It's not what you think. We are having take Cooper in for weekly weight checks because he hasn't been gaining weight like he should.
For instance, last week he weighed in at a hefty 13 pounds 1 ounce. This was a 10 ounce weight gain in one week. Whereas the previous 6 weeks he had only gained a total of 8 ounces. Dr Davis asked us to keep doing weekly weight checks. So, today we took Cooper in again and you'll never guess what happened. He lost 2 ounces. It seems like he just can't catch a break. Hopefully, when we go in next week for our four month check, he will have put on some weight.
We can only assume he lost weight because he is so much more active, and he has yet another cold. Per Dr Davis, the drainage he has fills up his stomach so he isn't eating as much. And he has been eating less then usual.
Randy and I are looking forward to the nicer weather, as most people are, so we can open up the house and get the "bugs" out. Lea, Jaxon, and I will just have to make sure we have our allergy medicine on hand.
Most parents want time to slow down, so their children do not grow up so fast. And I would say that with the first two, that is definitely the case. With Cooper, it's different. Of course I want him to stay little so I can protect him, but at the same time, I wish it were a year from now already. I want his little immune system to be stronger. I want to see him crawl for the first time. I want to see him walk. I want to see him annoying his big brother and sister. I want to see him torture the dog. All the little things that I took for granted with Lea and Jaxon. Those things that I hope he will do someday. There is no guarantee that he will do these things, or that something else won't come up, due to his CDH, that will prevent him from doing a somersault.
Right now, Cooper is right on track to do everything that any other child can do. And every day I look at him and smile at our little miracle. Even if he isn't able to do some of these things, he's here with us. And who can ask for anything more.
Love you Coop!!!
Thursday, April 7, 2011
Wednesday, April 6, 2011
Babies that have departed because of CDH. Please help us so we do not have to add any more names to this list!
Pages created to honor the memory of our brave, departed CDH children.
•Aiden Zach Scott Towner
•Allison Corsetti
•Ava Grace Apple
•Avery Mae Ziebart
•Caleb Ray Cox
•Connor Ellis McLuckie
•Dakota Mae Vosse
•Donald Zeraihi Wellman
•Faith Grace Miles
•Gabriel Eric Nava
•Grace Dill
•Gregory Zion Couret
•Jak Thomas Parsons Forshaw
•Jason Lee
•Joel Archie Jed Abel
•John Clinton Hollingsworth
•Jolee Jean Scott
•Judah Matthew Southmayd
•Kasey James Colvin
•Madeline Emiley
•Madison Lillian Schultz
•Mathias Jacob
•McKenna Lynne Varen
•Mert Akar
•Olivia Raine Richards
•Parker Reese Singletary
•Raymond "Drew" Lewallen
•Robert Joseph "Bryce" Southwell
•Ryan and Jesse
•Ryann Hope Smith
•Sarah Christina Lewis
•Taylor Adam "Zachary" Holler
•Aiden Zach Scott Towner
•Allison Corsetti
•Ava Grace Apple
•Avery Mae Ziebart
•Caleb Ray Cox
•Connor Ellis McLuckie
•Dakota Mae Vosse
•Donald Zeraihi Wellman
•Faith Grace Miles
•Gabriel Eric Nava
•Grace Dill
•Gregory Zion Couret
•Jak Thomas Parsons Forshaw
•Jason Lee
•Joel Archie Jed Abel
•John Clinton Hollingsworth
•Jolee Jean Scott
•Judah Matthew Southmayd
•Kasey James Colvin
•Madeline Emiley
•Madison Lillian Schultz
•Mathias Jacob
•McKenna Lynne Varen
•Mert Akar
•Olivia Raine Richards
•Parker Reese Singletary
•Raymond "Drew" Lewallen
•Robert Joseph "Bryce" Southwell
•Ryan and Jesse
•Ryann Hope Smith
•Sarah Christina Lewis
•Taylor Adam "Zachary" Holler
Tuesday, April 5, 2011
Our visit with Grandma, Grandpa, and Great Grandma Baumert
This past weekend the entire family took the very long road trip to Howells. I know. I know. It's not that long of a trip to Howells, only 1 1/2 hours. But, any parent can tell you, there are times when 10 minutes can feel like and hour. This was one of those trips.
The drive up was not terrible. Jaxon was such a big help. Cooper decided he was hungry about 30 minutes out from Howells, so, Jaxon actually was able to feed him in his carseat. I was so grateful, because at that point I didn't want to have to stop. So, it was pretty much without incident.
We had a lot of fun playing with Grandma and Grandpa. My sister Angel and her family (Bill and Isabella) came up for the night as well. Lea and Bella played and played. It was very cute seeing them on the big swing together and chasing Grandpa. Grandma took them to the park and they got to go on the merry-go-round. Which is all Lea could talk about doing the minute we told her we were going up to Grandma and Grandpa's. That and of course playing with Bella.
Grandpa took Jaxon on a walk. A tradition those two started many years ago when Jaxon was just a little guy. I know Jaxon loves the walks and Grandpa loves spending time with Jaxon. They always find something new, even in small town USA.
That evening, us Moms and Dads went to the annual Howells steak fry. It's always fun to go and see old friends. For me, it's a mini reunion every year. I only get to see some of these people at this event. The best part of the evening would have to have been the fact that we didn't have to get up with the kids. Grandma and Grandpa took care of them for us. That being said...I was still up just before 7am. Oh well, I didn't have to get up in the middle of the night with Cooper. Yeah!
Sunday, before we headed back to Lincoln, we went to visit Great Grandma in the nursing home. I have no idea why, but those places make me uneasy. I was extra nervous about visiting Great Grandma because the last few times I saw her, she didn't know who I was. That really breaks my heart, but I understand, she's almost 98 and she entitled to forget things. This was a good visit. She actually remembered me and Jaxon. I didn't talk much, mainly because I felt that I could start crying any moment. I don't know if my dad will understand, but for almost a year, she didn't know who I was, and knowing this could very well be the last time I see her, I about lost it. I did keep it together for the kids though. We were able to get some pictures with Great Grandma and the kids. Something I will cherish forever.
The ride back to Lincoln was the longest 90 minutes I spent in a long time. Tired kids + tired parents + one bad headache = One bad trip. "I will have daddy pull this car over if you don't stop it now" was actually used. And did happen. Lea was just screaming about everything and would not stop. Cooper cries anytime Lea does, so Cooper was crying. Nothing seemed to calm either of them down, so Randy pulled over and took Lea out of the car, while I took Cooper out of his carseat to calm him down. Two hours later, ok, maybe only ten minutes, we had two somewhat calm children and we sped home. Jaxon was a little angel through all of this. He tried his best to calm down Cooper, but he just couldn't.
There you have it. A day in the life of another average American family. You know what, I wouldn't trade it for anything.
The drive up was not terrible. Jaxon was such a big help. Cooper decided he was hungry about 30 minutes out from Howells, so, Jaxon actually was able to feed him in his carseat. I was so grateful, because at that point I didn't want to have to stop. So, it was pretty much without incident.
We had a lot of fun playing with Grandma and Grandpa. My sister Angel and her family (Bill and Isabella) came up for the night as well. Lea and Bella played and played. It was very cute seeing them on the big swing together and chasing Grandpa. Grandma took them to the park and they got to go on the merry-go-round. Which is all Lea could talk about doing the minute we told her we were going up to Grandma and Grandpa's. That and of course playing with Bella.
Grandpa took Jaxon on a walk. A tradition those two started many years ago when Jaxon was just a little guy. I know Jaxon loves the walks and Grandpa loves spending time with Jaxon. They always find something new, even in small town USA.
That evening, us Moms and Dads went to the annual Howells steak fry. It's always fun to go and see old friends. For me, it's a mini reunion every year. I only get to see some of these people at this event. The best part of the evening would have to have been the fact that we didn't have to get up with the kids. Grandma and Grandpa took care of them for us. That being said...I was still up just before 7am. Oh well, I didn't have to get up in the middle of the night with Cooper. Yeah!
Sunday, before we headed back to Lincoln, we went to visit Great Grandma in the nursing home. I have no idea why, but those places make me uneasy. I was extra nervous about visiting Great Grandma because the last few times I saw her, she didn't know who I was. That really breaks my heart, but I understand, she's almost 98 and she entitled to forget things. This was a good visit. She actually remembered me and Jaxon. I didn't talk much, mainly because I felt that I could start crying any moment. I don't know if my dad will understand, but for almost a year, she didn't know who I was, and knowing this could very well be the last time I see her, I about lost it. I did keep it together for the kids though. We were able to get some pictures with Great Grandma and the kids. Something I will cherish forever.
The ride back to Lincoln was the longest 90 minutes I spent in a long time. Tired kids + tired parents + one bad headache = One bad trip. "I will have daddy pull this car over if you don't stop it now" was actually used. And did happen. Lea was just screaming about everything and would not stop. Cooper cries anytime Lea does, so Cooper was crying. Nothing seemed to calm either of them down, so Randy pulled over and took Lea out of the car, while I took Cooper out of his carseat to calm him down. Two hours later, ok, maybe only ten minutes, we had two somewhat calm children and we sped home. Jaxon was a little angel through all of this. He tried his best to calm down Cooper, but he just couldn't.
There you have it. A day in the life of another average American family. You know what, I wouldn't trade it for anything.
Friday, April 1, 2011
Starting anew!
As you who have followed via this blog know, it has been quite some time since we have posted anything to update everyone on Cooper and the family.
Everyone is doing great! We had our battles with colds, but we all made it through. Cooper survived his first cold. It did take a toll on him though. He's been struggling to gain weight, but I think we are finally over that hurdle.
We have found over the last month that Cooper's little heart is just fine. He had an echo as part of the Dhreams study he is participating in. While at that check up we noticed that he hadn't gained any weight in the last month. So, in follow up we went to his pediatrician and found that he indeed has only gained 4 ounces in 5 weeks. He told us that he should be gaining 2 pounds a month. So, we have been on an increased calorie diet for the past week. He has gained 10 ounces this past week. Back on track!
In the meantime, life has gotten back to it's crazy self for the rest of us as well. Jaxon's soccer season started last Sunday and will go for the next 7 weeks. He is almost done with his 2nd grade year. Just very hard to believe. He is getting so big.
Lea...well, Lea is Lea. Love the girl to death, but the high drama that comes with her is a little maddening. She loves to be a princess and loves to torture her big brother. What every 3 year old girl should do. It is obvious to me that all the time we spent away from the two of them when Cooper was in Omaha, really affected her. She no longer wants to spend the night places without mom and dad. When she does, she wants to go home immediately when we get there to pick her up. Hopefully she will get over this too.
Randy is loving his work and doing really well. He would really like Cooper to sleep through the night. As would I. We know that he will eventually, but the lack of sleep is starting to get to us.
Me, well, I tried to go back to work part time so I could spend some quality time with Cooper. I only had 2 weeks of leave left after he was released from the hospital. But, my bosses said I had to go back full time. So, I reluctantly went back to work. They love to preach equality amoung the employees, but if you aren't a friend or family of the administration, there is no such thing. I do keep reminding myself, that I am lucky that I have a job and the office politics are in every office.
We have started a foundation to educate everyone about CDH. There are still doctors out there that know very little about CDH. While in the NICU in Omaha with Cooper, we were told about one couple from Sioux City that was told that this was an unsurvivable defect. They didn't accept that answer, researched it, and found UNMC. Their baby is alive and well. We do not want this to happen to any other families. It is completely unacceptable that physicians are giving death sentences to babies because they haven't been properly educated. Our mission is to change this. Please help support our cause to get the word out there about CDH.
In the meantime we are getting on with our everyday lives, and loving having us all under one roof. God has truly blessed us! Our family is home and healthy. We have wonderful family and friends that have supported us through all of this and continue to do so everyday.
Everyone is doing great! We had our battles with colds, but we all made it through. Cooper survived his first cold. It did take a toll on him though. He's been struggling to gain weight, but I think we are finally over that hurdle.
We have found over the last month that Cooper's little heart is just fine. He had an echo as part of the Dhreams study he is participating in. While at that check up we noticed that he hadn't gained any weight in the last month. So, in follow up we went to his pediatrician and found that he indeed has only gained 4 ounces in 5 weeks. He told us that he should be gaining 2 pounds a month. So, we have been on an increased calorie diet for the past week. He has gained 10 ounces this past week. Back on track!
In the meantime, life has gotten back to it's crazy self for the rest of us as well. Jaxon's soccer season started last Sunday and will go for the next 7 weeks. He is almost done with his 2nd grade year. Just very hard to believe. He is getting so big.
Lea...well, Lea is Lea. Love the girl to death, but the high drama that comes with her is a little maddening. She loves to be a princess and loves to torture her big brother. What every 3 year old girl should do. It is obvious to me that all the time we spent away from the two of them when Cooper was in Omaha, really affected her. She no longer wants to spend the night places without mom and dad. When she does, she wants to go home immediately when we get there to pick her up. Hopefully she will get over this too.
Randy is loving his work and doing really well. He would really like Cooper to sleep through the night. As would I. We know that he will eventually, but the lack of sleep is starting to get to us.
Me, well, I tried to go back to work part time so I could spend some quality time with Cooper. I only had 2 weeks of leave left after he was released from the hospital. But, my bosses said I had to go back full time. So, I reluctantly went back to work. They love to preach equality amoung the employees, but if you aren't a friend or family of the administration, there is no such thing. I do keep reminding myself, that I am lucky that I have a job and the office politics are in every office.
We have started a foundation to educate everyone about CDH. There are still doctors out there that know very little about CDH. While in the NICU in Omaha with Cooper, we were told about one couple from Sioux City that was told that this was an unsurvivable defect. They didn't accept that answer, researched it, and found UNMC. Their baby is alive and well. We do not want this to happen to any other families. It is completely unacceptable that physicians are giving death sentences to babies because they haven't been properly educated. Our mission is to change this. Please help support our cause to get the word out there about CDH.
In the meantime we are getting on with our everyday lives, and loving having us all under one roof. God has truly blessed us! Our family is home and healthy. We have wonderful family and friends that have supported us through all of this and continue to do so everyday.
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. :-)
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