Tuesday, February 16, 2010
Walking
Alexandrea has decided it is pretty cool to walk behind her doll stroller she got for her birthday. Before now, she would only creep as long as the item she was holding on did not moove.
Sunday, February 14, 2010
Thursday, February 11, 2010
Congenital Heart Disease
Congenital Heart Disease is the number one baby killer, according to the Children's Heart Foundation. An estimated 1 in 100 babies are born with CHD. CHD kills more children than all forms of childhood cancer combined.
Awareness can make a difference. Better, yet we can do something. We can make a difference. Just by talking and learning about congenital heart disease. We can work together to make sure all babies get screened, raise money for more research to save more little ones, and support the hundreds of thousands of children and adults living with CHD. Currently NO test can find every CHD in every infant. But, let's start somewhere. Let's screen every baby with a pulse oximetry test and keep working hard to find new tests and save lives.
When Alexandrea was born 7 weeks early, they listened to her heart, since also being in the NICU, she was constantly being monitered for everything from her blood pressure, her heart beats and breathes per min and even her oxygen levels. Never did they hear a hear murmur and even now at 15 months they are unable to detect one. Until now I had never really though about it, but may be all those times for no reason, her oxygen would all of the sudden dip into the 70's , and then a few min later be back on the high 90's .
No testing was ever done on her heart. Due to my little one being early,and then being diagnosed with possible nec, this is how we learned of Alexandreas ASD.
What is an asd ( atrial septal defect)?
An atrial septal defect is an opening in the atrial septum, or dividing wall between the two upper chambers of the heart known as the right and left atria. ASD is a congenital (present at birth) heart defect. As the fetus is growing, something occurs to affect heart development during the first 8 weeks of pregnancy, resulting in an ASD.
Normally, oxygen-poor (blue) blood returns to the right atrium from the body, travels to the right ventricle, then is pumped into the lungs where it receives oxygen. Oxygen-rich (red) blood returns to the left atrium from the lungs, passes into the left ventricle, and then is pumped out to the body through the aorta.
Arial septal defects occur in 4 percent to 10 percent of all children born with congenital heart disease. For unknown reasons, girls have atrial septal defects twice as often as boys.
to learn more you can go to http://www.lpch.org/diseasehealthinfo/healthlibrary/cardiac/asd.html
Due to Alexandrea's having possible NEC,s he was having daily x rays of her lower abd to watch for any change. During one of these xrays, the x ray tech messed up, He took on xray that went higher up. He took a xray that picture her heart. But this xay, showed something that they did not like. for her hear was slightly enlarged, now I was even more scared. My baby was lying in a isolette, and now may have a heart issue. Within an hour of this xray, they ordered a echo. Shortly there after , they told us that Alexandrea had a hole in her heart, That this would mostly close on hits own but may need to be surgically fixed.
Then due to her nec, they ended up flying her almost 300 miles from home to a higher level nicu and where there were specialists . Our home town nicu did not have any. By late evening they had ruled out nec, but again went back to her heart, they repeated the echo, the hole was a moderate sized . They said it should heal, but we will watch and wait.
When Alexandrea was a ablut 7 months, she had a repeat echo once again, This time the said it will most likely need help to close but we need her bigger, we would like her to be around 30-34 lbs, but wnat to fix before school age, the bigger the better. Well if you know us, This has also been a issue. Alexandrea weighs 14 lbs and some change
What are the symptoms of an atrial septal defect?
Many children have no symptoms and seem healthy. However, if the ASD is large, permitting a large amount of blood to pass through to the right side of the heart, the right atrium, right ventricle, and lungs will become overworked, and symptoms may be noted. The following are the most common symptoms of atrial septal defect. However, each child may experience symptoms differently. Symptoms may include:
child tires easily when playing
fatigue
sweating
rapid breathing
shortness of breath
poor growth
Ok for us, Alexandrea is classic, she pretty much has all the above, but yet the cardiologist says I do not feel her asd is related to her weight issues.
They look at me , how big were you. and just kinda brush me off. We did seek a second opnion, who said I belive some of the wight issues could be realted, but we need her bigger because of how they have to repair this.
surgical repair
Your child's ASD may be repaired surgically in the operating room, or by a cardiac catheterization procedure. The surgical repair is performed under general anesthesia. The defect may be closed with stitches or a special patch.
The cardiac catheterization procedure may also be an option for treatment. During the procedure, the child is sedated and a small, thin, flexible tube (catheter) is inserted into a blood vessel in the groin and guided to the inside of the heart. Once the catheter is in the heart, the cardiologist will pass a special device, called a septal occluder, into the open ASD preventing blood from flowing through it. This procedure is still very new. Consult your child's physician for more information.
we are hoping if they do have to repair this they can fix with the cardiac catherization as we rather her not to have open heart surgery. For the cath procdure the smaller they are, the harder it is for them to insert the cath .
Every baby needs to be screened. They have portable pulse ox, We used one after Alexandrea came home. If Alexandrea never hadd possible nec, she may have never been diagnosed.
Please go visit Cora's story, lets get the story out there.
Awareness can make a difference. Better, yet we can do something. We can make a difference. Just by talking and learning about congenital heart disease. We can work together to make sure all babies get screened, raise money for more research to save more little ones, and support the hundreds of thousands of children and adults living with CHD. Currently NO test can find every CHD in every infant. But, let's start somewhere. Let's screen every baby with a pulse oximetry test and keep working hard to find new tests and save lives.
When Alexandrea was born 7 weeks early, they listened to her heart, since also being in the NICU, she was constantly being monitered for everything from her blood pressure, her heart beats and breathes per min and even her oxygen levels. Never did they hear a hear murmur and even now at 15 months they are unable to detect one. Until now I had never really though about it, but may be all those times for no reason, her oxygen would all of the sudden dip into the 70's , and then a few min later be back on the high 90's .
No testing was ever done on her heart. Due to my little one being early,and then being diagnosed with possible nec, this is how we learned of Alexandreas ASD.
What is an asd ( atrial septal defect)?
An atrial septal defect is an opening in the atrial septum, or dividing wall between the two upper chambers of the heart known as the right and left atria. ASD is a congenital (present at birth) heart defect. As the fetus is growing, something occurs to affect heart development during the first 8 weeks of pregnancy, resulting in an ASD.
Normally, oxygen-poor (blue) blood returns to the right atrium from the body, travels to the right ventricle, then is pumped into the lungs where it receives oxygen. Oxygen-rich (red) blood returns to the left atrium from the lungs, passes into the left ventricle, and then is pumped out to the body through the aorta.
Arial septal defects occur in 4 percent to 10 percent of all children born with congenital heart disease. For unknown reasons, girls have atrial septal defects twice as often as boys.
to learn more you can go to http://www.lpch.org/diseasehealthinfo/healthlibrary/cardiac/asd.html
Due to Alexandrea's having possible NEC,s he was having daily x rays of her lower abd to watch for any change. During one of these xrays, the x ray tech messed up, He took on xray that went higher up. He took a xray that picture her heart. But this xay, showed something that they did not like. for her hear was slightly enlarged, now I was even more scared. My baby was lying in a isolette, and now may have a heart issue. Within an hour of this xray, they ordered a echo. Shortly there after , they told us that Alexandrea had a hole in her heart, That this would mostly close on hits own but may need to be surgically fixed.
Then due to her nec, they ended up flying her almost 300 miles from home to a higher level nicu and where there were specialists . Our home town nicu did not have any. By late evening they had ruled out nec, but again went back to her heart, they repeated the echo, the hole was a moderate sized . They said it should heal, but we will watch and wait.
When Alexandrea was a ablut 7 months, she had a repeat echo once again, This time the said it will most likely need help to close but we need her bigger, we would like her to be around 30-34 lbs, but wnat to fix before school age, the bigger the better. Well if you know us, This has also been a issue. Alexandrea weighs 14 lbs and some change
What are the symptoms of an atrial septal defect?
Many children have no symptoms and seem healthy. However, if the ASD is large, permitting a large amount of blood to pass through to the right side of the heart, the right atrium, right ventricle, and lungs will become overworked, and symptoms may be noted. The following are the most common symptoms of atrial septal defect. However, each child may experience symptoms differently. Symptoms may include:
child tires easily when playing
fatigue
sweating
rapid breathing
shortness of breath
poor growth
Ok for us, Alexandrea is classic, she pretty much has all the above, but yet the cardiologist says I do not feel her asd is related to her weight issues.
They look at me , how big were you. and just kinda brush me off. We did seek a second opnion, who said I belive some of the wight issues could be realted, but we need her bigger because of how they have to repair this.
surgical repair
Your child's ASD may be repaired surgically in the operating room, or by a cardiac catheterization procedure. The surgical repair is performed under general anesthesia. The defect may be closed with stitches or a special patch.
The cardiac catheterization procedure may also be an option for treatment. During the procedure, the child is sedated and a small, thin, flexible tube (catheter) is inserted into a blood vessel in the groin and guided to the inside of the heart. Once the catheter is in the heart, the cardiologist will pass a special device, called a septal occluder, into the open ASD preventing blood from flowing through it. This procedure is still very new. Consult your child's physician for more information.
we are hoping if they do have to repair this they can fix with the cardiac catherization as we rather her not to have open heart surgery. For the cath procdure the smaller they are, the harder it is for them to insert the cath .
Every baby needs to be screened. They have portable pulse ox, We used one after Alexandrea came home. If Alexandrea never hadd possible nec, she may have never been diagnosed.
Please go visit Cora's story, lets get the story out there.
Wednesday, February 10, 2010
15 Months
My little one turn 15 months today.
Still a tiny lil one but she is equally proprotioned.
She is still just kinda crawling but mainly just scoots around on her bottom, it rather cute.
She is saying about 10 words and can sign about another 8 or so. She mainly babbles though
She is now in a size 3 diaper, while she could still wear size 2, but they were getting a little on the short side from the front to back. Alexandrea i sow for he most part in size 9 monhts, Sh e easily could wear some 3 months and 6 months they are getting too short.
Sunday, January 31, 2010
Car Seats
We have been out car seat shopping, Ugg, I sometimes hate living in a small town.
Due to our little one yet being a lightweight 14 lbs and some change, we need a car seat that will protect her well.
We also will be extended rear facing with her, as this is so much safer and now the new recomendation is 2 years and 35- 40 lbs . I can't even turn her now as , the state law is 1 year and 20 lbs. I need to have a seat that will be easy to use as well. Once she out grows her infant car seat, I wil also need a second car seat so I will have one for gandma and daddy when he does take Alexandrea places. And right now they have a pretty good sale on at babies r us but our store of toys r us is worthless and there selection of car seat seems to focus more on the booster seats. Looks like we will need to do mail order.
Here are a couple of pic of our sweet princess too.
March of Dimes
March of Dimes Q and A
In just a few weeks we will be walking (maybe) for the March of Dimes and for babies just like Alexandrea . I have tried my best to think of possible questions you might have and provide answers to them. If you have other questions please leave them in the comment section of this post and I will try my best to answer them.
When is the walk?
We maybe participating in the walk. However, this year our big walk will be in Grants Pass which will take place on Saturday, April 24th at 9am. Please join us in the walk!!
They have changed the walk this year and have combined 2 county walks, the Medford and Grants Pass walk. I am so bummed that we will not have our local walk, the one that walked around the hospital that our little one was born at and spent the first 3 weeks of her life before being flown to Portland. The one with the NICU nirses that helped care for our little one. We our nor even sure, now how many nurses will walk since it will be 30 miles away.
How can I help?
Helping is easy! You can pray, you can walk, you can tell others about the March of Dimes, you can donate money or you can raise your own money. And if you are feeling especially motivated , you can do all of those!
How do I donate?
Donating is simple. You can click on the purple button located at the top. Once you click on that button you will be taken to a very secure page where you can donate using your debit card or credit card. If you aren't comfortable making donations online then you can send a check through the mail - just be sure to make it out to the March of Dimes.
How do I sign up to be a walker?
There are two ways to do this. One, you can simply leave me a message or send me an email and let me know you want to be a walker. Simple as that. Or, you can click on the purple button located to the right. Once you click there it will take you to a new page. There will be two options on that page. One says To Donate and the other says To Walk. If you click on the button that says To Walk, then it will take you to yet another page where you can sign up to walk and also set a goal to raise your own money. In the end, the money you raise will go toward Team Alexandrea's grand total.
I'm confused. What do you mean, "raise my own money"?
There are two ways to give to Alexandrea's Team. You can simply donate OR you can help raise money on your own. When you help raise money, you set your own goal and you seek out others to donate to YOU. Closer to the walk you will collect all of your money, send it to me and all donations will go toward Alexandrea's grand total. If you raise $200 you will receive a March of Dimes t-shirt. If you raise $500 then you will receive a March of Dimes t-shirt and sweatshirt. And so on, and so on.
I've never participated in a walk, what is it like?
Last year was our first walk and it was amazing. Last year we only participated in the Medford walk. The walk began at 9:00am so we all met up a little before then. We all began at the same starting point, but there were different routes you could do the longest route was about 6 miles. We took our own water bottles, but along the way there were stations with fruit and water. There were people walking, people running, people sitting along side the road and others that weren't able to walk and they stayed back at the starting point. Alexandrea rode in her stroller and slept the entire time. There were lots and lots of people and it was such a rewarding and special day!
The walk was over before lunch and different vendors supplied drinks and food.
Other information:
Please let me know if you have any other questions or need any other information.
In just a few weeks we will be walking (maybe) for the March of Dimes and for babies just like Alexandrea . I have tried my best to think of possible questions you might have and provide answers to them. If you have other questions please leave them in the comment section of this post and I will try my best to answer them.
When is the walk?
We maybe participating in the walk. However, this year our big walk will be in Grants Pass which will take place on Saturday, April 24th at 9am. Please join us in the walk!!
They have changed the walk this year and have combined 2 county walks, the Medford and Grants Pass walk. I am so bummed that we will not have our local walk, the one that walked around the hospital that our little one was born at and spent the first 3 weeks of her life before being flown to Portland. The one with the NICU nirses that helped care for our little one. We our nor even sure, now how many nurses will walk since it will be 30 miles away.
How can I help?
Helping is easy! You can pray, you can walk, you can tell others about the March of Dimes, you can donate money or you can raise your own money. And if you are feeling especially motivated , you can do all of those!
How do I donate?
Donating is simple. You can click on the purple button located at the top. Once you click on that button you will be taken to a very secure page where you can donate using your debit card or credit card. If you aren't comfortable making donations online then you can send a check through the mail - just be sure to make it out to the March of Dimes.
How do I sign up to be a walker?
There are two ways to do this. One, you can simply leave me a message or send me an email and let me know you want to be a walker. Simple as that. Or, you can click on the purple button located to the right. Once you click there it will take you to a new page. There will be two options on that page. One says To Donate and the other says To Walk. If you click on the button that says To Walk, then it will take you to yet another page where you can sign up to walk and also set a goal to raise your own money. In the end, the money you raise will go toward Team Alexandrea's grand total.
I'm confused. What do you mean, "raise my own money"?
There are two ways to give to Alexandrea's Team. You can simply donate OR you can help raise money on your own. When you help raise money, you set your own goal and you seek out others to donate to YOU. Closer to the walk you will collect all of your money, send it to me and all donations will go toward Alexandrea's grand total. If you raise $200 you will receive a March of Dimes t-shirt. If you raise $500 then you will receive a March of Dimes t-shirt and sweatshirt. And so on, and so on.
I've never participated in a walk, what is it like?
Last year was our first walk and it was amazing. Last year we only participated in the Medford walk. The walk began at 9:00am so we all met up a little before then. We all began at the same starting point, but there were different routes you could do the longest route was about 6 miles. We took our own water bottles, but along the way there were stations with fruit and water. There were people walking, people running, people sitting along side the road and others that weren't able to walk and they stayed back at the starting point. Alexandrea rode in her stroller and slept the entire time. There were lots and lots of people and it was such a rewarding and special day!
The walk was over before lunch and different vendors supplied drinks and food.
Other information:
Please let me know if you have any other questions or need any other information.
Wednesday, January 20, 2010
My Sweet Girl
This last week we have has alot of firsts. I am amazed at how fast she changes.
so here is what was up last 2 weeks.
Our lab that we had done back in November came back normal!! Yipee they have ruled out a few things, We are very greatful this was normal.
Alexandrea cut 3 more teeth, as of right now , she has 7 , 3 on the top and 4 on the bottom, with one more front tooth ever so close amd molars not far behind to coming in.
She flats out refuses to eat anything that is pureed, She was eating 2-3 jars a day mixed with cereal a day , and all of the sudden will not eat it, shakes her head no, screams, and pushes away with hand. She loves to eat puffs, waffes, crackers, raisens and sweet potato fries. When she is a good eating mood , she will also eat chicken and hamburger and few bits off of mom's plate of what ever we happen to be eating. She is still tiny, at her last weigh in on Jan 7, 2010 she weighed 13lbs 5.5oz, so our weight gain has been very slow. We manage to get a few samples recently of a product called duocal. This is a product that we can add to her bottles, or food and it adds calories. She seems to be tolerating this product well, so we ahre hoping for a more positive weight gain here. We are hoping to hit at least 15lbs or more by her 15 month birthday on Feb 10. So please pray for weight gain .
As I mentioned last week Alexandrea was pulling up, she is still pulling up when she wants. She is a rather lazy when it come to being mobile. We have a hard time letting her cry , as if she does cry too long, she vomits, and due to our weight issues, we cannot have this. We need every oz in her. It is a vicious cycle.
She has been able to roll over for some time but would never stay on her belly , no matter how much we tried, She would immediatly flip back over or scream and cry, again we cannot let her cry too long. When we would put her to bed, she would roll side to side and sleep on her back, but would not roll to her belly and would pretty much be in the same spot we put her to bed. On sat night that all changed, she has flipped to her bed a coulple of times and laying on her belly, she has sat up in bed , Granted her be does have a wedge making the head higher due to her reflux but she sat up.
She has manage to get up on her hands and knees and move forward, I have yet to see it but she does move about 5 feet, so she is crawling, but I have a feeling she will not crawl long, she rather be up and about.
Tonight she was standing at the coffee table and then her doll stroller and took a few steps while holding on, Oh my , Once she discovers balance she just might take off and run !!
so here is what was up last 2 weeks.
Our lab that we had done back in November came back normal!! Yipee they have ruled out a few things, We are very greatful this was normal.
Alexandrea cut 3 more teeth, as of right now , she has 7 , 3 on the top and 4 on the bottom, with one more front tooth ever so close amd molars not far behind to coming in.
She flats out refuses to eat anything that is pureed, She was eating 2-3 jars a day mixed with cereal a day , and all of the sudden will not eat it, shakes her head no, screams, and pushes away with hand. She loves to eat puffs, waffes, crackers, raisens and sweet potato fries. When she is a good eating mood , she will also eat chicken and hamburger and few bits off of mom's plate of what ever we happen to be eating. She is still tiny, at her last weigh in on Jan 7, 2010 she weighed 13lbs 5.5oz, so our weight gain has been very slow. We manage to get a few samples recently of a product called duocal. This is a product that we can add to her bottles, or food and it adds calories. She seems to be tolerating this product well, so we ahre hoping for a more positive weight gain here. We are hoping to hit at least 15lbs or more by her 15 month birthday on Feb 10. So please pray for weight gain .
As I mentioned last week Alexandrea was pulling up, she is still pulling up when she wants. She is a rather lazy when it come to being mobile. We have a hard time letting her cry , as if she does cry too long, she vomits, and due to our weight issues, we cannot have this. We need every oz in her. It is a vicious cycle.
She has been able to roll over for some time but would never stay on her belly , no matter how much we tried, She would immediatly flip back over or scream and cry, again we cannot let her cry too long. When we would put her to bed, she would roll side to side and sleep on her back, but would not roll to her belly and would pretty much be in the same spot we put her to bed. On sat night that all changed, she has flipped to her bed a coulple of times and laying on her belly, she has sat up in bed , Granted her be does have a wedge making the head higher due to her reflux but she sat up.
She has manage to get up on her hands and knees and move forward, I have yet to see it but she does move about 5 feet, so she is crawling, but I have a feeling she will not crawl long, she rather be up and about.
Tonight she was standing at the coffee table and then her doll stroller and took a few steps while holding on, Oh my , Once she discovers balance she just might take off and run !!
Friday, January 15, 2010
Pulling Up
Alexandrea is getting closer to crawling, but still does not care for being on her belly so she generally prefers to sit when on the floor.
Tonight, Alexandrea pulled up twice to a complete stand all by herself using other objects before tonight she would only pull up with some help like when we are holding her.
The look on her face was priceless. I did not get a picture of her standing but here is her on her knees.
Tonight, Alexandrea pulled up twice to a complete stand all by herself using other objects before tonight she would only pull up with some help like when we are holding her.
The look on her face was priceless. I did not get a picture of her standing but here is her on her knees.
Wednesday, January 13, 2010
Sign Language
Since Alexandrea was about 8 months old, we started to use a few basic signs with her. She is now siging 3 things bottle, milk and more .
Alexandrea was eating a snack and signed "more"
Sunday, January 10, 2010
standing
Alexandrea so far has no interest in walking or crawling, but yet loves to stand !!
on another note
on another note
Alexandrea has cut 2 more teeth , aaahh teething
Wednesday, January 6, 2010
Saturday, January 2, 2010
Some Post Birthday Fun
When we celebrated Alexandrea's 1st birthday, she wanted nothing to do with cake. She would would not touch and cried. So we decided we would wait till her original due date of December 30 or so and then let ehr have cake to smash. So last night we had cake, she loved it. this time as you can see, she was having alittle too much fun.
Subscribe to:
Posts (Atom)