Kinnick 9/22/07 and 8/24/07 After second eye surgery
Carver 9/22/07 and 8/22/07 After second eye surgery
Hello,
Update on the twin’s progress…
We’re still in Detroit. Kinnick has had 3 eye surgeries. Carver has also had 3 eye surgeries and will have a 4th surgery on Wednesday. Hopefully this will be the last. We are anxious to go home, or at least back to the Wesley NICU in Wichita.
Oxygen:
Carver is not requiring much extra oxygen – it won’t be long before he can say good-bye to the nasal canula. Kinnick still requires quite a bit of help from her nasal canula. She appears to like the color of an egg plant. When she’s mad, this is her color of choice. Hopefully, pink will become the color of choice in the next couple of months.
Seizures:
Carver’s most recent EEG showed that he is no longer having seizures, so he is no longer on the maintenance drug. This means both babies are now seizure free!
Brain Hemorrhages:
Carver is starting to display some questionable behavior. He continues to be very stiff and has started turning his left hand in a circular motion and opening and closing his hand. It appears to be very rhythmic. This could be a sign of a neurological problem related to the bleeds that he suffered, or it could just be something new that he has learned to do – maybe a nervous habit. I find this odd since his grade 3 hemorrhage was on the left side of his brain, so I would have expected odd behavior on the right side of his body. We’ll continue to watch this. Could be nothing.
Hearing:
Carver doesn’t appear to show any signs that he is able to hear. However, he did respond to some loud bangs (things falling) recently. I’m not sure if he was responding to the vibration or whether he heard the noise. In the past, he didn’t respond at all. So, it’s possible that his hearing is improving. I haven’t noticed a problem with Kinnick’s hearing. She appears to hear normal. Of course, this is based on my unprofessional opinion.
Bones:
We are still being very careful with the bones. Their bone health should be improving, but is not where it should be, yet.
Feedings:
Both babies are tolerating full feeds. They are still very weak, so they have a hard time bottling all of their feeds. Carver has been doing pretty good with his feeds. He has been able to get his minimum requirement in each day. This should keep him from needing a G-Tube. Kinnick is struggling with bottle feeding. She makes an effort, but is only able to take about 1/3 of her feed via the bottle. The rest is fed to her through an NG tube in her nose. This will need to improve before she goes home, or she will require a G-Tube.
Weight:
Carver weights a little over 10 lbs. Kinnick weights a little over 11 lbs. Kinnick is finally saying good-bye to her steroids, so hopefully some of her puffy cheeks and tummy will start to go away.
Eyes:
Carver’s third eye surgery that was done on September 12th went well. The doctor was pleased with the results and doesn’t plan to do any more surgery on his right eye. Carver’s left eye did not have any bleeding after the first surgery. However, last week they noticed that fluid was collecting under the retina. They waited a week to see if the fluid would resolve. Well, it didn’t. So, this means there is a tear in the retina that is going to require a pretty extensive surgery. If this is left untreated it will eventually cause retinal detachment. The surgery will involve creating a scleral buckle (an encircling silicone band that is sewn around the circumference of the eye). The scleral buckle will create a dimple on the eye wall. This will move the wall of the eye closer to the detaching retina. This alteration seems to allow the fluid which has formed under the retina to be pumped out, allowing the retina to re-attach. It also helps repair the torn retina. In addition, they will remove the vitreous gel (fluid that makes up 2/3 of the eye) and replace it with silicone oil. The silicone oil will press or force the retina back into place. While the oil is inside the eye, the vision is extremely poor. After the retina has resealed itself against the back of the eye, a second procedure can be performed to remove the oil. It will take 3 months for the retina to heal, so it will be a while before the oil can be removed.
Kinnick’s eyes appear to be stable, so there is no plan to do any more surgery. They will continue to monitor her. She will remain in Detroit until Carver is ready to return.
Activities:
Both babies really like to be held. They’re keeping the nurses pretty busy. They want to be rocked and like listening to voices. They are both getting physical and occupation therapy regularly.
Sleeping:
On a positive note, the hospital is doing a good job of training Kinnick and Carver to sleep through the night. They are sleeping 6-8 hrs most nights.
Thanks again for your many prayers and support. I will send an update as soon as I know more.
Update on the twin’s progress…
We’re still in Detroit. Kinnick has had 3 eye surgeries. Carver has also had 3 eye surgeries and will have a 4th surgery on Wednesday. Hopefully this will be the last. We are anxious to go home, or at least back to the Wesley NICU in Wichita.
Oxygen:
Carver is not requiring much extra oxygen – it won’t be long before he can say good-bye to the nasal canula. Kinnick still requires quite a bit of help from her nasal canula. She appears to like the color of an egg plant. When she’s mad, this is her color of choice. Hopefully, pink will become the color of choice in the next couple of months.
Seizures:
Carver’s most recent EEG showed that he is no longer having seizures, so he is no longer on the maintenance drug. This means both babies are now seizure free!
Brain Hemorrhages:
Carver is starting to display some questionable behavior. He continues to be very stiff and has started turning his left hand in a circular motion and opening and closing his hand. It appears to be very rhythmic. This could be a sign of a neurological problem related to the bleeds that he suffered, or it could just be something new that he has learned to do – maybe a nervous habit. I find this odd since his grade 3 hemorrhage was on the left side of his brain, so I would have expected odd behavior on the right side of his body. We’ll continue to watch this. Could be nothing.
Hearing:
Carver doesn’t appear to show any signs that he is able to hear. However, he did respond to some loud bangs (things falling) recently. I’m not sure if he was responding to the vibration or whether he heard the noise. In the past, he didn’t respond at all. So, it’s possible that his hearing is improving. I haven’t noticed a problem with Kinnick’s hearing. She appears to hear normal. Of course, this is based on my unprofessional opinion.
Bones:
We are still being very careful with the bones. Their bone health should be improving, but is not where it should be, yet.
Feedings:
Both babies are tolerating full feeds. They are still very weak, so they have a hard time bottling all of their feeds. Carver has been doing pretty good with his feeds. He has been able to get his minimum requirement in each day. This should keep him from needing a G-Tube. Kinnick is struggling with bottle feeding. She makes an effort, but is only able to take about 1/3 of her feed via the bottle. The rest is fed to her through an NG tube in her nose. This will need to improve before she goes home, or she will require a G-Tube.
Weight:
Carver weights a little over 10 lbs. Kinnick weights a little over 11 lbs. Kinnick is finally saying good-bye to her steroids, so hopefully some of her puffy cheeks and tummy will start to go away.
Eyes:
Carver’s third eye surgery that was done on September 12th went well. The doctor was pleased with the results and doesn’t plan to do any more surgery on his right eye. Carver’s left eye did not have any bleeding after the first surgery. However, last week they noticed that fluid was collecting under the retina. They waited a week to see if the fluid would resolve. Well, it didn’t. So, this means there is a tear in the retina that is going to require a pretty extensive surgery. If this is left untreated it will eventually cause retinal detachment. The surgery will involve creating a scleral buckle (an encircling silicone band that is sewn around the circumference of the eye). The scleral buckle will create a dimple on the eye wall. This will move the wall of the eye closer to the detaching retina. This alteration seems to allow the fluid which has formed under the retina to be pumped out, allowing the retina to re-attach. It also helps repair the torn retina. In addition, they will remove the vitreous gel (fluid that makes up 2/3 of the eye) and replace it with silicone oil. The silicone oil will press or force the retina back into place. While the oil is inside the eye, the vision is extremely poor. After the retina has resealed itself against the back of the eye, a second procedure can be performed to remove the oil. It will take 3 months for the retina to heal, so it will be a while before the oil can be removed.
Kinnick’s eyes appear to be stable, so there is no plan to do any more surgery. They will continue to monitor her. She will remain in Detroit until Carver is ready to return.
Activities:
Both babies really like to be held. They’re keeping the nurses pretty busy. They want to be rocked and like listening to voices. They are both getting physical and occupation therapy regularly.
Sleeping:
On a positive note, the hospital is doing a good job of training Kinnick and Carver to sleep through the night. They are sleeping 6-8 hrs most nights.
Thanks again for your many prayers and support. I will send an update as soon as I know more.
1 comment:
This is a great start! Well, I know it's been hard for you to be here in Detroit, but I like having you here because you are one of the few people who can relate to what we are going through. See you tomorrow!
Stacy (Conner's mom)
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