeled him to the ambulance we all were able to meet in the hall. We got a chance to take our first family picture with all of us in one place. This alone was almost worth the transfer. It was hard to leave behind so many nurses and doctors who have loved and cared for Brandon. The nice thing is that returning to UVRMC is a lot like going home. We felt very welcome. Even the security guards remember who we are and asked how Katelyn was doing.

Thanksgiving 911

2007-11-28T14:47:00.000-08:00

I posted to the blog in the morning but the rest of the day didn’t go so smooth...

Amy went to feed Brandon up in Salt Lake. She had taken care of a lot of the Thanksgiving Day preparation but I was left to finish up. Amy left a glass pan full of the stuffing sitting on the stove waiting to be cooked in the oven. I turned on the stove to boil water for the potatoes but I accidentally turned on the wrong burner. I don’t know if you know this or not but, when heated on a burner, those things explode. This was quite a pain to clean up but that still wasn’t the most eventful part of the day.

Just as we were getting ready to eat Thanksgiving dinner, Amy came down the stairs and noticed that the water used to humidify Katelyn’s oxygen had been turned over. Amy turned it back but didn’t think much of it. The problem is that she carried Katelyn from upstairs to downstairs. We put Katelyn in her swing and began to get ready to eat. Gravity took over the water that was sitting in the tube began to drown her. Luckily Amy was paying attention and noticed her gasping for air and flailing around. By the time we ripped off her cannula she a lot of water had gone down her nose. I instantly turned her upside down and tried to get the water to come out. After a couple of seconds it was apparent that she wasn’t breathing. Amy went to call 911 while I kept trying to get the water out.

She kept getting worse and she began to turn very blue. It was VERY, VERY scary. I knew they couldn’t get there in time. After somewhere between 30 seconds to a minute she began to regain color and seem to begin breathing again. Luckily she never passed out and I didn’t have to actually start breathing for her. Once she seemed to have cleared most of the water, we grabed a new, dry cannula and cranked up her oxygen. By the time the paramedics arrived she was doing pretty well. They stayed and monitored her for a while and everything seemed good. They didn't take her away, but they suggested we call her doctor and get her checked out. We made several calls and everyone just said to watch her closely.

After dinner she seemed to have developed a pig-like grunt when she breathed. She also seemed to have trouble nursing. We were on our way up to Salt Lake so we quickly packed everything up and took her directly to Primary Children’s emergency room. When we got to the emergency room she was really squeaking when she breathed. She needed her oxygen turned up and her chest X-ray was a little fuzzy. It was hard for them to know if the X-ray was a problem. Because she has lung problems they didn’t have any idea what normal was for her. The decided it would be best to admit her overnight.

Amy spent the night with her. She ran back and forth all night between feeding Brandon and Katelyn. By morning she was doing so well that they had taken her completely off of oxygen for 10 hours and she was doing fine. They released her by the afternoon.. However, our pediatrician was fearful of taking her off of the oxygen at home, because her oxygen needs could still fluctuate quite a bit. Her grunting remained for a couple of days.

One funny note is that when Katelyn was being admitted, the doctor stopped Amy as she explained Katelyn’s situation and asked her what her medical background was. The nurse explained that she was just a NICU mom. We know just enough to be dangerous.

Happy Thanksgiving

2007-11-22T08:28:00.001-08:00

Now that I have a little time off work, I’m getting around to writing for this blog. I have good intentions everyday but I’m always too tired to write when I actually get a chance. These chances usually come in the middle of the night or early in the morning before the boys wake up. I hope you can forgive my spelling errors and the rambling nature of this blog. I can at least use the excuse of sleep depravation.

Brandon:

Overall, Brandon has done really well. His oxygen needs have continued to improve (he needs less and less). The weaning of his nitric oxide went really well. He certainly seems to be past his infection and has recovered well from the surgery. The next big step is to get him eating on his own. The doctors have said that as soon as he is off his nitric oxide and stable they can begin to consider transporting him back to the hospital near us. The trick is that he will have to be doing well and this stability might mean that he is close to coming home. We will have to convince our insurance to pay for a back transport. I anticipate that this may not be easy to do. If he is doing really well they might feel he is to close to going home and even push to send him home while he is still eating through a tube and not back transport him.

Brandon’s nursing has been off and on. He has done well a couple of times and poorly a couple of times. We knew that we should expect this but it still feels discouraging. Yesterday the occupational therapist (the person who works with babies to get them to nurse and take a bottle) suggested that we start heavily into bottle-feeding. This is one area where the two hospitals differ greatly. UVRMC has a procedure they follow that focuses on breast-feeding when possible. At Primary Children’s Hospital they seem to do the opposite and focus on bottle feedings. It makes sense when you think about the type of problems that they deal with at each different hospital. However, there are many reasons why it is really important for Brandon to nurse. After talking it over with the nurses, Amy decided that the best thing for Brandon would be to move up to nursing him multiple times in a one day. We hope it will be for a short period but, if this is the big thing that will help get Brandon home, it will be worth it. She nursed him twice for the first time yesterday. It is good I have some time off so I can help out over the next couple of days. We might even try and stay ner the hospital this weekend. So much for a relaxed Thanksgiving weekend.

Yesterday they took Brandon completely off the nitric oxide and unfortunately his oxygen needs increased quite a bit. Last night they put him back on the smallest amount and his needs seemed to have dropped. We will have to see what the doctors say today. They intentionally wean babies slowly because getting babies off of the last little bit can be hard. I hope this just means he needs a couple of days for Brandon to adjust on very low amounts and then they can take him off completely without any side effects.

Katelyn

Katelyn is also doing well. One of our big challenges with Katelyn is to get her to grow faster. Also, in about the last two weeks she has decided that she doesn’t like bottles. We had been very careful to make sure we bottle fed her well, as per the instructions from the hospital. One of the purposes of the careful bottle feedings techniques was to make sure she didn’t have a bad experience. While she never was a stellar bottle feeder she seemed to take a turn for the worse. We even went back to the occupational therapist at UVRMC and she said we were doing everything right. We have been trying her suggestions with little luck. We have more ideas and we are going to try different bottles and nipples. She really needs to take a bottle, especially with Brandon nursing twice a day. The bottle-feeding responsibility has fallen to and I wont give up!
We are still concerned about her lip. We are going to take her in to the specialist at Primary Children’s in a couple of days. It will be nice to get another opinion and hopefully be reassured that we can eventually make sure her lip heals completely. She still isn’t doing well enough to be taken off the oxygen. We will test her again next week.

Right now we can't seem to get enough sleep. Here are a couple of sleeping pictures.

Even better

2007-11-16T15:13:00.000-08:00

Things continue to improve with Brandon. I let so much time go by between posts that I have to go back and remember what happened.

Everything hasn’t been completely smooth since the last post. A couple of days ago they found a blood clot attached to his central line. This is the line that was surgically placed in his chest and goes to his heart. It is used to easily administer several medications and treatments. A blood clot that comes loose and travels through his system could be very dangerous. The problem is that they needed that line for a couple more days to finish giving him some medications he needed. The doctors decided to keep the line and give Brandon medication to keep the clot from growing.

He continued to improve and he had some really good days but his recovery still wasn’t as fast as we hoped. He lost a lot of the extra fluid and he started looking and acting like Brandon again.

Well, today they took out the line. It went well and ever since he has had a great day. We need to remember that his progress may slow down, or even back up again, but they were able to significantly reduce the flow of his oxygen today and he seems to be doing great. We now are looking forward to the time when Amy can begin to feed him again.

Katelyn is doing well. She isn’t growing as much as we would hope but there aren’t any real problems. We are going to take her back to the dermatologist to have her look at Katelyn’s lip and make sure that everything is healing correctly. She is however, remarkably cute and very loved by her entire family.

A Happy, Happy Birthday

2007-11-12T08:03:00.000-08:00

You can see the scar from his latest surgery.

Holding Brandon, even while he was on the ventilator.

Brandon and Katelyn turned 4 months old on the 10th. It was a good day. It’s still weird to have babies that are four months old but are only 1 month older than full-term.

The week before his 4-month mark, Brandon saw a lot of changes to his ventilator. At first so many changes really concerned us but, after a little digging, we learned that it was more a difference of opinions among the doctors that were caring for Brandon than it was a sign of a major problem.

On the night of the 9th they decided that Brandon was ready and they extubated him. He is now off the ventilator. For the most part he has done well since being taken off the ventilator. However there have been some ups and downs. Because he has spent so much time on a ventilator his lungs are pretty damaged. He has pulmonary hypertension and it causes a lot of problems with his breathing. The interesting thing about his lung condition is no one knows what long-term effects it will have. Lungs grow and develop for up to 12 years so there is a lot of time to heal. However, Brandon has a pretty severe case of chronic lung disease. I still feel confident that he will make a good recovery but it is likely that he will experience a lot of asthma like symptoms and be very susceptible to pneumonia. The doctors just say he probably won’t ever be a long distance runner, but I think that has a lot more to do with the genes his dad gave him.

Considering all of the potential problems these babies could have had, I consider ourselves really blessed. I also believe that all your prayers have had a big impact. I have high hopes for Brandon and Katleyn’s future. I joke about Brandon being a star football player because he is turning out to be a pretty big looking kid. Because of everything I have seen him conquer, while I understand that his lungs would make this a surprising outcome, I believe it is still possible.

Give me some of that Popcorn!

Katelyn continues to do well and she continues to keep us up in the night. She seems to have a lot of problem with reflux and gas so she doesn’t sleep well after eating. She seems to do OK if she is held upright. As you can imagine this leads to some long nights.
Blake and Derek have done really well with Katleyn home. They don’t show any signs of jealousy and they are great big brothers. They rush to see what is wrong any time she cries. They love to help. They are very gentle and love to give her hugs and kisses. They often tell us how cute she is and how much they love her. They too are anxious to bring Brandon home. It is now even harder because it is RSV season, so they have closed the NICU at Primary Children’s to siblings.

Getting better

2007-11-05T14:51:00.001-08:00

Brandon's latest room - he's been moved a lot.

Yes. I know what all of it does.

This was taken a couple of days ago. He was even more swollen at one point than this. Notice his new scar on his left side. This is where they removed the air. It's small and should heal well.

Until today, we haven't been able to hold him for three weeks.

This is Derek visiting in the hospital on Halloween. He wore a costume to the hospital several times, even before Halloween.

Notice the Batman costume that Derek and Blake made for Brandon. We just laid it on him.

vThe boys on Halloween night.

A moment without a nasal canula. We replaced it soon after. The doctors are hopeful that, over time, her lip will completely heal.

Wating in the car.

Getting some energy out on top of the parking structure at the hospital.

View from the top of the parking garage.

Katelyn from above.

The last couple of weeks have been really hard. Brandon has been very sick and recovering slowly from the surgery. The actual surgery seemed to go well but he got an infection and it really affected him. His lungs have also had a lot of problems. Because he has been on a ventilator for so long they are pretty damaged and he is feeling the effects.

Today he is doing much better. Amy was able to hold him for the first time since his operation. A couple of days ago they switched him to a different ventilator and he really seems to be doing better. He still has moments when his oxygen needs jump up but in general they have drastically improved. His eye exam last week was great. The doctor said that he has fully healed and the operation was a 100% success. I don’t have a picture of him today but his swelling has gone down a lot in the last couple of days. We are also once again really excited about pee and poo. Brandon has been doing both well. They have begun feeding him (through a tube) again and he seems to like it.

We will have to be cautious not to go too fast because his bowls may need time to adjust. This is particularly true because the two pieces that were re-connected where very different sizes.

Over the last week we have a lot of scary moments. At one point they thought that they had found a second air pocket outside of his lungs. They also had a positive test for a yeast infection in his blood. This would have been a very big deal because it would have been very be hard to fight and could spread all over. However, the microbiologist that was working on his culture noticed that a second baby had tested positive for the same thing on the same day. She wasn’t confident that he actually had the infection. She was worried that he had been through so much and that this would prompt all kinds of other tests. Because of this, she through out the tests and started over. So far it has all been negative. Even more importantly Brandon seems to be improving.

We still want Brandon to loose weight because he has been so bloated. As of yesterday he weighed 3270 grams (7lbs. 3oz.). He’s bigger than his sister but the hard part is knowing how big he really is under all of the excess fluid.

We are constantly reminded that despite all of the challenges that Brandon has had, he continues to fight through all of it. I’m confident that the prayers of friends, family and even strangers have played a big part. One of the nurse practitioners had a special request. She asked if we would say a couple of prayers to help her know how to best treat Brandon.

Katelyn is doing well. I would hope that she would grow faster but she has been healthy. The biggest problem she has is that she doesn’t like to lay in her crib. She likes to be held. She seems to have a tough time lying flat after she has eaten but I also think this has turned into being very spoiled. She will sleep great in our arms but through a fit if we put her down. This is making for some very long nights. She is also getting a little fussy and not wanting to take her bottle. I’ll have to be more vigilant and make sure we can continue to give her a bottle.

She is still on a low amount of oxygen and also on a monitor. However, she loves to ride in the car and she does well on trips to the hospital. We have been told not to take her into public places, or have many visitors to our home for six months. Because of this we often take her in the car when we go see Brandon. We leave her in the car and take turns visiting Brandon.

Brandon is doing well

2007-10-26T07:08:00.001-07:00

Brandon certainly isn’t completely well but he is making good progress in a lot of ways. Starting Wed night he began peeing, a lot. This is really good because he has so much fluid that he needs to get rid of. His girth has gone down. His ventilator settings have improved. The blood clot has gotten smaller (they had hoped just to keep it from growing). He had another small bowl movement. All of the other tests that they give him have also begun to improve. He was awake and happy a lot more yesterday. The nurse told us how he played with his disco ball for a while yesterday.

I haven’t taken many pictures of Brandon because he has looked so sick. He looks a little better now but the effects are still visibly apparent.

He looks better but as you can see. He still has a long way to go. It does appear that he has finally turned the corner and it is just a matter of time before he recovers from this infection and all of it’s effects.

Katelyn is doing well. However she did decide that she wanted to eat every 2.5 hours last night instead of her previous schedule of every 3-3.5 hours.
We took the boys to see Brandon last night. Derek wanted to wear one of his Bateman costumes to the hospital. Derek has acquired several costumes lately and he loves to dress up as Batman. The costume had the effect he was looking for and he got attention from everyone. He must have had 20-30 people talk to him about being Batman on the way in the hospital. It was pretty cute and Derek was really proud. He was sure that they didn’t know it was him under the costume and that everyone thought he was the real Batman.