Monday, July 30, 2007

More photos

Pictures of the family helping with Katelyn's bath.

What's been going on?

Once again it has been an emotional and eventful week.

On Thursday the doctors had once again decided to give the Dragor ventilator another try on Brandon. These ventilators function much more like regular breathing. Rather than using very rapid, short breaths the Dragor allows the lungs to deflate and inflate more. Brandon didn’t do well the first time they tried this other ventilator but he was looking good enough that they wanted to try again. This would be considered a step toward getting him off of the ventilator completely. A test had also come up positive for staff infection but they weren’t sure if it was a contaminated sample or if it was real. They planned to continue to test him for a couple of days to see what they could find.

Thursday night Brandon didn’t do well. He had several swings where he needed a lot more medication. His blood pressure got very low and he was requiring 100% oxygen from his ventilator. They switched him back to the oscillating ventilator. We headed up in the morning after getting the news.

By the time we got there he was much more stable. All of his tests had started to return to normal. We got a chance to stay for rounds and talk to the doctor and the rest of the staff. There is a good size group that does rounds at PCMC. They again assured us that while these swings can be very alarming and dangerous, that they are actually common for a baby as small and premature as Brandon. He also told us we should expect to see more, in fact if nothing like this happened again before he got to go home, the doctor offered to buy us dinner. He was very reassuring and made us feel much better.

However, the nurse was very guarded and didn’t want us to disturb Brandon. She didn’t want us to lift his blanket or touch him. Shortly after rounds we learned that the room he was in needed new countertops and all of the babies in the room needed to be moved. I asked a couple of questions about how it worked. About 4 nurses did the initial move. They basically unhook everything from the wall and push everything into the other room and plug everything back in.

The move didn’t go well. About 2 minutes later they had Brandon in his new room and had begun plugging everything into the wall. The problem is that his heart rate had dropped and he didn’t seem to be breathing correctly. We watched for about 5 minutes (this is a long time to watch) as about 10 nurses and doctors worked on Brandon. His heart rate dropped low enough that they began chest compressions and they seemed very alarmed that his ventilator didn’t seemed to be working. It was very scary. Eventually they got everything working and he returned to a much more stable situation. (Later we had a talk with the several people about why the decision was made to move him because of new countertops when the nurse was concerned enough that she didn’t want us to disturb him.) Needless to say, it was a very stressful and emotional experience.

Because they found infections in only one location, the “art line” the doctor decided to take the old one out and put a new one in. It took a couple of tries but a new one is in now. Brandon did very well last night and they are again going through the weaning process for the nitric oxide (that they had to again start using again during his recent bad spell).

Amy and I got a chance to go up and bathe Brandon last night. This was the first time we have been able to do it. The nurses do their best to disturb Brandon as little as possible but he loves his mom and he seems to respond really well when she interacts with him. He looked really good last night and he seemed very calm and relaxed. He spent a lot of his time trying hard to turn his head and look at his mom. We didn’t take many pictures because the flash is startling and they keep the lighting very low.

Just as an intresting note, Amy went in for an appointment with her doctor. This doctor has access to all of the medical records for Brandon and Katelyn. She told Amy how amazing it was that Brandon made it to this point. She read the notes and said that at first the doctors didn’t think Brandon was going to live. We knew this but they had always phrased it more gently. Now that he had made it past the most difficult part, hearing the doctor say this reminded us how lucky we have been so far. Tomorrow they will be 3 weeks old!

This is a funny angle and the tube is pulling at her cheek. She still has the tape marks on her face but isn't she cute?


Katelyn is doing better in general than Brandon but she also an incident on Friday. The evening after we had watched Brandon struggle we went in to help give Katelyn a bath. We had completed most of the bath when, while suctioning out her mouth; her ventilator tube was knocked loose. We watched while they pulled her tube and put a new one in. She went a while without the tube in her mouth and she turned purple. Again it was a pretty scary thing to watch. They got her back to her normal setting pretty quickly.

Amy took the kids out of the room. I did get to hear Katelyn cry for the first time while they had her tube out. It was pretty horse and could hardly be considered a real cry but I still heard it. I was hoping to hear her first cry under much better circumstances. Also, once they go the new tube back in, we got our first chance to see Katelyn’s face without tape covering her lip. I took a picture but it is from a funny angle. Luckily she is very feminine looking and Brandon is more masculine. We think they are both very cute.

Katelyn also had a positive test for pneumonia about the same time we found out that Brandon had staff. The good news is that they caught it early and immediately got her on antibiotics. She never really showed signs of being sick.
Another piece of good news is that Katelyn’s feedings are going well. She is almost to the point where they can stop feeding her intravenously and rely completely on breast milk. (She still is fed through a tube.)

Thursday, July 26, 2007

Video of Katelyn

Here is some video of Katleyn. It isn’t the best but I will try and work on getting better video. I couldn’t catch her opening her eye. This is a big file so I only suggest that you click on it if you have a fast Internet connection

Ups and downs

The doctors clearly told us that our experience over the next couple of months would be a rollercoaster ride with a lot of ups and downs. A couple of days ago we hit a couple of bumps in the road with both Brandon and Katelyn. No major problems but we did see a couple of concerning things.

Brandon's ventilator setting rose a little bit and his blood pressure dropped. They where worried that he might have an infection but couldn’t find anything. One of the steps they took was to switch to a different type of ventilator. They hoped that this would be a step toward getting off any kind of ventilator. Once he was placed on the new ventilator for a day, he actually got worse. The good news is that they switched him back and he seems to be doing really well today. The results from all of his tests today looked good and we should be back on track to improvement.

Katelyn’s x-rays of her lungs had been “ a little hazy” for a couple of days. On the same day that Brandon took a step back, they also discovered that Katelyn had pneumonia. They monitor everything so closely that they caught it in the very early stages and instantly began treating her with antibiotics. She seems to be doing much better today and things are looking good again.

Katelyn has a lot of spunk. Everyone once in a while she gets excited and starts thrashing about. However, the nurses have discovered she likes curling up in a ball on her stomach.

Katelyn is really charming in this position.

The diapers that look so big in the photos are actually really small.

Saturday, July 21, 2007

How long are they going to be in the hospital?

The official answer is that no one knows. It depends on how things go. The nurses have told us to at least plan on them being in the NICU until their due date. This would mean that we would have them home around the first week of October. However everyone quickly pointed out that it isn’t uncommon to go a couple of months past the due date. We will have to just wait and see.

For now they are in two different hospitals that are about 50-60 miles apart. There is always the possibility that Brandon could be transferred back with his sister once he has improved, but this won’t be anytime soon. It is really hard to go too long without seeing them so we have put a lot of miles in since the 10th.

This is a display at PCMC

I know it is blrry but we couldn't get the boys to hols still for long.

Mom giving Katelyn a "bath".


Brandon - Believe it or not his color has really improved.

Thursday, July 19, 2007

How big are they?

I know everyone wants to see pictures of these little guys. After being around them for a long time, I have gotten used to their small size. The funny thing is that now when a look at a 5 or 6 lb full term baby they look HUGE.

Here are some pictures taken the day after birth. Hint: Pink hat = girl and Blue hat = boy

Yes, That is my wedding ring.

More Good News!

You would never think that pooping would make a father so proud. Brandon's bowls have begun to work. He's filling a bag now so it makes diaper changing easy. Although he has been a strong peeper for quite some time so there still is something to change :)

Just before Amy went to visit Brandon tonight he got the hiccups. He didn’t like it much and it made him a little agitated. The good news is that when he stopped the nurse had to drop his amount of oxygen a lot (about 10). It seemed to open up his lungs.

Good News!

We just got word that katelyn's PDA is closed today. There is always a chance it will open back up so they continue to check it but it is great news!

Brandon: The first week

Brandon’s first week was a little more complicated than Katelyn’s. He had many of the same challenges but also many others. The drop in his heart rate was what prompted the emergency C-section. He needed chest compressions and a lot more attention just to keep him alive at first. Like Katelyne, he was also placed on a ventilator and under lights to treat Jaundice and treated for pulmonary hypertension. The one thing that Brandon didn’t have that Katelyn did was the PDA.

Even before his birth the doctors had seen enlarged bowls during the ultrasound exams. We didn’t know what this meant but it was certainly a concern. Within the first day of life it was obvious that his stomach was distended and that he had a problem with his bowls. The day after his birth the doctors at Utah Valley Hospital became very concerned that he was getting worse and not better. They did not have a full-time surgeon at Utah Valley so they made the decision to immediately air lift him to Primary Children’s Hospital in Salt Lake. When he arrived at PCMC (Primary Children’s Medical Center) the surgon’s felt he was too unstable and would not survive surgery. They continued to take x-rays and do tests. Back at Utah Valley Hospital they had given him some die to see how his bowls were working and it wasn’t passing through his system. There was certainly a problem.

The doctors used phrases like “overwhelming infection” and critically ill”. One doctor said that it was certainly possible for babies this sick to recover, but not all did. His coloration began to change. He looked very dark and bruised all over. His white blood cell count (the ability to fight infection) reached alarmingly low numbers. At one point Amy was released early from the hospital because after a particularly unstable night things didn’t look good.

The doctors treated him with everything they could think of. He slowly began to improve. Over the period of a couple of days they began to use words like “stable” but he certainly was still sick. Through a lot of effort and prayers he gradually began to improve. After a couple of days he reached the point where the doctors felt like they could run a couple more test. When they did they quickly discovered that he had a perforation in his bowls. He wasn’t quite ready for surgery but he had reached a point where they had to operate because if it was left untreated, he would quickly turn worse and wouldn’t survive. The doctor clearly explained that the operation was necessary but also very risky. There was a good chance he wouldn’t survive. In fact, he was so unstable they didn’t want to move him to the operation room, instead the surgeons came to him.

The amazingly great thing is that he made it and was very stable through the operation. The veteran surgeon was quite perplexed at his situation and said he had to stop and think about what to do. After a little thought, a technique he had read about came to him. It worked really well. It certainly sounded like inspiration to me. He removed about a 3-4 inch section of his bowls. He then used a T-joint to expose his bowls and allow for flushing them with fluids later.

Brandon is much better. His bowls will be exposed for anywhere from 2-6 months as his system recovers and improves. They doctors will then have to go back in and put everything back together. He still has a long road ahead of him but he is rapidly improving and slowly retuning to normal color. The doctors seem very excited and optimistic. There was a dramatic change in their attitude and in all of the numbers from the many tests they complete daily.

Neither Katelyn or Brandon had any bleeding in the brain. This is a common problem for babies this early that can contribute to developmental problems. They will continue to monitor it but it is very encouraging that their head scans have been normal.

We will continue to add information and try and update this blog regularly. It is amazing how you can Love such small babies so much.

Katelyn: The first week

It is really hard to go back and re-cap what happened in the first week of Katelyn’s life. It is all a blur at this point. Right after they were born and Amy was still unconscious, I remember sitting and watching 10-15 doctors and nurses scurry around and try and keep both babies alive. It certainly was intense and overwhelming. After the first couple of hours things slowed down a bit, but not completely. There where constant up and downs. As we would sit next to either beds we would often hear monitors go off and see doctors (calmly but certainly with alarm) rush over and attend to the babies. They would adjust oxygen levels, medication levels, draw blood and run tests. Both babies received many blood transfusions and other blood products during their first week of life. In fact, they had received so much blood before birth that it was difficult to determine their blood type.

Katelyn certainly had a rough start. There are a lot of risks associated with prematurely. The first concerns where all of the important body functions. The heart and lungs are vital. She was quickly hooked up to a ton of monitors and a ventilator that pumped rapid burst of oxygen into her lungs. Because of the tubes in her throat we still haven’t heard her cry. She was soon put under several lights to treat jaundice.

We have been receiving daily updates with a bunch of numbers that track all kinds of things. It would be very difficult to describe everything but we can say that we are learning a lot. During one of the test the doctors discovered that Katelyn has a PDA. Babies have a valve between the two chambers of the heart that is open during pregnancy. It should close shortly after birth. Katlyn’s opening was rather large. She was given a first round of ibuprofen (yes this can help and this is also why pregnant women shouldn’t take ibuprofen during pregnancy – it can cause early closure). It helped but it didn’t close completely. We have begun a second round and we will see how it goes. If medication doesn’t work she will need to have an operation and a small metal clamp will be placed to close off this opening.

She is doing really well know but she will be in the NICU for a couple of months (if not longer). They have been able to turn down the settings on the ventilator and reduce many of the medications she is taking. She has been also doing well enough that they have begun feedings of breast milk through a tube. She has a reputation for being very feisty. She often pulls at all of the monitors and cords that are attached to her. We’re able hold her hand and interact with her. We have also been able to give her couple of “baths”. We gently wipe her down with cotton balls. We have to be careful because her clavicle was broken at birth.

She continues to improve everyday but the doctors have warned us that it will be a bumpy ride and most likely there will be other problems along the way.

Monday, July 16, 2007

They're here!

Brandon was born first and Katelyn just one minute later. Brandon weighed 650 grams or (if I converted it right) 1lb 7oz. Katelyn was slightly larger weighing in at 749 grams or 1lb 10oz. Brandon measured 12 inches long and Katelyn measured 13 inches long. They were born on July 10th at 6:26 and 6:27 pm. They arrived at 27 weeks, (40 weeks is full-term.)

Sunday, July 15, 2007

What's happened to this point

We have been aware for a long time that Amy and I aren’t quite as "made for each other" as we otherwise would have thought. Our blood doesn't mix well. This means that if I pass along my blood type to any of our babies and during pregnancy the baby's blood mixes with Amy's blood she could begin to produce antibodies that fight against the baby's blood. And just our luck, all four of our kids got enough from me to cause trouble.

Normally there is a simple solution. Many times during pregnancy and even after birth amother in this situation is given a shot that prevents her body from producing these antibodies. They often draw blood and check the status of these particular antibodies. Amy received all of these shots during previous pregnancies and everything was fine with Blake and Derek.

This time we learned early on that, for some unexplained reason, Amy had become “sensitized”. Her body had begun creating the antibodies. Because of this situation we understood that our new set of developing twins would be at risk. We begun a regiment of weekly visits to the doctor where ultrasounds where used to determine how anemic the babies had become. Using ultrasound the doctors can’t get a completely accurate picture of how anemic the babies have become. They could however watch the speed of the flow of the blood in the brain. The idea is that the thinner the blood the faster it moves. They also watched for other signs.

Brandon and Katelyn began to develop signs of anemia early on. The measure of the flow of blood in the brain (MCA Dopplers) began to increase. Even more alarmingly Brandon began to show signs of extra fluids collecting around his heart and in his stomach. This extra fluid is a sign of heart failure. The doctors determined that the best thing to do was to give the babies a blood transfusion in utero. We'd been told early on that this was a very likely scenario but everyone had hoped that we could wait much longer. At less than 23 weeks it was possible to complete a blood transfusion but it was very difficult because everything was so small.

Over the next month we completed three of these blood transfusions. Each had varying amounts of success. They were long and difficult procedures but each time there seemed to be improvement. The doctors where often able to sample the babies blood before and after the transfusions and know exactly what each baby's hematacrit was. We became quite familar with the procedure. At one point during the third procedure, Brandon's heart rate dropped. I was asked to make a serious decisions. If the heart rate remeained low they could deliver the babies but it was early enought in the pregnancy that the survival rate for both babies was rather low. Luckily his heart rate increased and the docters were able to complete the tansfusion.

On July 10th, we once again went in for a transufsion. Amy was always sedated but consious during these procedures. After a couple of hours of stuggling (most of the transfusions lasted over 4 hours) again Brandon's heart rate dropped. The doctors stopped and it slowly returned. They continued as before but every time the needle was inserted into his umbilical cord his heart rate dropped. We were aware that he had a particularly small umbilical cord ant thathe had a single artery when most babies have two. Because of the problems with the heart rate the doctor told evreyone in the room to prepare for an emergancy c-section. As the doctor feared Brandon's heart rate dropped and didn't show signs of returning to normal. The doctor made the decision to deliver the babies. Amy was immeadiatly put under general anesthesia and as I watched the room buzed with activity and within 5 minutes we had delievered two very small and premature babies.