Brandon:
Monday Brandon had a “contrast study” done. In order to do the test, they needed to take him down to radiology on the first floor. They needed to put die into his system to see how well it moved through his bowls. He had trouble last time when he was moved from one room to the other. Because of this previous experience with moving Brandon, it made us pretty nervous. Amy was there and the move seemed to go very well. She was able to go into the room to find out what the results.
There often seems to be a communication problem between all of the doctors and nurses. When the Dr. first came in the room he wasn’t happy that they had gone ahead with the test that day and they also hadn’t done exactly what he wanted. However, they worked it out and the results where good. In fact they began feeding Brandon shortly after and he is up to 3ccs today. He is tolerating real feedings well and everything seems to be working.
In addition, he has been doing really well on his ventilator settings. There is even talk of removing him from the ventilator soon. I’m looking forward to seeing him for the first time without tape on his lip and hearing him cry for the first time.
Katelyn:
Katleyn is also doing well. While she still has a significant amount of secretions, some of the other numbers are dropping and showing that she is improving. Most of all she is still really cute and Amy got to hold her for a while today. We get to lift her to weigh her and change her bedding but we haven’t had many opportunities to hold her for and extended period of time.
She is growing fast and so she is much bigger than Brandon. We talked to a nurse the other day that has 17 yr. old twins - a boy and a girl. One of the interesting things she mentioned was that the girl was bigger than the boy. As girls do, she matured first and so for a while she was a lot bigger than her twin brother. In high school he caught up but for a while he was teased because his twin sister was so much taller. This story reminded me how different and experience it will be to have a boy and girl rather than two boys.
Wednesday, August 8, 2007
Monday, August 6, 2007
Weekend wrap up
Both Brandon and Katelyn are doing well today.
Katelyn continues to have a lot of secretions. She is doing well clinically and doesn’t show many signs of problems but they have restarted her antibiotics just in case. Amy had a long talk with the doctor about what lies ahead. The big challenge of the next month will be getting both baby’s lungs strong. It will just take time and they will try a lot of different approaches. Katelyn now weighs 2 lbs 9 oz.
Brandon was doing really well on the new ventilator. However, last night he had a bad incident. His blood pressure dropped. His oxygen needs shot up to 100% and they even needed to “bag” him. (They had to hand squeeze the air into his lungs because the ventilator didn’t cut it.) He returned to normal pretty quickly and did well the rest of the night but this all sounded very scary to us. We went up this morning to be there when the doctors did their rounds. When we walked in his oxygen needs were down to 25. He has never been this good. As we talked to the doctors they could take guesses at what happened in the night, but of course they didn’t know for sure. They seemed to believe that everything was good before and everything was good after so they thought it was an isolated incident. They assume it was something like getting mucus stuck in his airway. He did seem to be doing really well. They also had given him albuterol to help clear up his airways and it seemed to be really effective. They are going to watch him close but he actually seems to be doing great now. Brandon weighs 1 lb 13 oz. today.
An interesting note about the sensitivity of the monitors: Amy was taking Brandon’s temperature by placing a thermometer in his armpit. Of course he doesn’t like this much and started wiggling so she had to hold his arm still. Just the pressure of Amy holding his arm close to his body set off alarms because his lung wasn’t expanding enough.
Both Brandon and Katelyn have needed a lot of blood over this first month. They even began to get transfusions before their were born. Because they also needed a lot of tests done, a lot of blood was taken from them. They don’t have a lot of blood to start with so just taking blood for tests often meant that it needed to be replaced. Up until recently Brandon had to be typed every three days in order to make sure that his blood type matched perfectly with the donor blood. They have stopped this now but it still seems ridiculous to take a good amount of blood to determine his blood type every three days. The intresting part is that, until recently, it kept changing everyday. Not the main blood type, but the antibodies would change
Katelyn continues to have a lot of secretions. She is doing well clinically and doesn’t show many signs of problems but they have restarted her antibiotics just in case. Amy had a long talk with the doctor about what lies ahead. The big challenge of the next month will be getting both baby’s lungs strong. It will just take time and they will try a lot of different approaches. Katelyn now weighs 2 lbs 9 oz.
Brandon was doing really well on the new ventilator. However, last night he had a bad incident. His blood pressure dropped. His oxygen needs shot up to 100% and they even needed to “bag” him. (They had to hand squeeze the air into his lungs because the ventilator didn’t cut it.) He returned to normal pretty quickly and did well the rest of the night but this all sounded very scary to us. We went up this morning to be there when the doctors did their rounds. When we walked in his oxygen needs were down to 25. He has never been this good. As we talked to the doctors they could take guesses at what happened in the night, but of course they didn’t know for sure. They seemed to believe that everything was good before and everything was good after so they thought it was an isolated incident. They assume it was something like getting mucus stuck in his airway. He did seem to be doing really well. They also had given him albuterol to help clear up his airways and it seemed to be really effective. They are going to watch him close but he actually seems to be doing great now. Brandon weighs 1 lb 13 oz. today.
An interesting note about the sensitivity of the monitors: Amy was taking Brandon’s temperature by placing a thermometer in his armpit. Of course he doesn’t like this much and started wiggling so she had to hold his arm still. Just the pressure of Amy holding his arm close to his body set off alarms because his lung wasn’t expanding enough.
Both Brandon and Katelyn have needed a lot of blood over this first month. They even began to get transfusions before their were born. Because they also needed a lot of tests done, a lot of blood was taken from them. They don’t have a lot of blood to start with so just taking blood for tests often meant that it needed to be replaced. Up until recently Brandon had to be typed every three days in order to make sure that his blood type matched perfectly with the donor blood. They have stopped this now but it still seems ridiculous to take a good amount of blood to determine his blood type every three days. The intresting part is that, until recently, it kept changing everyday. Not the main blood type, but the antibodies would change
Saturday, August 4, 2007
How are they today?
Only the pink bows stay in her hair very long. Amy thinks it is because she likes pink. Just an interesting note: when everyone sees these guys for the first time they are shocked at how small they are (particularly Brandon). They say that the pictures don’t really show how small they really are. Today is a good day.
Katelyn continues to do well. The doctors feel good about her steroid treatment and her oxygen needs seem to stay low. She has a good grip and loves to hang on to her mom's finger. She also has spend a lot of time with her eyes open and she loves to suck on her pacifier. Her hair seems to grow fast. I keep telling her to put her growing efforts elsewhere but she doesn't seem to listen.
We went up to the hospital on Friday morning to be there for rounds. The doctors discussed the switch to the new ventilator for Brandon. We felt good about it but we were still a little apprehensive. They switched him over after lunch and things seemed to go well. Shortly after the switch his oxygen needs dropped even lower than they where on the other ventilator. However there was one short period that evening when his oxygen needs jumped to 100% then came back down. When we called the hospital in the middle of the night he had also jumped back to 100%. The good news is that they figured out that when they suctioned him and cleared everything out he quickly dropped down again. So Today is oxygen needs are lower than they have been for a long time and he is now doing well on a ventilator that allows him to do more breathing on his own. It is much more like normal breathing.
We also learned that the plan is to do a “contrast” test on Brandon on Monday. They will put a dye into his T tube (in his stomach) and they can see how well things are moving. If everything looks clear they can remove the T tube from his stomach and he might be able to begin feedings soon. This is a big step for a little guy with so many bowl troubles.
Friday, August 3, 2007
Thank You
We would like to thank everyone for all the help we have received. Our neighbors, friends and family have done so much and I don’t think we will ever be able to repay everyone.
We also know that many of you want to help and you may feel like you haven’t been able to do much. You have helped more than you realize. I’m confident that Brandon and Katelyn are doing as well as they are because of your prayers. We have felt the direct effects and this has been exactly what we needed. There are so many people who have been praying intensely for our babies that it would be difficult for us to thank everyone personally. I feel like thanking you namelessly over a blog is so inadequate when compared to the amount of help you have given us but I want everyone to know that it has been working. It may not feel like you have helped much but you have.
We also know that many of you want to help and you may feel like you haven’t been able to do much. You have helped more than you realize. I’m confident that Brandon and Katelyn are doing as well as they are because of your prayers. We have felt the direct effects and this has been exactly what we needed. There are so many people who have been praying intensely for our babies that it would be difficult for us to thank everyone personally. I feel like thanking you namelessly over a blog is so inadequate when compared to the amount of help you have given us but I want everyone to know that it has been working. It may not feel like you have helped much but you have.
Thursday, August 2, 2007
Blake and Derek
Blake and Derek seem to be handling things pretty well. We work hard to make sure that we spend good time with them and we explain what is going on. They also have been very interested in visiting Brandon and Katelyn. Our family visits have been fun.
One of the things that both hospitals offer is a class for the siblings of NICU patients. They spend about an hour doing crafts. They also spend time explaining all of the equipment and tubing that is often around the babies. One method they use is giving them a homemade doll. They can color these dolls. They put monitors on the dolls and explain to the kids how they work.
This is a photo of the dolls that our boys made. If you notice they choose to put the face on the backside so the hospital gowns open in the front. And of course, they have also chosen to make them anatomically correct with thier markers. Seeing Katelyn has also brought to their attention the differences between boys and girls. All of this may sound typical of a 4 year old but for those of you who don’t know our boys well; they like to talk to everyone. This means that all of the nurses and workers at the hospital get to see and hear about their dolls and they get to know if their “baby” is a boy or a girl. I guess we need to work on teaching them when it is appropriate to talk about stuff like that.
Today’s update:
A close up of Brandon. Notice how good his coloring looks. The room is a little dark and we hate using the flash too often because it always startles him so we haven’t put up too many good photos of Brandon.Katelyn is getting big. She is almost 2 lbs 7 oz. The doctors were concerned about putting Katelyn on a big dose of steroids because of all of the potential side effects. However, after a lot of consulting, they learned that the recommended dose was rather small. They also realized that the hemangioma only became apparent and began to darken after they changed the steriods they were giving her for something else. It was a little different steroid than the dermatologist would normally have recommended but everyone feels comfortable putting her back on same thing that seemed to be working previously. Most likely the steroid treatment will need to last for a long time, up to a year.
The pediatric dermatologist is hard to get an appointment with. The doctor suggested that we call and arrange and appointment when Katelyn is taken off of the ventilator because it is typically about 1 month after that time that babies can go home. This was interesting news to us because we had never heard this estimate.
Brandon isn’t growing much. It isn’t incredibly alarming but the doctors are going to see if they can give him a little better nutrition. It sounds like he won’t begin feedings until after they have removed the t tube from his stomach. We need to talk to the surgeons to see how long they think this it will take until he is ready. By the way, the surgeons have been really happy with his progress.
We also learned that they are going to move Brandon back to the Dragor ventilator. This slightly alarmed us because it hasn’t been successful the last two times. The Doctor took the time to explain that he believes that the other attempts where complicated by other problems, like infections. He also explained that he is concerned about damage that may be caused to his lungs because he has been on the oscillator for so long. With this explanation it sounds like a logical step. It will be a big step in the right direction. They are going to try it tomorrow morning so everyone cross your fingers and say a little prayer.
Three weeks and two days - Update
Katelyn is doing well. In fact she has done remarkably well with her feedings. It is uncommon for a baby as premature as she is to get to full feedings so quickly and without any setbacks. She is growing and is over two pounds now. She is till fighting the last bit of her pneumonia. She has a bunch of extra secretions and they have done a couple of deep tracheal suctions to help clear her out. They have also switched to a new ventilator (a Jet) that is better at clearing everything out. She has an occasional swing on her oxygen needs, but for the most part, her settings are really low.
The new development with Katelyn is that we have discovered that she has an hemangioma on her lip. At first it looked like she had a bruised lip but it has been getting darker. As I understand it, they are caused by a large collection of blood vessels in concentrated area. They are fairly common, especially in premature babies. The dermatologist looked at Katelyn. Just like everything seems to be, there are no definitive answers. It could go away or it could get bigger. They typically grow in the first year and then shrink. The standard numbers are at 3 years 30% are gone. At 5 years 50% are gone and at 7 years 70% are gone. Katelyn's is a little concerning because it seems to be growing now and it is on her lip where she could bite it when she eats. It sounds like they may give her some steroids to help keep it from growing too big. She is already taking the steriods for other stuff, so it may just be that she needs a larger dose.
Brandon is also doing well. He had a bad spell where is oxygen needs went up. For a while he was hovering around 70%. They had been weaning him from the nitric oxide. They couldn’t see any more pulmonary hypertension. However, because his lungs have been a little hazy and because he has so many tubes and things going on around his abdomen, the echos haven't been as easy to see everything as they would like, so they have been cautious. He came off the nitric oxide completely and his latest echocardiogram looked good. It is common for oxygen needs to increase after discontinuing nitric oxide. However, Brandon was still higher than we wanted him to be when he was at 70%. He dropped some and hung out at around 50% yesterday. They gave him another drug to help and he dropped last night into the low 40’s.
The good news is that he is looking really good. They are also weaning him a bit from his pain medication so is more alert more often. He looks so much better.
The new development with Katelyn is that we have discovered that she has an hemangioma on her lip. At first it looked like she had a bruised lip but it has been getting darker. As I understand it, they are caused by a large collection of blood vessels in concentrated area. They are fairly common, especially in premature babies. The dermatologist looked at Katelyn. Just like everything seems to be, there are no definitive answers. It could go away or it could get bigger. They typically grow in the first year and then shrink. The standard numbers are at 3 years 30% are gone. At 5 years 50% are gone and at 7 years 70% are gone. Katelyn's is a little concerning because it seems to be growing now and it is on her lip where she could bite it when she eats. It sounds like they may give her some steroids to help keep it from growing too big. She is already taking the steriods for other stuff, so it may just be that she needs a larger dose.
Brandon is also doing well. He had a bad spell where is oxygen needs went up. For a while he was hovering around 70%. They had been weaning him from the nitric oxide. They couldn’t see any more pulmonary hypertension. However, because his lungs have been a little hazy and because he has so many tubes and things going on around his abdomen, the echos haven't been as easy to see everything as they would like, so they have been cautious. He came off the nitric oxide completely and his latest echocardiogram looked good. It is common for oxygen needs to increase after discontinuing nitric oxide. However, Brandon was still higher than we wanted him to be when he was at 70%. He dropped some and hung out at around 50% yesterday. They gave him another drug to help and he dropped last night into the low 40’s.
The good news is that he is looking really good. They are also weaning him a bit from his pain medication so is more alert more often. He looks so much better.
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