Ethan had his sedated echo day before yesterday and he couldn't be doing better. His glenn looks good, his PA band is not too tight or too loose, and he has "trivial" amounts of leakage in his valves. So...no more enalapril!!! We are down to amoxil to keep from getting a bacterial infection and aspirin...
Ethan hated the Chloral Hydrate. He only slept for about 45 minutes on it and then woke up angry. After an hour of fussy screaming he had been cleared to go home and seen Dr. Altman that couldn't be more pleased...he fell back asleep around 230 and didn't wake up for three hours! He's back to his normal growling self and can stand without momma's help against a chair without falling down...
Also...a friend of Ethan's was born today. Welcome to the world Johnny...he has ethan's diagnosis along with a few more complications but seems to be doing well. Visit him on carepages at Johnny's Way...
We don't have another cardiology check up until September 14th....we will have chest x-rays and an EKG and an echo if needed...
Wednesday, May 20, 2009
Monday, May 11, 2009
I can talk!!!
Ethan can say da da...ma ma...and by by by by by by...he has tried to wave and is being absolutely adorable...
We are off of enalapril for the time being. Dr. Altman wants to see how his heart valve is handling being off it for his echo next week. I'm getting antsy...all you heart parents will completely understand how unsettling it is to go in for a check up appointment. Everything seems to be going well, but we won't know for sure until we get that echo next week. This will also be his fist sedated echo. That has me nervous...flashbacks of surgery... He has had a few episodes of his hands and feet turning light blue but they have coincided with activity. I'll be glad to have this appointment over and done and be back home. I'm taking a packed bag just in case...I'm a little paranoid. I'll update after our appointment!!!
We are off of enalapril for the time being. Dr. Altman wants to see how his heart valve is handling being off it for his echo next week. I'm getting antsy...all you heart parents will completely understand how unsettling it is to go in for a check up appointment. Everything seems to be going well, but we won't know for sure until we get that echo next week. This will also be his fist sedated echo. That has me nervous...flashbacks of surgery... He has had a few episodes of his hands and feet turning light blue but they have coincided with activity. I'll be glad to have this appointment over and done and be back home. I'm taking a packed bag just in case...I'm a little paranoid. I'll update after our appointment!!!
Saturday, April 25, 2009
April has been good!
Ethan pulling up on his roller ball...he's on his knees can you believe it!!!
Baby's First Easter
He loved dying Easter eggs...you can barely see his scar!!!
Hunting Easter eggs with Momma
Easter eggs are yummy
I will eat the penguin...I will eat the penguin!!!
Ethan loved the Children's Museum over Spring Break
As you can see, Ethan is doing really well and has a beautiful smile that lights up his whole face. He is a joy to be around and people are drawn to him. We can't go anywhere without someone coming up and telling us how wonderful he is...we agree!!! Seriously it is a wonderful opportunity to let people know about CHD and introducing the gospel to them by explaining how Heavenly Father has blessed us and...so two plusses in my book.
Last weekend was a little scary for me. Ethan is learning how to pull up and he is crawling everywhere. His little body hasn't had time to adjust to the new activity level and it made his heart have to work a little too hard. He was sweating in his sleep and his heart was racing so that calls for a call to Dr. Altman to find out if we need to come in for a check. After talking to her on the phone we decided that he was okay to wait until his echo in the 18th unless he has another problem. After a week of eagle eye watching I am relaxing a little bit. So...until something else happens I'm trying to enjoy my family and watch the amazing things that Ethan is doing. The tooth count is up to 8. He is getting into everything. He continually amazes us. His body seems to be getting used to higher activity so he is doing well. He is eating bites of table food now and loves his taters and mangos.
Easter gave me some time of reflection. I am so grateful for the atonement and my Savior. We had a really fun time this Easter. We went to the egg hunt at Craig's preschool and then an Easter party at a friend's house later Saturday afternoon. Sunday we hunted eggs that the Easter bunny left for us and got some really cute pictures of the kids tearing into their Easter baskets. It was so good to have a holiday that wasn't colored in fear. Everytime we've had a holiday with Ethan we are either under heart monitors, or just waiting for him to crash. We are a very blessed family.
Monday, March 16, 2009
Catching Up!!!
I am so very ashamed of myself for not updating for so long! We have been crazy busy but that is still no excuse! Ethan is doing really well. He is up on his hands and knees and scoots backwards! We call it getting stuck in reverse. He can also prop himself up on one hand when he is sitting up so we are now very mobile and I have to finish baby proofing. His tooth count is up to five. To bottom middles, one bottom on his left, and the two top teeth that are just to the sides of the middle front teeth. The top looks like a vampire and the bottom looks like a chipmunk, so we jokingly say that we should have named him Edward Alvin...
His three month check up was on March 2nd and Dr. Altman said he is looking really good. She loves that he is mobile and so active. He truly is a miracle as far as she is concerned because he has done this on his own. No physical therapy or intervention. Most heart babies are developmentally delayed in motor skills because their bodies are weak from lack of circulation/movement during hospitalizations. Not Mr. Ethan...
We were also able to wean off of his last dose of Lasix. This was given to him as a diuretic after surgery. His lungs are clear and sounding good! His next appointment is may 18th. We will have a sedated echocardiogram that day so that should be fun! *dripping sarcasm* 1-2 weeks before that echo we are to take him off of his enalapril so they can tell during the scan wether or not we will be able to wean the enalapril long term. Our fingers are crossed that we will be able to. That will take us down to two medications that he will be on long term. Aspirin is his lifelong med...;0(...and he will be on amoxil twice a day until he is five to help his body fight off infections since he doesn't have a spleen.
I've had a lot of reflection time in the past few weeks. We've hit some year anniversaries that have made me stop and think and be so grateful for the blessings we have received this year. feb 28th was the year anniversary of finding out Ethan had a heart problem. The day was fairly hard. As much as I wish Ethan hadn't been born with health issues, I can't help but be grateful for the fact that I have learned so much in the past year. I have met many wonderful people that share their strength freely as they are going through similar situations. I have watched friend's watch their children lose their CHD battle and still smile at pictures and memories of them. Their strength is amazing. I've also learned that I too am strong. I too can smile at difficult memories. Heavenly Father has strengthened me, my children, and my family. I feel as if we have been through a refiner's fire in the past year. And I am grateful for it...
His three month check up was on March 2nd and Dr. Altman said he is looking really good. She loves that he is mobile and so active. He truly is a miracle as far as she is concerned because he has done this on his own. No physical therapy or intervention. Most heart babies are developmentally delayed in motor skills because their bodies are weak from lack of circulation/movement during hospitalizations. Not Mr. Ethan...
We were also able to wean off of his last dose of Lasix. This was given to him as a diuretic after surgery. His lungs are clear and sounding good! His next appointment is may 18th. We will have a sedated echocardiogram that day so that should be fun! *dripping sarcasm* 1-2 weeks before that echo we are to take him off of his enalapril so they can tell during the scan wether or not we will be able to wean the enalapril long term. Our fingers are crossed that we will be able to. That will take us down to two medications that he will be on long term. Aspirin is his lifelong med...;0(...and he will be on amoxil twice a day until he is five to help his body fight off infections since he doesn't have a spleen.
I've had a lot of reflection time in the past few weeks. We've hit some year anniversaries that have made me stop and think and be so grateful for the blessings we have received this year. feb 28th was the year anniversary of finding out Ethan had a heart problem. The day was fairly hard. As much as I wish Ethan hadn't been born with health issues, I can't help but be grateful for the fact that I have learned so much in the past year. I have met many wonderful people that share their strength freely as they are going through similar situations. I have watched friend's watch their children lose their CHD battle and still smile at pictures and memories of them. Their strength is amazing. I've also learned that I too am strong. I too can smile at difficult memories. Heavenly Father has strengthened me, my children, and my family. I feel as if we have been through a refiner's fire in the past year. And I am grateful for it...
Sunday, January 18, 2009
Six Months
Wow...Ethan is six months old. I can't describe the amazement I feel in having him with us. We have seen so much in the past year that we never imagined that we would. We have had the opportunity to meet so many wonderful people whose jobs/life mission involves helping little people with special hearts and their families cope with terrifying experiences. I thank Heavenly Father daily for these people. We could not have made it and would not have Ethan now without them.
Ethan continues to thrive. He has three teeth (can you believe it!). Two on the bottom in the middle, and one eye tooth on top...he's our little vampire! He can roll over from his tummy to his back, but refuses to even try to roll from his back to his front...I think it is either making him uncomfortable or he got used to us keeping him from rolling that direction for so long after surgery. He has survived his first chest cold complete with breathing treatments. His favorite toys are link-a-doos and his stuffed Grover. I need to go buy another one to have in the closet for when this one gets nasty...I've never had a baby get this attached to a toy!
Yesterday was a wonderful day. Not because anything special happened, but because it marked a huge milestone for our family. We have had Ethan for six months...when we didn't know if he would get to stay with us more than a few minutes. He is an amazing little boy.
Ethan continues to thrive. He has three teeth (can you believe it!). Two on the bottom in the middle, and one eye tooth on top...he's our little vampire! He can roll over from his tummy to his back, but refuses to even try to roll from his back to his front...I think it is either making him uncomfortable or he got used to us keeping him from rolling that direction for so long after surgery. He has survived his first chest cold complete with breathing treatments. His favorite toys are link-a-doos and his stuffed Grover. I need to go buy another one to have in the closet for when this one gets nasty...I've never had a baby get this attached to a toy!
Yesterday was a wonderful day. Not because anything special happened, but because it marked a huge milestone for our family. We have had Ethan for six months...when we didn't know if he would get to stay with us more than a few minutes. He is an amazing little boy.
Wednesday, December 31, 2008
Please Help!!!
I need the help of anyone that is willing and able. I am going to run the It's My Heart - Noah's Legacy 5K on February 21, 2009. This 5K is to raise money to help It's My Heart fund it's support and advocacy programs for Texas Children's Hospital cardiology patients as well as all of those children that have congenital and aquired heart defects. I have posted the invitation letter below. Please sponser me in my efforts to give back to the program that has given so much not just to me, but to the entire CHD community... I don't usually ask for help like this...I hate sending my kids out on fundraisers for school, etc...but this is a program that is doing something to make the whole world a better place for a group of kids that have no choice in how their bodies are treating them.
Dear friends,
According to the March of Dimes, about 40,000 infants (1 out of every 125) are born with Congenital Heart Defects (CHD) each year in the United States. The defect may be so slight that the baby appears healthy for many years after birth, or so severe that its life is in immediate danger. Studies prove that CHD's are the most common birth defect and are the number one cause of death from birth defects during the first year of life. Nearly twice as many children die from CHD in the United States each year as die from all forms of childhood cancers combined. Over 91,000 life years are lost each year in the US due to CHD. Charges for care exceed 2.2 billion dollars, for inpatient surgery alone.Most people know someone who has been affected by Congenital Heart Defects or Acquired Heart Defects. On February 21, 2009 I will be helping It's My Heart raise awareness about the devastating affects of CHD at the National IMH CHD Awareness 5KRun & 3KWalk - Noah's Legacy. Funds raised through the IMH Run & Walk will support national awareness and help to provide comfort bags and programs to families while they are hospitalized throughout the USA. My personal goal is to raise $200.00 . Your support and donation of $100, $50, $25, $10 will help take a stand against the #1 birth defect and killer of children. Not only will you help me achieve my goal, you will also help It's My Heart make important advances in research, support and awareness of CHD. The IMH CHD Awareness Run & Walk is quickly approaching, so please make your pledge today. Thank you in advance for your support of my journey with CHD. Together we will make a difference!
For more information on It's My Heart visit www.itsmyheart.org.
From the heart,
Amanda Pennington
Yes! I am happy to support your efforts in the CHD Awareness Run & Walk! You can count on me/us for: _____$100 _____$50 ______$25 ______$10 _____$Other
Please make check payable to It's My Heart and return this form, along with your check to: It's My Heart19728 Saums Rd.PMB# 137Houston, TX 77084
Please include "Team Ethan James" in the memo of the check.You can also use Paypal, a quick and easy way to donate. Please include in the message my name and CHD Run & Walk. Just go to www.itsmyheart.org and click on "Donate".
ALL DONATIONS ARE TAX DEDUCTIBLE
If you would like to use this form, highlight it with your mouse and then choose print selection from your print menu...
Dear friends,
According to the March of Dimes, about 40,000 infants (1 out of every 125) are born with Congenital Heart Defects (CHD) each year in the United States. The defect may be so slight that the baby appears healthy for many years after birth, or so severe that its life is in immediate danger. Studies prove that CHD's are the most common birth defect and are the number one cause of death from birth defects during the first year of life. Nearly twice as many children die from CHD in the United States each year as die from all forms of childhood cancers combined. Over 91,000 life years are lost each year in the US due to CHD. Charges for care exceed 2.2 billion dollars, for inpatient surgery alone.Most people know someone who has been affected by Congenital Heart Defects or Acquired Heart Defects. On February 21, 2009 I will be helping It's My Heart raise awareness about the devastating affects of CHD at the National IMH CHD Awareness 5KRun & 3KWalk - Noah's Legacy. Funds raised through the IMH Run & Walk will support national awareness and help to provide comfort bags and programs to families while they are hospitalized throughout the USA. My personal goal is to raise $200.00 . Your support and donation of $100, $50, $25, $10 will help take a stand against the #1 birth defect and killer of children. Not only will you help me achieve my goal, you will also help It's My Heart make important advances in research, support and awareness of CHD. The IMH CHD Awareness Run & Walk is quickly approaching, so please make your pledge today. Thank you in advance for your support of my journey with CHD. Together we will make a difference!
For more information on It's My Heart visit www.itsmyheart.org.
From the heart,
Amanda Pennington
Yes! I am happy to support your efforts in the CHD Awareness Run & Walk! You can count on me/us for: _____$100 _____$50 ______$25 ______$10 _____$Other
Please make check payable to It's My Heart and return this form, along with your check to: It's My Heart19728 Saums Rd.PMB# 137Houston, TX 77084
Please include "Team Ethan James" in the memo of the check.You can also use Paypal, a quick and easy way to donate. Please include in the message my name and CHD Run & Walk. Just go to www.itsmyheart.org and click on "Donate".
ALL DONATIONS ARE TAX DEDUCTIBLE
If you would like to use this form, highlight it with your mouse and then choose print selection from your print menu...
Saturday, December 20, 2008
Merry Christmas!!!
I can't believe that we have survived with even the small shreds of sanity we have left this year, but here we are with a healthy-as-he's-gonna-get baby. We have learned many lessons this year in faith, love, friendship, and letting-go. Some of these lessons have hit us square between the eyes. Some have ripped through our hearts. While others have been a soft awakening of things that we once knew but forgot at birth. I am grateful for the past year and all that it has offered. I am so happy to have my family together and all of my kiddos doing well. True friends are once again important to me. I wouldn't trade the lessons learned and the empathy/compassion gained this year for all the heart healthy babies in the world. I never asked why this happened to Ethan. I just know that it did and it is making us all stronger. I wish that he didn't have to go through everything that he has gone through and will go through, but I can look back at this point and say that while the heartache for him is still raw, the lessons learned from our struggles this year are starting to outweigh the pain. I've always heard that Heavenly Father doesn't put more on us than we can bear. I can now say that this is a false statement. He puts on us what He needs to, and makes us strong enough for the journey. Two years ago I could not have sat in a hospital room and watch my baby get worse everyday until they could work him into a surgery that he might not survive. Now, through the strength that Heavenly Father blessed me with (because it wasn't there before I asked Him for it) I can say that I did that, and would do it again in a heartbeat if I had to. I don't want to, but I can...
I hope that everyone can hug their own kiddos a little tighter this Christmas from hearing Ethan's story. If he can help just one kid get a hug, or an echocardiogram then his story would have done it's job. And all of this will have a purpose.
For anyone who has wanted to do something for my family...please spread the knowledge around that Congenital Heart Defects are (forgive the pun) heartbreaking. They are an underfunded branch of heart research and the most common birth defect in the world. More kids die of CHD than all kinds of childhood cancers annually...awareness leads to action. And these little heart babies need quick and decisive action now...
I hope that everyone can hug their own kiddos a little tighter this Christmas from hearing Ethan's story. If he can help just one kid get a hug, or an echocardiogram then his story would have done it's job. And all of this will have a purpose.
For anyone who has wanted to do something for my family...please spread the knowledge around that Congenital Heart Defects are (forgive the pun) heartbreaking. They are an underfunded branch of heart research and the most common birth defect in the world. More kids die of CHD than all kinds of childhood cancers annually...awareness leads to action. And these little heart babies need quick and decisive action now...
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