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.
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