Happy New Years Eve!!
Received a call from Dr Anderson today. She said that Cooper looks great. Last time she saw him he was still on ecmo.
She did say that he didn't have a good night and was very agitated. They are opting to not put him on methadone at this time because the nurse on his case today was able to calm him down and get him to sleep. Hopefully they will be able to continue this, as we really do not want him to have to go on methadone.
They have also put him on prevacid. Last night he threw up several times and they are thinking that this is from his CDH. Go figure. We were told that this would happen, we just thought it would have happened a lot sooner. They are holding him to 70 mls per feedings and allowing him to eat of 1 1/2 hours instead of just 30 minutes. Hopefully this will help him as well. Maybe he will be able to take more by bottle as well. He may just need to eat slowly. Nothing like the other two who could down 8 ounces in less than 10 minutes and be looking for more.
Funny thing is when we asked the nurse if they had measured Cooper lately to see how long he was, she said 19 3/4 inches. I simply said that he shrunk because we were told that he was 20 1/2 inches at birth. She just laughed and said she would try to get a measurement on him later today and let us know. He did gain another 3 ounces yesterday and is up to 9 lbs 10 oz. A pound more than when he was born.
Thanks to mother nature, we will be staying in Lincoln today and hopefully be able to go up and see Cooper tomorrow.
Sonya
Friday, December 31, 2010
Thursday, December 30, 2010
12-30-10
Just a quick update tonight. And it's all second hand from Randy. The Huskers are on so I know he won't get this done.
The morphine has been stopped today. He seemed to have some problems calming down today, but they were able get him clam with a little bit of work. So, he is still morphine free.
Although one nurse had told me that a "full feed" is 70 ml, Randy was told today that for Cooper it is 85 mls. They were going to have him on 70 mls by the 8pm feeding tonight. Which means they will probably have him on 85 mls sometime tomorrow as long as he keeps tolerating these feeds. So far so good. He is only taking about 30 mls by bottle, but at least he is taking some by bottle. Once he is taking the 85 mls, they will stop the iv nutrition. Hopefully, they will pull the picc line either tomorrow or Saturday.
One of the surgeons stopped by today and said that he/they were very happy with his progress and that he is above the curve for CDH babies. That's our little guy!!
Here's to hoping that once Cooper adapts to being off the morphine, he will start taking more by bottle.
Go Huskers!!
Sonya
The morphine has been stopped today. He seemed to have some problems calming down today, but they were able get him clam with a little bit of work. So, he is still morphine free.
Although one nurse had told me that a "full feed" is 70 ml, Randy was told today that for Cooper it is 85 mls. They were going to have him on 70 mls by the 8pm feeding tonight. Which means they will probably have him on 85 mls sometime tomorrow as long as he keeps tolerating these feeds. So far so good. He is only taking about 30 mls by bottle, but at least he is taking some by bottle. Once he is taking the 85 mls, they will stop the iv nutrition. Hopefully, they will pull the picc line either tomorrow or Saturday.
One of the surgeons stopped by today and said that he/they were very happy with his progress and that he is above the curve for CDH babies. That's our little guy!!
Here's to hoping that once Cooper adapts to being off the morphine, he will start taking more by bottle.
Go Huskers!!
Sonya
Wednesday, December 29, 2010
Tuesday, December 28, 2010
12-28-10
So, this Tuesday is in the books as another great day for Cooper.
He keeps amazing us all. He is up to 30 mls per feeding. This is about an ounce every 3 hours. He took most of this by bottle today. However, at 5 he had taken all 30 mls by bottle, then abruptly threw it up all over him and me. Pretty sure that he just was eating a bit to fast and got to much air in his tummy and that was the reason he threw up. Nothing else. I was able to get him to take a little more by bottle, but then they had to give him the rest via his feeding tube. Per the nurse, they will increase the amount by 10 mls every day that he is able to tolerate this until he reaches 70 mls (of course this could change depending on the doctor on call at that time). Then will be the task of getting him to take it all by the bottle.
Once he is taking all his feedings by bottle for at least a day, they will transition him to what they call on demand feedings. Letting Cooper determine when and how much he eats, as long as he gets the required daily calories. Once he proves that he can do this, we could be heading home.
Cooper's morphine was weaned a little more today and he seemed to not even notice. So, tomorrow the plan is to go down yet again and hopefully off the morphine by Thursday.
Vicki, his nurse today, kind of got my hopes up. She is off until the 6th and she said that if he keeps going like he is, that he may not be there when she gets back. I would love that, but knowing Cooper, we won't be holding our breath. That would be fabulous as the other two are really starting to feel the separation from mom and dad.
Randy is going up to Omaha tomorrow to spend the next 2 days with him, and to learn how to feed him. And yes, it is different with Cooper since he didn't get to take a bottle right away. It is taking him longer to learn how to suck from the bottle and take enough food. But he's getting there.
Hoping that by this weekend cooper will be IV free. Guess we will see what Cooper has to say about all of this.
Sonya
He keeps amazing us all. He is up to 30 mls per feeding. This is about an ounce every 3 hours. He took most of this by bottle today. However, at 5 he had taken all 30 mls by bottle, then abruptly threw it up all over him and me. Pretty sure that he just was eating a bit to fast and got to much air in his tummy and that was the reason he threw up. Nothing else. I was able to get him to take a little more by bottle, but then they had to give him the rest via his feeding tube. Per the nurse, they will increase the amount by 10 mls every day that he is able to tolerate this until he reaches 70 mls (of course this could change depending on the doctor on call at that time). Then will be the task of getting him to take it all by the bottle.
Once he is taking all his feedings by bottle for at least a day, they will transition him to what they call on demand feedings. Letting Cooper determine when and how much he eats, as long as he gets the required daily calories. Once he proves that he can do this, we could be heading home.
Cooper's morphine was weaned a little more today and he seemed to not even notice. So, tomorrow the plan is to go down yet again and hopefully off the morphine by Thursday.
Vicki, his nurse today, kind of got my hopes up. She is off until the 6th and she said that if he keeps going like he is, that he may not be there when she gets back. I would love that, but knowing Cooper, we won't be holding our breath. That would be fabulous as the other two are really starting to feel the separation from mom and dad.
Randy is going up to Omaha tomorrow to spend the next 2 days with him, and to learn how to feed him. And yes, it is different with Cooper since he didn't get to take a bottle right away. It is taking him longer to learn how to suck from the bottle and take enough food. But he's getting there.
Hoping that by this weekend cooper will be IV free. Guess we will see what Cooper has to say about all of this.
Sonya
Monday, December 27, 2010
12-27-10
Another good day for Cooper.
The pentobarbitol is stopped and he is not having any side affects from coming off of this. The only pain med or sedative he is on is the morphine, and Dr Bolam wants to be very careful weaning him from this since he has been on it so long.
Cooper started eating yesterday. They started him on 10 mls and this morning they have already moved him up to 20 mls. I did his cares 3 times today. Meaning, I changed his diapers, took his temp, weighed him, gave him a sponge bath, and fed him. It was a wonderful day for me.
His weight had remained somewhat stable throughout this entire process. He didn't gain the fluid weight they thought he would. When they weighed him on Christmas, he had lost a little weight and was 8 lbs 7oz. He has gained weight again. Two days later he is 8 lbs 14 oz. He apparently likes this food thing. Today Cooper has taken on average 15 mls at each feeding. The remaining formula is fed to him by his NG tube.
Dr Bolam said today that they were going to push his feedings. Not 100% sure what that means, but the nurses are saying that they will probably go up by 10 mls per day as long as Cooper tolerates these increases. So, I asked what he would be taking if he hadn't had these problems and that would be 2 to 3 ounces. Or 60 to 90 mls. So, we are looking at another week at least with the feedings. Hope that he can be weaned off the morphine by the time he is up on the feedings.
Tomorrow, Grandma and Grandpa Baumert, along with Aunt Angel, are coming down to see Cooper. They will get to hold him for their first time and Angel will finally get to meet him.
Off to bed for me so I can be at the hospital for his 8 am feeding/cares.
Here's to more great days.
Sonya
The pentobarbitol is stopped and he is not having any side affects from coming off of this. The only pain med or sedative he is on is the morphine, and Dr Bolam wants to be very careful weaning him from this since he has been on it so long.
Cooper started eating yesterday. They started him on 10 mls and this morning they have already moved him up to 20 mls. I did his cares 3 times today. Meaning, I changed his diapers, took his temp, weighed him, gave him a sponge bath, and fed him. It was a wonderful day for me.
His weight had remained somewhat stable throughout this entire process. He didn't gain the fluid weight they thought he would. When they weighed him on Christmas, he had lost a little weight and was 8 lbs 7oz. He has gained weight again. Two days later he is 8 lbs 14 oz. He apparently likes this food thing. Today Cooper has taken on average 15 mls at each feeding. The remaining formula is fed to him by his NG tube.
Dr Bolam said today that they were going to push his feedings. Not 100% sure what that means, but the nurses are saying that they will probably go up by 10 mls per day as long as Cooper tolerates these increases. So, I asked what he would be taking if he hadn't had these problems and that would be 2 to 3 ounces. Or 60 to 90 mls. So, we are looking at another week at least with the feedings. Hope that he can be weaned off the morphine by the time he is up on the feedings.
Tomorrow, Grandma and Grandpa Baumert, along with Aunt Angel, are coming down to see Cooper. They will get to hold him for their first time and Angel will finally get to meet him.
Off to bed for me so I can be at the hospital for his 8 am feeding/cares.
Here's to more great days.
Sonya
Sunday, December 26, 2010
12-26-10
Merry Day after Christmas!!!
This was the best Christmas ever!! Thinking back, all Randy and I could have hoped for was for Cooper to be off ecmo by Christmas. As we all know, that happened earlier in the week. Tuesday to be exact. He was able to have his hernia repair surgery on Thursday. And Saturday, Christmas, before we could even get the kids over to see Cooper, they were able to take him off the vent all together.
So, on Christmas day, not only did Jaxon and Lea get to meet their little brother for the first time, but we got to hold him for the first time and hear him make noises. Didn't cry right away. They told us that it could take a little bit. They had him on supplemental oxygen when he came off the vent as well. He did have a new IV site in his head. Didn't like to see that, but whatever they needed to do.... The other good news was that they still hadn't needed to give him any fentanyl and they had reduced the pentobarbitol by half. Oh, and the kettamine was also stopped Christmas morning.
It was a great Christmas for us and made us the talk of the NICU and rounds on Sunday morning. Everyone was so happy for us and thought we had the best Christmas present ever. We completely agree.
This morning when we went over to see Cooper, he was sleeping. Actually sleeping and we really didn't want to wake him. So, we got the update from one of our favorite nurses, Amanda. She was just as excited as we were. She is one of the nurses that has been on Cooper's case from the start, and she is great.
So, the latest updates on Cooper...he is on room air. He is still off the fentanyl and they don't anticipate having to give him any again. The pentobarbitol was cut in half yet again and they hope to discontinue this by tomorrow morning. He received his last dose of Lasix at noon today. They have reduced the amount of morphine as well. However, they will need to go slower on the morphine since he has been on it for a while now. But, so far so good on reducing the pain meds and sedatives. He hasn't had any side affects or withdrawal symptoms that he could have had coming off of these.
The IV site on his head was taken out as well. His arterial line that was in his bellybutton was removed, as well as the staples from the hernia surgery.
The doctors all approved trying to get him to eat today. I actually was able to try to give him his first bottle. They started with 10 ml, but he only took 3 for me. The rest had to be given by his NG tube. So, he was able to get rid of 3 lines/tubes going into him and then gained one back. We just called and the nurse told us that he never did have any reflux or even any spit up from either the 11 am feeding or his 2 pm feeding. He actually took 7 mls at the 2 pm feeding. Cooper is figuring this out, and we couldn't be happier. The sooner he figures this out, the sooner he comes home.
And lastly, (I know, I'm long winded today) his chest x-ray today showed great improvement. His heart has moved yet a little more to a central location. His right lung is clearing up more. There had been some infiltrates, but they are mostly gone now. His left lung has expanded even more and now fills about 2/3 of the space. This a lot more than the doctors and we had even hoped for. The remaining space is full of fluid and there is a chance that once this is absorbed by the body, that he may get even more lung tissue to expand. They are hearing good breath sounds from this lung as well.
Looking back so far, it seems that once they switched the vents and the hernia repair surgery was done, Cooper just said "I feel better now" and he has made this great turn around. The nurses that have been on his case and even the others around the unit, are just as amazed as we are. We all are just as happy as can be and see the future as very bright. Even if he is in the NICU for another 4 weeks as they are anticipating, we are positive that Cooper will continue to amaze us from now on.
Sonya
This was the best Christmas ever!! Thinking back, all Randy and I could have hoped for was for Cooper to be off ecmo by Christmas. As we all know, that happened earlier in the week. Tuesday to be exact. He was able to have his hernia repair surgery on Thursday. And Saturday, Christmas, before we could even get the kids over to see Cooper, they were able to take him off the vent all together.
So, on Christmas day, not only did Jaxon and Lea get to meet their little brother for the first time, but we got to hold him for the first time and hear him make noises. Didn't cry right away. They told us that it could take a little bit. They had him on supplemental oxygen when he came off the vent as well. He did have a new IV site in his head. Didn't like to see that, but whatever they needed to do.... The other good news was that they still hadn't needed to give him any fentanyl and they had reduced the pentobarbitol by half. Oh, and the kettamine was also stopped Christmas morning.
It was a great Christmas for us and made us the talk of the NICU and rounds on Sunday morning. Everyone was so happy for us and thought we had the best Christmas present ever. We completely agree.
This morning when we went over to see Cooper, he was sleeping. Actually sleeping and we really didn't want to wake him. So, we got the update from one of our favorite nurses, Amanda. She was just as excited as we were. She is one of the nurses that has been on Cooper's case from the start, and she is great.
So, the latest updates on Cooper...he is on room air. He is still off the fentanyl and they don't anticipate having to give him any again. The pentobarbitol was cut in half yet again and they hope to discontinue this by tomorrow morning. He received his last dose of Lasix at noon today. They have reduced the amount of morphine as well. However, they will need to go slower on the morphine since he has been on it for a while now. But, so far so good on reducing the pain meds and sedatives. He hasn't had any side affects or withdrawal symptoms that he could have had coming off of these.
The IV site on his head was taken out as well. His arterial line that was in his bellybutton was removed, as well as the staples from the hernia surgery.
The doctors all approved trying to get him to eat today. I actually was able to try to give him his first bottle. They started with 10 ml, but he only took 3 for me. The rest had to be given by his NG tube. So, he was able to get rid of 3 lines/tubes going into him and then gained one back. We just called and the nurse told us that he never did have any reflux or even any spit up from either the 11 am feeding or his 2 pm feeding. He actually took 7 mls at the 2 pm feeding. Cooper is figuring this out, and we couldn't be happier. The sooner he figures this out, the sooner he comes home.
And lastly, (I know, I'm long winded today) his chest x-ray today showed great improvement. His heart has moved yet a little more to a central location. His right lung is clearing up more. There had been some infiltrates, but they are mostly gone now. His left lung has expanded even more and now fills about 2/3 of the space. This a lot more than the doctors and we had even hoped for. The remaining space is full of fluid and there is a chance that once this is absorbed by the body, that he may get even more lung tissue to expand. They are hearing good breath sounds from this lung as well.
Looking back so far, it seems that once they switched the vents and the hernia repair surgery was done, Cooper just said "I feel better now" and he has made this great turn around. The nurses that have been on his case and even the others around the unit, are just as amazed as we are. We all are just as happy as can be and see the future as very bright. Even if he is in the NICU for another 4 weeks as they are anticipating, we are positive that Cooper will continue to amaze us from now on.
Sonya
Saturday, December 25, 2010
Friday, December 24, 2010
12-24-10
Today was the first day one of us didn't go up to see Cooper. Thanks to the weather, we decided to stay in Lincoln, just to be on the safe side. We wanted to make sure that we were here for Jaxon and Lea and of course, Santa. Had to make sure the two older kids had Santa on Christmas morning.
We have talked to the nurses taking care of Cooper 3 times and the neonatologist actually called us today as well. The first two nurse reports were that Cooper was doing well and that they were still weaning him on the oxygen on the vent. He also had his foley catheter removed.
When the neonatologist called, we were a little scared. But, it was just an update. Cooper had been running some low grade fevers, but his white count had been fine. But, the doctor ordered another set of cultures on both blood and urine. We won't know until morning if there is actually any infection. They did start him on antibiotics just in case. This particular doctor is "Dr Positive". We don't care for him. He seems to be negative about everything. Everyone else is and has been telling us how great Cooper's doing, and this doctor tells us he's just doing ok and that we have to watch him closely because of all the medications he is on. This isn't something new. He's been on all of these meds for a while now. His partners are the ones who put him on these meds. He's just very frustrating.
Anyway, when we called tonight, the nurse told us that Cooper is doing great. His, oxygen on the vent is down to 26% and at 2 am they are going to reduce the pressures on the vent to its lowest settings to see how he does. Also, they have very slowly started reducing the kettemine and morphine. We had been warned that this could take a long time since he is on high doses of all of the meds. Good news is that the day nurse had stated that she never had to give him the fentanyl that was ordered on an as needed basis if he became too agitated. He is much calmer now. We don't know if the night nurse has had to give him any fentanyl.
Tomorrow is Christmas morning and we will be celebrating with all 3 kids. Tomorrow we are taking Jaxon and Lea to meet their little brother for the first time. Good news is, they have actually placed Cooper in a crib instead of the warmer he has been in for the past 2 weeks. Can't wait to see all 3 kids together.
Merry Christmas to everyone!
Sonya
We have talked to the nurses taking care of Cooper 3 times and the neonatologist actually called us today as well. The first two nurse reports were that Cooper was doing well and that they were still weaning him on the oxygen on the vent. He also had his foley catheter removed.
When the neonatologist called, we were a little scared. But, it was just an update. Cooper had been running some low grade fevers, but his white count had been fine. But, the doctor ordered another set of cultures on both blood and urine. We won't know until morning if there is actually any infection. They did start him on antibiotics just in case. This particular doctor is "Dr Positive". We don't care for him. He seems to be negative about everything. Everyone else is and has been telling us how great Cooper's doing, and this doctor tells us he's just doing ok and that we have to watch him closely because of all the medications he is on. This isn't something new. He's been on all of these meds for a while now. His partners are the ones who put him on these meds. He's just very frustrating.
Anyway, when we called tonight, the nurse told us that Cooper is doing great. His, oxygen on the vent is down to 26% and at 2 am they are going to reduce the pressures on the vent to its lowest settings to see how he does. Also, they have very slowly started reducing the kettemine and morphine. We had been warned that this could take a long time since he is on high doses of all of the meds. Good news is that the day nurse had stated that she never had to give him the fentanyl that was ordered on an as needed basis if he became too agitated. He is much calmer now. We don't know if the night nurse has had to give him any fentanyl.
Tomorrow is Christmas morning and we will be celebrating with all 3 kids. Tomorrow we are taking Jaxon and Lea to meet their little brother for the first time. Good news is, they have actually placed Cooper in a crib instead of the warmer he has been in for the past 2 weeks. Can't wait to see all 3 kids together.
Merry Christmas to everyone!
Sonya
Thursday, December 23, 2010
12-23-10
As you have all been reading from Randy's updates, Cooper is doing great. I thought I would just add my two cents in on all of this.
Cooper was to have his surgery to fix his CDH this morning at 7:30. They did not come get him until almost 7:30. They finally took him down to the OR at 7:40. The nurse then called us at 8:20 to tell us that they were just starting the surgery. Like we weren't already on edge with everything else, they were late starting the surgery. Then we got the call about 9:40 that they were closing and he did well.
Dr Azarow, Cooper's surgeon, came up to talk to us and was very happy with how well Cooper did during surgery. All of my pregnancy, we were told that it was only his stomach,and maybe a little bowel, that was up in his chest. We knew from his daily chest x-rays that his bowel had gone up into his chest as well. However, Dr Azarow found during surgery that his stomach, bowel, spleen, one kidney, and the left lobe of his liver were all up in his chest. Good news was that when he moved all of this back into his abdomen, they were able to see a good amount of lung tissue on the left side. We won't know how well it will work, but the nurse said she could definitely hear a difference from right after surgery and two hours later. She could hear better breathe sounds from the left side. Very promising.
When they took Cooper to surgery, his oxygen levels on the vent were at 40%. Now, Dr Azarow had warned us that he would probably get worse after surgery. But our little overachiever did so well that when they brought him back to his room, they weaned him down to 38% oxygen. All other vent settings remained the same. I don't remember what they were, but even the old neonatologist was impressed by how well Cooper was doing. They even had him off his dopamine by noon. They do not believe that he developed the pulmonary hypertension they thought he would. They will not do another echo unless they have any other indications that point them in that direction.
They would be able to move Cooper into a actual room in a day or two, if they had one available. The NICU is full. There are a couple of families that are supposed to be lucky enough to go home soon, so hopefully then we will be able to move to a room and out of the procedure room his is in currently. That will be wonderful and we can't wait for that day.
Tonight we are back in Lincoln. We wanted to beat the storm. Just had to make sure that we were in town for Jaxon and Lea. Couldn't miss Christmas Eve or Christmas morning with them. As long as the weather is good, we will be back up to see Cooper, with the kids, on Christmas day. Christmas together as a family. Can't wait.
Sonya
Cooper was to have his surgery to fix his CDH this morning at 7:30. They did not come get him until almost 7:30. They finally took him down to the OR at 7:40. The nurse then called us at 8:20 to tell us that they were just starting the surgery. Like we weren't already on edge with everything else, they were late starting the surgery. Then we got the call about 9:40 that they were closing and he did well.
Dr Azarow, Cooper's surgeon, came up to talk to us and was very happy with how well Cooper did during surgery. All of my pregnancy, we were told that it was only his stomach,and maybe a little bowel, that was up in his chest. We knew from his daily chest x-rays that his bowel had gone up into his chest as well. However, Dr Azarow found during surgery that his stomach, bowel, spleen, one kidney, and the left lobe of his liver were all up in his chest. Good news was that when he moved all of this back into his abdomen, they were able to see a good amount of lung tissue on the left side. We won't know how well it will work, but the nurse said she could definitely hear a difference from right after surgery and two hours later. She could hear better breathe sounds from the left side. Very promising.
When they took Cooper to surgery, his oxygen levels on the vent were at 40%. Now, Dr Azarow had warned us that he would probably get worse after surgery. But our little overachiever did so well that when they brought him back to his room, they weaned him down to 38% oxygen. All other vent settings remained the same. I don't remember what they were, but even the old neonatologist was impressed by how well Cooper was doing. They even had him off his dopamine by noon. They do not believe that he developed the pulmonary hypertension they thought he would. They will not do another echo unless they have any other indications that point them in that direction.
They would be able to move Cooper into a actual room in a day or two, if they had one available. The NICU is full. There are a couple of families that are supposed to be lucky enough to go home soon, so hopefully then we will be able to move to a room and out of the procedure room his is in currently. That will be wonderful and we can't wait for that day.
Tonight we are back in Lincoln. We wanted to beat the storm. Just had to make sure that we were in town for Jaxon and Lea. Couldn't miss Christmas Eve or Christmas morning with them. As long as the weather is good, we will be back up to see Cooper, with the kids, on Christmas day. Christmas together as a family. Can't wait.
Sonya
surgery this morning
Sorry we did not update last night. It was a long day.
He was scheduled to have surgery this morning at 7:30 to fix the hole in his diaphragm and bring his stomach and intestines down into his abdomen. They started surgery around 8:20. The nurse called a few minutes ago to say that they are closing him up and all went well! We are now just waiting for the doctor to come over and talk to us.
Cooper's nurse came in and told us that he will be down in the OR for a few minute but should be up here in about 20 to 30 minutes.
He will struggle for the first 24 to 48 hours the doctors say. It is just a matter of how much and how long he struggles. They have a lot of room to go up on his O2 and even a different ventilator if needed. So he should be good.
thanks for all the well wishes and the prayers!
Randy
He was scheduled to have surgery this morning at 7:30 to fix the hole in his diaphragm and bring his stomach and intestines down into his abdomen. They started surgery around 8:20. The nurse called a few minutes ago to say that they are closing him up and all went well! We are now just waiting for the doctor to come over and talk to us.
Cooper's nurse came in and told us that he will be down in the OR for a few minute but should be up here in about 20 to 30 minutes.
He will struggle for the first 24 to 48 hours the doctors say. It is just a matter of how much and how long he struggles. They have a lot of room to go up on his O2 and even a different ventilator if needed. So he should be good.
thanks for all the well wishes and the prayers!
Randy
Wednesday, December 22, 2010
out of surgery
Cooper is now off of ECMO! Surgery went well. He is now in recovery. Doctors say we will be able to see him soon. They are still saying his numbers are good. Doctors told us to go back the Ronald McDonald House and try to sleep. Probably won't happen but we are going to try.
The surgen is saying that if all goes well he will do the surgery to fix his CDH in a couple of days.
Randy
The surgen is saying that if all goes well he will do the surgery to fix his CDH in a couple of days.
Randy
12:03 phone call
Received a phone call from Dr. Zoc this morning. There was a hole in the ECMO tubing. At 11:20 they had to stop the ECMO machine and try to fix the tube. At 12:03 they called us to let us know that his numbers have been good but they are concered about putting him back on the ECMO because of blod clots. Sonya and I drove over to the hospital to meet with the doctors. There were a few people waiting for us when we got here!
They have decided to take him off of the ECMO! He is now in surgery! Will keep everyone updated as we go.
Randy
They have decided to take him off of the ECMO! He is now in surgery! Will keep everyone updated as we go.
Randy
Tuesday, December 21, 2010
12-21-10
It's 9:00 pm when I'm typing this latest entry. Let me just tell you that the last 13 hours have taken us through the roller coaster of emotions.
When Randy called this morning, around 8 am, the report was that Cooper had a "restless" night. They ended up going back to 100% ecmo. This was a big setback and meant starting at square one again.
When we arrived at the hospital, they had switched over to the conventional ventilator. We knew this was going to happen, but didn't realize that they would have to start him at 100% support and wean him off this before they could even think about weaning on the ecmo. Good news though. The parameters were to go down by 5% every 30 minutes as long as his saturations remained above 95%. He was able to achieve this by 4pm. Never missed a beat. And this was all with him still being somewhat restless.
One of the nurse practitioners finally had a grand idea to call the PICU and see what they use for sedation for ideas on what to use on Cooper. It paid off. They suggested pentobarbitol...and it worked. For the first time in days, he is actually sleeping soundly. He actually looks peaceful, finally.
When we left the hospital tonight, they had started to wean him off the ecmo. They were down to 93%. We are hoping that he will continue to do well throughout the night and be able to come down more. Both Randy and I are simply hoping that he will make it to about 80% by the time we get there in the morning. We just want him/them to take it nice and slow so he can adjust a little easier. Slow and steady wins the race.
Both the neonatologist and the surgeon are very hopeful now. They both said that Cooper seems to like the new vent better and he was looking good. No news today about when they were thinking about surgery and which surgery it would be. Even they are adapting to Cooper time.
So, the day started off with bad news, just draining us before the day even really started. And now it's ending with us full of hope again that Cooper may be off ecmo by Christmas.
Here's to hoping for a good night sleep for Cooper, for us, and for everyone else out there.
Sonya
When Randy called this morning, around 8 am, the report was that Cooper had a "restless" night. They ended up going back to 100% ecmo. This was a big setback and meant starting at square one again.
When we arrived at the hospital, they had switched over to the conventional ventilator. We knew this was going to happen, but didn't realize that they would have to start him at 100% support and wean him off this before they could even think about weaning on the ecmo. Good news though. The parameters were to go down by 5% every 30 minutes as long as his saturations remained above 95%. He was able to achieve this by 4pm. Never missed a beat. And this was all with him still being somewhat restless.
One of the nurse practitioners finally had a grand idea to call the PICU and see what they use for sedation for ideas on what to use on Cooper. It paid off. They suggested pentobarbitol...and it worked. For the first time in days, he is actually sleeping soundly. He actually looks peaceful, finally.
When we left the hospital tonight, they had started to wean him off the ecmo. They were down to 93%. We are hoping that he will continue to do well throughout the night and be able to come down more. Both Randy and I are simply hoping that he will make it to about 80% by the time we get there in the morning. We just want him/them to take it nice and slow so he can adjust a little easier. Slow and steady wins the race.
Both the neonatologist and the surgeon are very hopeful now. They both said that Cooper seems to like the new vent better and he was looking good. No news today about when they were thinking about surgery and which surgery it would be. Even they are adapting to Cooper time.
So, the day started off with bad news, just draining us before the day even really started. And now it's ending with us full of hope again that Cooper may be off ecmo by Christmas.
Here's to hoping for a good night sleep for Cooper, for us, and for everyone else out there.
Sonya
Monday, December 20, 2010
12-20-10
So, after a string of good to great days, we have hit a not so good day.
Cooper had hit a plateau and the weaning had stalled at 52% on the ecmo. Then of all things, due to a dirty diaper, Cooper through himself into a royal tizzy and really set himself back today.
Around noon today, I came back to his "room" and found him trying to get himself off his bed and nearly pulling out all his tubes. It was not a pretty sight. I had to help try to calm him down and they had to give him an extra dose of fentanyl. It seemed to calm him down for a few minutes, but about 10 minutes later he was trying to get off his bed again. Then the dirty diaper was found. It took 3 of us to try to keep him calm and clean him up. Once we got him mostly clean, he calmed down. They had to go back up on the ecmo settings to 62% due to his actions and his oxygen saturations dropping.
The plan for the rest of the day was to keep him calm and let him just recover from today. They were not going to try to wean him unless he was calm and looking great. As of last check, he was still pretty active and they had just kept him stable throughout the day.
The doctors have talked and they are changing him from the oscillating vent back to a conventional vent in the morning. They feel that he might do better on this type of vent. Then the hope is that they will be able to start the weaning process again and get him off ecmo within the next 48 hours. If not, the other talk is that they will do the hernia repair while on ecmo within the next 48 hours. They do not like to do this since he is on heparin while on ecmo to thin his blood. But the profusionist assured me that while there is a risk for bleeding, the risk is low that he wouldn't lose too much blood if they had to do the surgery while on ecmo.
So, we are just in a holding pattern until Cooper decides to let us in on his little secret as to when he is ready to come off ecmo. We are still hopeful that it will be before Christmas.
Just an exhausting day. But we are glad that he at least remained somewhat stable throughout the day.
Until tomorrow...
Sonya
Cooper had hit a plateau and the weaning had stalled at 52% on the ecmo. Then of all things, due to a dirty diaper, Cooper through himself into a royal tizzy and really set himself back today.
Around noon today, I came back to his "room" and found him trying to get himself off his bed and nearly pulling out all his tubes. It was not a pretty sight. I had to help try to calm him down and they had to give him an extra dose of fentanyl. It seemed to calm him down for a few minutes, but about 10 minutes later he was trying to get off his bed again. Then the dirty diaper was found. It took 3 of us to try to keep him calm and clean him up. Once we got him mostly clean, he calmed down. They had to go back up on the ecmo settings to 62% due to his actions and his oxygen saturations dropping.
The plan for the rest of the day was to keep him calm and let him just recover from today. They were not going to try to wean him unless he was calm and looking great. As of last check, he was still pretty active and they had just kept him stable throughout the day.
The doctors have talked and they are changing him from the oscillating vent back to a conventional vent in the morning. They feel that he might do better on this type of vent. Then the hope is that they will be able to start the weaning process again and get him off ecmo within the next 48 hours. If not, the other talk is that they will do the hernia repair while on ecmo within the next 48 hours. They do not like to do this since he is on heparin while on ecmo to thin his blood. But the profusionist assured me that while there is a risk for bleeding, the risk is low that he wouldn't lose too much blood if they had to do the surgery while on ecmo.
So, we are just in a holding pattern until Cooper decides to let us in on his little secret as to when he is ready to come off ecmo. We are still hopeful that it will be before Christmas.
Just an exhausting day. But we are glad that he at least remained somewhat stable throughout the day.
Until tomorrow...
Sonya
Sunday, December 19, 2010
12-19-10
Today started off on a really high note. Cooper was doing extremely well when we arrived at the hospital this morning. The hope was from all that he would continue to do well and that tomorrow he would be coming off ecmo. That would require the perfect day from him. It was a good day, but not a perfect day. And as we have always said, we don't need perfect, but will take all the good days we can get. They have been able to wean him a little bit more on the ecmo, but not where we were hoping he would be at this time. We just keep telling ourselves, this is not on our time at all, or even the doctor's time. This is all on Cooper's time.
Heck when we went to bed Friday night, we were hoping that he might be off ecmo by Christmas. So to be going to bed tonight with a slight (but still a chance) chance that he might be off ecmo soon, but also, he might be able to have his hernia repair by Christmas is just mind blowing to us. We still take one day at a time. It's hard to let ourselves be too hopeful knowing that we are on Cooper time and he has proven that even at 9 days old, he has a mind of his own and is stubborn as all get out.
We have been reminded that usually with the good comes the bad. They have told us that once he does come down off ecmo, it could be rough for a day or two. That more than likely he will appear sicker for a little while. Then again after the hernia repair, he will probably look bad for a little while.
We just checked in with the nurses and said that his 8pm gases were in the normal range and were able to wean a little bit again. Lets just hope that he continues to remain in the normal range throughout the night.
Had a fun night with friends and family tonight. Kids missed us and we missed them. It was nice to spend some time with them and some of our great friends. We are truly blessed to have all of these wonderful people in our lives. And they allowed us to have a little fun and help us just to relax and not think only about Cooper. Who knew a dancing game could make us laugh so hard. A big thanks to them all. You all are fabulous people and we could never repay you for all that you are and have done for us.
Here's to a quiet night and a hopeful tomorrow.
Sonya
Heck when we went to bed Friday night, we were hoping that he might be off ecmo by Christmas. So to be going to bed tonight with a slight (but still a chance) chance that he might be off ecmo soon, but also, he might be able to have his hernia repair by Christmas is just mind blowing to us. We still take one day at a time. It's hard to let ourselves be too hopeful knowing that we are on Cooper time and he has proven that even at 9 days old, he has a mind of his own and is stubborn as all get out.
We have been reminded that usually with the good comes the bad. They have told us that once he does come down off ecmo, it could be rough for a day or two. That more than likely he will appear sicker for a little while. Then again after the hernia repair, he will probably look bad for a little while.
We just checked in with the nurses and said that his 8pm gases were in the normal range and were able to wean a little bit again. Lets just hope that he continues to remain in the normal range throughout the night.
Had a fun night with friends and family tonight. Kids missed us and we missed them. It was nice to spend some time with them and some of our great friends. We are truly blessed to have all of these wonderful people in our lives. And they allowed us to have a little fun and help us just to relax and not think only about Cooper. Who knew a dancing game could make us laugh so hard. A big thanks to them all. You all are fabulous people and we could never repay you for all that you are and have done for us.
Here's to a quiet night and a hopeful tomorrow.
Sonya
Saturday, December 18, 2010
12-18-10
Happy Saturday!!
We had another good day! The wean off the ecmo has started. Per Dr. Anderson, if Cooper's PO2, oxygen level in his blood, remains above 80, they will wean him by 2%. This is every 2 hours. Well, they have been able to do that every 2 hours today, starting at noon, except for the 8pm check. One out of all of those isn't bad. He is down to 87% oxygen being supplied to him by the ecmo. Hopefully, he will be able to wean again at the 10pm check. Just as an FYI, they will wean him down to 30% oxygen. Room air is 21%.
Everything else remains the same. Which is good. His PO2 level was still within the normal range at 8, but not above 80. So, we are very hopeful that he will be off ecmo within the next few days.
The doctors are hoping that he is off before then too, because the surgeons would prefer not to do surgery on Christmas day or even Christmas Eve. Frankly, I hope that they are able to before as well. I mean we won't care when he has to have surgery, but we wouldn't want to have to spend Christmas day waiting here for surgery.
On a note for me, I'm so excited that today is the first day I haven't been swollen like a balloon. Lea and Jaxon had a little early Christmas with Grandma and Grandpa Baumert and Aunt Angel and Aunt Tracey. They are very excited about all their new toys. Randy, unfortunately has a headache today. So, he is the only one who has had a bad day. But, when you look at the big picture, he had a great day too because everyone else has had a great day.
Here's to hoping everyone else out there had a great day as well.
Sonya
We had another good day! The wean off the ecmo has started. Per Dr. Anderson, if Cooper's PO2, oxygen level in his blood, remains above 80, they will wean him by 2%. This is every 2 hours. Well, they have been able to do that every 2 hours today, starting at noon, except for the 8pm check. One out of all of those isn't bad. He is down to 87% oxygen being supplied to him by the ecmo. Hopefully, he will be able to wean again at the 10pm check. Just as an FYI, they will wean him down to 30% oxygen. Room air is 21%.
Everything else remains the same. Which is good. His PO2 level was still within the normal range at 8, but not above 80. So, we are very hopeful that he will be off ecmo within the next few days.
The doctors are hoping that he is off before then too, because the surgeons would prefer not to do surgery on Christmas day or even Christmas Eve. Frankly, I hope that they are able to before as well. I mean we won't care when he has to have surgery, but we wouldn't want to have to spend Christmas day waiting here for surgery.
On a note for me, I'm so excited that today is the first day I haven't been swollen like a balloon. Lea and Jaxon had a little early Christmas with Grandma and Grandpa Baumert and Aunt Angel and Aunt Tracey. They are very excited about all their new toys. Randy, unfortunately has a headache today. So, he is the only one who has had a bad day. But, when you look at the big picture, he had a great day too because everyone else has had a great day.
Here's to hoping everyone else out there had a great day as well.
Sonya
Friday, December 17, 2010
12-17-10
A fabulous day today in Cooper's world.
Lots of little things that made it a great day for Cooper. The ketamine is still kind of working. He still is a little restless today, but it wasn't affecting his numbers like it has in the past. They were able to come back down on the flow of the ecmo. They were also able to start weaning the oxygen levels they are supplying to the blood. Only by 2%, but they have to start somewhere. The good news was that he didn't notice the change. Meaning, he is starting to respond and his little body is starting to do the work that the machines have been doing for him.
All his numbers looked great all day long. His daily chest x-ray showed a possible improvement on the left lung. However the doctor said that she may have made herself see an improvement. If anything, it remained unchanged. He also had an echo today and were told that he had a remarkable change. We were baffled by this since we were always told that his other echos were normal. Turns out that previously his numbers were elevated but didn't need intervention. They had been in the 60's and now are in the 30's. Per the doctor, this is just another great step for Cooper. They have been waiting for this so they can start weaning him off the ecmo and other meds.
Since Cooper has been peeing like a champ, they are going to wean him off the dopamine (blood pressure medicine). He has only been on a dose to help profuse his kidneys, so this will be good for him to get off this anyway. And on the plumbing standpoint, he pooped today as well. Yippee. Ok, I know it's just a bowel movement, but it's his first real one ever. And they had been hoping that once this started it might help get the remaining air out of his stomach and bowel that is up in his chest. This would give his lung more room to possibly respond. Any lung he can get on the left will be great. The doctors have all said that there is a chance that if given enough room, some of the left lung may open up. We are hoping that this will work.
This was a great day!
Sonya
Lots of little things that made it a great day for Cooper. The ketamine is still kind of working. He still is a little restless today, but it wasn't affecting his numbers like it has in the past. They were able to come back down on the flow of the ecmo. They were also able to start weaning the oxygen levels they are supplying to the blood. Only by 2%, but they have to start somewhere. The good news was that he didn't notice the change. Meaning, he is starting to respond and his little body is starting to do the work that the machines have been doing for him.
All his numbers looked great all day long. His daily chest x-ray showed a possible improvement on the left lung. However the doctor said that she may have made herself see an improvement. If anything, it remained unchanged. He also had an echo today and were told that he had a remarkable change. We were baffled by this since we were always told that his other echos were normal. Turns out that previously his numbers were elevated but didn't need intervention. They had been in the 60's and now are in the 30's. Per the doctor, this is just another great step for Cooper. They have been waiting for this so they can start weaning him off the ecmo and other meds.
Since Cooper has been peeing like a champ, they are going to wean him off the dopamine (blood pressure medicine). He has only been on a dose to help profuse his kidneys, so this will be good for him to get off this anyway. And on the plumbing standpoint, he pooped today as well. Yippee. Ok, I know it's just a bowel movement, but it's his first real one ever. And they had been hoping that once this started it might help get the remaining air out of his stomach and bowel that is up in his chest. This would give his lung more room to possibly respond. Any lung he can get on the left will be great. The doctors have all said that there is a chance that if given enough room, some of the left lung may open up. We are hoping that this will work.
This was a great day!
Sonya
Thursday, December 16, 2010
12-16-10
Another day in the interesting life of Cooper.
So, last night they tried morphine on the little guy. Still no reaction from him. Meaning that he was still awake after a double dose. The doctor said she had given him enough morphine to put 3 of us adults on the floor and he was still awake. Through all of this, he has remained stable. All of his numbers look great. The doctor is just stumped by Cooper.
So, they (meaning the doctors and the anesthesiologists) have decided to try Ketamine on him. Yes, I said Ketamine. This is a "dissociative anesthesia" and by our last call to the NICU, is working on him. So, I say great, my son likes his recreational drugs. I know this is prescription and is being used in the correct manor and correct dosage, but it's just the stigma of ketamine. But it's working, so I'm not going to complain too much. If it continues to work, heck I'll let them try almost anything.
So, we are at home with the Jaxon and Lea, and watching Despicable Me. So, far it's a very funny movie. Enjoying my time with these two.
Hope everyone has a good night.
Sonya
So, last night they tried morphine on the little guy. Still no reaction from him. Meaning that he was still awake after a double dose. The doctor said she had given him enough morphine to put 3 of us adults on the floor and he was still awake. Through all of this, he has remained stable. All of his numbers look great. The doctor is just stumped by Cooper.
So, they (meaning the doctors and the anesthesiologists) have decided to try Ketamine on him. Yes, I said Ketamine. This is a "dissociative anesthesia" and by our last call to the NICU, is working on him. So, I say great, my son likes his recreational drugs. I know this is prescription and is being used in the correct manor and correct dosage, but it's just the stigma of ketamine. But it's working, so I'm not going to complain too much. If it continues to work, heck I'll let them try almost anything.
So, we are at home with the Jaxon and Lea, and watching Despicable Me. So, far it's a very funny movie. Enjoying my time with these two.
Hope everyone has a good night.
Sonya
Wednesday, December 15, 2010
12-15-10
Hello all. Today was a pretty quiet day. Only had a little bit of a scare about mid-afternoon today. One of the numbers on one of the many machines was coming back abnormal. The doctor at first could not tell if it was a machine error or if it was a correct abnormal reading. The next thing we know, there are 4 doctors and 2 nurses in his room. They re-calibrated the machine and found out that it was an abnormal reading. Now to try to figure out what was going on with Cooper.
Turns out that he is just to feisty. The fentanyl (sedative) that they had been giving them just wasn't working. His doctor tells us that she had given him more fentanyl in the past 1 1/2 hour that he should have been knocked out. She said that the baby in the next room, who was undergoing surgery at the time probably didn't get as much fentanyl as she had given him. So, they decided to try him on morphine.
Well, the morphine worked. All his numbers are stable. He is calmer now and letting the machines do their jobs.
He is a feisty fighter. All the nurses and the doctor have said that it's a good thing, but that they just needed him to calm down a bit. One of the nurses turned to me and said "you better get your running shoes on, because when he is out of here, you are going to be running after him a lot." All I could do is smile. I can't wait to be chasing after him.
In Lincoln for the night. Needed to get hugs from the other 2 cuties in my life. Jaxon and Lea were so excited to see us. If the roads clear up in the morning, I will head back up to Omaha for a few hours tomorrow. Randy needs to go in to work tomorrow. We were hoping for a miracle and that we wouldn't have to spend a lot of time in Omaha, but whatever it takes for him to get better and come home. Just hope that we don't have a lot of terrible weather coming so we can make it back and forth to Omaha and spend time with all of our kids.
Have a good night all.
Sonya
Turns out that he is just to feisty. The fentanyl (sedative) that they had been giving them just wasn't working. His doctor tells us that she had given him more fentanyl in the past 1 1/2 hour that he should have been knocked out. She said that the baby in the next room, who was undergoing surgery at the time probably didn't get as much fentanyl as she had given him. So, they decided to try him on morphine.
Well, the morphine worked. All his numbers are stable. He is calmer now and letting the machines do their jobs.
He is a feisty fighter. All the nurses and the doctor have said that it's a good thing, but that they just needed him to calm down a bit. One of the nurses turned to me and said "you better get your running shoes on, because when he is out of here, you are going to be running after him a lot." All I could do is smile. I can't wait to be chasing after him.
In Lincoln for the night. Needed to get hugs from the other 2 cuties in my life. Jaxon and Lea were so excited to see us. If the roads clear up in the morning, I will head back up to Omaha for a few hours tomorrow. Randy needs to go in to work tomorrow. We were hoping for a miracle and that we wouldn't have to spend a lot of time in Omaha, but whatever it takes for him to get better and come home. Just hope that we don't have a lot of terrible weather coming so we can make it back and forth to Omaha and spend time with all of our kids.
Have a good night all.
Sonya
Tuesday, December 14, 2010
12/14
Today Cooper got a new machine in his room. Don/t know the name of it but it monitors the oxygen going to his brain. Not that they are worried about the oxygen to the brain just that they now have this machine. It has been used on adults in the past but Cooper is one of the first babies to have this devise.
His stats are still stable. They are getting better slowly. He did have some problems overnight. They gave him Versed, for pain. He did not like that med, neither does his dad. They had to strap him down. That is probably a bad way to describe it but basically his arms are not allowed to move around as much. He keeps trying to pull out his wires and hoses. They are trying to keep him sedated so he stops breathing over the vent.. He needs to lay still and let the vent do the work
We are now allowed to touch him again. We just have to touch him differently. People are no longer allowed to stroke him. If you touch him you have to just hold your hand still. When you stroke him he gets over stimulated.
He was awake and sticking his tongue out again today. His eyes were open and would look at us. He keeps trying to move his head. Which is not a good thing since he has a tube in his jugular.
Will try to post again later.
Randy
His stats are still stable. They are getting better slowly. He did have some problems overnight. They gave him Versed, for pain. He did not like that med, neither does his dad. They had to strap him down. That is probably a bad way to describe it but basically his arms are not allowed to move around as much. He keeps trying to pull out his wires and hoses. They are trying to keep him sedated so he stops breathing over the vent.. He needs to lay still and let the vent do the work
We are now allowed to touch him again. We just have to touch him differently. People are no longer allowed to stroke him. If you touch him you have to just hold your hand still. When you stroke him he gets over stimulated.
He was awake and sticking his tongue out again today. His eyes were open and would look at us. He keeps trying to move his head. Which is not a good thing since he has a tube in his jugular.
Will try to post again later.
Randy
Monday, December 13, 2010
12-13-10
Cooper is stable. I know we keep saying that, but right now that is all there is to say. Not many changes happening at all. His blood gases have remained stable with no improvements but no regression either. Not sure the results of the echo, because the doctor did not have the results when we had the chance to meet with her. However, tonight, when we asked the nurse, she said they didn't hear one way or the other, so they assume that it remained the same as well.
The doctor did tell us that she and her partners have reviewed Cooper's case and seeing how he's been doing, they do not expect him to come off ecmo for about 2 weeks. This puts us at about Christmas when he might come off ecmo. that would be a great Christmas present to see him off of that big ugly machine.
His chest xray this morning did show some fluid in the tissue around his chest cavity, so they have had to start him on a diuretic. They say that this is just normal since he is not able to move and that is what keeps all of us from filling up with fluid.
They have added yet another machine to his already crowded room. This one has two sensors attached to his head measuring the oxygen his brain is getting. The nurses have told us that there is no real need for it, but they have the technology now so they are using it. His numbers were good on it, so to me it's just another space in the already small room being used up by another machine.
They have had to sedate him a little more again because he just gets agitated and tries to over-breathe the ventilator. So, they have asked us to limit the touching because this does stimulate him. It is very hard not to be able to touch him. We haven't been able to hold him yet because of the ecmo and now not being able to touch him is very hard. There are a lot of things that we take for granted when our babies are born healthy. Like being able to hear them cry for the first time. We hope that soon we will be able to do all these things with Cooper.
More updates to come as we learn anything new or anything changes.
Thanks to everyone for the prayers and good thoughts.
Sonya
The doctor did tell us that she and her partners have reviewed Cooper's case and seeing how he's been doing, they do not expect him to come off ecmo for about 2 weeks. This puts us at about Christmas when he might come off ecmo. that would be a great Christmas present to see him off of that big ugly machine.
His chest xray this morning did show some fluid in the tissue around his chest cavity, so they have had to start him on a diuretic. They say that this is just normal since he is not able to move and that is what keeps all of us from filling up with fluid.
They have added yet another machine to his already crowded room. This one has two sensors attached to his head measuring the oxygen his brain is getting. The nurses have told us that there is no real need for it, but they have the technology now so they are using it. His numbers were good on it, so to me it's just another space in the already small room being used up by another machine.
They have had to sedate him a little more again because he just gets agitated and tries to over-breathe the ventilator. So, they have asked us to limit the touching because this does stimulate him. It is very hard not to be able to touch him. We haven't been able to hold him yet because of the ecmo and now not being able to touch him is very hard. There are a lot of things that we take for granted when our babies are born healthy. Like being able to hear them cry for the first time. We hope that soon we will be able to do all these things with Cooper.
More updates to come as we learn anything new or anything changes.
Thanks to everyone for the prayers and good thoughts.
Sonya
12-13-10
Good Morning All
I was discharged from the hospital yesterday and Cooper was stable, so we decided to come home for the night and surprise the kids. It was great seeing their surprised little faces. They have been handling this so well. We are very proud of them. It was also nice to sleep in our own bed. Verleen, who is up for sister-in-law of a lifetime, is going to be staying with the kids here at the house while we are in Omaha. This way the kids will have some routine.
We have called up to the NICU this morning and Cooper is still stable and not fighting the vent as much right now. He is finally listening to his parents and letting the machines do their jobs. He is scheduled to have another chest x-ray, echo, and ultrasound today. We will head up there a little later this morning to be with him. Hopefully this will give them enough time to have these tests done and give us the updates.
We are just happy that he has been stable now for over 24 hours and continue to pray that he will remain stable. We would like to say a big thanks to everyone for all the prayers and good thoughts that have been sent our way. It is greatly appreciated.
Until the next update, have a good Monday.
Sonya
I was discharged from the hospital yesterday and Cooper was stable, so we decided to come home for the night and surprise the kids. It was great seeing their surprised little faces. They have been handling this so well. We are very proud of them. It was also nice to sleep in our own bed. Verleen, who is up for sister-in-law of a lifetime, is going to be staying with the kids here at the house while we are in Omaha. This way the kids will have some routine.
We have called up to the NICU this morning and Cooper is still stable and not fighting the vent as much right now. He is finally listening to his parents and letting the machines do their jobs. He is scheduled to have another chest x-ray, echo, and ultrasound today. We will head up there a little later this morning to be with him. Hopefully this will give them enough time to have these tests done and give us the updates.
We are just happy that he has been stable now for over 24 hours and continue to pray that he will remain stable. We would like to say a big thanks to everyone for all the prayers and good thoughts that have been sent our way. It is greatly appreciated.
Until the next update, have a good Monday.
Sonya
Saturday, December 11, 2010
12-11-2010
Well, it's been a rough last 12 hours.
To start with, Cooper Payne Leo Jensen was born on 12-10-10 at 6:14 pm. He weighed in at 8 pounds 10 ounces and is 20 1/2 inches long. Just like the other 2, it only took 10 hours from the time we checked in until he arrived. They immediately took him to be intubated, which we were expecting. We got to see him for about a minute before they whisked him off to the NICU. We were able to finally see him about 3 hours later.
At that time the doctors were all hopeful and said that he was doing very well. Better than expected. One of the doctors did say that it could just be the "honeymoon phase", and that he could get worse, but was still hopeful. Well, it was just the honeymoon phase and over the last 12 hours Cooper has really taken a turn for the worse.
The doctors have tried everything they can to keep his CO2 levels normal, but they keep climbing. Cooper was trying to breathe on his own and kept fighting the vent so they gave him a medicine that paralyzed him so the vent could do the work instead of him. That hasn't given the doctors the response they were hoping for. His CO2 levels improved for just a bit before climbing back into the 70's. Normal is 35-45. So, the next option for optimal results, the doctors feel, is to place Cooper on ecmo.
Currently, he is undergoing this surgery to place him on ecmo. The surgeon was hopeful, but of course there are risks. So, we are anxiously waiting to hear from the surgeon on how the procedure went. We continue to be hopeful, but the surgeon did say that Cooper's survival rate has gone down to 50% now that he was being placed on ecmo.
He is the most handsome little boy around. OK, maybe second to Jaxon, but he still is darn cute. He is definitely the cutest little boy here in the hospital. We will continue to be hopeful that he will turn out just fine. This just puts our coming home date back a few days or so.
Please keep the prayers for Cooper coming. He's strong, but needs some higher help right now. Thank you all.
To start with, Cooper Payne Leo Jensen was born on 12-10-10 at 6:14 pm. He weighed in at 8 pounds 10 ounces and is 20 1/2 inches long. Just like the other 2, it only took 10 hours from the time we checked in until he arrived. They immediately took him to be intubated, which we were expecting. We got to see him for about a minute before they whisked him off to the NICU. We were able to finally see him about 3 hours later.
At that time the doctors were all hopeful and said that he was doing very well. Better than expected. One of the doctors did say that it could just be the "honeymoon phase", and that he could get worse, but was still hopeful. Well, it was just the honeymoon phase and over the last 12 hours Cooper has really taken a turn for the worse.
The doctors have tried everything they can to keep his CO2 levels normal, but they keep climbing. Cooper was trying to breathe on his own and kept fighting the vent so they gave him a medicine that paralyzed him so the vent could do the work instead of him. That hasn't given the doctors the response they were hoping for. His CO2 levels improved for just a bit before climbing back into the 70's. Normal is 35-45. So, the next option for optimal results, the doctors feel, is to place Cooper on ecmo.
Currently, he is undergoing this surgery to place him on ecmo. The surgeon was hopeful, but of course there are risks. So, we are anxiously waiting to hear from the surgeon on how the procedure went. We continue to be hopeful, but the surgeon did say that Cooper's survival rate has gone down to 50% now that he was being placed on ecmo.
He is the most handsome little boy around. OK, maybe second to Jaxon, but he still is darn cute. He is definitely the cutest little boy here in the hospital. We will continue to be hopeful that he will turn out just fine. This just puts our coming home date back a few days or so.
Please keep the prayers for Cooper coming. He's strong, but needs some higher help right now. Thank you all.
Tuesday, December 7, 2010
12-07-10
Just wanted to post a brief update. I had the growth ultrasound yesterday and...yep, they are guessing big. By measurements they are estimating that he is 9 pounds 8 ounces. Now, they also say there is obviously room for error. About a pound either way. Let's just hope that it is a pound less.
The tech says it is hard to get an accurate measurement on him for 2 reasons. First, he has the Baumert head. Nice and big and round. The machine only calculates up to 41 weeks and his maxed that out. So, there is not an accurate measurement of how stubborn, I mean big headed he is. Second, they measure the abdomen at stomach level and since his stomach is up they have to guess about where to measure the abdomen. But the third measurement is his femur and that was measuring big too, so she thought that he was going to be at least 8 pounds 8 ounces. I guess we will see on Friday.
Sonya
The tech says it is hard to get an accurate measurement on him for 2 reasons. First, he has the Baumert head. Nice and big and round. The machine only calculates up to 41 weeks and his maxed that out. So, there is not an accurate measurement of how stubborn, I mean big headed he is. Second, they measure the abdomen at stomach level and since his stomach is up they have to guess about where to measure the abdomen. But the third measurement is his femur and that was measuring big too, so she thought that he was going to be at least 8 pounds 8 ounces. I guess we will see on Friday.
Sonya
Sunday, December 5, 2010
12/05/5010
So, trying out this blog thing to see if this helps keep everyone updated that wants to be updated on our little man Jensen. I am not the most computer savvy person, so I had to google how to create this, and was pleasantly surprised at how easy it was. I have people who would/are rolling their eyes at me, but I didn't think they wanted me calling them at 5:30 this morning when the thought came to me.
Anyway, there is only 5 days left until we will get to meet our new little guy. As you know, it's been a bit of a bumpy ride for us. He still is doing well, however, he is wreaking havoc on me. I have "typical" pregnancy edema (swelling). Except that I have had it now for the last 5 weeks and have had to get those lovely and ever so stylish compression stockings to wear. But myblood pressure has been in check except for my last visit this past Friday. It was just slightly elevated (which happened with the other two kids also). Oh, and my ribs on my left side separated about 2 months ago already and make it impossible to sleep more than a couple hours at a time. So, I'm actually very anxious for him to get here as the doc says this will resolve once he is born.
I will have one more ultrasound this week to see how big they estimate him to be. Right now if their estimations are right....UGH! At 30 weeks they thought he was 3 pounds 8 ounces. At 34 weeks they thought he was 6 pounds 8 ounces. So, if he keeps growing at that rate, he may easily be a 9 pound, not so little guy. It will be interesting to see what they have to say.
One of the more interesting things about this entire process has been that we met Brittney's doppelganger. When we met with the neonatologist, she walked into the room and both Randy and I did a double take. It was a little hard to concentrate on everything she was saying at first. After our consult, we both just looked at each other and said she looks just like Brittney.
We have know idea how long our "little" guy will be in the hospital. We have been told to expect 6 to 8 weeks because that is what the average is for babies that have this type of defect. However, they have only had a few cases where the defect is small like his. Most of these cases involve multiple organs in the chest cavity. Not to say that he may not be in that long, but that there is a better chance that he won't because as of now, it is still only his stomach that is up there. In the same breath the doctor did say that there are many cases where the defect wasn't found until after the baby was born. And in those cases, the baby came in for surgery and was back home within 24 hours. No problems. So, I believe that we have every right to believe that since we know what we are facing, and the doctors are prepared for all of this, we will be home by Christmas. Positive thoughts!!
He's a fighter already (believe me, my kidneys can't take much more). We are going up to Omaha Friday (12/10/10) morning to be induced. Just for logistical reasons. You know...live in Lincoln, need to deliver in Omaha...and oh yeah it's December in Nebraska. Who knows what the weather is going to do. As of right now the forecast is just cold. Hoping that it will stay that way.
Jaxon and Lea are doing great. Trying to get them ready for all of this has been a challenge. Jaxon seems to get it a little, but Lea obviously doesn't. Jaxon has been acting out a little about all of this. He's fighting for attention anyway he can. Lea, well, she thinks she's a diva and everything has to go her way. So, I'm glad this is another boy.
I'm hoping this will be easier to keep everyone who wants to know up to date. Remember, please send your prayers and POSITIVE thoughts this way and he will be fine and we will be having Christmas at home with all of our children.
Sonya
Anyway, there is only 5 days left until we will get to meet our new little guy. As you know, it's been a bit of a bumpy ride for us. He still is doing well, however, he is wreaking havoc on me. I have "typical" pregnancy edema (swelling). Except that I have had it now for the last 5 weeks and have had to get those lovely and ever so stylish compression stockings to wear. But myblood pressure has been in check except for my last visit this past Friday. It was just slightly elevated (which happened with the other two kids also). Oh, and my ribs on my left side separated about 2 months ago already and make it impossible to sleep more than a couple hours at a time. So, I'm actually very anxious for him to get here as the doc says this will resolve once he is born.
I will have one more ultrasound this week to see how big they estimate him to be. Right now if their estimations are right....UGH! At 30 weeks they thought he was 3 pounds 8 ounces. At 34 weeks they thought he was 6 pounds 8 ounces. So, if he keeps growing at that rate, he may easily be a 9 pound, not so little guy. It will be interesting to see what they have to say.
One of the more interesting things about this entire process has been that we met Brittney's doppelganger. When we met with the neonatologist, she walked into the room and both Randy and I did a double take. It was a little hard to concentrate on everything she was saying at first. After our consult, we both just looked at each other and said she looks just like Brittney.
We have know idea how long our "little" guy will be in the hospital. We have been told to expect 6 to 8 weeks because that is what the average is for babies that have this type of defect. However, they have only had a few cases where the defect is small like his. Most of these cases involve multiple organs in the chest cavity. Not to say that he may not be in that long, but that there is a better chance that he won't because as of now, it is still only his stomach that is up there. In the same breath the doctor did say that there are many cases where the defect wasn't found until after the baby was born. And in those cases, the baby came in for surgery and was back home within 24 hours. No problems. So, I believe that we have every right to believe that since we know what we are facing, and the doctors are prepared for all of this, we will be home by Christmas. Positive thoughts!!
He's a fighter already (believe me, my kidneys can't take much more). We are going up to Omaha Friday (12/10/10) morning to be induced. Just for logistical reasons. You know...live in Lincoln, need to deliver in Omaha...and oh yeah it's December in Nebraska. Who knows what the weather is going to do. As of right now the forecast is just cold. Hoping that it will stay that way.
Jaxon and Lea are doing great. Trying to get them ready for all of this has been a challenge. Jaxon seems to get it a little, but Lea obviously doesn't. Jaxon has been acting out a little about all of this. He's fighting for attention anyway he can. Lea, well, she thinks she's a diva and everything has to go her way. So, I'm glad this is another boy.
I'm hoping this will be easier to keep everyone who wants to know up to date. Remember, please send your prayers and POSITIVE thoughts this way and he will be fine and we will be having Christmas at home with all of our children.
Sonya
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