Ethan has had a really busy month and has kept us on our toes. Our 10th wedding anniversary was June 5th. Elise's big dance recital with 4 costumes was the evening of June 5th. And Ethan caught a virus and was kangaroo crew'ed to Houston at 6 am on June 5th. It was a very busy day. His temp was 101.9 taken under the arm, his heart rate was 192, and his 02 sats were at 76. As soon as they gave him some IV fluids everything regulated, but since he is aspleenic we had to make sure the temp wasn't from a bacterial infection. All tests came back negative so we were able to go home two days later. My mom stayed with Ethan on June 5th so I could be with Elise for her dance recital and Richard and I made a trip to Houston last weekend to attend the temple for our anniversary. So, all is right with the world now! ;0)
Ethan is continuing to amaze us. He is pulling up to stand and even let go day before yesterday to stand up by himself for a few minutes. He babbles and sometimes if he wants and the mood strikes him, he will wave goodbye. He has really enjoyed the pool in my parent's backyard and smiles so big when he gets in.
The most important thing that I can think of that is coming up soon is Ethan's birthday! He will turn one on July 17th and we are asking all of our friends who helped us through this past year with your prayers and positive thinking to join us at kiwanis Park in Lufkin at 6pm for his birthday party...Don't bring him anything, you've already given us the greatest gift of your prayers and support! If you feel you must do something make a donation to It's My Heart by visiting itsmyheart.org They are a wonderful organization!!! If you are able to make it please leave a message here or email me at averpen@yahoo.com. We would love love love to have you there!!!
I'll update again soon!
Thursday, July 9, 2009
Monday, June 1, 2009
Many good things...
Last weekend Ethan had the honor of attending a friend's first birthday. Abby is an amazing little girl that we met while Ethan was recovering from his surgery last October. She has many issues with her heart and has had three open heart surgeries. She spent 7 months out of her first year in the hospital. She slept through her first Christmas and New Years...she has struggled every day to just be a little girl. Her parents are amazing. They have struggled, prayed, laughed, and cried with Abby every step of her journey. I feel blessed to know this sweet family and look forward to that day when we are all before the Lord and Ethan and Abby both have hearts that are perfect. When they can run and not be weary...
Happy Birthday Abby!!!
Johnny continues to remain stable. Due to the complexity of his heart defect a transplant is currently his only option. His parents are taking it one day at a time. I will not ask you to pray for him to receive a heart because I cannot ask you to pray for another child to die, but I am asking that if another child is going to leave this earth due to the Plan of our Father in Heaven, that Johnny be allowed to receive his heart. There is a subtle difference there. Heart transplants are painful on both the giving and receiving ends. I am not looking forward to that and hope that technology keeps progressing in such a way that Ethan will not have to be on that list when his Fontan ultimately fails...as they all do... I am asking for prayers for Johnny's family as they navigate the difficult journey that has been placed before them...they too are a very special family.
On to Ethan news...he is doing amazing. His heart no longer races when he is active so hsi circulation has caught up with his activity level. I equate it with someone beginning a running program. the first few times you run you get worn out a lot faster but evenutally you can run miles without stopping...it is the same with Ethan...he can now pull up to his feet and stand holding on to something and not work his heart too hard...we are very blessed. He has also finally decided that solids are a must instead of a treat...he gets very put out with me if I don't feed him when he decides he is hungry...He was fascinated with Abby and her ankle bracelet...he thought it was the most beautiful thing he had ever seen...I can't wait for them to go to prom!!! ;0)
Well...that's all for now...thank you for all your support and prayers...
Happy Birthday Abby!!!
Johnny continues to remain stable. Due to the complexity of his heart defect a transplant is currently his only option. His parents are taking it one day at a time. I will not ask you to pray for him to receive a heart because I cannot ask you to pray for another child to die, but I am asking that if another child is going to leave this earth due to the Plan of our Father in Heaven, that Johnny be allowed to receive his heart. There is a subtle difference there. Heart transplants are painful on both the giving and receiving ends. I am not looking forward to that and hope that technology keeps progressing in such a way that Ethan will not have to be on that list when his Fontan ultimately fails...as they all do... I am asking for prayers for Johnny's family as they navigate the difficult journey that has been placed before them...they too are a very special family.
On to Ethan news...he is doing amazing. His heart no longer races when he is active so hsi circulation has caught up with his activity level. I equate it with someone beginning a running program. the first few times you run you get worn out a lot faster but evenutally you can run miles without stopping...it is the same with Ethan...he can now pull up to his feet and stand holding on to something and not work his heart too hard...we are very blessed. He has also finally decided that solids are a must instead of a treat...he gets very put out with me if I don't feed him when he decides he is hungry...He was fascinated with Abby and her ankle bracelet...he thought it was the most beautiful thing he had ever seen...I can't wait for them to go to prom!!! ;0)
Well...that's all for now...thank you for all your support and prayers...
Wednesday, May 20, 2009
Echo appointment
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...
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...
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.
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