Carver - Not a lot new going on with Carver. He spent most of the day on room air at 1/2 lt flow. His left eye seemed to bother him a bit today. The eye was watering quite a bit. I'm sure there was some pressure building up in the eye causing the drainage. The nurse gave him some tylenol and he was able to rest. The eye doctor will see him again on Tuesday.
Kinnick - She's still on about 30 - 40% oxygen at 2 lt flow. The increase flow doesn't seem to make a difference with her breathing. Dr. Baton thinks she has Stridor. He believes that sometime after the PDA ligation was done, scar tissue formed. The scar tissue is pressing on the vocal cord causing some paralysis. She will need to be scoped to determine if this is truly what has happened. If this is the case, it should resolve within 24 months. In the mean time, she will have difficulty breathing and feeding. She will also have a very weak cry. She doesn't make much sound - mostly just heavy breathing. It sounds like she is really working to breath. The eye doctor will also see Kinnick on Tuesday.
Sunday, September 30, 2007
Friday, September 28, 2007
September 28th, 2007
Hello,
Carver was feeling much better tonight. They have taken him off his morphine. He is just on Tylenol, now - about every 6 hours. He was stiffer then normal today. I'm not sure why - maybe from sleeping so much the last couple of days. His oxygen needs are still down. He's been eating really good for a little boy recovering from surgery. We're really proud of him. I know he's been through a lot.
Kinnick is still struggling with her breathing. Dr. Baton said that it might be related to scar tissue from her PDA Ligation. He also thinks she might have partially paralyzed vocal cords. He said it would require a special scope to see for sure, but thought she would out grow it over time. They turned her liter flow up to 2 lt tonight. I don't think it made a difference, so I'll ask if we can move it back down tomorrow. The extra flow tends to irritate her nose and dry it out.
I wanted to mention a new set of 23 weekers in the Wichita NICU. They took Kinnick and Carver's place. There names are Olivia and Logan. They have had their share of ups and downs like all 23 weekers. Tonight Logan is really struggling and could use some extra prayers. They have a blog site that you can visit at http://www.oliviaandlogan.blogspot.com/.
Thanks again for all your prayers. I miss all of you!
Carver was feeling much better tonight. They have taken him off his morphine. He is just on Tylenol, now - about every 6 hours. He was stiffer then normal today. I'm not sure why - maybe from sleeping so much the last couple of days. His oxygen needs are still down. He's been eating really good for a little boy recovering from surgery. We're really proud of him. I know he's been through a lot.
Kinnick is still struggling with her breathing. Dr. Baton said that it might be related to scar tissue from her PDA Ligation. He also thinks she might have partially paralyzed vocal cords. He said it would require a special scope to see for sure, but thought she would out grow it over time. They turned her liter flow up to 2 lt tonight. I don't think it made a difference, so I'll ask if we can move it back down tomorrow. The extra flow tends to irritate her nose and dry it out.
I wanted to mention a new set of 23 weekers in the Wichita NICU. They took Kinnick and Carver's place. There names are Olivia and Logan. They have had their share of ups and downs like all 23 weekers. Tonight Logan is really struggling and could use some extra prayers. They have a blog site that you can visit at http://www.oliviaandlogan.blogspot.com/.
Thanks again for all your prayers. I miss all of you!
Thursday, September 27, 2007
September 27th, 2007
Carver is doing better tonight. I can tell he is still in pain. They increased his morphine dose by almost 50%. However, he does appear to be doing a little better. His oxygen was down to 21% (room air) the entire time I was there tonight. He's at a 1/2 lt (blender). I'm told that this isn't providing much assistance at all. So, maybe he'll move to 1/4 lt soon! Sometimes they just go directly to room air with no cannula. We'll see what happens. I'm sure no change will take place until he recovers from surgery. He's been struggling with weight gain. He's only gained a little over a pound in the last 6-8 wks. Of course, he's had 4 surgeries, so I'm not sure what's expected. The doctors seemed a little concerned.
Kinnick is doing about the same. She's on 1 1/2 lt (blender) at about 35 - 45% oxygen. She still works pretty hard to breath. She took about 35cc via her bottle this evening (full feed is 84cc). She did pretty good. They keep taking her bottle feeds away because of how hard she's working to breath. Please pray that her lungs will improve. She hasn't made any progress over the past couple of months with her breathing.
My job has been very good to me. They have been letting me work remotely. This keeps me on the payroll and allows me to keep my insurance. I've had to take so much time of this year. The company has done more then ever expected. My co-workers (including people that don't even know me) have sent cards, phone cards, and a large amount of cash to help me. They pray for my babies and have put my babies on many prayer lists all over the world. We feel very blessed to be a part of such a wonderful group of people.
Please continue to pray for our precious little babies. They still need lots of prayers.
Kinnick is doing about the same. She's on 1 1/2 lt (blender) at about 35 - 45% oxygen. She still works pretty hard to breath. She took about 35cc via her bottle this evening (full feed is 84cc). She did pretty good. They keep taking her bottle feeds away because of how hard she's working to breath. Please pray that her lungs will improve. She hasn't made any progress over the past couple of months with her breathing.
My job has been very good to me. They have been letting me work remotely. This keeps me on the payroll and allows me to keep my insurance. I've had to take so much time of this year. The company has done more then ever expected. My co-workers (including people that don't even know me) have sent cards, phone cards, and a large amount of cash to help me. They pray for my babies and have put my babies on many prayer lists all over the world. We feel very blessed to be a part of such a wonderful group of people.
Please continue to pray for our precious little babies. They still need lots of prayers.
Wednesday, September 26, 2007
September 26th, 2007
Today is my oldest daughter, Kirsten's 18th birthday. I feel terrible not being home to celebrate with her. My son, Hayden celebrated his 2nd birthday September, 21st without me. I'm sure we will not be home in time for my son, Harrison's 10th birthday on October 2nd. However, I'm sure we will have a big party when we return home. There are so many sacrifices that we have to make. I always hope we're making the right ones.
Carver had his 4th eye surgery today. The surgery took 3 hours. They removed the vitreous gel from his left eye and replaced it with silicone oil (about 90% silicone oil and 10% saline). They also put in a buckle, using a sponge, on the back of his eye to push the back of the eye against the retina. The two of these combined are supposed to force the retina to lay flat so it can heal in place. Carver appeared to be in a lot of pain after the surgery and was still in quite a bit of pain when I left the hospital tonight at 11:00pm. They started giving him morphine every 6 hours along with tylenol every 6 hours. This way he gets something every 3 hours for pain. I felt so sorry for him. It was a completely different cry then normal. They have been able to place him face down on a little board that looks much like a small ironing board with a hole cut out for his face. It's important that he lay face down. This helps bring any blood to the front of the eye. The blood can later cause add'l scar tissue that will impact vision. It also allows the oil to do it's job of pressing against the retina. The oil seperates from the saline causing somewhat of a bubble similar to the air pocket they input in the normal vitrectomy procedure. The difference is that the air pocket lasts about a week before it's replaced with new vitreous gel, while the saline lasts much longer. This will help keep the retina in place while it heels.
Kinnick must have been having sympathy pains for brother. She had a bad day, too. Her oxygen needs were up and she refused her bottle all day. They had to do all her feeds via the NG tube. They also cancelled her PT and OTP therapy until she is feeling better. They have been trying to wean her Hydrocortizone and thought maybe they weaned too fast. So, they increased the dose to twice a day and gave her some lasics. She was doing good this evening when I left the hospital.
Carver is not gaining as much weight as they would like. After we get over this surgery, they will talk about ways to increase volume or calories.
Please pray that Carver will recover quickly and not have to suffer.
Carver had his 4th eye surgery today. The surgery took 3 hours. They removed the vitreous gel from his left eye and replaced it with silicone oil (about 90% silicone oil and 10% saline). They also put in a buckle, using a sponge, on the back of his eye to push the back of the eye against the retina. The two of these combined are supposed to force the retina to lay flat so it can heal in place. Carver appeared to be in a lot of pain after the surgery and was still in quite a bit of pain when I left the hospital tonight at 11:00pm. They started giving him morphine every 6 hours along with tylenol every 6 hours. This way he gets something every 3 hours for pain. I felt so sorry for him. It was a completely different cry then normal. They have been able to place him face down on a little board that looks much like a small ironing board with a hole cut out for his face. It's important that he lay face down. This helps bring any blood to the front of the eye. The blood can later cause add'l scar tissue that will impact vision. It also allows the oil to do it's job of pressing against the retina. The oil seperates from the saline causing somewhat of a bubble similar to the air pocket they input in the normal vitrectomy procedure. The difference is that the air pocket lasts about a week before it's replaced with new vitreous gel, while the saline lasts much longer. This will help keep the retina in place while it heels.
Kinnick must have been having sympathy pains for brother. She had a bad day, too. Her oxygen needs were up and she refused her bottle all day. They had to do all her feeds via the NG tube. They also cancelled her PT and OTP therapy until she is feeling better. They have been trying to wean her Hydrocortizone and thought maybe they weaned too fast. So, they increased the dose to twice a day and gave her some lasics. She was doing good this evening when I left the hospital.
Carver is not gaining as much weight as they would like. After we get over this surgery, they will talk about ways to increase volume or calories.
Please pray that Carver will recover quickly and not have to suffer.
September 25th, 2007
The eye doctor seen both of the babies today. Kinnick's eyes both look really good, or as good as expected. Carver's remained the same. He will have surgery tomorrow at 10:00am.
Please pray that Carver's surgery goes well and that he recovers quickly.
Please pray that Carver's surgery goes well and that he recovers quickly.
Tuesday, September 25, 2007
September 24th, 2007
Hello again,
The eye doctor will see Kinnick and Carver tomorrow morning. I'm hoping that Kinnick's eyes still look good and Carver is ready for his 4th eye surgery tomorrow.
I wanted to mention all of the nice people that i've met here at the William Beaumont Hospital in Royal Oak. They're like my second family. I've gotten to know Stacy and David who also had 23 week twins - Conner and Braeden. Stacy invited me to see Conner the other day. They lost Braeden a few weeks after he was born. Seeing him brought back so many memories. I also met another couple, Liz and Mark. They were at the hospital with their little guy - Parker. He was also here for eye surgery. He was a 27 or 28 weeker. I've met a couple of very nice RN's - Sue, Peggy, Deb, Amy, and many more. Everyone has been so nice. Sue has even gone to dinner with me a couple of times. Talking to other moms and dads in the NICU helps cope with all of the struggles. There is something comforting about talking to others in the same situation.
The eye doctor will see Kinnick and Carver tomorrow morning. I'm hoping that Kinnick's eyes still look good and Carver is ready for his 4th eye surgery tomorrow.
I wanted to mention all of the nice people that i've met here at the William Beaumont Hospital in Royal Oak. They're like my second family. I've gotten to know Stacy and David who also had 23 week twins - Conner and Braeden. Stacy invited me to see Conner the other day. They lost Braeden a few weeks after he was born. Seeing him brought back so many memories. I also met another couple, Liz and Mark. They were at the hospital with their little guy - Parker. He was also here for eye surgery. He was a 27 or 28 weeker. I've met a couple of very nice RN's - Sue, Peggy, Deb, Amy, and many more. Everyone has been so nice. Sue has even gone to dinner with me a couple of times. Talking to other moms and dads in the NICU helps cope with all of the struggles. There is something comforting about talking to others in the same situation.
Monday, September 24, 2007
September 23rd, 2007
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.
September 11th, 2007
Hello,
Update on the twin’s progress in Detroit…
It’s been a very long month. We arrived in Detroit Tuesday, August 14th. The babies eyes were examined visually the following day. The visual exam showed that all 4 eyes would require surgery. The extent of the surgery would not be known until a more extensive exam was performed under anesthesia. The more extensive exam and Surgery was performed on Friday, August 17th. During the exam, it was determined that the retina was starting to detach from all 4 eyes. The right eye appeared to be less damaged (both babies). So, they corrected the right eye for both babies Friday, August 17th. They do surgery on the best eye first. The surgery is very hard on the babies in their condition. They are put back on the ventilator for surgery and have to work to get their bodies back to the performance they were at prior to surgery. Future surgeries can not be performed until the baby is deemed stable enough to undergo another surgery. It may take a while for the babies to recovery from surgery allowing the eye disease to continue to worsen in the eye that has not been corrected. So, correcting the better eye makes the most sense. Carver handled the first surgery without any set backs. Surgery on his left eye was performed on Wednesday, August 22nd. Kinnick suffered some set backs, so surgery for her left eye was performed on Friday, August 24th. Due to the time lost, her retina completely detached in her left eye. The surgery was a little more extensive including removal of the lens and part of the Iris (an oversized colored contact lens will eventually take the place of the missing lens and iris). I am told that if all is successful, she still has a chance of receiving 20/60 vision in her left eye. If all goes well for the other 3 eyes, they have a chance of receiving 20/40 vision in those eyes. Kinnick handled the second surgery with no set backs. The Retinologists come to see the babies once a week (Tuesdays). This is to determine whether the eyes are healing properly. Unfortunately, the only eye that is healing properly is Carver’s left eye. Carver’s right eye has quite a bit of blood pooling in front of the retina. This prevents him from being able to see out of this eye. If the blood does not dissolve within 6-8 weeks, it will cause add’l scar tissue resulting in poor vision or lost vision. The Retinologist does not believe the blood will resolve in the next couple of weeks. Therefore, Carver will have surgery on his right eye Wednesday, September 12th to wash the blood from the eye (basically repeating the previous surgery). Kinnick has blood pooling in both eyes (more in her left eye). The Retinologists believe that it is still possible for the blood to dissolve on its own (doesn’t appear to be as thick as Carver’s). They are watching her eyes over the next 2 weeks. So, just a lot of waiting and praying. The babies are in the hands of the best Retinologists in the world, so we are confident that our outcome is the best possible. People come here from all over the world to have these doctors operate on their preemie babies.
Outside of the eyes, the babies continue to grow. Carver is now 9 lb 9 oz. Kinnick is now 10 lb 10 oz. We’re still working on getting both babies to bottle feed all of their feeds. Carver does pretty good with his feeds, but tires out quickly. Kinnick is still taking the majority of her feeds via the NG tube in her nose – mostly because of the amount of oxygen that she is receiving. Carver looks and acts so much like a newborn baby. He will quickly be released to go home once we are transported back to the Wichita hospital. Kinnick still requires quite a bit of oxygen, so until she gets a little bigger and has more lung tissue growth, she’ll have to remain in the hospital. However, I wouldn’t expect that to take much longer – she’s getting pretty big.
Our family is doing well. We have had a lot of help from family and friends – many of you. It’s hard being apart, but we all agree it’s for a good cause. I’m torn between being in Detroit with the babies and being in Wichita with the rest of my family. However, I’m comforted knowing that my children are at home with their father and Kinnick and Carver have their mother. Everyone has someone. In addition, I have made many new NICU friends who have been very supportive.
I know that Gwen sent a Thank You on my behalf for all of the wonderful cards, money, and the phone card. I just want you to know that we appreciate everything that all of you have done for us – you’ve done so much. Thank you.
Please continue to pray with us. I will send an update as soon as I know more.
Update on the twin’s progress in Detroit…
It’s been a very long month. We arrived in Detroit Tuesday, August 14th. The babies eyes were examined visually the following day. The visual exam showed that all 4 eyes would require surgery. The extent of the surgery would not be known until a more extensive exam was performed under anesthesia. The more extensive exam and Surgery was performed on Friday, August 17th. During the exam, it was determined that the retina was starting to detach from all 4 eyes. The right eye appeared to be less damaged (both babies). So, they corrected the right eye for both babies Friday, August 17th. They do surgery on the best eye first. The surgery is very hard on the babies in their condition. They are put back on the ventilator for surgery and have to work to get their bodies back to the performance they were at prior to surgery. Future surgeries can not be performed until the baby is deemed stable enough to undergo another surgery. It may take a while for the babies to recovery from surgery allowing the eye disease to continue to worsen in the eye that has not been corrected. So, correcting the better eye makes the most sense. Carver handled the first surgery without any set backs. Surgery on his left eye was performed on Wednesday, August 22nd. Kinnick suffered some set backs, so surgery for her left eye was performed on Friday, August 24th. Due to the time lost, her retina completely detached in her left eye. The surgery was a little more extensive including removal of the lens and part of the Iris (an oversized colored contact lens will eventually take the place of the missing lens and iris). I am told that if all is successful, she still has a chance of receiving 20/60 vision in her left eye. If all goes well for the other 3 eyes, they have a chance of receiving 20/40 vision in those eyes. Kinnick handled the second surgery with no set backs. The Retinologists come to see the babies once a week (Tuesdays). This is to determine whether the eyes are healing properly. Unfortunately, the only eye that is healing properly is Carver’s left eye. Carver’s right eye has quite a bit of blood pooling in front of the retina. This prevents him from being able to see out of this eye. If the blood does not dissolve within 6-8 weeks, it will cause add’l scar tissue resulting in poor vision or lost vision. The Retinologist does not believe the blood will resolve in the next couple of weeks. Therefore, Carver will have surgery on his right eye Wednesday, September 12th to wash the blood from the eye (basically repeating the previous surgery). Kinnick has blood pooling in both eyes (more in her left eye). The Retinologists believe that it is still possible for the blood to dissolve on its own (doesn’t appear to be as thick as Carver’s). They are watching her eyes over the next 2 weeks. So, just a lot of waiting and praying. The babies are in the hands of the best Retinologists in the world, so we are confident that our outcome is the best possible. People come here from all over the world to have these doctors operate on their preemie babies.
Outside of the eyes, the babies continue to grow. Carver is now 9 lb 9 oz. Kinnick is now 10 lb 10 oz. We’re still working on getting both babies to bottle feed all of their feeds. Carver does pretty good with his feeds, but tires out quickly. Kinnick is still taking the majority of her feeds via the NG tube in her nose – mostly because of the amount of oxygen that she is receiving. Carver looks and acts so much like a newborn baby. He will quickly be released to go home once we are transported back to the Wichita hospital. Kinnick still requires quite a bit of oxygen, so until she gets a little bigger and has more lung tissue growth, she’ll have to remain in the hospital. However, I wouldn’t expect that to take much longer – she’s getting pretty big.
Our family is doing well. We have had a lot of help from family and friends – many of you. It’s hard being apart, but we all agree it’s for a good cause. I’m torn between being in Detroit with the babies and being in Wichita with the rest of my family. However, I’m comforted knowing that my children are at home with their father and Kinnick and Carver have their mother. Everyone has someone. In addition, I have made many new NICU friends who have been very supportive.
I know that Gwen sent a Thank You on my behalf for all of the wonderful cards, money, and the phone card. I just want you to know that we appreciate everything that all of you have done for us – you’ve done so much. Thank you.
Please continue to pray with us. I will send an update as soon as I know more.
August 31, 2007
I want to thank everyone who contributed to the donations that were sent to me last week, to help offset some of the expenses I'm incurring here, as well as the nice notes that were sent in the cards. This was very thoughtful, and very much appreciated. I had been told that something was being sent to me, so I had envisioned a care package full of junk food. I was initially a little disappointed when the package arrived and it wasn't a box, but instead a big envelope, that obviously didn't contain any junk food! :-) Seriously, it means a lot to me to know that so many people are helping me get through this. I also want to thank everyone for their prayers.
Both babies are doing pretty well, and they're basically just waiting until the eye surgeons are ready to release them back to Wichita. (The same surgeon didn't perform all 4 of the surgeries.)
One of the eye surgeons came by last Tuesday. The blood in Carver's eye that had surgery first seems to be going away. There didn't seem to be any blood in Carver's second eye, and the surgeon was really pleased with that.
Kinnick didn't have any blood left in the eye that she had surgery on first. The eye surgeon didn't offer much information about Kinnick's second eye, but I thought the doctor looked frustrated. The doctor's frustration was likely due to the fact that the air pocket had already dissolved. They don't want the air pocket to go away so quickly, since it helps hold everything in place. However, with the type of surgery Kinnick had to have on her second eye, they don't have much room for the air pocket. Therefore, it often doesn't last as long as it does with the type of surgery that was performed on the other 3 eyes.
Kinnick hasn't had any more apnea spells. She was taken off CPAP and put on nasal canula last Monday the 27th. She's been doing well on nasal canula. Since she is off CPAP, they've started trying to bottle feed her some again.
Carver has been doing well with his bottle feeding.
I was finally able to get a physical therapist and occupational therapist here to come see the twins. They have only done their assessment, and haven't started working with them yet. The therapist did provide some written information that I think will be helpful. It has some general guidelines as to what the babies should be doing at various ages, things to do to encourage them to develop their various motor skills, recommended toys to help them develop, how to tell if they start regressing on certain motor skills etc.
The other eye surgeon that performed Kinnick's second surgery (Dr. Micheal Trese) will see Carver and Kinnick again this Tuesday, September 4th. I'm really hoping that he will tell us that they can go back to Wichita, and then hopefully arrangements can be made to fly us back on Wednesday. It will only be a week and a half since Kinnick's second surgery by then, and the surgeon had mentioned that he would want Kinnick there for 2 weeks after her last surgery, but hopefully he will decide that they can go ahead and come home. The belief is that they'll be flown back to Wesley, and then the next steps will be determined.
As far as their eyes, the eye doctor in Wichita will check their eyes every week, for at least the next 5 weeks.
It looks like the hospital in Michigan is going to want Kinnick to come back for a check up in a couple of months. Kinnick will need to be admitted at least overnight. She might have to stay another week if they determine that another surgery is necessary, but of course we'll hope that won't become necessary.
So, hopefully this chapter in Michigan is almost over. As of Tuesday September 4th, we will have been in Michigan for 3 weeks now! It will be so nice to be back for a number of reasons. It will especially be great to get to see my other kids and for them to get to see me.
Both babies are doing pretty well, and they're basically just waiting until the eye surgeons are ready to release them back to Wichita. (The same surgeon didn't perform all 4 of the surgeries.)
One of the eye surgeons came by last Tuesday. The blood in Carver's eye that had surgery first seems to be going away. There didn't seem to be any blood in Carver's second eye, and the surgeon was really pleased with that.
Kinnick didn't have any blood left in the eye that she had surgery on first. The eye surgeon didn't offer much information about Kinnick's second eye, but I thought the doctor looked frustrated. The doctor's frustration was likely due to the fact that the air pocket had already dissolved. They don't want the air pocket to go away so quickly, since it helps hold everything in place. However, with the type of surgery Kinnick had to have on her second eye, they don't have much room for the air pocket. Therefore, it often doesn't last as long as it does with the type of surgery that was performed on the other 3 eyes.
Kinnick hasn't had any more apnea spells. She was taken off CPAP and put on nasal canula last Monday the 27th. She's been doing well on nasal canula. Since she is off CPAP, they've started trying to bottle feed her some again.
Carver has been doing well with his bottle feeding.
I was finally able to get a physical therapist and occupational therapist here to come see the twins. They have only done their assessment, and haven't started working with them yet. The therapist did provide some written information that I think will be helpful. It has some general guidelines as to what the babies should be doing at various ages, things to do to encourage them to develop their various motor skills, recommended toys to help them develop, how to tell if they start regressing on certain motor skills etc.
The other eye surgeon that performed Kinnick's second surgery (Dr. Micheal Trese) will see Carver and Kinnick again this Tuesday, September 4th. I'm really hoping that he will tell us that they can go back to Wichita, and then hopefully arrangements can be made to fly us back on Wednesday. It will only be a week and a half since Kinnick's second surgery by then, and the surgeon had mentioned that he would want Kinnick there for 2 weeks after her last surgery, but hopefully he will decide that they can go ahead and come home. The belief is that they'll be flown back to Wesley, and then the next steps will be determined.
As far as their eyes, the eye doctor in Wichita will check their eyes every week, for at least the next 5 weeks.
It looks like the hospital in Michigan is going to want Kinnick to come back for a check up in a couple of months. Kinnick will need to be admitted at least overnight. She might have to stay another week if they determine that another surgery is necessary, but of course we'll hope that won't become necessary.
So, hopefully this chapter in Michigan is almost over. As of Tuesday September 4th, we will have been in Michigan for 3 weeks now! It will be so nice to be back for a number of reasons. It will especially be great to get to see my other kids and for them to get to see me.
August 26th, 2007
Kinnick had her second vitrectomy surgery on Friday morning for her left eye. It was not good. The retina had completly detached. They had to remove the lens and part of the iris. We will likey be here 2 more weeks.
Since they had to remove the lens from Kinnick's left eye, she will be fitted for a contact lens within a couple of months, in order to try to get the contact lens to perform the functions that her eye's lens would have performed. Hopefully the brain will then try to use both eyes, instead of only working with the better eye. The contact will be larger than the ones that adults wear. Because part of the iris was removed, her eyes will be different colors. The contact lens will be colored though, so this shouldn't be noticeable when the lens is in. I heard that contacts work okay on babies (she'll likely get the kind that you leave in for a week.) Apparently once the babies are used to them, they even get upset when the contacts are taken out, since they can't see as well then. If Kinnick doesn't like the contact lens, glasses would be another option.
After her surgery, it would have been best if Kinnick could have been face down for the first 24 hours, so that any blood would come forward, lessening the risk of scar tissue. Unfortunately, since Kinnick was on CPAP, that wasn't possible. Hopefully that won't end up affecting the success of the surgery.
They won't really know for 6 months or so how well all of the eyes are doing. However, since Carver's eye surgeries, he seems to be looking everywhere and checking out everything, which is obviously a great sign!
The babies will be 5 months old on Wednesday! Carver currently weighs 8 lb. 15 oz. and Kinnick weighs 10 lb. 2 oz.
The babies' bones are still fragile and they have multiple fractures that are healing. Kinnick's humerus (big arm bone up by her shoulder) has a fracture, and she also has fractures in her hips and ribs. Carver doesn't have as many fractures, probably since he has been on better nutrition longer.
For the most part, Carver is acting like a normal baby, although I can tell that he isn't hearing. Carver should be ready to go home soon! I am definitely ready for him to get out of the hospital and feel comfortable that I can handle his needs.
Kinnick won't be ready quite as soon. Kinnick hasn't had any more apnea spells since last Thursday, but she still gets worked up and when she gets mad, she decides to hold her breath. Kinnick will also need to get back to bottle feeding, after she gets off CPAP and back on nasal canula full time. Kinnick has had several good days in a row, which is especially impressive since she just had surgery on Friday.
At the hospital in Detroit, they have a family room outside of the NICU, which provides a lot more opportunities to visit with other parents of preemies. (Wesley doesn't have this.) This has been a rewarding experience. I have been able to listen to what other preemies and parents have gone through and we've all been able to compare notes regarding how different hospitals handle various items. I am also able to share experiences that me and the babies have been through, which has provided a great deal of support and encouragement to other parents.
I'm glad we made the trip to Detroit, for the sake of the babies' eyes, but can't wait to get back to Wichita. Hopefully that will occur sometime in the next week and a half.
Since they had to remove the lens from Kinnick's left eye, she will be fitted for a contact lens within a couple of months, in order to try to get the contact lens to perform the functions that her eye's lens would have performed. Hopefully the brain will then try to use both eyes, instead of only working with the better eye. The contact will be larger than the ones that adults wear. Because part of the iris was removed, her eyes will be different colors. The contact lens will be colored though, so this shouldn't be noticeable when the lens is in. I heard that contacts work okay on babies (she'll likely get the kind that you leave in for a week.) Apparently once the babies are used to them, they even get upset when the contacts are taken out, since they can't see as well then. If Kinnick doesn't like the contact lens, glasses would be another option.
After her surgery, it would have been best if Kinnick could have been face down for the first 24 hours, so that any blood would come forward, lessening the risk of scar tissue. Unfortunately, since Kinnick was on CPAP, that wasn't possible. Hopefully that won't end up affecting the success of the surgery.
They won't really know for 6 months or so how well all of the eyes are doing. However, since Carver's eye surgeries, he seems to be looking everywhere and checking out everything, which is obviously a great sign!
The babies will be 5 months old on Wednesday! Carver currently weighs 8 lb. 15 oz. and Kinnick weighs 10 lb. 2 oz.
The babies' bones are still fragile and they have multiple fractures that are healing. Kinnick's humerus (big arm bone up by her shoulder) has a fracture, and she also has fractures in her hips and ribs. Carver doesn't have as many fractures, probably since he has been on better nutrition longer.
For the most part, Carver is acting like a normal baby, although I can tell that he isn't hearing. Carver should be ready to go home soon! I am definitely ready for him to get out of the hospital and feel comfortable that I can handle his needs.
Kinnick won't be ready quite as soon. Kinnick hasn't had any more apnea spells since last Thursday, but she still gets worked up and when she gets mad, she decides to hold her breath. Kinnick will also need to get back to bottle feeding, after she gets off CPAP and back on nasal canula full time. Kinnick has had several good days in a row, which is especially impressive since she just had surgery on Friday.
At the hospital in Detroit, they have a family room outside of the NICU, which provides a lot more opportunities to visit with other parents of preemies. (Wesley doesn't have this.) This has been a rewarding experience. I have been able to listen to what other preemies and parents have gone through and we've all been able to compare notes regarding how different hospitals handle various items. I am also able to share experiences that me and the babies have been through, which has provided a great deal of support and encouragement to other parents.
I'm glad we made the trip to Detroit, for the sake of the babies' eyes, but can't wait to get back to Wichita. Hopefully that will occur sometime in the next week and a half.
Sunday, September 23, 2007
August 24th, 2007
Carver had vitrectomy surgery on his second eye (left) on Wednesday. The surgery went well. The surgeries have only been taking about an hour, which is different from the 3 - 6 hours that we had originally been told that they would take. The outcome of this type of surgery ranges anywhere from 20/40 vision to no vision.
Carver seems to be bouncing back well from surgery. He was kind of crabby today, probably due to trying to get his digestive system going again after the anesthesia. He has been getting all of his feedings via bottles.
Carver will probably be cleared for release next Wednesday (29th.) Originally we had been told that it would take 2 weeks from surgery for the air pockets in their eyes to dissolve, but now she is being told that it should only take a week. The babies can't fly until the air pockets dissolve. Kinnick won't be ready for release as soon as Carver will be, since she hasn't had surgery on her second eye yet, but we believe they'll be willing to keep Carver until Kinnick is ready to be released.
Kinnick unfortunately has been struggling more. Saturday night Kinnick developed an infection and had a high temperature for a couple of days. The infection has caused her breathing to become much more labored and she has required extra support breathing. She has been jumping between CPAP and nasal canula. She also had two apnea spells today where she quit breathing, which of course was very scary. They don't really know why this happened. Because she has been on CPAP, she is not getting any of her feeds via bottles.
She also ended up with IV infiltrate around one of her ankles, which is a bad chemical burn caused by the IV not being inserted correctly.
Because of the infection she developed, Kinnick was not able to have her second eye surgery on Wednesday. It is tentatively scheduled for Friday morning (24th), but not sure if they will still do it on Friday, after today's two apnea spells, or if they will decide to wait until Monday for the eye surgery. The retina is completely detached on this eye (left). Kinnick will hopefully be cleared for release from the Michigan hospital one week after her surgery.
Both babies have had a few bleeds in their eyes after surgery. Carver has had more (6 drops) than Kinnick (1 drop), which is the opposite of what they expected. The blood usually gets absorbed on its own, but it can cause scar tissue, so they're monitoring this. After the babies come home, it is possible that they might have more scar tissue develop. If it does, they might have to go back to Michigan.
The transfer to Michigan has been a big adjustment. In addition to the doctors and nurses not being familiar with the babies like the ones at Wesley had become, they do things differently there. They don't believe in sedating the babies, don't believe in using suppositories, don't use the nasal canual in the same way (here they would get all oxygen, there they get some air mixed in also) etc. So the babies are having to adjust, without any weaning period to get used to these differences. The nurses there aren't nearly as concerned about cleanliness as the Wesley nurses are. Although we have met some nice nurses, there are others that don't seem to pay close enough attention to what is going on with the babies. We also mainly deal with the nurse practitioners and talk very little to the neonatologists, which we spoke to frequently at Wesley.
I am staying at a hotel and take a taxi to and from the hospital. I go to the hospital in the morning and stay there until about 7:00 p.m. each night.
It's been a very stressful and frustrating time, but we don't regret going there so the babies could have the eye surgeries.
I am very anxious to get back home to the rest of my family, my own house, Wesley hospital, and having fewer out of pocket expenses. Medicaid says they will possilby pick up some of the hotel expense and $10/day for food.
Carver will likely be ready to go home once the babies are transported back to Wichita, and I feel comfortable with him going home, but Kinnick will likely need a little more time at Wesley.
Your continued thoughts and prayers are appreciated. It's been a long 5 months.
Carver seems to be bouncing back well from surgery. He was kind of crabby today, probably due to trying to get his digestive system going again after the anesthesia. He has been getting all of his feedings via bottles.
Carver will probably be cleared for release next Wednesday (29th.) Originally we had been told that it would take 2 weeks from surgery for the air pockets in their eyes to dissolve, but now she is being told that it should only take a week. The babies can't fly until the air pockets dissolve. Kinnick won't be ready for release as soon as Carver will be, since she hasn't had surgery on her second eye yet, but we believe they'll be willing to keep Carver until Kinnick is ready to be released.
Kinnick unfortunately has been struggling more. Saturday night Kinnick developed an infection and had a high temperature for a couple of days. The infection has caused her breathing to become much more labored and she has required extra support breathing. She has been jumping between CPAP and nasal canula. She also had two apnea spells today where she quit breathing, which of course was very scary. They don't really know why this happened. Because she has been on CPAP, she is not getting any of her feeds via bottles.
She also ended up with IV infiltrate around one of her ankles, which is a bad chemical burn caused by the IV not being inserted correctly.
Because of the infection she developed, Kinnick was not able to have her second eye surgery on Wednesday. It is tentatively scheduled for Friday morning (24th), but not sure if they will still do it on Friday, after today's two apnea spells, or if they will decide to wait until Monday for the eye surgery. The retina is completely detached on this eye (left). Kinnick will hopefully be cleared for release from the Michigan hospital one week after her surgery.
Both babies have had a few bleeds in their eyes after surgery. Carver has had more (6 drops) than Kinnick (1 drop), which is the opposite of what they expected. The blood usually gets absorbed on its own, but it can cause scar tissue, so they're monitoring this. After the babies come home, it is possible that they might have more scar tissue develop. If it does, they might have to go back to Michigan.
The transfer to Michigan has been a big adjustment. In addition to the doctors and nurses not being familiar with the babies like the ones at Wesley had become, they do things differently there. They don't believe in sedating the babies, don't believe in using suppositories, don't use the nasal canual in the same way (here they would get all oxygen, there they get some air mixed in also) etc. So the babies are having to adjust, without any weaning period to get used to these differences. The nurses there aren't nearly as concerned about cleanliness as the Wesley nurses are. Although we have met some nice nurses, there are others that don't seem to pay close enough attention to what is going on with the babies. We also mainly deal with the nurse practitioners and talk very little to the neonatologists, which we spoke to frequently at Wesley.
I am staying at a hotel and take a taxi to and from the hospital. I go to the hospital in the morning and stay there until about 7:00 p.m. each night.
It's been a very stressful and frustrating time, but we don't regret going there so the babies could have the eye surgeries.
I am very anxious to get back home to the rest of my family, my own house, Wesley hospital, and having fewer out of pocket expenses. Medicaid says they will possilby pick up some of the hotel expense and $10/day for food.
Carver will likely be ready to go home once the babies are transported back to Wichita, and I feel comfortable with him going home, but Kinnick will likely need a little more time at Wesley.
Your continued thoughts and prayers are appreciated. It's been a long 5 months.
August 17th, 2007
Carver and Kinnick each had surgery on one of their eyes on today. The retinas had started to detach on both babies. They each had surgery (vitrectomy) on their "better" eye, in order to try to take care of that eye first. The surgeries each took about an hour. They always put the babies on ventilators here at William Beaumont Hospital in Royal Oak.
After surgery, they both got off their ventilators quickly, although their oxygen needs were high. They're working to wean them back to where they were before the surgeries.
The doctors were pleased with the surgeries, but won't know for two weeks how successful they were.
The babies will each also have surgery on their other eye, possibly on Wednesday.
They put an air pocket in the eye to keep the retina secure. It will take a week for the air pockets to dissolve on its own. The babies won't be able to come home until the air pockets dissolve. So the sooner they have surgery on their other eyes, the sooner they'll be able to come home.
There is a risk of blood getting in their eyes, which would require additional surgery. Kinnick is at greater risk of this, since she has more vascular activity in her eyes. They didn't see any signs during surgery of this, but it could still occur after surgery. Hopefully it won't.
Please continue to keep Carver, Kinnick, and the rest of our family in your thoughts and prayers.
After surgery, they both got off their ventilators quickly, although their oxygen needs were high. They're working to wean them back to where they were before the surgeries.
The doctors were pleased with the surgeries, but won't know for two weeks how successful they were.
The babies will each also have surgery on their other eye, possibly on Wednesday.
They put an air pocket in the eye to keep the retina secure. It will take a week for the air pockets to dissolve on its own. The babies won't be able to come home until the air pockets dissolve. So the sooner they have surgery on their other eyes, the sooner they'll be able to come home.
There is a risk of blood getting in their eyes, which would require additional surgery. Kinnick is at greater risk of this, since she has more vascular activity in her eyes. They didn't see any signs during surgery of this, but it could still occur after surgery. Hopefully it won't.
Please continue to keep Carver, Kinnick, and the rest of our family in your thoughts and prayers.
August 13, 2007
Quickly…
Just to let everyone know. I will be heading to Detroit with both babies tomorrow morning at 8am. They will be transported by air with medical staff. I will be on the flight with them. We will be at the Beaumont Hospital in Royal Oaks, MI. Dr. Michael Trese’s team will be seeing the babies. I am told that people are sent to him from all over the world. He has specialized in Vetreo-Retinal Ophthalmology for 31 years. Please pray for a safe flight for all and that Dr. Trese’s team is able to save Kinnick and Carver’s vision. Also, I am told that many times the surgery causes preemies like Kinnick and Carver to return to ventilators. Please pray that they bounce back quickly. I am told to expect to be in Detroit for several weeks. I’ll do my best to keep in touch.
Just to let everyone know. I will be heading to Detroit with both babies tomorrow morning at 8am. They will be transported by air with medical staff. I will be on the flight with them. We will be at the Beaumont Hospital in Royal Oaks, MI. Dr. Michael Trese’s team will be seeing the babies. I am told that people are sent to him from all over the world. He has specialized in Vetreo-Retinal Ophthalmology for 31 years. Please pray for a safe flight for all and that Dr. Trese’s team is able to save Kinnick and Carver’s vision. Also, I am told that many times the surgery causes preemies like Kinnick and Carver to return to ventilators. Please pray that they bounce back quickly. I am told to expect to be in Detroit for several weeks. I’ll do my best to keep in touch.
August 11th, 2007
Hello,
Update on the twin’s progress…
Oxygen:
Kinnick and Carver are both getting extra oxygen via nasal canula. Carver is getting 200 – 250cc of extra oxygen. Kinnick is getting about 500cc of extra oxygen.
Seizures:
Carver is still on a maintenance drug to prevent seizures (however, they are not seeing many seizures based on a current EEG). Kinnick’s most recent EEG showed that she is no longer having seizures, so we are weaning her off the maintenance drug. It’s nice to be rid of one more drug!
Brain Hemorrhages:
Carver had his MRI. They were able to prove that the Hemorrhage that he suffered was not a Grade 4. Instead, it was a Grade 3. The difference is that a Grade 4 would indicate that the Hemorrhage went beyond the ventricle walls causing Brain tissue damage. His Grade 3 Hemorrhage stopped within the ventricle wall. The MRI did show the ventricles as still being larger then normal. I’m told this will not cause any additional problems – cerebral fluid is circulating like it is supposed to – no blockage. However, due to the Hemorrhages (he also suffered a Grade 2 Hemorrhage), the cerebral stem is smaller then normal (this will continue to grow as Carver grows). This will impact his Gross motor skills – meaning that he will show delays crawling, walking, riding a bike (balance), throwing a ball, etc. I’m told he is capable of doing these things, but these things will take longer then normal to learn. In addition, the brain (overall) does show some shrinkage. The brain will continue to grow as Carver grows. This will impact Carver’s fine motor skills – meaning that he will show delays in reading, writing, learning, etc. I’m told he is capable of doing these things, but they will also take longer to learn. The neurologist said that if he had to rate Carver’s damage or delays, he would say somewhere between MODERATE/SEVERE (scale being MILD/MODERATE/SEVERE/PROFOUND). So, it could be better and it could be worse. Overall, we were very pleased with their findings. Carver is already getting Physical Therapy (gross motor skills) and Occupational Therapy (fine motor skills). They will add Speech Therapy later. Kinnick is scheduled to receive her MRI on Monday. She suffered a Grade 1 and Grade 2 Hemorrhage at birth. I am told that Grade 1 and 2 Hemorrhages due not typically cause any lasting problems, so we are expecting good results.
Hearing:
Carver had his hearing tested (via BAER test). The test indicated that Carver has a severe hearing loss. Carver will be fitted for hearing aides (to amplify sound) right away. While these may not prove to help, we are required to try these for 6 months in order to qualify for Cochlear implants. I’ve heard many success stories about this implant. One example can be seen/heard at the following website http://www.laneyjane.com/AudioClips.htm. Kinnick had her hearing tested (via BAER test). The test indicated a MILD/MODERATE hearing loss. I have not heard the course of action for her, yet. Her hearing was tested late Friday and I have not had an opportunity to speak to the ENT or Audiologist.
Eyes:
Kinnick’s eyes have started getting worse – the retina is starting to detach. Carver’s eyes are still active, but don’t show much change. The eye doctor has recommended that both babies go to Detroit to be evaluated by an ROP specialist. We will know more on Monday.
Bones:
Both Kinnick and Carver have been diagnosed with Rickets. This is a brittle bone disease. Their bones can break very easy. Tthis should get better once they have been on full feeds for a while and are getting good nutrition. Carver is showing improvement. Kinnick will take longer to get over the problem since she hasn’t been on full feeds long.
Feedings:
Both babies are tolerating full feeds. They are still very weak, so they have a hard time bottling all of their feeds. The doctor has recommended G-tubes for both babies. The G-tube will be surgically inserting into the stomach and will have a tube (Mickey button (sp)) that will allow me to push (directly into the stomach) any fluids that they are not able to get orally. I will be able to bottle as much of the feeds as possible – this just gives me the ability to insure the babies get proper nutrition and will allow them to go home vs staying in the hospital until they are strong enough to take all feeds (which could be a very long time). This will also help during the coming cold season when the babies lungs are not strong enough to tolerate a cold and still have the energy to feed – keeping us out of the hospital due to dehydration which is common in micro-preemies.
Weight:
Carver weights 8 lbs 7 oz. Kinnick weights 9 lbs 7 oz. While Kinnick’s weight has not gone down much, she has lost at least a pound of fluid. She still has more fluid to lose, but it appears to be dropping. Hopefully, both babies will weight about the same in the next week or two.
Activities:
Both babies are starting to act more like full term newborns. The babies have also started getting to know each other – they are now sharing a baby bed. Kinnick appears to be a little jealous of Carver’s hair – I have caught her with her hand in his hair ready to pull. She doesn’t have much hair of her own. Carver isn’t sure what to think of his sister, but doesn’t like sharing rocker time with her. He wiggles and cries until someone else takes her, so he can have the entire rocker to himself. He’s in for a surprise when he finally figures out that he is not an only child (1 of 7). However, he is the baby by about 45 minutes.
I always save the big news for last….. If Carver does not go to Detroit on Monday or Tuesday, he will be sent to Mother/Baby where I will stay with him 24/7 (for at least 3 nights) to learn his machines (Oxygen, Apnea Monitor (in case he stops breathing or his heart rate drops too low), and G-tube feeding. The G-tube has not been inserted, yet. This may delay his release. They do not want to put the G-tube in until we are sure that he is not going to Detroit. If we go to Detroit, they will have the G-tube surgically placed if/when they operate on his eyes. They don’t want to put him under any more then necessary. After I (and the doctors) am comfortable that I can handle Carver and his machines, he will be released to go home. So, you will not see me in the office on Monday. I will either be on my way to Detroit or in a Mother/Baby room at Wesley Hospital. Kinnick should be able to come home shortly after Carver. Everything is dependent on the eye surgery in Detroit.
I will be checking email from home as time permits and will continue to keep everyone posted.
Thank you for all of your kind words, thoughts, and prayers! Thank God for his many blessings!
Update on the twin’s progress…
Oxygen:
Kinnick and Carver are both getting extra oxygen via nasal canula. Carver is getting 200 – 250cc of extra oxygen. Kinnick is getting about 500cc of extra oxygen.
Seizures:
Carver is still on a maintenance drug to prevent seizures (however, they are not seeing many seizures based on a current EEG). Kinnick’s most recent EEG showed that she is no longer having seizures, so we are weaning her off the maintenance drug. It’s nice to be rid of one more drug!
Brain Hemorrhages:
Carver had his MRI. They were able to prove that the Hemorrhage that he suffered was not a Grade 4. Instead, it was a Grade 3. The difference is that a Grade 4 would indicate that the Hemorrhage went beyond the ventricle walls causing Brain tissue damage. His Grade 3 Hemorrhage stopped within the ventricle wall. The MRI did show the ventricles as still being larger then normal. I’m told this will not cause any additional problems – cerebral fluid is circulating like it is supposed to – no blockage. However, due to the Hemorrhages (he also suffered a Grade 2 Hemorrhage), the cerebral stem is smaller then normal (this will continue to grow as Carver grows). This will impact his Gross motor skills – meaning that he will show delays crawling, walking, riding a bike (balance), throwing a ball, etc. I’m told he is capable of doing these things, but these things will take longer then normal to learn. In addition, the brain (overall) does show some shrinkage. The brain will continue to grow as Carver grows. This will impact Carver’s fine motor skills – meaning that he will show delays in reading, writing, learning, etc. I’m told he is capable of doing these things, but they will also take longer to learn. The neurologist said that if he had to rate Carver’s damage or delays, he would say somewhere between MODERATE/SEVERE (scale being MILD/MODERATE/SEVERE/PROFOUND). So, it could be better and it could be worse. Overall, we were very pleased with their findings. Carver is already getting Physical Therapy (gross motor skills) and Occupational Therapy (fine motor skills). They will add Speech Therapy later. Kinnick is scheduled to receive her MRI on Monday. She suffered a Grade 1 and Grade 2 Hemorrhage at birth. I am told that Grade 1 and 2 Hemorrhages due not typically cause any lasting problems, so we are expecting good results.
Hearing:
Carver had his hearing tested (via BAER test). The test indicated that Carver has a severe hearing loss. Carver will be fitted for hearing aides (to amplify sound) right away. While these may not prove to help, we are required to try these for 6 months in order to qualify for Cochlear implants. I’ve heard many success stories about this implant. One example can be seen/heard at the following website http://www.laneyjane.com/AudioClips.htm. Kinnick had her hearing tested (via BAER test). The test indicated a MILD/MODERATE hearing loss. I have not heard the course of action for her, yet. Her hearing was tested late Friday and I have not had an opportunity to speak to the ENT or Audiologist.
Eyes:
Kinnick’s eyes have started getting worse – the retina is starting to detach. Carver’s eyes are still active, but don’t show much change. The eye doctor has recommended that both babies go to Detroit to be evaluated by an ROP specialist. We will know more on Monday.
Bones:
Both Kinnick and Carver have been diagnosed with Rickets. This is a brittle bone disease. Their bones can break very easy. Tthis should get better once they have been on full feeds for a while and are getting good nutrition. Carver is showing improvement. Kinnick will take longer to get over the problem since she hasn’t been on full feeds long.
Feedings:
Both babies are tolerating full feeds. They are still very weak, so they have a hard time bottling all of their feeds. The doctor has recommended G-tubes for both babies. The G-tube will be surgically inserting into the stomach and will have a tube (Mickey button (sp)) that will allow me to push (directly into the stomach) any fluids that they are not able to get orally. I will be able to bottle as much of the feeds as possible – this just gives me the ability to insure the babies get proper nutrition and will allow them to go home vs staying in the hospital until they are strong enough to take all feeds (which could be a very long time). This will also help during the coming cold season when the babies lungs are not strong enough to tolerate a cold and still have the energy to feed – keeping us out of the hospital due to dehydration which is common in micro-preemies.
Weight:
Carver weights 8 lbs 7 oz. Kinnick weights 9 lbs 7 oz. While Kinnick’s weight has not gone down much, she has lost at least a pound of fluid. She still has more fluid to lose, but it appears to be dropping. Hopefully, both babies will weight about the same in the next week or two.
Activities:
Both babies are starting to act more like full term newborns. The babies have also started getting to know each other – they are now sharing a baby bed. Kinnick appears to be a little jealous of Carver’s hair – I have caught her with her hand in his hair ready to pull. She doesn’t have much hair of her own. Carver isn’t sure what to think of his sister, but doesn’t like sharing rocker time with her. He wiggles and cries until someone else takes her, so he can have the entire rocker to himself. He’s in for a surprise when he finally figures out that he is not an only child (1 of 7). However, he is the baby by about 45 minutes.
I always save the big news for last….. If Carver does not go to Detroit on Monday or Tuesday, he will be sent to Mother/Baby where I will stay with him 24/7 (for at least 3 nights) to learn his machines (Oxygen, Apnea Monitor (in case he stops breathing or his heart rate drops too low), and G-tube feeding. The G-tube has not been inserted, yet. This may delay his release. They do not want to put the G-tube in until we are sure that he is not going to Detroit. If we go to Detroit, they will have the G-tube surgically placed if/when they operate on his eyes. They don’t want to put him under any more then necessary. After I (and the doctors) am comfortable that I can handle Carver and his machines, he will be released to go home. So, you will not see me in the office on Monday. I will either be on my way to Detroit or in a Mother/Baby room at Wesley Hospital. Kinnick should be able to come home shortly after Carver. Everything is dependent on the eye surgery in Detroit.
I will be checking email from home as time permits and will continue to keep everyone posted.
Thank you for all of your kind words, thoughts, and prayers! Thank God for his many blessings!
July 31st, 2007
Hello,
Update on the twin’s progress…
Ventilators:
Kinnick and Carver are both off the ventilators!! No more conventional ventilator or CPAP. This is Carver’s second try off CPAP. The first time (7/18/07) he made it about 3 days. He had to wait another week before trying again. He has now been off CPAP for almost a week. Kinnick was taken off her ventilator and put on nasal canula Saturday. It’s her 4th day and she’s doing great. It took a while, but we are finally able to hear Carver cry! What a relief. We were so worried that he might suffer paralyzed vocal cords due to the length of time on the Ventilator. It will be a while before we are able to hear Kinnick. However, we have heard a few squeaks, so we’re pretty certain that she will not have any damage.
Oxygen:
Kinnick and Carver are both getting extra oxygen via nasal canula. Carver is getting 200 – 250cc of extra oxygen. Kinnick skipped CPAP and is getting about 500cc of extra oxygen – pretty good for skipping CPAP. The doctors felt like the CPAP would add add’l gas to her already large tummy. So, they went to a little higher level of oxygen, instead. I’m being told that it is possible to go home on 250cc of extra oxygen. However, they would like to be at a little lower level to allow room if needed.
Seizures:
Carver and Kinnick are both on maintenance drugs to prevent seizures. They will continue to be on the maintenance drugs for quite some time.
Brain Hemorrhages:
Carver will receive an MRI this week. They will be looking at any damage that may be left behind due to the Grade 4 brain Hemorrhage that he received in his first couple weeks of life. Please pray that we receive good results.
Eyes:
We haven’t seen any change (good or bad) in the last couple of weeks. We are in somewhat of a holding pattern. It is not possible to remain in a holding pattern forever. Their eyes will either get better or worse. However, we are told this is viewed as positive. Typically if the retina is going to detach, you do not get a break. The deterioration continues without a holding pattern. So, we are hopeful that their eyes will start getting better. We are also told that once the babies get past 41-44 weeks, the retinas are less likely to detach (they are currently 41 weeks). However, we are still considered to be at high risk for having the retinas detach. The doctor will continue to monitor their eyes on a weekly basis.
Bones:
Both Kinnick and Carver have been diagnosed with Rickets. This is a brittle bone disease. Their bones can break very easy. This should get better once they have been on full feeds for a while and are getting good nutrition.
Feedings:
Kinnick is now on full feeds. We had a scare last Friday – her tummy size increased pretty significantly. However, the CAT scan didn’t reveal a problem, so they continued her feeds. It appears that the majority of her feeding problems right now are related to slow motility in her intestines/colon. They are trying to convert Kinnick to the same over-the-counter formula as Carver. This is a special formula made for preemies that provides add’l calories. This should help their bone health improve. Carver is still on full feeds and doing great. On Saturday, they starting trying to bottle feed Carver. He has been able to drink about ½ his feed in the allowed time (30 min). He will be able to go home once he is able to finish all of his feeds within 30 min. They only allow him 1 try a day, unless he does really well. They will not try to bottle feed Kinnick until she is completely converted to the new formula and showing no signs of tummy problems.
Weight:
Carver weights 7 lbs 14 oz. Kinnick weights 9 lbs 10 oz. She still has quite a bit of fluid as you can see in her picture, but she is starting to lose some of the fluid.
Activities:
Both babies have started physical therapy to help with motor skills and to stretch muscles that haven’t been stretched laying flat in a bed instead of curled in a fetal position for the past 4 ½ months. They appear to enjoy the therapy. It seems to be very relaxing. In fact, some of the therapy looks a lot like a full body massage – who wouldn’t enjoy that?
I’m attaching pictures of both babies – Carver’s first bottle and Kinnick’s first day off the ventilator. It is amazing how far they have come. God must have big plans for our little angles. Only 6% of 23 week twins make it home. The odds of at least one baby coming home who was born at 23 weeks is about 17%. Our babies will both be coming home soon! Praise God!
Update on the twin’s progress…
Ventilators:
Kinnick and Carver are both off the ventilators!! No more conventional ventilator or CPAP. This is Carver’s second try off CPAP. The first time (7/18/07) he made it about 3 days. He had to wait another week before trying again. He has now been off CPAP for almost a week. Kinnick was taken off her ventilator and put on nasal canula Saturday. It’s her 4th day and she’s doing great. It took a while, but we are finally able to hear Carver cry! What a relief. We were so worried that he might suffer paralyzed vocal cords due to the length of time on the Ventilator. It will be a while before we are able to hear Kinnick. However, we have heard a few squeaks, so we’re pretty certain that she will not have any damage.
Oxygen:
Kinnick and Carver are both getting extra oxygen via nasal canula. Carver is getting 200 – 250cc of extra oxygen. Kinnick skipped CPAP and is getting about 500cc of extra oxygen – pretty good for skipping CPAP. The doctors felt like the CPAP would add add’l gas to her already large tummy. So, they went to a little higher level of oxygen, instead. I’m being told that it is possible to go home on 250cc of extra oxygen. However, they would like to be at a little lower level to allow room if needed.
Seizures:
Carver and Kinnick are both on maintenance drugs to prevent seizures. They will continue to be on the maintenance drugs for quite some time.
Brain Hemorrhages:
Carver will receive an MRI this week. They will be looking at any damage that may be left behind due to the Grade 4 brain Hemorrhage that he received in his first couple weeks of life. Please pray that we receive good results.
Eyes:
We haven’t seen any change (good or bad) in the last couple of weeks. We are in somewhat of a holding pattern. It is not possible to remain in a holding pattern forever. Their eyes will either get better or worse. However, we are told this is viewed as positive. Typically if the retina is going to detach, you do not get a break. The deterioration continues without a holding pattern. So, we are hopeful that their eyes will start getting better. We are also told that once the babies get past 41-44 weeks, the retinas are less likely to detach (they are currently 41 weeks). However, we are still considered to be at high risk for having the retinas detach. The doctor will continue to monitor their eyes on a weekly basis.
Bones:
Both Kinnick and Carver have been diagnosed with Rickets. This is a brittle bone disease. Their bones can break very easy. This should get better once they have been on full feeds for a while and are getting good nutrition.
Feedings:
Kinnick is now on full feeds. We had a scare last Friday – her tummy size increased pretty significantly. However, the CAT scan didn’t reveal a problem, so they continued her feeds. It appears that the majority of her feeding problems right now are related to slow motility in her intestines/colon. They are trying to convert Kinnick to the same over-the-counter formula as Carver. This is a special formula made for preemies that provides add’l calories. This should help their bone health improve. Carver is still on full feeds and doing great. On Saturday, they starting trying to bottle feed Carver. He has been able to drink about ½ his feed in the allowed time (30 min). He will be able to go home once he is able to finish all of his feeds within 30 min. They only allow him 1 try a day, unless he does really well. They will not try to bottle feed Kinnick until she is completely converted to the new formula and showing no signs of tummy problems.
Weight:
Carver weights 7 lbs 14 oz. Kinnick weights 9 lbs 10 oz. She still has quite a bit of fluid as you can see in her picture, but she is starting to lose some of the fluid.
Activities:
Both babies have started physical therapy to help with motor skills and to stretch muscles that haven’t been stretched laying flat in a bed instead of curled in a fetal position for the past 4 ½ months. They appear to enjoy the therapy. It seems to be very relaxing. In fact, some of the therapy looks a lot like a full body massage – who wouldn’t enjoy that?
I’m attaching pictures of both babies – Carver’s first bottle and Kinnick’s first day off the ventilator. It is amazing how far they have come. God must have big plans for our little angles. Only 6% of 23 week twins make it home. The odds of at least one baby coming home who was born at 23 weeks is about 17%. Our babies will both be coming home soon! Praise God!
July 13th, 2007
Hello,
Update on the twin’s progress…
Ventilators:
Carver is now on CPAP! He was put on CPAP 7/2/07 and is now at the lowest pressure (4). His oxygen needs have been in the upper 30% to low 40% range. It is possible that he will be off CPAP in the next week. Once he is off CPAP, he will most likely be placed on nasal canula for his oxygen needs. This will not prevent him from going home. He can go home on nasal canula. However, they want him to be as close to room air as possible (21% oxygen). Once he is on nasal canula, his last step will be bottle feeding. Based on how well he is sucking on a pacifier, it is likely that he will not have problems learning to bottle feed. Kinnick has really struggled since her intestinal surgery. She is still trying to heal and is requiring extra help from her ventilator. She is at an air pressure of 27/6 and a rate of 24 breaths per minute. Her oxygen needs have been in the 40-50% range. She is still very puffy – weighting in at 8lbs 3oz. She should be weighting around 6lbs. In addition to her healing, she has gotten pneumonia, so this is causing some additional ventilator help.
Seizures:
Carver and Kinnick are both on maintenance drugs to prevent seizures. They will continue to be on the maintenance drugs for quite some time.
Eyes:
Carver’s eyes continue to improve. Kinnick hasn’t been as lucky. Her eyes are continuing to get worse. A second doctor was able to perform another surgery on her eyes, however they continue to get worse. They will continue to monitor her eyes to see if the disease stops or continues to get worse. If it doesn’t improve, she will be transported to Detroit to see another specialist. His job will be to save as much of the retina as possible. We are told that the success of this surgery is not very good even in the best of hands. However, any part of her retina that is saved will be better then no vision at all. Both eyes are equally bad, so we’re hoping to see improvement soon. Please continue to pray with us that her eyes will show signs of improvement.
Bones:
Both Kinnick and Carver have been diagnosed with Rickets. This is a brittle bone disease. Carver has some fractured ribs that are healing. Their bones break very easy. This should get better once they have been on full feeds for a while and are getting good nutrition.
Feedings:
Kinnick lost her feeds again earlier this week due to an increase in girth size. It appears that her large colon is full of stool and is not emptying. We are hoping things start moving soon, so she can get back to her feedings. Carver is still on full feeds and doing great. In fact, he is now on an over-the-counter formula instead of the easily digested preemie formula.
Weight:
Carver weights 6 lbs 4 oz. Kinnick weights 8 lbs 3 oz (mostly due to water retention from being sick).
Temperature:
Kinnick and Carver are both in regular baby beds and are maintaining their own temperature.
Activities:
Carver continues to demand more attention (acting like a healthy newborn!). He’s been spending some of his spare time sitting in a vibrating bouncy seat and looking at himself in a mirror. He enjoys being held. The nurses in NICU have been taking turns spoiling him with lots of rocking and holding time. He also enjoys time with a “Cuddler” that comes in to hold and rock him. “Cuddlers” are volunteers that come in to hold and rock the sick babies.
I’m attaching pictures of Carver “Big Day”. He was placed on CPAP 7/2/07. There are 4 pictures. The upper left picture is his bath prior to the big event (you can see his vent tube), the picture on the upper right shows them pulling the vent tube, the picture on the lower left shows him with no strings attached (his cheeks have healed), and the picture on the lower right shows him with his new CPAP gear.
I want to thank you again for all of your Thoughts and Prayers! I hope you will continue to pray for our little miracle babies.
Update on the twin’s progress…
Ventilators:
Carver is now on CPAP! He was put on CPAP 7/2/07 and is now at the lowest pressure (4). His oxygen needs have been in the upper 30% to low 40% range. It is possible that he will be off CPAP in the next week. Once he is off CPAP, he will most likely be placed on nasal canula for his oxygen needs. This will not prevent him from going home. He can go home on nasal canula. However, they want him to be as close to room air as possible (21% oxygen). Once he is on nasal canula, his last step will be bottle feeding. Based on how well he is sucking on a pacifier, it is likely that he will not have problems learning to bottle feed. Kinnick has really struggled since her intestinal surgery. She is still trying to heal and is requiring extra help from her ventilator. She is at an air pressure of 27/6 and a rate of 24 breaths per minute. Her oxygen needs have been in the 40-50% range. She is still very puffy – weighting in at 8lbs 3oz. She should be weighting around 6lbs. In addition to her healing, she has gotten pneumonia, so this is causing some additional ventilator help.
Seizures:
Carver and Kinnick are both on maintenance drugs to prevent seizures. They will continue to be on the maintenance drugs for quite some time.
Eyes:
Carver’s eyes continue to improve. Kinnick hasn’t been as lucky. Her eyes are continuing to get worse. A second doctor was able to perform another surgery on her eyes, however they continue to get worse. They will continue to monitor her eyes to see if the disease stops or continues to get worse. If it doesn’t improve, she will be transported to Detroit to see another specialist. His job will be to save as much of the retina as possible. We are told that the success of this surgery is not very good even in the best of hands. However, any part of her retina that is saved will be better then no vision at all. Both eyes are equally bad, so we’re hoping to see improvement soon. Please continue to pray with us that her eyes will show signs of improvement.
Bones:
Both Kinnick and Carver have been diagnosed with Rickets. This is a brittle bone disease. Carver has some fractured ribs that are healing. Their bones break very easy. This should get better once they have been on full feeds for a while and are getting good nutrition.
Feedings:
Kinnick lost her feeds again earlier this week due to an increase in girth size. It appears that her large colon is full of stool and is not emptying. We are hoping things start moving soon, so she can get back to her feedings. Carver is still on full feeds and doing great. In fact, he is now on an over-the-counter formula instead of the easily digested preemie formula.
Weight:
Carver weights 6 lbs 4 oz. Kinnick weights 8 lbs 3 oz (mostly due to water retention from being sick).
Temperature:
Kinnick and Carver are both in regular baby beds and are maintaining their own temperature.
Activities:
Carver continues to demand more attention (acting like a healthy newborn!). He’s been spending some of his spare time sitting in a vibrating bouncy seat and looking at himself in a mirror. He enjoys being held. The nurses in NICU have been taking turns spoiling him with lots of rocking and holding time. He also enjoys time with a “Cuddler” that comes in to hold and rock him. “Cuddlers” are volunteers that come in to hold and rock the sick babies.
I’m attaching pictures of Carver “Big Day”. He was placed on CPAP 7/2/07. There are 4 pictures. The upper left picture is his bath prior to the big event (you can see his vent tube), the picture on the upper right shows them pulling the vent tube, the picture on the lower left shows him with no strings attached (his cheeks have healed), and the picture on the lower right shows him with his new CPAP gear.
I want to thank you again for all of your Thoughts and Prayers! I hope you will continue to pray for our little miracle babies.
June 29th, 2007
Hello,
Update on the twin’s progress…
Ventilators:
Carver’s ventilator is now set at an air pressure of 21/6 and a rate of 15 breaths per minute. His oxygen needs have been in the mid 40% range. His doctor is starting to think about putting him on CPAP. He said that he would like to see his air pressure at 18 or 19. Hopefully that will happen over the next week. He was at 20/6 and a rate of 15 prior to his ROP surgery, but was set back quite a bit over the last week while recovering from the surgery (mentioned below). Kinnick has really struggled since her intestinal surgery. The incision split open after just a few days allowing her intestines to spill out of her body. She was rushed in for another surgery. The second surgery really set her back on the ventilator. She was put on the High Frequency ventilator that Carver was on for so long. Within a week, she was moved back to the conventional ventilator and has since come down to an air pressure of 24/6 and a rate of 20 breaths per minute. Her oxygen needs have been in the 40-50% range. She is still very puffy – weighting in at almost 7lbs. She should be weighting around 5lbs.
Seizures:
Carver and Kinnick are both on maintenance drugs to prevent seizures. They will continue to be on the maintenance drugs for quite some time.
Eyes:
Carver was diagnosed with the same preemie eye disease (ROP) that Kinnick was diagnosed with and had to undergo the same surgery about a week ago. Carver’s surgery was a success and his eyes have already started to improve. Kinnick hasn’t been as lucky. Her eyes are continuing to get worse. The eye doctor here has done all he can to save her eyes. It is just a waiting game over the next week to see if the disease stops or continues to get worse. If it doesn’t improve over the next week, she will be transported to Detroit to see another specialist. His job will be to save as much of the retina as possible. We are told that the success of this surgery is not very good even in the best of hands. However, any part of her retina that is saved will be better then no vision at all. Both eyes are equally bad, so we’re hoping to see improvement over the next week. Please pray with us that her eyes will show signs of improvement over the next week.
Feedings
Kinnick started feeds again this week. She is up to about 1/3 of her feed volume. Carver is almost back on full feeds. His feeds were taken away briefly due to suspected intestinal problems.
Weight:
Carver is weighing in at 5 lbs 4 oz. Kinnick is weighting in at 6 lbs 14 oz (mostly due to water retention from surgery).
Temperature:
Carver is still in his big boy bed (a real baby bed) and is maintaining his own temperature. Kinnick is doing better maintaining her own temperature, but due to surgery and recovery, she remains in her temp controlled bed. Once she is feeling better, she’ll be moved to a big girl bed.
Activities:
Since Carver is no longer being sedated or on pain medication, he has started demanding attention. He’s been spending some of his spare time sitting in a vibrating bouncy seat and looking at himself in a mirror. He’s also been naughty and removed his own feeding tube. Another favorite is to pull his vent tube out (something that he’s been successful at in the past), so he lost his tummy time.
We’re counting the days. Their due date is 7/22/07, so we’re getting closer. We realize they won’t go home on their due date, but we’ve got to be getting closer to the actual day they come home. Still hoping they’ll come home within a month of their due date.
Thank you again for all of your Thoughts and Prayers! The babies are thriving because of God’s many blessings!
Update on the twin’s progress…
Ventilators:
Carver’s ventilator is now set at an air pressure of 21/6 and a rate of 15 breaths per minute. His oxygen needs have been in the mid 40% range. His doctor is starting to think about putting him on CPAP. He said that he would like to see his air pressure at 18 or 19. Hopefully that will happen over the next week. He was at 20/6 and a rate of 15 prior to his ROP surgery, but was set back quite a bit over the last week while recovering from the surgery (mentioned below). Kinnick has really struggled since her intestinal surgery. The incision split open after just a few days allowing her intestines to spill out of her body. She was rushed in for another surgery. The second surgery really set her back on the ventilator. She was put on the High Frequency ventilator that Carver was on for so long. Within a week, she was moved back to the conventional ventilator and has since come down to an air pressure of 24/6 and a rate of 20 breaths per minute. Her oxygen needs have been in the 40-50% range. She is still very puffy – weighting in at almost 7lbs. She should be weighting around 5lbs.
Seizures:
Carver and Kinnick are both on maintenance drugs to prevent seizures. They will continue to be on the maintenance drugs for quite some time.
Eyes:
Carver was diagnosed with the same preemie eye disease (ROP) that Kinnick was diagnosed with and had to undergo the same surgery about a week ago. Carver’s surgery was a success and his eyes have already started to improve. Kinnick hasn’t been as lucky. Her eyes are continuing to get worse. The eye doctor here has done all he can to save her eyes. It is just a waiting game over the next week to see if the disease stops or continues to get worse. If it doesn’t improve over the next week, she will be transported to Detroit to see another specialist. His job will be to save as much of the retina as possible. We are told that the success of this surgery is not very good even in the best of hands. However, any part of her retina that is saved will be better then no vision at all. Both eyes are equally bad, so we’re hoping to see improvement over the next week. Please pray with us that her eyes will show signs of improvement over the next week.
Feedings
Kinnick started feeds again this week. She is up to about 1/3 of her feed volume. Carver is almost back on full feeds. His feeds were taken away briefly due to suspected intestinal problems.
Weight:
Carver is weighing in at 5 lbs 4 oz. Kinnick is weighting in at 6 lbs 14 oz (mostly due to water retention from surgery).
Temperature:
Carver is still in his big boy bed (a real baby bed) and is maintaining his own temperature. Kinnick is doing better maintaining her own temperature, but due to surgery and recovery, she remains in her temp controlled bed. Once she is feeling better, she’ll be moved to a big girl bed.
Activities:
Since Carver is no longer being sedated or on pain medication, he has started demanding attention. He’s been spending some of his spare time sitting in a vibrating bouncy seat and looking at himself in a mirror. He’s also been naughty and removed his own feeding tube. Another favorite is to pull his vent tube out (something that he’s been successful at in the past), so he lost his tummy time.
We’re counting the days. Their due date is 7/22/07, so we’re getting closer. We realize they won’t go home on their due date, but we’ve got to be getting closer to the actual day they come home. Still hoping they’ll come home within a month of their due date.
Thank you again for all of your Thoughts and Prayers! The babies are thriving because of God’s many blessings!
June 14th, 2007
Hello,
Just a quick update on the twin’s progress…
Ventilators:
Carver’s ventilator is now set at an air pressure of 24/6 and a rate of 21 breaths per minute. His oxygen needs have been in the mid 40% range. While this may seem like very little change, it is significant. He only needs to be at 22/5 with a rate of 20 to move to CPAP. So, we could be there very soon. We are all very excited about the progress that Carver has made. He has exceeded everyone’s expectations. Kinnick has had some significant setbacks this week. Her feeds were taken away last week due to an increase in her stomach measurements. After some extensive testing that involved an upper and lower GI and a series of sonograms and x-rays, it was discovered that she had a block in her intestines. We had to stop her feeds. This was disappointing because she finally reached full feeds again. Because of the block, she had to undergo surgery to remove the damaged part of the intestines. We were very lucky – they only removed about 3cm of intestines. The block was where the large intestine meets the small intestine. They removed some from both the large and small intestine. While they were in there, they removed her appendix. She has a large scar from her belly button to her mid right side. She handled surgery very well. However, she is retaining a great deal of fluid (weights 6 ½ lbs) and is requiring a great deal of help from her ventilator. She is currently at an air pressure of 38/6 and a rate of 28 breaths per minute. Her oxygen needs have been in the 30% range. Her brother has passed her for the first time! I’m told that things should start looking better over the next couple of weeks.
Hemorrhages:
Carver’s grade 4 hemorrhage has resolved, however the damage left behind will not change. There was some brain tissue damage that leaves a very large possibility that he will suffer Motor Skill problems and Cerebral Palsy. I’m told the % of this happening is 75%. I am optimistic that we will be in the 25% without problem (why not, we’ve beaten the rest of the odds). Carver’s head size has reduced significantly (normal size, now), this is a very good sign that the ventricles that were filling with fluid are no longer filling with additional fluid and may have actually decreased in the amount that was already collected. He will continue to be monitored and will have an MRI once he’s a little older to determine expectations from the damage.
Seizures:
All 23 weekers will experience seizures. Carver and Kinnick are both on maintenance drugs to prevent seizures. We haven’t seen any seizure activity for several weeks. They will continue to be on the maintenance drugs for quite some time – easily a year or longer.
Eyes:
Carver and Kinnick have been being tested for ROP on a weekly basis. This is a preemie eye disease that causes the retina to detach from the back of the eye. Kinnick has a pretty severe case, so she had laser surgery this morning to stop any additional damage. The surgery is 70-80% effective. If they are able to stop the damage, she will only suffer peripheral vision damage, otherwise she could be blind. I am told that it is rare if they end up with a blind baby. They are usually successful in saving at least one eye. We will not know if the surgery was successful for a few weeks or longer. I am also told that it is highly likely that Carve will require the same surgery.
Heart:
Carver is no longer requiring drugs for a low heart rate. This is attributable to him being off the High Frequency Ventilator, and not requiring as much sedation. In addition, the fact that he is no longer retaining extreme amounts of fluid.
Feedings:
I mentioned above that Kinnick is not feeding due to the intestinal block. They are hopeful that she will be able to start feeds again the first of next week. Carver is now on full feeds and has been problem free!
Weight:
Carver is weighing in at 4 lbs 15 oz. Kinnick is weighting in at 6 lbs 9 oz (mostly due to water retention from surgery).
Temperature:
Carver has learned to maintain his own temperature and was put in a big boy bed (a real baby bed) last night. Kinnick is capable of maintaining her temp, but is having difficulty due to the surgery and the demands of recovery. She remains in her temp controlled bed. Once she is feeling better, she’ll be moved to a big girl bed.
Now, for the big news!! I got to hold Carver for the first time last night! I thought the day would never come! I didn’t want to put him back in his bed. He looked so comfortable and happy. He’s doing so well, I’m told that I should be able to hold him whenever I want – short periods of time. We have to work up to longer periods based on how well he does with handling.
Once again, I can’t tell you how blessed we are! Thank you all for your Prayers!
Just a quick update on the twin’s progress…
Ventilators:
Carver’s ventilator is now set at an air pressure of 24/6 and a rate of 21 breaths per minute. His oxygen needs have been in the mid 40% range. While this may seem like very little change, it is significant. He only needs to be at 22/5 with a rate of 20 to move to CPAP. So, we could be there very soon. We are all very excited about the progress that Carver has made. He has exceeded everyone’s expectations. Kinnick has had some significant setbacks this week. Her feeds were taken away last week due to an increase in her stomach measurements. After some extensive testing that involved an upper and lower GI and a series of sonograms and x-rays, it was discovered that she had a block in her intestines. We had to stop her feeds. This was disappointing because she finally reached full feeds again. Because of the block, she had to undergo surgery to remove the damaged part of the intestines. We were very lucky – they only removed about 3cm of intestines. The block was where the large intestine meets the small intestine. They removed some from both the large and small intestine. While they were in there, they removed her appendix. She has a large scar from her belly button to her mid right side. She handled surgery very well. However, she is retaining a great deal of fluid (weights 6 ½ lbs) and is requiring a great deal of help from her ventilator. She is currently at an air pressure of 38/6 and a rate of 28 breaths per minute. Her oxygen needs have been in the 30% range. Her brother has passed her for the first time! I’m told that things should start looking better over the next couple of weeks.
Hemorrhages:
Carver’s grade 4 hemorrhage has resolved, however the damage left behind will not change. There was some brain tissue damage that leaves a very large possibility that he will suffer Motor Skill problems and Cerebral Palsy. I’m told the % of this happening is 75%. I am optimistic that we will be in the 25% without problem (why not, we’ve beaten the rest of the odds). Carver’s head size has reduced significantly (normal size, now), this is a very good sign that the ventricles that were filling with fluid are no longer filling with additional fluid and may have actually decreased in the amount that was already collected. He will continue to be monitored and will have an MRI once he’s a little older to determine expectations from the damage.
Seizures:
All 23 weekers will experience seizures. Carver and Kinnick are both on maintenance drugs to prevent seizures. We haven’t seen any seizure activity for several weeks. They will continue to be on the maintenance drugs for quite some time – easily a year or longer.
Eyes:
Carver and Kinnick have been being tested for ROP on a weekly basis. This is a preemie eye disease that causes the retina to detach from the back of the eye. Kinnick has a pretty severe case, so she had laser surgery this morning to stop any additional damage. The surgery is 70-80% effective. If they are able to stop the damage, she will only suffer peripheral vision damage, otherwise she could be blind. I am told that it is rare if they end up with a blind baby. They are usually successful in saving at least one eye. We will not know if the surgery was successful for a few weeks or longer. I am also told that it is highly likely that Carve will require the same surgery.
Heart:
Carver is no longer requiring drugs for a low heart rate. This is attributable to him being off the High Frequency Ventilator, and not requiring as much sedation. In addition, the fact that he is no longer retaining extreme amounts of fluid.
Feedings:
I mentioned above that Kinnick is not feeding due to the intestinal block. They are hopeful that she will be able to start feeds again the first of next week. Carver is now on full feeds and has been problem free!
Weight:
Carver is weighing in at 4 lbs 15 oz. Kinnick is weighting in at 6 lbs 9 oz (mostly due to water retention from surgery).
Temperature:
Carver has learned to maintain his own temperature and was put in a big boy bed (a real baby bed) last night. Kinnick is capable of maintaining her temp, but is having difficulty due to the surgery and the demands of recovery. She remains in her temp controlled bed. Once she is feeling better, she’ll be moved to a big girl bed.
Now, for the big news!! I got to hold Carver for the first time last night! I thought the day would never come! I didn’t want to put him back in his bed. He looked so comfortable and happy. He’s doing so well, I’m told that I should be able to hold him whenever I want – short periods of time. We have to work up to longer periods based on how well he does with handling.
Once again, I can’t tell you how blessed we are! Thank you all for your Prayers!
June 1st, 2007
Hello all,
I wanted to thank everyone again for all of your thoughts and prayers. We are truly blessed with wonderful friends.
Coming back to work was hard, but the babies made it a pleasant week. They both had a great week…
Ventilators:
On my first day back to work (Friday, May 25th), much to my surprise, the Neonatologists decided to switch Carver to a conventional ventilator. Well, he lasted about 2 ½ hrs and had to be put back on the High Frequency Ventilator. This was very disappointing. I hoped that he would be able to make the leap. After evaluating the situation, the Neonatologists decided to spend a couple more days weaning down Carver’s vent needs. After coming down slightly on his vent settings, they switched Carver back to a conventional ventilator on Saturday. To this day, he is still on the conventional ventilator and is doing GREAT! His oxygen needs have gone down to around 50-60%. His vent settings are very close to Kinnick’s setting, and they are continuing to lower his setting. Carver’s machine is set at an air pressure of 26/7 with a rate of 25 breaths per minute. Kinnick’s machine is set at an air pressure of 26/6 and a rate of 21 breaths per minute. She is requiring around 40% oxygen. The next step is to get both of them on CPAP (Continuous Positive Air Pressure). This is still considered a ventilator, but isn’t not nearly as hard on the lungs. This will just provide a constant stream of air. To make this leap, the twins will need to be at an air pressure no greater then 22/5 with a rate of 20 breaths per minute. However, they would prefer to move them when they reach an air pressure of 16/4 and a rate of 10 breaths per minutes (these are considered excellent numbers). This could take a few days or several weeks.
Hemorrhages:
Kinnick’s brain hemorrhages have completely resolved. Carver’s grade 4 hemorrhage will take months to resolve. For a while, Carver’s left and right ventricles were both building fluid. This typically indicates that the hemorrhage has grown to a point that it is completely blocking spinal fluid from flowing to the brain. Free flowing fluid is necessary for good motor skills. They believe the level of fluid has reached it’s peak, so we’re hoping the size of the ventricles will start to shrink along with the hemorrhage. This has increased Carver’s odds for Cerebral Palsy to greater then 75%. However, the neural surgeon appears to be very optimistic about the outcome. I hear that he is the type to hold nothing back, so the fact that he has only had positive things to say is reassuring of a good outcome for Carver. They will continue to monitor Carver’s hemorrhages every other week.
Seizures:
All 23 weekers will experience seizures. Carver and Kinnick are both on maintenance drugs to prevent seizures. We haven’t seen any seizure activity for a few weeks. They will continue to be on the maintenance drugs for quite some time – easily a year or longer.
Heart:
Carver has been experiencing problems maintaining a good heart rate – his is low. Because of this, an echogram was done on his heart to verify that it is working properly and not damaged. The results came back that he had a perfectly normal heart. This is much better news then expected. They now believe the low pressures are related to the excess fluid gains that he has had and the amount of sedation drugs that he has been on. The sedation is important because he is easily agitated. When he is agitated, he requires more help from the ventilator. The more help he gets from the ventilator, the more damage his lungs sustain. It’s a vicious circle. So, we have lowered his sedation doses and spread them out. Hopefully, he can be weaned and his blood pressure will go up.
Feedings:
Another big hurdle is feedings. They start and stop feedings all of the time. Carver has had very little feedings. In fact, he’s never made it past about 1/3 of an ounce at feedings. Currently, he is not feeding due to the blood pressure meds that he is on. Once he is off the blood pressure meds, they’ll start feeds again. Kinnick suffered some intestinal blockage and lost her feeding for 3-4 wks. She is now back on feedings and is up to about ½ ounce per feeding. A full feeding would be 1 ounce.
Weight:
Both are currently weighing in at about 4 lbs 3 oz. They look so big!
Temperature:
Both are learning to maintain their own temperature instead of being dependent on a temp controlled bed – wish I had one of those. They look so cute in their preemie clothes. Kinnick is doing so good that I got to hold her for the first time over my lunch hour today. Wow, that made my week! It’s been a long wait.
We continue to be very blessed. At an expected survival rate of 17-25%, we have been very fortunate to maintain 100%. Please continue to pray for our little miracles – they still have a long way to go.
May 24th, 2007
I am planning to go back at work tomorrow.
Today has been a bad day for both of the babies, and therefore an emotional day. I'm struggling with my decision to go back to work.
The twins are continuing to fight the same issues I've communicated in the past, and have not progressed as much by now as the doctors had hoped for.
Today has been a bad day for both of the babies, and therefore an emotional day. I'm struggling with my decision to go back to work.
The twins are continuing to fight the same issues I've communicated in the past, and have not progressed as much by now as the doctors had hoped for.
May 16th, 2007
The babies are doing about the same as last report.
Carver still has pneumonia. He is still on the high frequency ventilator. He started eating again today, but only a very small amount.
They think Kinnick might have an infection. She has had some blood in her saliva and in her stools. Until they figure out what is going on with that, they won't start her on feedings again. She is still on her ventilator, but her oxygen levels have been at a reasonable level.
Carver still has pneumonia. He is still on the high frequency ventilator. He started eating again today, but only a very small amount.
They think Kinnick might have an infection. She has had some blood in her saliva and in her stools. Until they figure out what is going on with that, they won't start her on feedings again. She is still on her ventilator, but her oxygen levels have been at a reasonable level.
May 11th, 2007
Carver is having a rough time. He is back on the high frequency ventilator. He has pneumonia.
Since Carver isn’t well, he has gained another ½ lb in water weight, so he is swollen again.
They have stopped both Carver's and Kinnick's feedings for a while. Both have had problems with their intestines. So far, they're not aware of any ruptures. Kinnick might get to try eating again on the 13th, but not sure when Carver will get to try eating again.
Kinnick’s oxygen needs went up quite a bit about a week ago, but are now back down to near room air. They believe she was sick, but she is doing better again. They've been talking again about putting her on CPAP (Continuous Positive Airway Pressure.) Hopefully that will happen this time.
Since Carver isn’t well, he has gained another ½ lb in water weight, so he is swollen again.
They have stopped both Carver's and Kinnick's feedings for a while. Both have had problems with their intestines. So far, they're not aware of any ruptures. Kinnick might get to try eating again on the 13th, but not sure when Carver will get to try eating again.
Kinnick’s oxygen needs went up quite a bit about a week ago, but are now back down to near room air. They believe she was sick, but she is doing better again. They've been talking again about putting her on CPAP (Continuous Positive Airway Pressure.) Hopefully that will happen this time.
May 1st, 2007
The twins are doing pretty well. It continues to be a roller coaster. One day they'll do well, then the next day, not as well.
They think Carver might have some sort of an infection, but they don't know for sure at this point. His complete blood count today showed that something wasn't quite right. They had stopped his feedings, but then started them again this morning. If he does have an infection, we're not sure if they'll have to stop the feedings again.
They've had to increase his ventilator settings recently. He had been doing pretty well with his breathing, until Monday night.
His latest brain scan showed some improvement, so still headed in the right direction there.
He did finally "graduate" to an isolette which provides him more protection from germs and noise and provides better warmth.
They both weigh around 1 lb. 15 oz. - almost up to 2 lbs!
Kinnick is on full feedings and no longer requires her IV for extra fluids. She is eating 18 ml (a little over 1/2 oz) per feeding, which is a full feeding for her size/age.
She is not having as many seizures as she was.
She has not "graduated" from the conventional ventilator to a CPAP (Continuous Positive Airway Pressure) yet, but we think she is close to being able to do that.
I am planning to go back to work on May 25th. Then I will take more time off (probably another 4 - 8 weeks) when the babies come home from the hospital.
They think Carver might have some sort of an infection, but they don't know for sure at this point. His complete blood count today showed that something wasn't quite right. They had stopped his feedings, but then started them again this morning. If he does have an infection, we're not sure if they'll have to stop the feedings again.
They've had to increase his ventilator settings recently. He had been doing pretty well with his breathing, until Monday night.
His latest brain scan showed some improvement, so still headed in the right direction there.
He did finally "graduate" to an isolette which provides him more protection from germs and noise and provides better warmth.
They both weigh around 1 lb. 15 oz. - almost up to 2 lbs!
Kinnick is on full feedings and no longer requires her IV for extra fluids. She is eating 18 ml (a little over 1/2 oz) per feeding, which is a full feeding for her size/age.
She is not having as many seizures as she was.
She has not "graduated" from the conventional ventilator to a CPAP (Continuous Positive Airway Pressure) yet, but we think she is close to being able to do that.
I am planning to go back to work on May 25th. Then I will take more time off (probably another 4 - 8 weeks) when the babies come home from the hospital.
April 24th, 2007
A change over the weekend has made things easier. The Neonatal Intensive Care Unit at Wesley is made up of 4 units. When the twins were first born, they each obviously needed a lot of the doctors' and nurses' immediate attention. Because of that, Kinnick and Carver ended up in different units. Therefore, whenever we've been at the hospital, we have only been able to be with one of the babies at a time. Kinnick recently became stable enough that they were able to move her into the same unit as Carver. In fact, now they are located next to each other (in separate incubators.) So now we don't have to split our time at the hospital between the babies. That has been nice!
The babies have both been doing pretty well the past few days. Kinnick continues to do better than Carver.
In my last update, I said that Kinnick had gotten bigger than Carver, but at that point, she still had some water weight due to swelling. She is back down to 1 lb. 11 oz. and Carver weighs 1 lb. 13 oz. They are gaining a little "good" weight and have lost most of their excess fluid.
Kinnick has not been having as many seizures lately.
Her feedings have been going well recently. She is up to 7 ml every 3 hours (which isn't very much, but is more than the 1 ml they started with!) Her digestive system seems to be working okay at this point.
Carver's feedings were at 3 ml, but they temporarily stopped his feedings on Sunday. His stomach was getting bigger, so they stopped the feedings to see if it was possibly just gas. They'll probably try again soon.
Carver's lungs have been doing better. They've been trying to reduce his dependency on the ventilator and today were able to move him back to a different ventilator , like one that he had been on before. The first few hours on that machine have gone well today.
Kinnick continues to do well with her breathing. At times she is only needing 21% oxygen, which is the same as the air we breathe.
I mentioned previously that they were debating whether Carver's brain hemmorhage was a grade 3 or a grade 4. Now that it has shrunk some, they can tell that it was a grade 4 hemmorhage, which means there was some brain tissue damaged. At this point, they don't know the extent of the damage. Since the brain is still developing, it is possible that the brain might rewire itself to compensate for the damaged area. The portion of the brain that was damaged is responsible for motor skills. The doctors believe there is a 75% likelihood that he will have some degree of cerebral palsy. They will know more once they can do an MRI, but that will probably not be possible for a few months.
We continue to be optimistic and are up for the challenges that exist now, as well as the ones that lie ahead. We appreciate everyone's concern and interest.
The babies have both been doing pretty well the past few days. Kinnick continues to do better than Carver.
In my last update, I said that Kinnick had gotten bigger than Carver, but at that point, she still had some water weight due to swelling. She is back down to 1 lb. 11 oz. and Carver weighs 1 lb. 13 oz. They are gaining a little "good" weight and have lost most of their excess fluid.
Kinnick has not been having as many seizures lately.
Her feedings have been going well recently. She is up to 7 ml every 3 hours (which isn't very much, but is more than the 1 ml they started with!) Her digestive system seems to be working okay at this point.
Carver's feedings were at 3 ml, but they temporarily stopped his feedings on Sunday. His stomach was getting bigger, so they stopped the feedings to see if it was possibly just gas. They'll probably try again soon.
Carver's lungs have been doing better. They've been trying to reduce his dependency on the ventilator and today were able to move him back to a different ventilator , like one that he had been on before. The first few hours on that machine have gone well today.
Kinnick continues to do well with her breathing. At times she is only needing 21% oxygen, which is the same as the air we breathe.
I mentioned previously that they were debating whether Carver's brain hemmorhage was a grade 3 or a grade 4. Now that it has shrunk some, they can tell that it was a grade 4 hemmorhage, which means there was some brain tissue damaged. At this point, they don't know the extent of the damage. Since the brain is still developing, it is possible that the brain might rewire itself to compensate for the damaged area. The portion of the brain that was damaged is responsible for motor skills. The doctors believe there is a 75% likelihood that he will have some degree of cerebral palsy. They will know more once they can do an MRI, but that will probably not be possible for a few months.
We continue to be optimistic and are up for the challenges that exist now, as well as the ones that lie ahead. We appreciate everyone's concern and interest.
April 19th, 2007
Carver and Kinnick turned 3 weeks old Today!
They've both been doing pretty well the last few days.
Carver has lost nearly all of his excess fluid, and isn't nearly as swollen as he had been, which is good. He now weighs 1 lb. 11 oz.
Late on Wednesday he started eating a little bit, and hasn't shown any signs of problems with that yet.
His ventilator pipe keeps getting plugged with mucus, which is scary because the ventilator stops working.
Carver's brain scan on Tuesday came back a little better. There has been some debate as to whether it is a grade 3 or grade 4 hemmorhage.
Kinnick is up to 1 1b. 13 oz., so she now weighs more than Carver.
They've temporarily stopped Kinnick's feedings. They thought it was maybe causing problems, but aren't sure. So they might try to feed her some more on Friday.
She has had a lot seizures, and they're not really sure why. Some of that is normal for premature babies. They just watch for it and give her drugs to prevent more. A neurologist visits Kinnick every day.
It continues to be quite a roller coaster. I wish the babies were ready to go home, but that is likely at least several months away. The next hurdle is the babies making it to one month. We're told if they make it a month, they're doing really well.
They've both been doing pretty well the last few days.
Carver has lost nearly all of his excess fluid, and isn't nearly as swollen as he had been, which is good. He now weighs 1 lb. 11 oz.
Late on Wednesday he started eating a little bit, and hasn't shown any signs of problems with that yet.
His ventilator pipe keeps getting plugged with mucus, which is scary because the ventilator stops working.
Carver's brain scan on Tuesday came back a little better. There has been some debate as to whether it is a grade 3 or grade 4 hemmorhage.
Kinnick is up to 1 1b. 13 oz., so she now weighs more than Carver.
They've temporarily stopped Kinnick's feedings. They thought it was maybe causing problems, but aren't sure. So they might try to feed her some more on Friday.
She has had a lot seizures, and they're not really sure why. Some of that is normal for premature babies. They just watch for it and give her drugs to prevent more. A neurologist visits Kinnick every day.
It continues to be quite a roller coaster. I wish the babies were ready to go home, but that is likely at least several months away. The next hurdle is the babies making it to one month. We're told if they make it a month, they're doing really well.
April 16th, 2007
Kinnick had another brain scan today. One of her hemmorhages is completely gone and the other one is almost completely gone. This is a big surprise to the doctors, but obviously a very pleasant surprise!
Kinnick's feedings have also been going well. They've been taking it very slowly.
They ended up not starting Carver on feedings over the weekend, as was originally planned.
Carver is getting another brain scan today, which we are concerned about since the results of the last one wasn't very good.
Carver's lung is not collapsed anymore.
Just before we left the hospital, Carver's ventilator quit working for some reason. This led to some anxious moments. They were able to get it under control, but anything that stresses/traumatizes the babies is not good.
We are convinced people's prayers are helping and we are very appreciative of the prayers!
Kinnick's feedings have also been going well. They've been taking it very slowly.
They ended up not starting Carver on feedings over the weekend, as was originally planned.
Carver is getting another brain scan today, which we are concerned about since the results of the last one wasn't very good.
Carver's lung is not collapsed anymore.
Just before we left the hospital, Carver's ventilator quit working for some reason. This led to some anxious moments. They were able to get it under control, but anything that stresses/traumatizes the babies is not good.
We are convinced people's prayers are helping and we are very appreciative of the prayers!
April 14th, 2007
We are cautiously optimistic. Since the twins have been holding steady for the most part the last couple of days, we have been able to get more sleep.
Today they discovered that Carver has a collapsed lung. They had backed off his breathing machine some, so that he can become less dependent on it. Apparently one of the doctors adjusted it too much, which is frustrating.
Tthey started feeding both of the babies. This often brings on another set of problems for premature babies, since their digestive systems are underdeveloped. Their intestinal walls are very thin and one of the concerns is not wanting to cause holes in the intestinal walls. If that were to occur, it could require surgery. Pray that their bodies are able to handle the feedings.
Carver and Kinnick have both made it past the 2 week hurdle. Carver continues to struggle more than Kinnick. Statistically, babies born when they are only 23.4 weeks along, like the twins were, only have about a 25% chance of survival. We all hope and pray that Carver and Kinnick will both continue to beat the odds.
Today they discovered that Carver has a collapsed lung. They had backed off his breathing machine some, so that he can become less dependent on it. Apparently one of the doctors adjusted it too much, which is frustrating.
Tthey started feeding both of the babies. This often brings on another set of problems for premature babies, since their digestive systems are underdeveloped. Their intestinal walls are very thin and one of the concerns is not wanting to cause holes in the intestinal walls. If that were to occur, it could require surgery. Pray that their bodies are able to handle the feedings.
Carver and Kinnick have both made it past the 2 week hurdle. Carver continues to struggle more than Kinnick. Statistically, babies born when they are only 23.4 weeks along, like the twins were, only have about a 25% chance of survival. We all hope and pray that Carver and Kinnick will both continue to beat the odds.
April 13th, 2007
It continues to be a day by day, and hour by hour battle, with a number of ups and downs along the way for both Carver and Kinnick.
They have switched Carver to a different ventilator (high frequency oscillator), and he seems to be doing better.
Kinnick's breathing has been up and down some, but overall has improved since my last update.
Kinnick's brain scan last Wednesday showed that both her grade 1 and grade 2 hemmorhages are starting to get smaller (which is a positive sign.)
Unfortunately Carver had a brain scan last Wednesday and he has now developed a grade 3 hemmorhage. (There are four grades, with 4 being the most severe.) They did another brain scan on Friday, and the hemmorhage hadn't gotten any bigger, which is good.
Carver has also had some damage to his liver, kidneys, and intestines, since his body has been focusing most of its efforts on keeping his more vital organs, like his heart and lungs, working. They don't think this damage is long term and have already seen signs of this improving.
Both of the babies have been retaining too much fluid, and have had problems with swelling. Carver has been struggling with this more than Kinnick.
Once they're able to perform EEG's and/or MRI's on the babies, they will have a better idea what, if any, long term problems the twins might have. This won't occur until the twins get bigger, as the medical equipment is not small enough to get an accurate reading on babies this small.
Carver had a PDA Ligation on April 11th, 2007.
They have switched Carver to a different ventilator (high frequency oscillator), and he seems to be doing better.
Kinnick's breathing has been up and down some, but overall has improved since my last update.
Kinnick's brain scan last Wednesday showed that both her grade 1 and grade 2 hemmorhages are starting to get smaller (which is a positive sign.)
Unfortunately Carver had a brain scan last Wednesday and he has now developed a grade 3 hemmorhage. (There are four grades, with 4 being the most severe.) They did another brain scan on Friday, and the hemmorhage hadn't gotten any bigger, which is good.
Carver has also had some damage to his liver, kidneys, and intestines, since his body has been focusing most of its efforts on keeping his more vital organs, like his heart and lungs, working. They don't think this damage is long term and have already seen signs of this improving.
Both of the babies have been retaining too much fluid, and have had problems with swelling. Carver has been struggling with this more than Kinnick.
Once they're able to perform EEG's and/or MRI's on the babies, they will have a better idea what, if any, long term problems the twins might have. This won't occur until the twins get bigger, as the medical equipment is not small enough to get an accurate reading on babies this small.
Carver had a PDA Ligation on April 11th, 2007.
April 10th, 2007
Carver has taken a turn for the worse, and at one point they were afraid that he might not make it through the night last night. He has severe lung damage and is needing the venilator to breathe for him 100% of the time. They are going to do a brain scan on him today, as they are concerned that he might have developed some brain hemorrhages since his brain scan last Wednesday.
Kinnick is doing better than Carver, but she has also started struggling more recently. She is needing the ventilator to breathe more for her (about 60% now.) She is going to have a chest x-ray done today.
The doctors and nurses are continuing to try to adjust medications, machines etc.
Kinnick had a PDA Ligation on April 8th, 2007.
Kinnick is doing better than Carver, but she has also started struggling more recently. She is needing the ventilator to breathe more for her (about 60% now.) She is going to have a chest x-ray done today.
The doctors and nurses are continuing to try to adjust medications, machines etc.
Kinnick had a PDA Ligation on April 8th, 2007.
April 5th, 2007
We received the results of the brain scans, which were looking for hemorrhages in the brain. Carver did not have any hemmorhaging! He will have another scan when he is 28 days old. Kinnick has two hemmorhages. One is a grade 1 (basically a bruise) that will likely go away in a couple of weeks. The other is a grade 2, which is a little more concerning. It also might go away, or it might get bigger. She will have another scan on Wednesday April 11th.
Carver is currently needing the ventilator to breathe for him 75 - 100% of the time, so they are working to improve that. Kinnick is only needing the ventilator to breathe for her 30 - 35% of the time, which is what they want it to be at this point in time.
They both have lost some weight since their birth (which is normal, but of course they didn't have much weight to start with.) At one point, Carver was down to 1 lb. 4 oz. and Kinnick was down to 1 lb. 1/2 oz. Since then, they have both gained about 3 oz. back, and both are almost back to their birth weights.
Kinnick has "graduated" to an isolette, which is a more secure incubator, which provides her more protection from germs, noise etc. Carver has not moved to an isolette yet since he is not as stable, as he couldn't be reached quite as quickly in the isolette, if that need were to arise.
We are able to touch the babies when they're stable and are allowed to help change their diapers if we are available or in the room when this occurs. The twins have made it past the 1 week hurdle.
Carver is currently needing the ventilator to breathe for him 75 - 100% of the time, so they are working to improve that. Kinnick is only needing the ventilator to breathe for her 30 - 35% of the time, which is what they want it to be at this point in time.
They both have lost some weight since their birth (which is normal, but of course they didn't have much weight to start with.) At one point, Carver was down to 1 lb. 4 oz. and Kinnick was down to 1 lb. 1/2 oz. Since then, they have both gained about 3 oz. back, and both are almost back to their birth weights.
Kinnick has "graduated" to an isolette, which is a more secure incubator, which provides her more protection from germs, noise etc. Carver has not moved to an isolette yet since he is not as stable, as he couldn't be reached quite as quickly in the isolette, if that need were to arise.
We are able to touch the babies when they're stable and are allowed to help change their diapers if we are available or in the room when this occurs. The twins have made it past the 1 week hurdle.
Twins born at 23.4 weeks
I had been having mild contractions for about a week. They started becoming more frequent and I began having some pink discharge. It was the weekend, so I waited until Monday to call the doctor. I don't like feeling like I'm high maintenance. The nurse assured me that it was nothing and that it was probably just related to the weight of twins. She said that if I wanted to, I could have it checked out at the hospital, but it was probably nothing to worry about. So, I thought that I was just worried for nothing and decided not to go to the hospital. By Wednesday, the contractions became worse. I thought that if I went to bed and relaxed, the contractions would go away. Well, they didn't. They only got worse. I got up and took some benedryl. That didn't help, either. So, I took a warm bath and called the doctor while I soaked. It was 2:00 am. The nurse on call told me to go directly to the hospital. We got our 2 year old out of bed and headed for the hospital. I was sure that I would get a shot to stop the contractions and be sent back home. I was only 23 weeks, so there was no way I was having the babies. We got within a block of the hospital and my water broke. Now, I knew I was in trouble. They rushed us to a high risk delivery area. They didn't want to check me for dilation - They were afraid of causing infection. They quickly began a sonogram. The songram showed that I could possibly already be fully dialated. They gave me some literature to read about the odds of survival and complications of babies born at 23 weeks. I was supposed to make a decision in the next 5 minutes whether I wanted my babies to be resuscitated or not. The information showed that the babies had a 17-23% chance of surviving and had a good chance of having Cerbral Palsey, delayed learning, and mental retardation. All I could think about was that there was a chance my babies could survive and would be completely normal. So, of course I wanted them to resuscitate. Kinnick was born very quickly. I was unable to have a c-section. I had no idea what the risks were having her vaginally vs c-section. But, had no choice since she was already in the birth canal. Carver's bag hadn't broken. So, I was given a choice. Have a c-section or deliver vaginally. They were only 1 lb, so I thought that it wouldn't be a big deal to just deliver vaginally. So, that's what we did. However, the doctor suggested delivering him with his bag in tact. We were able to deliver him with bag in tact. It wasn't until later that I was told about the possibility of brain hemorrhages. If I would have known that, I may have chosen to have a c-section. Both babies were breach. Kinnick was frank breach. Carver was side-to-side. The doctor turned him and delivered him feet first. Thanks to the drug surfactant, they were able to resuscitate both babies.
Kinnick Kay and Carver Lee's Birthday
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