Friday, August 24, 2007
We went to see Brandon tonight and his night nurse told us that they decided to go ahead and re-intubate with the bigger tube. His air leak was up to 90% which means that he is loosing 90% of the support. So after we left they made the change and we just called his nurse and she said it went fine. Hopefully this will give him the support he needs to rest up and grow so he can breathe on his own soon.
More stuff to watch for
Blake and Derek think that the best part of thier first soccer game was the refreshments.
What? My brother's are coming to see me!
Derek kissing Katelyn
Blake kissing Katelyn
Close up of Katelyn
The boys and Katelyn
Amy holding Brandon while they switched his bed.
Close up of Brandon from when they last tried to extubate him.Both Brandon and Katelyn had eye exams recently and they found things that will need to be monitored closely. They both have mild retinopathy of prematurity (ROP). This means that the retinal vessels have begun to grow where they shouldn’t. Babies with their level of severity usually don’t require treatment and the eye heals within the first year of life. However it is just one more thing that they will be monitoring closely and watching to see if it gets any worse. The potential problems can range from needing glasses, even as a child, to blindness (although blindness seems to be really rare and only in very severe cases).
Katelyn is doing well and she continues to have her feeding time shortened. She was scheduled to have her second of three injections to treat the hemangioma on her lip. However, when the doctor saw how small it had gotten he was very shocked. He said that this kind of progress was “off the charts” and he didn’t think that she will ever need another injection. He will continue to monitor her but it was great news.
Brandon seems to be doing well but we are certainly more worried about him. The tube that he is using for the ventilator is leaking. It seems to be too small for his airway but the next size up would be too big. They have adjusted his ventilator to compensate for the leak and are hoping that they will be able to try extubating him again before they have to pull his tube and re-intubate him.
The biggest thing with Brandon is that he needs to grow. They have been increasing he amount of calories in his feedings and he is tolerating it well so they went up another step today. It is hard for a baby so small and with as little muscle mass as he has to breathe. He is working hard and most likely burning a lot of calories just breathing. He is growing slowly but he is still small.
Katelyn is doing well and she continues to have her feeding time shortened. She was scheduled to have her second of three injections to treat the hemangioma on her lip. However, when the doctor saw how small it had gotten he was very shocked. He said that this kind of progress was “off the charts” and he didn’t think that she will ever need another injection. He will continue to monitor her but it was great news.
Brandon seems to be doing well but we are certainly more worried about him. The tube that he is using for the ventilator is leaking. It seems to be too small for his airway but the next size up would be too big. They have adjusted his ventilator to compensate for the leak and are hoping that they will be able to try extubating him again before they have to pull his tube and re-intubate him.
The biggest thing with Brandon is that he needs to grow. They have been increasing he amount of calories in his feedings and he is tolerating it well so they went up another step today. It is hard for a baby so small and with as little muscle mass as he has to breathe. He is working hard and most likely burning a lot of calories just breathing. He is growing slowly but he is still small.
Wednesday, August 22, 2007
A step back
Overall both Brandon and Katelyn are doing well. However, Brandon has been struggling and so he was re-intubated today and placed back on the ventilator. He has been on the borderline to returning to the ventilator ever since they took him off. He has to work to hard to breath. His recent X-Rays have shown “wet lungs” and this can also make it even harder to breath. They gave him some medication and adjusted his fluids. Even thought it didn’t keep him off of the ventilator his lungs looked much better today. The deciding factor was his blood test done today. His CO2 levels where high and that is an indication that he isn’t exhaling what he should. The doctors and nurses worked hard to keep him off the ventilators, not only because it is good progress, but also because the longer he is on a ventilator the more damage can be done to his lungs. While it was disappointing it really isn’t that bad. They will give him a while to rest and grow and try again soon.
Katelyn is progressing well. They have been reducing the length of her feedings. They went from continuous to three hours of feeding and one off. Yesterday they took the next step went to 2-hour feedings. She is handling it well and they should take the next step soon. Here hemangioma seems to be responding well because it is getting smaller.
Katelyn is getting spoiled already. She loves to be held and suck on her pacifier. She also can get quite mad when anyone is bugging her. Tonight she was really mad when I was changing her diapers but then she took a bath. She LOVES taking a bath. She quiets right down and sits calmly, right up until the time when we take her out. Below is some video of Katelyn taking a tub bath. It is a large file (15M) so I would only suggest downloading it if you have a really good internet connection.
http://www.bla-dam.com/Katelynbath2.MOV
Something interesting:
We have gotten to know many of the nurses well. One of them was telling Amy some interesting stories. Occasionally a NICU parent will bring in baked good for everyone to eat. This particular nurse won’t eat them unless she knows the parents really well. That seems reasonable but the reason why shocked me. On more than one occasion the mother would announce, after the food had been eaten, that now everyone had extra anti-bodies because she had used her breast milk to bake. Really. I’m not making this stuff up.
Katelyn is progressing well. They have been reducing the length of her feedings. They went from continuous to three hours of feeding and one off. Yesterday they took the next step went to 2-hour feedings. She is handling it well and they should take the next step soon. Here hemangioma seems to be responding well because it is getting smaller.
Katelyn is getting spoiled already. She loves to be held and suck on her pacifier. She also can get quite mad when anyone is bugging her. Tonight she was really mad when I was changing her diapers but then she took a bath. She LOVES taking a bath. She quiets right down and sits calmly, right up until the time when we take her out. Below is some video of Katelyn taking a tub bath. It is a large file (15M) so I would only suggest downloading it if you have a really good internet connection.
http://www.bla-dam.com/Katelynbath2.MOV
Something interesting:
We have gotten to know many of the nurses well. One of them was telling Amy some interesting stories. Occasionally a NICU parent will bring in baked good for everyone to eat. This particular nurse won’t eat them unless she knows the parents really well. That seems reasonable but the reason why shocked me. On more than one occasion the mother would announce, after the food had been eaten, that now everyone had extra anti-bodies because she had used her breast milk to bake. Really. I’m not making this stuff up.
Sunday, August 19, 2007
Extubation and a first bath.
Once again, we had a very busy weekend.
Katelyn has a lot of spunk. She also didn’t like her C-PAP mask very much. She would constantly fight it by wiggling around until it was loose. The mask spent a lot of time not hooked up correctly but she continued to do well without it. During one of Amy’s quick visits the nurse decided that enough was enough. It was time to get rid of her mask an move to simple oxygen. In addition to making fast progress we can now see her face even better. They also switched out her feeding tube today to the type that goes through her nose. It is much smaller and now she doesn’t need the tape on her lip. So today, we can see her even better. I will put up today’s pictures soon.
She has learned how to cry quite well and she loves to be held. She is already getting spoiled so we are going to have our hands full when she comes home.
Even before they switched her feeding tube she had progressed to the point where she could have her first tub bath. She really liked it. She calmed right down when she was put in the warm water. It was really fun to watch all of her reactions.
Brandon took a really big step. Once again they decided to extubate him (take him off of the ventilator and put him on C-PAP). For a moment we got to see his un taped up face again. As before, the C-PAP is much bigger but it is a big step and is much better on his lungs than the ventilator.
It has been really hard work for him. It went well, but it certainly hasn’t been easy. He has pushed it a couple of times and they he has been close to returning to the ventilator. While it wouldn’t be tragic for him to be re-intubated and go back on the ventilator they are working hard to avoid it. His lungs really need some time to heal.
We sat and talked with the nurse practitioner for a long time about the approach to getting him to grow. He had x-rays taken of his lungs that didn’t look great. They believe that one of the major problems is that they have been giving him more fluids than they normally would like. They need to keep a certain amount of fluids flowing through the PIC line (a deep IV) in order to keep it in. They feed Brandon his non-food nutrients through this tube. The breast milk feedings have reached a level where, in order to keep the fluid levels where they need them they would need to reduce the amount of fluids going through the PIC line lower than what they can do. So, what this confusing explanation means is that they might take out the PIC line soon, they are increasing his feedings and lowing his overall fluids. They hope that all of this action will result in it being much easier for Brandon to breath and grow. We also asked when it would be reasonable to expect to get Brandon home. Of course, no one knows, but the nurse felt like we might want to think about November or December instead of his due date in early October. We expected this but is just sounds so far away.
As of our last call tonight he was doing well and it has now been well over 24 hours since he was taken off of the ventilator.
Katelyn has a lot of spunk. She also didn’t like her C-PAP mask very much. She would constantly fight it by wiggling around until it was loose. The mask spent a lot of time not hooked up correctly but she continued to do well without it. During one of Amy’s quick visits the nurse decided that enough was enough. It was time to get rid of her mask an move to simple oxygen. In addition to making fast progress we can now see her face even better. They also switched out her feeding tube today to the type that goes through her nose. It is much smaller and now she doesn’t need the tape on her lip. So today, we can see her even better. I will put up today’s pictures soon.
She has learned how to cry quite well and she loves to be held. She is already getting spoiled so we are going to have our hands full when she comes home.
Even before they switched her feeding tube she had progressed to the point where she could have her first tub bath. She really liked it. She calmed right down when she was put in the warm water. It was really fun to watch all of her reactions.
Brandon took a really big step. Once again they decided to extubate him (take him off of the ventilator and put him on C-PAP). For a moment we got to see his un taped up face again. As before, the C-PAP is much bigger but it is a big step and is much better on his lungs than the ventilator.
It has been really hard work for him. It went well, but it certainly hasn’t been easy. He has pushed it a couple of times and they he has been close to returning to the ventilator. While it wouldn’t be tragic for him to be re-intubated and go back on the ventilator they are working hard to avoid it. His lungs really need some time to heal.
We sat and talked with the nurse practitioner for a long time about the approach to getting him to grow. He had x-rays taken of his lungs that didn’t look great. They believe that one of the major problems is that they have been giving him more fluids than they normally would like. They need to keep a certain amount of fluids flowing through the PIC line (a deep IV) in order to keep it in. They feed Brandon his non-food nutrients through this tube. The breast milk feedings have reached a level where, in order to keep the fluid levels where they need them they would need to reduce the amount of fluids going through the PIC line lower than what they can do. So, what this confusing explanation means is that they might take out the PIC line soon, they are increasing his feedings and lowing his overall fluids. They hope that all of this action will result in it being much easier for Brandon to breath and grow. We also asked when it would be reasonable to expect to get Brandon home. Of course, no one knows, but the nurse felt like we might want to think about November or December instead of his due date in early October. We expected this but is just sounds so far away.
As of our last call tonight he was doing well and it has now been well over 24 hours since he was taken off of the ventilator.
Oh yeah, and Amy was recently asked by a doctor if she and I where related. It was a "just checking" type of question because it could effect some test results but the interesting things is that they don't always get a "no" answer from all of the parents.
Big yawn as Brandon is getting ready. 
Look Mom- no tubes.
Friday, August 17, 2007
Making Progress
Brandon holding Dad's finger
Katelyn with her CPAP on in her Dad's arms
Brandon in his Dady's arms
Brandon
Brandon and Mom
Brandon and Mom (look at that white hair!)
The T-tube that was in Brandon's gut.
Brandon snuggled up on his belly for the first time.
Mom enjoying his contentment as much as he isKatelyn is doing great and making good progress. She is growing and is very close to 3 lbs. She was moved to a new bed and they are even talking about taking her off of the C-pap machine soon and we will be able to see a lot more of her face. She received her first shot to help treat the hemangioma on her lip. The doctors feel confident that with a couple more weekly treatments it should go away in a couple of weeks.
It will still be a while before she comes home. Her next big challenge will be working on feeding. Right now she is being fed continuously through a tube into her intestine. The process of moving her feedings to her stomach and then from a continuous feed to regular feedings and then on to nursing can take quite a while. They said that it is often difficult for most babies to be proficient and nursing before about 36 weeks (gestation age). She is only 32.5 weeks now. It also can take much longer than that, so for now we can’t really count on any dates but we are certainly happy with her progress.
Brandon had a big couple of days. On Wednesday he had a final contrast study to see how everything was moving in his bowels. It looked good and on Friday they removed his T-tube. He seems to be doing really well. Brandon appears to be very content now that it has been removed. They want to watch him to make sure he doesn’t get an infection from that area where they removed the T-tube. Once they feel confident about that, they are going to work quickly to take him off of the ventilator. It might be possible that it will only take a couple of days before they try again. They are however slowing down on the amount they are increasing his feedings each day. Nothing to worry about but he showed some signs that made them want to move cautiously. I can’t remember what his last weight was because he goes up and down all the time but he is growing and is somewhere around 2lbs. He is doing so well that the nurse told us that she was going to ignore us during our visit while she took care of the babies that needed more attention. It was nice to hear this because for a long time, he was the baby demanding a lot of attention.
One great thing for us is that now that he has his T-tube out we were able to hold him for the first time. It was a pretty exciting event for us. He also seemed to really enjoy lying on his stomach for the first time.
It will still be a while before she comes home. Her next big challenge will be working on feeding. Right now she is being fed continuously through a tube into her intestine. The process of moving her feedings to her stomach and then from a continuous feed to regular feedings and then on to nursing can take quite a while. They said that it is often difficult for most babies to be proficient and nursing before about 36 weeks (gestation age). She is only 32.5 weeks now. It also can take much longer than that, so for now we can’t really count on any dates but we are certainly happy with her progress.
Brandon had a big couple of days. On Wednesday he had a final contrast study to see how everything was moving in his bowels. It looked good and on Friday they removed his T-tube. He seems to be doing really well. Brandon appears to be very content now that it has been removed. They want to watch him to make sure he doesn’t get an infection from that area where they removed the T-tube. Once they feel confident about that, they are going to work quickly to take him off of the ventilator. It might be possible that it will only take a couple of days before they try again. They are however slowing down on the amount they are increasing his feedings each day. Nothing to worry about but he showed some signs that made them want to move cautiously. I can’t remember what his last weight was because he goes up and down all the time but he is growing and is somewhere around 2lbs. He is doing so well that the nurse told us that she was going to ignore us during our visit while she took care of the babies that needed more attention. It was nice to hear this because for a long time, he was the baby demanding a lot of attention.
One great thing for us is that now that he has his T-tube out we were able to hold him for the first time. It was a pretty exciting event for us. He also seemed to really enjoy lying on his stomach for the first time.
Even more good news….
As I was posting this I got a call from Amy. She was holding Katelyn and her mask seemed to be bugging her. You can see why if you look at the pictures above. The nurse decided it was time to downgrade her mask to a little tube in her nose. She seems happy and we can see her face much better!
I almost forgot to mention. They have tested Brandon looking for a potential long-term problem. We got the tests back yesterday and they where all negative. Of course there is always a chance of problems but this was a big relief for us. It was a really good day.
As I was posting this I got a call from Amy. She was holding Katelyn and her mask seemed to be bugging her. You can see why if you look at the pictures above. The nurse decided it was time to downgrade her mask to a little tube in her nose. She seems happy and we can see her face much better!
I almost forgot to mention. They have tested Brandon looking for a potential long-term problem. We got the tests back yesterday and they where all negative. Of course there is always a chance of problems but this was a big relief for us. It was a really good day.
Tuesday, August 14, 2007
Brandon's Photos
I feel obligated to post these photos because I told everyone that we took them. However, I think they are all really bad. While the disposable camera had a huge effect I can't blame everything on them. They are also taken from really bad angles. The lighting is bad and they are blurry. The worst part is that they don't show you how cute he really is. I promise. He is really cute.
Monday, August 13, 2007
One Month!
We have had several very busy days since my last post. I should post more often but I usually fall asleep before I get the chance. One big milestone is that on the 10th Brandon and Katelyn turned one month old. It is strange. On one hand it is weird that they are a month old yet so far from coming home. One the other hand, it seems like we have been driving back and forth from hospitals for about a year now.
Let me start by giving an update on Katelyn. Last Thursday they decided to change Katelyn to the VIP ventilator. It is similar to the Dragor that Brandon was on because it allows the baby to breath more normally. The ventilator allows the baby to breathe more on thier own. Another benefit of this ventilator is that they can more easily move the baby. This means that on her 1-month birthday Amy was able to sit in a rocking chair and hold Katelyn for the first time. I got a turn two days later.
On Friday the nurses noticed that the placement of the ventilator tube wasn’t ideal. In an attempt to better position it, they accidentally extubated her(pulled the tube out) . In the time it took to re-intubate her they noticed that she was breathing really well on her own. They even considered just putting her on a c-pap machine but decided that they had just switched her to the new ventilator and it might be too much at once.
Katelyn is a very active girl. When she gets upset she really puts up a fight. When she is on her stomach she kicks hard enough that she can actually move around her isolette. I like to think that she is crawling already. That spunk can cause trouble already. She again pulled out her ventilator tube at about midnight last night but this time they decided to leave it out and just put her on the c-pap machine. She must have been trying to give them a message because she is still doing well this morning. They just hope she doesn’t get mad soon because when she is “crying” (previously without sound) her breathing isn’t quite as good.
Brandon also has had a busy couple of days. They took him off the ventilator Friday afternoon. We got the call and rushed up to see him. We got to see his face for the first time without it being covered with tape. We also got to hear him cry for the first time. Now, I need to clarify. They often have to point out that we just heard a cry. When they have been on a ventilator for so long it is much more of a little squeak than a cry. We went up in a rush so we didn’t have our camera. We picked up a disposable camera and we hadn’t developed the pictures yet. I hope to get them developed today.
Brandon did very well. He had an x-ray that didn’t look perfect before he was removed from the ventilator. They knew it might be pushing him a little but they decided to give it a shot anyway. He did really well for about 4 hours and then he got tired. He quit breathing as well as he should and he just wasn’t exchanging gasses well enough. They put him back on the ventilator and they will let him rest and grow. They plan on trying again in about a week. They have been increasing his feedings and he is doing really well. We will just have to watch and see how well he grows and matures this week.
One day we sat and talked with Brandon’s nurse about how amazing it is that he is doing so well. She told us how she talked with the nurses that took care of Brandon for the first couple of days and they all where pretty certain that he wasn’t going to make it. While we still have a long road ahead of us, I need to remember how incredibly lucky we are that everything is going so well. Before he comes home he still needs to have the T-tube removed and two other surgeries. He needs to have a hernia fixed and have his bowls closed back up. The good news is that once he gets bigger these are not very risky surgeries. One of the major concerns will be to try and keep him infection free during all of these procedures.
Let me start by giving an update on Katelyn. Last Thursday they decided to change Katelyn to the VIP ventilator. It is similar to the Dragor that Brandon was on because it allows the baby to breath more normally. The ventilator allows the baby to breathe more on thier own. Another benefit of this ventilator is that they can more easily move the baby. This means that on her 1-month birthday Amy was able to sit in a rocking chair and hold Katelyn for the first time. I got a turn two days later.
On Friday the nurses noticed that the placement of the ventilator tube wasn’t ideal. In an attempt to better position it, they accidentally extubated her(pulled the tube out) . In the time it took to re-intubate her they noticed that she was breathing really well on her own. They even considered just putting her on a c-pap machine but decided that they had just switched her to the new ventilator and it might be too much at once.
Katelyn is a very active girl. When she gets upset she really puts up a fight. When she is on her stomach she kicks hard enough that she can actually move around her isolette. I like to think that she is crawling already. That spunk can cause trouble already. She again pulled out her ventilator tube at about midnight last night but this time they decided to leave it out and just put her on the c-pap machine. She must have been trying to give them a message because she is still doing well this morning. They just hope she doesn’t get mad soon because when she is “crying” (previously without sound) her breathing isn’t quite as good.
Brandon also has had a busy couple of days. They took him off the ventilator Friday afternoon. We got the call and rushed up to see him. We got to see his face for the first time without it being covered with tape. We also got to hear him cry for the first time. Now, I need to clarify. They often have to point out that we just heard a cry. When they have been on a ventilator for so long it is much more of a little squeak than a cry. We went up in a rush so we didn’t have our camera. We picked up a disposable camera and we hadn’t developed the pictures yet. I hope to get them developed today.
Brandon did very well. He had an x-ray that didn’t look perfect before he was removed from the ventilator. They knew it might be pushing him a little but they decided to give it a shot anyway. He did really well for about 4 hours and then he got tired. He quit breathing as well as he should and he just wasn’t exchanging gasses well enough. They put him back on the ventilator and they will let him rest and grow. They plan on trying again in about a week. They have been increasing his feedings and he is doing really well. We will just have to watch and see how well he grows and matures this week.
One day we sat and talked with Brandon’s nurse about how amazing it is that he is doing so well. She told us how she talked with the nurses that took care of Brandon for the first couple of days and they all where pretty certain that he wasn’t going to make it. While we still have a long road ahead of us, I need to remember how incredibly lucky we are that everything is going so well. Before he comes home he still needs to have the T-tube removed and two other surgeries. He needs to have a hernia fixed and have his bowls closed back up. The good news is that once he gets bigger these are not very risky surgeries. One of the major concerns will be to try and keep him infection free during all of these procedures.
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