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.
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