It's been several days since I have updated everyone on Cooper.
He has been home now for five days now and is doing well. We went in for our first of many checkups on Tuesday. We met with our pediatrician and he was able to ease some of our fears now that we are on our own taking care of Cooper. This transition has been interesting to say the least.
We did find out that Cooper will eventually need to have physical therapy, occupational therapy, visits to a developmental specialist, along with our check ups with our pediatrician. He may not need all of these for long periods of time, but because of his being on ecmo and all of the narcotics he was on, they do not know how his development will be.
For now, we will have weekly weight checks with the doctor, along with our regular check-ups. So, far, his weight has been averaging about 10 pounds 15 ounces. We have to make sure that he is eating well, so we are also keeping track of every ml that he is taking. Cooper likes to eat just enough that the doctors won't be putting him back in the hospital with the feeding tube in again. Some days I really have to make sure that I harass him enough to get every ml in him that I can.
Jaxon and Lea enjoy having their brother home. Lea tries to be such a big helper, but gets upset when she is unable to do certain things like feeding Cooper. It has been interesting, but wonderful.
Right now I am enjoying watching Cooper giggle in his sleep. I truly feel blessed.
Thursday, January 27, 2011
Sunday, January 23, 2011
01-23-11
Cooper is HOME!!!!
We got the good news this morning and we were able to bring him home at about 1pm today. It was such a great day!!
Jaxon and Lea were both so excited to get him home. Or in Lea's words, "I so sited! I so sited!". Even our dog Gizmo seemed excited to see what this new thing making noise in our house was. He has been eating well, but not sleeping well. Probably because of everything new he has to check out.
He is sleeping now...in his swing. We're realizing that Cooper is too big for even his cradle. Never would fit in the bassinet. We may have to quickly figure out where we can set up his crib and get Lea into a regular bed since her bed uses the crib mattress.
I just keep looking at him and it is just surreal to actually have him home. Something as little as going into the other room to get his bottle, instead of having to drive to the hospital to give him a bottle, is such a wonderful feeling.
I want to thank you all for your prayers. It has been a long journey to get to where we are today. I know that we would not have made it through all of this if it wasn't for all of our family and friends supporting us and taking care of us and our kids. And of course everyone that has said prayers for Cooper and our family, another big thanks.
We got the good news this morning and we were able to bring him home at about 1pm today. It was such a great day!!
Jaxon and Lea were both so excited to get him home. Or in Lea's words, "I so sited! I so sited!". Even our dog Gizmo seemed excited to see what this new thing making noise in our house was. He has been eating well, but not sleeping well. Probably because of everything new he has to check out.
He is sleeping now...in his swing. We're realizing that Cooper is too big for even his cradle. Never would fit in the bassinet. We may have to quickly figure out where we can set up his crib and get Lea into a regular bed since her bed uses the crib mattress.
I just keep looking at him and it is just surreal to actually have him home. Something as little as going into the other room to get his bottle, instead of having to drive to the hospital to give him a bottle, is such a wonderful feeling.
I want to thank you all for your prayers. It has been a long journey to get to where we are today. I know that we would not have made it through all of this if it wasn't for all of our family and friends supporting us and taking care of us and our kids. And of course everyone that has said prayers for Cooper and our family, another big thanks.
Saturday, January 22, 2011
01-22-11
Another Saturday. Except this may be the last Saturday that Cooper spends in the hospital.
The doctor is cautiously optimistic that Cooper will be released from the hospital TOMORROW! She says that he looks good, but she needs to check his numbers from today and tomorrow to make sure that he is still doing well.
We took today to get ready for Cooper's homecoming. Aunt Verleen helped us out yet again, and fed him last night and today. She was able to get a really cute picture of Cooper smiling last night. I think that helped win her over even more. While she was helping with Cooper, Rowney came over and helped Randy build the platform for our new bed. I think the two 6'4" guys forgot that I'm a foot shorter than them. It's a little high, but still looks good.
I have cleaned so many things around the house hoping to get rid of as many germs as possible, but it seems like there is always something else around the next corner to clean. I guess he will have to be exposed sometime, but for now I think I will keep him confined to certain areas until I can get everything cleaned really well at least once.
We ran into a little snafu yesterday with the car seat. The one we had was too old. Thankfully, one of Randy's co-workers had one that wasn't and we could borrow. Needless to say, he didn't get his test yesterday. Hoping that they will get that done today.
I'm anxious to go in tomorrow and see what the doctor says. Cooper had lost some of that weight, so as long as he doesn't put on a large amount again tonight, we should be ok. I guess we will just have to see what tomorrow brings.
If you happen to be in the Lincoln area tomorrow and hear a very loud scream for joy, it's just me and we are bringing Cooper home.
The doctor is cautiously optimistic that Cooper will be released from the hospital TOMORROW! She says that he looks good, but she needs to check his numbers from today and tomorrow to make sure that he is still doing well.
We took today to get ready for Cooper's homecoming. Aunt Verleen helped us out yet again, and fed him last night and today. She was able to get a really cute picture of Cooper smiling last night. I think that helped win her over even more. While she was helping with Cooper, Rowney came over and helped Randy build the platform for our new bed. I think the two 6'4" guys forgot that I'm a foot shorter than them. It's a little high, but still looks good.
I have cleaned so many things around the house hoping to get rid of as many germs as possible, but it seems like there is always something else around the next corner to clean. I guess he will have to be exposed sometime, but for now I think I will keep him confined to certain areas until I can get everything cleaned really well at least once.
We ran into a little snafu yesterday with the car seat. The one we had was too old. Thankfully, one of Randy's co-workers had one that wasn't and we could borrow. Needless to say, he didn't get his test yesterday. Hoping that they will get that done today.
I'm anxious to go in tomorrow and see what the doctor says. Cooper had lost some of that weight, so as long as he doesn't put on a large amount again tonight, we should be ok. I guess we will just have to see what tomorrow brings.
If you happen to be in the Lincoln area tomorrow and hear a very loud scream for joy, it's just me and we are bringing Cooper home.
Thursday, January 20, 2011
01-20-11
Happy Thursday.
I missed yesterday, but the only thing that really changed yesterday was that Cooper didn't get his circumcision. That happened today. It was not very pretty. I shouldn't have watched. But it's done now and that is one more thing off his list of to dos before he can go home.
Tomorrow afternoon they are going to do the car seat test. He has to sit in his car seat for two hours with the oximeter on to make sure that he doesn't desat during that time.
He has been on demand now for two days and seems to be doing ok with it. He is also on soy formula and hasn't really shown any difference since changing formulas. Hopefully he keeps going this way for the next few days.
He has gained weight a little too fast. The doctors want to watch him for the next two days to see if he can self regulate this issue. It is a sign that he is retaining fluid again and they are concerned about pulmonary edema, but his oxygen saturations have been great. They will not do a chest x-ray unless he doesn't lose some weight again. He has been going back and forth the last couple of days with his weight. As of last night he was back to 10 lbs 10.5oz. The nurse has not weighed him yet tonight.
If he can self regulate and shows "good" weight gain, the doctors are now saying they would like to see Cooper go home Sunday. I have been praying since they told me this.
It is almost surreal that he could be coming home in a couple of days. He is six weeks old tomorrow. The thought of him actually being at home soon just hasn't set in yet. We don't even have his bassinet set up yet. I think we both have been a little afraid. Just don't want to jinx it. The last six weeks have felt like a lifetime already. Can't wait to have Cooper at home to really start our lives together.
Asking everyone to say just one more big prayer that Cooper will be able to come home Sunday. That would be a great start to the next week and next chapter in our lives with Cooper.
I missed yesterday, but the only thing that really changed yesterday was that Cooper didn't get his circumcision. That happened today. It was not very pretty. I shouldn't have watched. But it's done now and that is one more thing off his list of to dos before he can go home.
Tomorrow afternoon they are going to do the car seat test. He has to sit in his car seat for two hours with the oximeter on to make sure that he doesn't desat during that time.
He has been on demand now for two days and seems to be doing ok with it. He is also on soy formula and hasn't really shown any difference since changing formulas. Hopefully he keeps going this way for the next few days.
He has gained weight a little too fast. The doctors want to watch him for the next two days to see if he can self regulate this issue. It is a sign that he is retaining fluid again and they are concerned about pulmonary edema, but his oxygen saturations have been great. They will not do a chest x-ray unless he doesn't lose some weight again. He has been going back and forth the last couple of days with his weight. As of last night he was back to 10 lbs 10.5oz. The nurse has not weighed him yet tonight.
If he can self regulate and shows "good" weight gain, the doctors are now saying they would like to see Cooper go home Sunday. I have been praying since they told me this.
It is almost surreal that he could be coming home in a couple of days. He is six weeks old tomorrow. The thought of him actually being at home soon just hasn't set in yet. We don't even have his bassinet set up yet. I think we both have been a little afraid. Just don't want to jinx it. The last six weeks have felt like a lifetime already. Can't wait to have Cooper at home to really start our lives together.
Asking everyone to say just one more big prayer that Cooper will be able to come home Sunday. That would be a great start to the next week and next chapter in our lives with Cooper.
Tuesday, January 18, 2011
01-18-11
Crazy day today.
Cooper did take another full bottle through the night. Surprised me. Then the doctor came in and changed the rules on us. In a good way.
Dr Tan said that we are changing him to soy formula starting tomorrow. We are thrilled for several reasons. The main reason is the cost. Alimentum is expensive and soy is just a little more than regular formula.
She also said that instead of 110 mls every four hours she is letting him take up to 110 mls. He needs to take at least 90 mls, and if he doesn't, then they will gavage the rest. The doctor said she will consider him on demand for his feedings. They will not let him go more than 4 hours without eating, but she is going to change him from 110 mls every four hours to a set amount over 24 hours. He hadn't hit this magic number of 90% yet, but this doctor is more about Cooper and not the numbers. She is confident that he has it in him to eat what he needs when he needs it. I guess we will see because he pulled out his feeding tube tonight. We are hoping that they will not need to put it back in. He looks so good without it.
He gets his circumcision tomorrow morning. Hopefully this won't set him back like they say it possibly could. Another thing we will have to just see about.
Aunt Verleen helped us out and took the 4pm feeding today. Apparently the nurse we had told that she would be there to feed him, didn't pass on that message. Several people came in to find out who she was. She is such a big help to us that I just feel bad that the communication by the staff wasn't there.
Here's to hoping that Cooper continues to do well and will be home by the end of the week. I am taking my book with me, just in case I need to be there all day for his feedings.
Cooper did take another full bottle through the night. Surprised me. Then the doctor came in and changed the rules on us. In a good way.
Dr Tan said that we are changing him to soy formula starting tomorrow. We are thrilled for several reasons. The main reason is the cost. Alimentum is expensive and soy is just a little more than regular formula.
She also said that instead of 110 mls every four hours she is letting him take up to 110 mls. He needs to take at least 90 mls, and if he doesn't, then they will gavage the rest. The doctor said she will consider him on demand for his feedings. They will not let him go more than 4 hours without eating, but she is going to change him from 110 mls every four hours to a set amount over 24 hours. He hadn't hit this magic number of 90% yet, but this doctor is more about Cooper and not the numbers. She is confident that he has it in him to eat what he needs when he needs it. I guess we will see because he pulled out his feeding tube tonight. We are hoping that they will not need to put it back in. He looks so good without it.
He gets his circumcision tomorrow morning. Hopefully this won't set him back like they say it possibly could. Another thing we will have to just see about.
Aunt Verleen helped us out and took the 4pm feeding today. Apparently the nurse we had told that she would be there to feed him, didn't pass on that message. Several people came in to find out who she was. She is such a big help to us that I just feel bad that the communication by the staff wasn't there.
Here's to hoping that Cooper continues to do well and will be home by the end of the week. I am taking my book with me, just in case I need to be there all day for his feedings.
Monday, January 17, 2011
01-17-11
Today was a great day!!!
Cooper was faking us out and ate 70 mls at the morning feeding. All the other mornings he was just messing with us. He could do it all along.
Then the nurses suggested that we bring in bottles for him to get used to them and see if they would work better. Since we didn't have any bottles, I asked if there was one they would suggest that might help him out with his reflux. They suggested Dr Brown's. So, I went and got one to try with him. He didn't skip a beat and took 75 mls at the noon feeding. This was turning out to be a good day.
Then the 4 pm feeding came and he surprised everyone. Especially me. He took 90 mls in 25 minutes. Then with a little more prodding I was finally able to get him to finish the entire bottle in under 45 minutes. YES HE TOOK THE ENTIRE BOTTLE! His first one ever. This was a great day! Even the doctor was impressed.
So, going in for his 8 pm feeding, I really wasn't expecting him to take more than 70, but was hoping. It's not usual for babies to take 2 full bottles in a day, the first day they take a full bottle. But with a lot of prodding (and I do mean a lot) by me, I got him to finish another bottle. Well, close anyway. There were 3 mls left in the bottle, but the nurse called it good.
I do not expect them to get him to take full bottles though the night. Only a parent could bug him that much to get him to eat.
The other changes made today were that they are no longer adding calories to his formula. He is gaining well, almost too well. He is up to 10lbs 10.2 oz. He's up 3 ounces in the last 24 hours. They have put him on a multivitamin with iron. He is still a little anemic, so they think that about of month of this and his formula should get him back to a normal level.
The doctor also gave him a shot for RSV. It is called Synagis. It is a passive vaccine and will help him against RSV. He will need to get doses of this every 30 days or so until RSV season is over. This is a very expensive drug and because of his CDH qualifies to receive it. The doctor said it's about $1000 per vial and because of his size he would need to get about a vial every dose. Thank goodness he qualifies to have insurance cover this.
This doctor does not like Alimentum, so either tomorrow or Wednesday she is going to change his formula. She isn't sure what yet, but probably a soy formula. We are happy because even soy is cheaper than Alimentum.
It was a big day for the Jensen's. We are so happy that Cooper is just that much closer to coming home. Both Jaxon and Lea asked if Cooper would come home tonight because he ate his first bottle. Let them know that he has to do this more often before he could come home. They were still excited that he is starting to eat. We might be getting Cooper home very soon. We just keep praying that it will be any day now.
Cooper was faking us out and ate 70 mls at the morning feeding. All the other mornings he was just messing with us. He could do it all along.
Then the nurses suggested that we bring in bottles for him to get used to them and see if they would work better. Since we didn't have any bottles, I asked if there was one they would suggest that might help him out with his reflux. They suggested Dr Brown's. So, I went and got one to try with him. He didn't skip a beat and took 75 mls at the noon feeding. This was turning out to be a good day.
Then the 4 pm feeding came and he surprised everyone. Especially me. He took 90 mls in 25 minutes. Then with a little more prodding I was finally able to get him to finish the entire bottle in under 45 minutes. YES HE TOOK THE ENTIRE BOTTLE! His first one ever. This was a great day! Even the doctor was impressed.
So, going in for his 8 pm feeding, I really wasn't expecting him to take more than 70, but was hoping. It's not usual for babies to take 2 full bottles in a day, the first day they take a full bottle. But with a lot of prodding (and I do mean a lot) by me, I got him to finish another bottle. Well, close anyway. There were 3 mls left in the bottle, but the nurse called it good.
I do not expect them to get him to take full bottles though the night. Only a parent could bug him that much to get him to eat.
The other changes made today were that they are no longer adding calories to his formula. He is gaining well, almost too well. He is up to 10lbs 10.2 oz. He's up 3 ounces in the last 24 hours. They have put him on a multivitamin with iron. He is still a little anemic, so they think that about of month of this and his formula should get him back to a normal level.
The doctor also gave him a shot for RSV. It is called Synagis. It is a passive vaccine and will help him against RSV. He will need to get doses of this every 30 days or so until RSV season is over. This is a very expensive drug and because of his CDH qualifies to receive it. The doctor said it's about $1000 per vial and because of his size he would need to get about a vial every dose. Thank goodness he qualifies to have insurance cover this.
This doctor does not like Alimentum, so either tomorrow or Wednesday she is going to change his formula. She isn't sure what yet, but probably a soy formula. We are happy because even soy is cheaper than Alimentum.
It was a big day for the Jensen's. We are so happy that Cooper is just that much closer to coming home. Both Jaxon and Lea asked if Cooper would come home tonight because he ate his first bottle. Let them know that he has to do this more often before he could come home. They were still excited that he is starting to eat. We might be getting Cooper home very soon. We just keep praying that it will be any day now.
Sunday, January 16, 2011
01-16-11
We are trying to find out if Cooper just isn't a morning person, or he is just plain stubborn. He hasn't taken as much the last two mornings as he does the rest of his feedings. He still is doing very well, just not as well first thing in the morning. In the last 24 hours he has taken more than 60 mls 5 of the 6 feedings. And 3 of those were at least 70 mls. He is really doing very well.
I was able to give him a bath today and in the sunlight, his hair almost looks reddish. It will be interesting to see what his hair color turns out to be in a few months when his hair starts to come in fully.
Randy went up to Omaha today and "checked us out" of the Ronald McDonald House for the last time. He also took a little thank you over to the NICU at UNMC. We are grateful to all of them for all they did for Cooper.
We are hoping that Cooper will continue to keep moving in this direction and be able to come home soon.
I was able to give him a bath today and in the sunlight, his hair almost looks reddish. It will be interesting to see what his hair color turns out to be in a few months when his hair starts to come in fully.
Randy went up to Omaha today and "checked us out" of the Ronald McDonald House for the last time. He also took a little thank you over to the NICU at UNMC. We are grateful to all of them for all they did for Cooper.
We are hoping that Cooper will continue to keep moving in this direction and be able to come home soon.
Saturday, January 15, 2011
01-15-11
It's great to be in Lincoln! Don't think I can say that enough.
Cooper is doing well and teaching his new nurses how things are going to be. His nurse today learned early that when he wants to eat, he wants to eat. And if you wait too long, he will use all his energy showing you how ticked off he is that you haven't fed him yet. Needless to say, he is a little off his schedule now because he is wanting to eat a little sooner than every four hours. He wants to eat about every 3 to 3 1/2 hours. He is still taking the same amount just over a little less time. Hopefully, this means he is really starting to figure this eating thing out.
He is still at over 50% by bottle and he has not spit up yet since being in Lincoln. We are hoping that he is over that phase, but he is still on the prevacid to help with this, just in case.
Aunt Verleen was there today at 3:30 to feed Cooper, but he had decided that he was hungry before that. He was done eating by bottle by the time she got there. But she did get to change his dirty diaper. Actually, she ended up spending some quality time with him and was still there when I got there at 6:40. And again Cooper was a little off schedule and was eating when I got there. So Aunt Verleen did get to feed him after all.
Then the gang came by. Teresa, Tina and Heather came by to meet Cooper for the first time. He tried his darndest to flirt with them and win them over. Don't think he had to work to hard at this. It was a really great night for me. I was very happy to share him with the girls.
An old friend I haven't talked to in over 11 years (except on facebook) works in the post-partum unit and stopped in to say hi. It was nice to see Wendy after all this time.
Getting Cooper moved to Lincoln has just been a major blessing to us in so many ways.
Cooper is doing well and teaching his new nurses how things are going to be. His nurse today learned early that when he wants to eat, he wants to eat. And if you wait too long, he will use all his energy showing you how ticked off he is that you haven't fed him yet. Needless to say, he is a little off his schedule now because he is wanting to eat a little sooner than every four hours. He wants to eat about every 3 to 3 1/2 hours. He is still taking the same amount just over a little less time. Hopefully, this means he is really starting to figure this eating thing out.
He is still at over 50% by bottle and he has not spit up yet since being in Lincoln. We are hoping that he is over that phase, but he is still on the prevacid to help with this, just in case.
Aunt Verleen was there today at 3:30 to feed Cooper, but he had decided that he was hungry before that. He was done eating by bottle by the time she got there. But she did get to change his dirty diaper. Actually, she ended up spending some quality time with him and was still there when I got there at 6:40. And again Cooper was a little off schedule and was eating when I got there. So Aunt Verleen did get to feed him after all.
Then the gang came by. Teresa, Tina and Heather came by to meet Cooper for the first time. He tried his darndest to flirt with them and win them over. Don't think he had to work to hard at this. It was a really great night for me. I was very happy to share him with the girls.
An old friend I haven't talked to in over 11 years (except on facebook) works in the post-partum unit and stopped in to say hi. It was nice to see Wendy after all this time.
Getting Cooper moved to Lincoln has just been a major blessing to us in so many ways.
Friday, January 14, 2011
01-14-11
So Cooper has been in Lincoln for about 36 hours now and it really agrees with him. In the last 36 hours he has taken just over 50% by bottle every feeding. AND he has not spit up/thrown up yet since being here.
He seems to be a bit happier as well. Couldn't be that mom and dad are happier and less stressed, could it?
We had more visitors tonight. Great Aunt Marilyn came by and kept Cooper and I company while he ate. Then Grandma and Grandpa Baumert came down and joined us. We had a nice visit with all of them.
Grandma and Grandpa came back to the house so they could spoil, I mean spend time with Jaxon and Lea. The kids enjoyed them coming by. Lea and Grandma played her "fishy" game and Jaxon and Grandpa played with one of his new race tracks. They had fun and it was nice to see them again.
Tonight, Aunt Verleen met Randy at the hospital to "learn" how to feed Cooper. I told her that she doesn't need and excuse to visit Cooper. But she is feeding him tomorrow at 4 for us so we can go to Jaxon's first basketball game. I'm guessing she just wanted some reassurance that she could do this. I have no doubt that she can.
This was a good day!
He seems to be a bit happier as well. Couldn't be that mom and dad are happier and less stressed, could it?
We had more visitors tonight. Great Aunt Marilyn came by and kept Cooper and I company while he ate. Then Grandma and Grandpa Baumert came down and joined us. We had a nice visit with all of them.
Grandma and Grandpa came back to the house so they could spoil, I mean spend time with Jaxon and Lea. The kids enjoyed them coming by. Lea and Grandma played her "fishy" game and Jaxon and Grandpa played with one of his new race tracks. They had fun and it was nice to see them again.
Tonight, Aunt Verleen met Randy at the hospital to "learn" how to feed Cooper. I told her that she doesn't need and excuse to visit Cooper. But she is feeding him tomorrow at 4 for us so we can go to Jaxon's first basketball game. I'm guessing she just wanted some reassurance that she could do this. I have no doubt that she can.
This was a good day!
Thursday, January 13, 2011
01-13-11
Cooper made it to Lincoln!!!
He arrived at St E's about 10:15ish. We got there about 10:30 and he was in his new room and getting weighed and settled in. It was great to make the quick drive to see him.
So, he left UNMC about 9:10 with just a little food in his tummy. Only about 20 mls. They didn't want him to go on a full tummy, just in case he were to get sick in the ambulance. The isolet they use for transport is small. Really small. Cooper had no problems with the ride down to Lincoln. He slept most of the way. He only gave them heck the last 15 minutes or so. Needless to say, he was hungry. After they did all of their necessary checks, they finally talked to us about the fact that they didn't have his formula in powder form, so they couldn't add the extra calories like at UNMC. They actually had to send someone out to get some formula so they could. In the mean time, we gave him the regular Alimentum. And he did great.
We think being in Lincoln, with a less stressed mommy and daddy, really agrees with him. He took 45 mls at that first feeding here. Then at the 4 o'clock feeding, he took 70 mls for me. Finally at the 8 o'clock feeding, he took another 55 mls for Randy. In those 3 feedings he is already up to 50% by bottle. And he didn't spit up at all. Let's hope he keeps going in this direction. This is a great day.
He has already had visitors today. Aunt Verleen and Uncle Rowney were there tonight to help welcome him to Lincoln and to learn how this feeding thing is done. They will be our back up when we can't make it there ourselves for some reason. Like on Saturday afternoon when we have to go to Jaxon's first basketball game. It is really a great feeling and weight off our shoulders to be here and have all the support close by.
I know that I am looking forward to spending time at home and with our friends. I'm sure that Randy feels the same way.
I can't say it enough. It's a great day.
He arrived at St E's about 10:15ish. We got there about 10:30 and he was in his new room and getting weighed and settled in. It was great to make the quick drive to see him.
So, he left UNMC about 9:10 with just a little food in his tummy. Only about 20 mls. They didn't want him to go on a full tummy, just in case he were to get sick in the ambulance. The isolet they use for transport is small. Really small. Cooper had no problems with the ride down to Lincoln. He slept most of the way. He only gave them heck the last 15 minutes or so. Needless to say, he was hungry. After they did all of their necessary checks, they finally talked to us about the fact that they didn't have his formula in powder form, so they couldn't add the extra calories like at UNMC. They actually had to send someone out to get some formula so they could. In the mean time, we gave him the regular Alimentum. And he did great.
We think being in Lincoln, with a less stressed mommy and daddy, really agrees with him. He took 45 mls at that first feeding here. Then at the 4 o'clock feeding, he took 70 mls for me. Finally at the 8 o'clock feeding, he took another 55 mls for Randy. In those 3 feedings he is already up to 50% by bottle. And he didn't spit up at all. Let's hope he keeps going in this direction. This is a great day.
He has already had visitors today. Aunt Verleen and Uncle Rowney were there tonight to help welcome him to Lincoln and to learn how this feeding thing is done. They will be our back up when we can't make it there ourselves for some reason. Like on Saturday afternoon when we have to go to Jaxon's first basketball game. It is really a great feeling and weight off our shoulders to be here and have all the support close by.
I know that I am looking forward to spending time at home and with our friends. I'm sure that Randy feels the same way.
I can't say it enough. It's a great day.
Wednesday, January 12, 2011
01-12-10
YYYYYYYYYYYYEEEEEEEEEEEEEEEEESSSSSSSSSSSSSSSSS!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!
Tomorrow morning Cooper will be transferred to St. Elizabeth's hospital. This is the next best thing to him coming home.
He had a great night last night, then I think mom's stress about today got to him and he didn't eat very well for me. So, we know he has it in him to eat, and hopefully now that he will be closer to home, he will be able to eat better all the time.
We were able to get the green light on the transfer about noon today, but knew that we would have to pay for the transport to Lincoln. At first, we were having to come up with the cost of UNMC's transport service. Which was about $4500. This was a big stress on us, but then wonderful Denise from UNMC, along with a little help from Dr Anderson and a few other calls from other birdies, St E's waived their nursing and supply fees to transport him to St E's. This was a $3000 savings to us.
So, tomorrow morning (Thursday) the St E's team will leave there about 7:30 to head to Omaha to get Cooper and bring him back to Lincoln. He should be at St. E's by about 10:00. We are very happy. It will be nice to drive down the road, instead of driving to Omaha to see Cooper.
It was nice to come home, but didn't expect to have to take 2 hours to get the kids to bed. Apparently me be gone for the last 5 days means I have to read nearly every book to Lea and Jaxon. Glad we will be able to get back to our routine.
Just want to put out there that the power of prayer is mighty and we are grateful to everyone out there for the prayers. I really believe that Cooper has done so well and he is able to be transferred to St E's because of all the prayers.
Tomorrow morning Cooper will be transferred to St. Elizabeth's hospital. This is the next best thing to him coming home.
He had a great night last night, then I think mom's stress about today got to him and he didn't eat very well for me. So, we know he has it in him to eat, and hopefully now that he will be closer to home, he will be able to eat better all the time.
We were able to get the green light on the transfer about noon today, but knew that we would have to pay for the transport to Lincoln. At first, we were having to come up with the cost of UNMC's transport service. Which was about $4500. This was a big stress on us, but then wonderful Denise from UNMC, along with a little help from Dr Anderson and a few other calls from other birdies, St E's waived their nursing and supply fees to transport him to St E's. This was a $3000 savings to us.
So, tomorrow morning (Thursday) the St E's team will leave there about 7:30 to head to Omaha to get Cooper and bring him back to Lincoln. He should be at St. E's by about 10:00. We are very happy. It will be nice to drive down the road, instead of driving to Omaha to see Cooper.
It was nice to come home, but didn't expect to have to take 2 hours to get the kids to bed. Apparently me be gone for the last 5 days means I have to read nearly every book to Lea and Jaxon. Glad we will be able to get back to our routine.
Just want to put out there that the power of prayer is mighty and we are grateful to everyone out there for the prayers. I really believe that Cooper has done so well and he is able to be transferred to St E's because of all the prayers.
Tuesday, January 11, 2011
01-11-11
Cooper had a better day today.
For the last 12 hours he has been taking nearly 40% of his feedings by bottle. This is great considering when I talked to the doctor at 9 this morning, he had only been taking 30% by bottle. Hopefully he will continue this through the night.
He still is throwing up a bit, but not every feeding. And he has gained weight the last two days, so the doctor is not too worried.
I have worked with insurance companies for many years trying to get claims paid or services covered for patients. Now it's my turn to sit back and wait to see if the hospital can get either the transport to St E's or the hospital stay once he's there, covered. Hopefully both, but we will take the hospital stay. I didn't know that the insurance company may say that it's cheaper to stay in Omaha, so they wouldn't pay for the hospital stay even if we paid for the transport to Lincoln. But, I have faith that the people here at UNMC know what they are doing and what needs to be said or done to get this paid. Now it's just waiting to see if the insurance company has a human being on this case or a robot that has been put there to protect the bottom line.
If the insurance won't pay, and we have to stay in Omaha, I only hope that Cooper finds a new gear and gets this eating thing down a little faster. Can't stand staying up here anymore. Very grateful to have a place to stay and the facility is nice, but some of the other people staying here are just so incredibly rude. The couple in the next room have been fighting the last couple of nights as late as midnight.
Then of course there is the entire missing my other kids. It would be so nice to have everyone together. I guess we only have another day until we find out. Saying extra prayers.
For the last 12 hours he has been taking nearly 40% of his feedings by bottle. This is great considering when I talked to the doctor at 9 this morning, he had only been taking 30% by bottle. Hopefully he will continue this through the night.
He still is throwing up a bit, but not every feeding. And he has gained weight the last two days, so the doctor is not too worried.
I have worked with insurance companies for many years trying to get claims paid or services covered for patients. Now it's my turn to sit back and wait to see if the hospital can get either the transport to St E's or the hospital stay once he's there, covered. Hopefully both, but we will take the hospital stay. I didn't know that the insurance company may say that it's cheaper to stay in Omaha, so they wouldn't pay for the hospital stay even if we paid for the transport to Lincoln. But, I have faith that the people here at UNMC know what they are doing and what needs to be said or done to get this paid. Now it's just waiting to see if the insurance company has a human being on this case or a robot that has been put there to protect the bottom line.
If the insurance won't pay, and we have to stay in Omaha, I only hope that Cooper finds a new gear and gets this eating thing down a little faster. Can't stand staying up here anymore. Very grateful to have a place to stay and the facility is nice, but some of the other people staying here are just so incredibly rude. The couple in the next room have been fighting the last couple of nights as late as midnight.
Then of course there is the entire missing my other kids. It would be so nice to have everyone together. I guess we only have another day until we find out. Saying extra prayers.
Monday, January 10, 2011
01-10-11
Cooper is one month old today.
This lovely weather made it interesting to get over to the hospital today. I called the shuttle so I didn't have to drive in this snow. Never been so nervous to ride in a van for 6 blocks. Lots of cars stuck and sliding everywhere.
When I did make it there, it was another day in the struggle to get Cooper to eat. He still is taking only an ounce every feeding by bottle. I did talk to the doctor about this, and she reassured me that this is normal and that he is still ahead of the curve. She said that on average it takes 4 to 6 weeks after the hernia repair for babies to learn how to eat. We are just over 2 weeks in, so we have possibly 2 to 4 weeks more. However, there have been cases where it takes 3 to 4 months. Hoping that it's only 2 to 4 weeks more.
He only gained 3 ounces over the last week, so they have added calories to his formula to help. They want him to gain an ounce every day. Regular formula is 20 calories per ounce. They have added 2 calories per ounce. Yeah, I know, doesn't sound like a lot. He is going from taking 480 calories a day to 528. They hope this will help him get the calories he is burning from working so hard to eat. If not, they will increase it to 5 calories/ounce.
The only big news from the day would be that I did talk to Dr Anderson about transferring Cooper to St Elizabeth's. She did give the green light, but we have to wait to see if insurance will cover any of the transport costs. Unlikely, but we can hope. If not, we are still going to pursue this option. It would be so much easier for Jaxon and Lea if we were in town. They could see their brother more and we could have dinner together every night. Also, we would be able to sleep in our own bed every night. Here's to hoping that we will be able to get him to Lincoln if not home soon.
This lovely weather made it interesting to get over to the hospital today. I called the shuttle so I didn't have to drive in this snow. Never been so nervous to ride in a van for 6 blocks. Lots of cars stuck and sliding everywhere.
When I did make it there, it was another day in the struggle to get Cooper to eat. He still is taking only an ounce every feeding by bottle. I did talk to the doctor about this, and she reassured me that this is normal and that he is still ahead of the curve. She said that on average it takes 4 to 6 weeks after the hernia repair for babies to learn how to eat. We are just over 2 weeks in, so we have possibly 2 to 4 weeks more. However, there have been cases where it takes 3 to 4 months. Hoping that it's only 2 to 4 weeks more.
He only gained 3 ounces over the last week, so they have added calories to his formula to help. They want him to gain an ounce every day. Regular formula is 20 calories per ounce. They have added 2 calories per ounce. Yeah, I know, doesn't sound like a lot. He is going from taking 480 calories a day to 528. They hope this will help him get the calories he is burning from working so hard to eat. If not, they will increase it to 5 calories/ounce.
The only big news from the day would be that I did talk to Dr Anderson about transferring Cooper to St Elizabeth's. She did give the green light, but we have to wait to see if insurance will cover any of the transport costs. Unlikely, but we can hope. If not, we are still going to pursue this option. It would be so much easier for Jaxon and Lea if we were in town. They could see their brother more and we could have dinner together every night. Also, we would be able to sleep in our own bed every night. Here's to hoping that we will be able to get him to Lincoln if not home soon.
Saturday, January 8, 2011
01-08-11
Cooper is doing great. Another boring day in the NICU for us.
The only change they really made was that they changed his feedings from every three hours to every four. Of course this means he has to drink more every feeding. Instead of 80 mls every 3 hours, it's now 110 mls every 4 hours. Of course they didn't change the rate, so he is still having to take all 110 in 60 minutes. This is one way to stretch his stomach out.
He is back to below 50% of his feedings by bottle. It would be kind of nice if he had the same nurse more than once. Now with the new CDH baby in the NICU, all the good nurses have been put on that case and we get all of these other nurses that have never seen Cooper before and half of them did not even know that he's had surgery. We have to tell them about him because they are not necessarily reading the chart. Randy has spoken with the charge nurse about this and hopefully things will get better, however we had another new nurse today.
We really have no idea anymore when the end to this hospital stay might be. Right now hopeful would be within 2-3 weeks. He's not sick anymore, so no one is really worrying about him and they just keep telling us that it will take time. It would just be nice if he could come home before I have to go back to work. But now. . . we just don't know.
The only change they really made was that they changed his feedings from every three hours to every four. Of course this means he has to drink more every feeding. Instead of 80 mls every 3 hours, it's now 110 mls every 4 hours. Of course they didn't change the rate, so he is still having to take all 110 in 60 minutes. This is one way to stretch his stomach out.
He is back to below 50% of his feedings by bottle. It would be kind of nice if he had the same nurse more than once. Now with the new CDH baby in the NICU, all the good nurses have been put on that case and we get all of these other nurses that have never seen Cooper before and half of them did not even know that he's had surgery. We have to tell them about him because they are not necessarily reading the chart. Randy has spoken with the charge nurse about this and hopefully things will get better, however we had another new nurse today.
We really have no idea anymore when the end to this hospital stay might be. Right now hopeful would be within 2-3 weeks. He's not sick anymore, so no one is really worrying about him and they just keep telling us that it will take time. It would just be nice if he could come home before I have to go back to work. But now. . . we just don't know.
Friday, January 7, 2011
Wednesday, January 5, 2011
01-05-11
So, yesterday, Cooper was impressing everyone at morning rounds with the fact he was taking 37% of his feedings by bottle. Today it was up to 45%. (Keep in mind this is always the previous 24 hours.) For the 4 feedings I was there today, he was up to 50% by bottle. He is doing great!! Now it's Randy's turn tomorrow to see if he can beat mom and get him to take even more at each feeding.
He also was able to stay off the oxygen all night and today. He did need another dose of lasix today, as expected. And we will find out later if he was able to lose any weight today. He seemed to be doing a little better today with his breathing. Randy will find out tomorrow if he will need another dose to help him out even more.
So, tonight I am home with the rest of the family, and it is nice to come back to a little normalcy. Even though I'm not sure what normal is anymore.
It's like Randy and I have been taking Cooper 101 for the past 4 weeks and we are not quite sure when we will be able to graduate to Cooper 102 (Cooper at home). We are slowly learning all his little quirks and noises. Example: today after Cooper had eaten at the 11am feeding, he was laying in his bed not quite asleep. Then, he started making this little gurgling sound and I got up to check on him thinking he was going to throw up. Sure enough, as soon as I got up to the bed and grabbed a burp rag, he threw up. Fortunately but unfortunately I know what he sounds like when he is about to throw up.
The new CDH baby should be born tomorrow. I can't help but think what the parents are thinking right now. So many questions are running through my head for them. My heart goes out to them as this long process is just starting for them.
He also was able to stay off the oxygen all night and today. He did need another dose of lasix today, as expected. And we will find out later if he was able to lose any weight today. He seemed to be doing a little better today with his breathing. Randy will find out tomorrow if he will need another dose to help him out even more.
So, tonight I am home with the rest of the family, and it is nice to come back to a little normalcy. Even though I'm not sure what normal is anymore.
It's like Randy and I have been taking Cooper 101 for the past 4 weeks and we are not quite sure when we will be able to graduate to Cooper 102 (Cooper at home). We are slowly learning all his little quirks and noises. Example: today after Cooper had eaten at the 11am feeding, he was laying in his bed not quite asleep. Then, he started making this little gurgling sound and I got up to check on him thinking he was going to throw up. Sure enough, as soon as I got up to the bed and grabbed a burp rag, he threw up. Fortunately but unfortunately I know what he sounds like when he is about to throw up.
The new CDH baby should be born tomorrow. I can't help but think what the parents are thinking right now. So many questions are running through my head for them. My heart goes out to them as this long process is just starting for them.
Tuesday, January 4, 2011
01-04-11
Today was a yet another good day.
Cooper has decided he likes this bottle thing a little more. Starting with the 5 am feeding, and every feeding since, he has taken at least an ounce by bottle. His last two bottles he has taken 40 mls and 50 mls. Hopefully his breathing won't hold him back through the night. It would be great if he would just take 30 mls per feeding throughout the night.
Cooper remained off oxygen the entire day. However, by tonight he was having a hard time keeping his saturations above 95%. When we weighed him tonight, he was 9 pounds 12 ounces. Up 4 ounces. They only wanted/expected him to gain 1 to 2 ounces. I won't be surprised if he needs another dose of lasix tomorrow. It really seemed to help him yesterday and this morning. My untrained eyes could even see that his breathing was better controlled and not so fast after the last two doses of lasix. I will not be surprised if he is on oxygen by tomorrow morning.
Over all, he is still doing great.
On another note, I found out today that another CDH baby may be arriving soon in the NICU. We had heard that for some reason they seem to get CDH babies in threes. We were the first, and I had heard before that they were expecting the others in January and February. Well, the January baby is expected to be arriving soon. I hope that everything goes well for them. And hopefully we will be able to help them through some things as parents who have just gone through the same thing.
Good Night.
Cooper has decided he likes this bottle thing a little more. Starting with the 5 am feeding, and every feeding since, he has taken at least an ounce by bottle. His last two bottles he has taken 40 mls and 50 mls. Hopefully his breathing won't hold him back through the night. It would be great if he would just take 30 mls per feeding throughout the night.
Cooper remained off oxygen the entire day. However, by tonight he was having a hard time keeping his saturations above 95%. When we weighed him tonight, he was 9 pounds 12 ounces. Up 4 ounces. They only wanted/expected him to gain 1 to 2 ounces. I won't be surprised if he needs another dose of lasix tomorrow. It really seemed to help him yesterday and this morning. My untrained eyes could even see that his breathing was better controlled and not so fast after the last two doses of lasix. I will not be surprised if he is on oxygen by tomorrow morning.
Over all, he is still doing great.
On another note, I found out today that another CDH baby may be arriving soon in the NICU. We had heard that for some reason they seem to get CDH babies in threes. We were the first, and I had heard before that they were expecting the others in January and February. Well, the January baby is expected to be arriving soon. I hope that everything goes well for them. And hopefully we will be able to help them through some things as parents who have just gone through the same thing.
Good Night.
Monday, January 3, 2011
01-03-11
Yet another Monday in the books.
Cooper is still doing well. The boring days they talked about have officially started.
He had his PICC line removed yesterday and doesn't seem to miss it at all. They do still have him on prevacid. They are able to give this through his feeding tube so he doesn't have to taste it yet.
And the last two days they have been giving him lasix to help with the fluids he has been retaining. They think that this might help him and his breathing. The doctor thinks that a lot of his big weight gains could just be fluid, and judging by how much he has lost over the last two days, I would say they are right. On Saturday night he weighed in at 10 pounds 1 ounce. Tonight, he weighed 9 pounds 8 ounces. This was a big weight loss today and they were a little concerned, but think it was expected after the big weight gain at the end of last week. We will have to see if the doctor continues the lasix tomorrow.
Cooper is still struggling with the eating part. He has figured out how to eat from the bottle, but doesn't have the stamina to drink everything by bottle. Today he is still at 80 mls. He did take at least half 3 times today. Now to get him to take half at every feeding would be a great start.
Sonya
Cooper is still doing well. The boring days they talked about have officially started.
He had his PICC line removed yesterday and doesn't seem to miss it at all. They do still have him on prevacid. They are able to give this through his feeding tube so he doesn't have to taste it yet.
And the last two days they have been giving him lasix to help with the fluids he has been retaining. They think that this might help him and his breathing. The doctor thinks that a lot of his big weight gains could just be fluid, and judging by how much he has lost over the last two days, I would say they are right. On Saturday night he weighed in at 10 pounds 1 ounce. Tonight, he weighed 9 pounds 8 ounces. This was a big weight loss today and they were a little concerned, but think it was expected after the big weight gain at the end of last week. We will have to see if the doctor continues the lasix tomorrow.
Cooper is still struggling with the eating part. He has figured out how to eat from the bottle, but doesn't have the stamina to drink everything by bottle. Today he is still at 80 mls. He did take at least half 3 times today. Now to get him to take half at every feeding would be a great start.
Sonya
Sunday, January 2, 2011
Saturday, January 1, 2011
01-01-11
Happy 2011!
First day of the new year and we are starting on a positive note. Cooper is back on track.
Thanks to Grandma and Grandpa Baumert, both of us were able to make it up to Omaha today. Not that we didn't have lots of people offering to watch Jaxon and Lea, but Grandma and Grandpa were happy to spend some time with them, so it worked out for all us.
So, we made it up here for Cooper's 11 am feeding and found that he had been moved up to 80 mls every 3 hours. And he was able to take 35 mls by bottle. It does take quite a while for the rest to be fed to him by feeding tube, which tends to cause issues with his next feeding. He sleeps well after he eats and doesn't want to wake up for the next feeding. The 2 pm feeding he only took 10 mls by bottle and at 5 pm they just fed him by tube because he was sleeping and the surgeons only wanted him to feed by bottle 3 times per day because of his reflux. The nurses are going to check with them in the morning since they seem to have his reflux back under control. Cooper took 43 mls at the 8 pm feeding, which is fabulous. We are hoping that by morning we will be able to feed him more by bottle and get him back on track to getting out of here.
They will have him up to 90 mls, or 3 ounces, tomorrow and will be able to pull the picc line. NO MORE IV!! That will be great! Then we will only have the wires monitoring his vitals and his oxygen keeping him attached to anything. Nurses think that he might be able to come off the oxygen in a few days. Just need him to get his breathing under control and then his O2 saturations should remain stable. Just tends to breath too fast some of the time and then his sats drop, and the reason he needs O2.
We were told today that Cooper will have to have a MRI of the head. They said it is standard protocol with every baby that has been on ecmo. They want to make sure that they didn't miss any brain bleeds and check for any possible brain damage that could have possibly occurred while on ecmo and heparin. They are not worried, but need to follow protocol. Hoping that they are right and there is nothing to worry about.
We are hoping that we will soon have to bring Cooper's car seat up for them to check out. They need to check for recalls and they also place him in the car seat to make sure that he doesn't have issues while sitting in the car seat. They do this a couple of days before his is able to come home. That will be a good feeling to bring that up to the hospital. Can't wait.
First day of the new year and we are starting on a positive note. Cooper is back on track.
Thanks to Grandma and Grandpa Baumert, both of us were able to make it up to Omaha today. Not that we didn't have lots of people offering to watch Jaxon and Lea, but Grandma and Grandpa were happy to spend some time with them, so it worked out for all us.
So, we made it up here for Cooper's 11 am feeding and found that he had been moved up to 80 mls every 3 hours. And he was able to take 35 mls by bottle. It does take quite a while for the rest to be fed to him by feeding tube, which tends to cause issues with his next feeding. He sleeps well after he eats and doesn't want to wake up for the next feeding. The 2 pm feeding he only took 10 mls by bottle and at 5 pm they just fed him by tube because he was sleeping and the surgeons only wanted him to feed by bottle 3 times per day because of his reflux. The nurses are going to check with them in the morning since they seem to have his reflux back under control. Cooper took 43 mls at the 8 pm feeding, which is fabulous. We are hoping that by morning we will be able to feed him more by bottle and get him back on track to getting out of here.
They will have him up to 90 mls, or 3 ounces, tomorrow and will be able to pull the picc line. NO MORE IV!! That will be great! Then we will only have the wires monitoring his vitals and his oxygen keeping him attached to anything. Nurses think that he might be able to come off the oxygen in a few days. Just need him to get his breathing under control and then his O2 saturations should remain stable. Just tends to breath too fast some of the time and then his sats drop, and the reason he needs O2.
We were told today that Cooper will have to have a MRI of the head. They said it is standard protocol with every baby that has been on ecmo. They want to make sure that they didn't miss any brain bleeds and check for any possible brain damage that could have possibly occurred while on ecmo and heparin. They are not worried, but need to follow protocol. Hoping that they are right and there is nothing to worry about.
We are hoping that we will soon have to bring Cooper's car seat up for them to check out. They need to check for recalls and they also place him in the car seat to make sure that he doesn't have issues while sitting in the car seat. They do this a couple of days before his is able to come home. That will be a good feeling to bring that up to the hospital. Can't wait.
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