Monday, February 21, 2011
A fund raiser has been started to assist us with Cooper's bills and to help us start a charity, Cooper's DHreams. Any amount will be greatly appriciated. Anyone that donates $20 or more will be put into a drawing to receive a new Panasonic Toughbook W8 lap top computer. Please spread the word. With your assistance we can help other CDH families.
Thursday, February 10, 2011
02-10-11
I know, it's been quite some time since I have updated everyone on how Cooper is doing. He's doing great.
A few bumps in the road so far, but all is good.
We met with one of the surgeons on Tuesday for Cooper's post-op visit. He checked him out and said that he looks great. Of course we have to be vigilant of his respiratory issues. Any change in his breathing, and we need to make sure he gets checked out right away. He was more worried about the hernia recurring and causing breathing problems. He doesn't think it will happen, just that it could. He actually told us that we could just treat him like any other kid. Which was great to hear.
Two days after he came home from the hospital, we went and saw the pediatrician. At that time, Cooper was starting to get a bad case of baby acne. The doctor said that he would outgrow it. This was the worst case of baby acne I had ever seen. Turns out it isn't acne.
First the Dr Davis thought he just had a milk and soy protein intolerance. Cooper didn't have any other signs or symptoms other than the rash. So, Dr Davis said to try Alimentum again to see if this cleared up the rash. One week later, he is still rashy, just not quite as bad. So, now the thought is that he is just a "rashy" kid and he said we could try regular formula if we want. He states that Cooper will grow out of this, as some kids are just "rashy" kids. He just wants us to call him if in a week or so the rash is getting worse.
Other than that, his two month check up went great. He weighs 11 pounds 15 ounces and is 24 inches long. He tolerated the shots well. And they are working on getting his next Syangis shot authorized. He will probably have to have at least 2 more of these to get him though RSV season.
Cooper is really starting to show his personality. He is smiling a lot more and just seems to be a happy little guy most of the time. Even Teresa, who watches him while Mom and Dad are at work, says that he smiles a lot. She just wishes he would look at her more. I caught him looking at her when she wasn't looking at him. He is a crafty little guy.
He looks so much like his sister, it's crazy. He even has the same one dimple. No more appointments for another month. Looking forward to some "normalcy", whatever that is. :-)
A few bumps in the road so far, but all is good.
We met with one of the surgeons on Tuesday for Cooper's post-op visit. He checked him out and said that he looks great. Of course we have to be vigilant of his respiratory issues. Any change in his breathing, and we need to make sure he gets checked out right away. He was more worried about the hernia recurring and causing breathing problems. He doesn't think it will happen, just that it could. He actually told us that we could just treat him like any other kid. Which was great to hear.
Two days after he came home from the hospital, we went and saw the pediatrician. At that time, Cooper was starting to get a bad case of baby acne. The doctor said that he would outgrow it. This was the worst case of baby acne I had ever seen. Turns out it isn't acne.
First the Dr Davis thought he just had a milk and soy protein intolerance. Cooper didn't have any other signs or symptoms other than the rash. So, Dr Davis said to try Alimentum again to see if this cleared up the rash. One week later, he is still rashy, just not quite as bad. So, now the thought is that he is just a "rashy" kid and he said we could try regular formula if we want. He states that Cooper will grow out of this, as some kids are just "rashy" kids. He just wants us to call him if in a week or so the rash is getting worse.
Other than that, his two month check up went great. He weighs 11 pounds 15 ounces and is 24 inches long. He tolerated the shots well. And they are working on getting his next Syangis shot authorized. He will probably have to have at least 2 more of these to get him though RSV season.
Cooper is really starting to show his personality. He is smiling a lot more and just seems to be a happy little guy most of the time. Even Teresa, who watches him while Mom and Dad are at work, says that he smiles a lot. She just wishes he would look at her more. I caught him looking at her when she wasn't looking at him. He is a crafty little guy.
He looks so much like his sister, it's crazy. He even has the same one dimple. No more appointments for another month. Looking forward to some "normalcy", whatever that is. :-)
Thursday, January 27, 2011
01-27-11
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.
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.
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.
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