I really truly have on my to-do list for today to add the promised pictures and update on Ethan. But before I do that, I really feel it's more appropriate to start with an update on Ethan's heart buddy, Lindsay, that I mentioned in the last post.
Lindsay was right on track with recovery from her heart transplant and they were even starting to make plans to head home in a couple of weeks but things took a turn for the worse and Lindsay is now back in ICU (instead of moderate care) and on ECMO (life support). Please keep "The Princess" Lindsay and her family in your prayers. It turns out that Lindsay aspirated (something that's common to heart babies after surgery - Ethan struggled with this but not to this extreme), which caused her to have a seizure. She is stable at this point and the medical team, as well as Lindsay's family, think that staying on ECMO for a few days will help her body have some time to rest to recover from this event. For more information, please check Lindsay's blog.
OK, time to go edit pictures so I can get working on putting together our long-overdue beach trip post!
Showing posts with label HLHS friends. Show all posts
Showing posts with label HLHS friends. Show all posts
Tuesday, June 16, 2009
Thursday, June 11, 2009
22 months!
I can't believe it's been 5 weeks since I last updated. Fortunately, I can safely say that we have all been healthy since our last post! So much has happened since then so I will probably post several updates to keep from having just one super long update.
First, I'll start with the most current news. Our little guy is not so little any more! Today he turned 22 months old. He's weighing in at a whopping 27 pounds right now and I think he's also going through a growth spurt, eating us out of house and home! Hard to believe that he will be turning 2 in 2 more months!
And also Ethan's crush (he gets this glazed over, goofy grin every time he sees her picture), princess Lindsay, turns 1 year old today! Happy Birthday princess Lindsay! For those of you that may not remember Lindsay, she has the same heart condition as Ethan (HLHS). Her first surgery went well, her second surgery didn't and she ended up on the transplant list. She has been in the hospital since October (her second surgery) awaiting her perfect new heart and last Friday she got it! You can read more here.
And in other news, my baby sister, Jennifer, just left home yesterday for her 6 week mission trip/school internship in Turkey. I have included her blog link in the side bar for those of you who want to follow her.
Well, that's enough for right now. Updates and pictures to follow in another post about our family beach trip and Jennifer's college graduation.
First, I'll start with the most current news. Our little guy is not so little any more! Today he turned 22 months old. He's weighing in at a whopping 27 pounds right now and I think he's also going through a growth spurt, eating us out of house and home! Hard to believe that he will be turning 2 in 2 more months!
And also Ethan's crush (he gets this glazed over, goofy grin every time he sees her picture), princess Lindsay, turns 1 year old today! Happy Birthday princess Lindsay! For those of you that may not remember Lindsay, she has the same heart condition as Ethan (HLHS). Her first surgery went well, her second surgery didn't and she ended up on the transplant list. She has been in the hospital since October (her second surgery) awaiting her perfect new heart and last Friday she got it! You can read more here.
And in other news, my baby sister, Jennifer, just left home yesterday for her 6 week mission trip/school internship in Turkey. I have included her blog link in the side bar for those of you who want to follow her.
Well, that's enough for right now. Updates and pictures to follow in another post about our family beach trip and Jennifer's college graduation.
Wednesday, October 1, 2008
Baby Gracie update
Thank you to everyone who has been praying for baby Gracie after hearing about it on my site (or theirs). It is with a heavy heart to post that Gracie went home to be with the Lord at 8:08 this morning. She was a strong little fighter for the 7 months here on Earth and God finally decided to call her home to heal her heart for eternity. Please continue to lift up her parents, Todd & Amanda, as well as her 3 year old brother, Haddon at this time.
Tuesday, September 30, 2008
Update on Baby Gracie
Baby Gracie came through her Glenn surgery and is in recovery in the PICU at Duke. The first 24-48 hours are always the most critical for heart patients so please continue to keep Gracie and her parents, Todd & Amanda in your prayers. Even though the 2nd heart surgery is now behind them, they still have quite an upward hill to climb before she's completely stable and out of the woods. Nothing ever seems to be easy or by the books for the heart babies I've found. Keep checking their blog (www.caringbridge.org/visit/graciejeanlockyer) for more detailed updates.
As for our family, Dan just left town for work and won't be back until Friday night so I just hope to not go too stir-crazy being home alone with Ethan and the dog all day. Fortunately, I got to spend most of the day out of the house with meetings at church so my mom got to watch Ethan this morning and Dan's mom watched him tonight. Tomorrow is a slow day with not much planned but our neighbor's little boy across the street just got a drum set and he spent all afternoon (the 3+ hours I was actually home today) playing with his new drums and driving the dog crazy so we may have to get out just to escape the noise tomorrow if the drum practice continues! LOL
As always, thanks for checking in on us and for lifting little Gracie up in prayer!
As for our family, Dan just left town for work and won't be back until Friday night so I just hope to not go too stir-crazy being home alone with Ethan and the dog all day. Fortunately, I got to spend most of the day out of the house with meetings at church so my mom got to watch Ethan this morning and Dan's mom watched him tonight. Tomorrow is a slow day with not much planned but our neighbor's little boy across the street just got a drum set and he spent all afternoon (the 3+ hours I was actually home today) playing with his new drums and driving the dog crazy so we may have to get out just to escape the noise tomorrow if the drum practice continues! LOL
As always, thanks for checking in on us and for lifting little Gracie up in prayer!
Urgent Prayer Request
Remember Baby Gracie that I mentioned a few days ago? Well, her blog was just update last night after I went to bed, saying that since she's doing pretty well right now and the OR's available, they feel that she'd have a better chance of survival from her Glenn surgery (same surgery Ethan had back in January) if they go ahead and do it at 6:30 this morning! Please join me in prayer for her and her family as they await the outcome of the surgery, which most likely won't be over until at least noon. I've linked to her blog on the side of this page, along with all the other heart babies I've found so you can follow along, or you can just visit the site directly from this link: www.caringbridge.org/visit/graciejeanlockyer.
Friday, September 26, 2008
Cardiologist Appointment
Yesterday was our quarterly cardiologist checkup. Despite the drought we've been in for over a year now, it never fails to rain the day we go to see Ethan's cardiologist and yesterday was no exception! Fortunately Ethan didn't seem to mind the cold drizzly rain as we walked from the car, through the parking lot, and into WakeMed's Heart Center. Ethan usually doesn't mind going for his cardiology checkups and behaves very well but yesterday he was just as fussy as he could be! Dr. Robinson said that all his patients were fussy yesterday and we thought it might've been the weather.
Ethan's fussiness began the second I put him on the exam table and undressed him and had to make him lay down so the nurse could measure his length. He calmed down for a few minutes while we went to the next room over to get weighed but then started fussing again when I had to hold him while the nurse measured his pulse ox. He was so wiggly that we weren't getting a very good reading at first - hovering around 76% but then I started singing his favorite song, "If You're Happy And You Know It" and he calmed down and we were able to get his normal pulse ox reading of 82%. Next, Dr. Robinson tried to listen to his heart and lungs with his stethoscope but Ethan was crying again so much that it was hard to get a good listen. From what he did hear, Dr. R did say everything sounded good and he wanted to get an echo done if Ethan would cooperate.
The echo technician was very sweet and patient with us. Usually this is Ethan's favorite part of the visit and he stays very still but he's at the age now where he doesn't like to stay on his back very long - he'd rather be sitting up playing or crawling around. The tech even brought in a TV/VCR for Ethan to watch an Elmo movie but that didn't last very long and he was squirmy and fussing again. We must've have a pretty skilled tech to do Ethan's echo because even with him not cooperating, she was still able to get a few clear pictures of his heart. The RV (Right Ventricle) function looks great with no leakage. Unfortunately they didn't really get a good look at anything else like the aortic valve or the pulmonary arteries (the ones that were worked on during the 2nd surgery) but Dr. R was confident enough with what he did see that he doesn't need to see us back for another 4 months - the end of January!
Thanks as always for checking in on us and continuing to keep us in your thoughts and prayers. We are so thankful for all the support but more importantly for the good health that God has blessed Ethan with over the last year. Please continue to also keep baby Gracie in your prayers as her parents patiently wait for her 2nd surgery next Thursday and also baby Lindsay is having her heart cath today in preparation for her 2nd surgery probably next week as well.
Ethan's fussiness began the second I put him on the exam table and undressed him and had to make him lay down so the nurse could measure his length. He calmed down for a few minutes while we went to the next room over to get weighed but then started fussing again when I had to hold him while the nurse measured his pulse ox. He was so wiggly that we weren't getting a very good reading at first - hovering around 76% but then I started singing his favorite song, "If You're Happy And You Know It" and he calmed down and we were able to get his normal pulse ox reading of 82%. Next, Dr. Robinson tried to listen to his heart and lungs with his stethoscope but Ethan was crying again so much that it was hard to get a good listen. From what he did hear, Dr. R did say everything sounded good and he wanted to get an echo done if Ethan would cooperate.
The echo technician was very sweet and patient with us. Usually this is Ethan's favorite part of the visit and he stays very still but he's at the age now where he doesn't like to stay on his back very long - he'd rather be sitting up playing or crawling around. The tech even brought in a TV/VCR for Ethan to watch an Elmo movie but that didn't last very long and he was squirmy and fussing again. We must've have a pretty skilled tech to do Ethan's echo because even with him not cooperating, she was still able to get a few clear pictures of his heart. The RV (Right Ventricle) function looks great with no leakage. Unfortunately they didn't really get a good look at anything else like the aortic valve or the pulmonary arteries (the ones that were worked on during the 2nd surgery) but Dr. R was confident enough with what he did see that he doesn't need to see us back for another 4 months - the end of January!
Thanks as always for checking in on us and continuing to keep us in your thoughts and prayers. We are so thankful for all the support but more importantly for the good health that God has blessed Ethan with over the last year. Please continue to also keep baby Gracie in your prayers as her parents patiently wait for her 2nd surgery next Thursday and also baby Lindsay is having her heart cath today in preparation for her 2nd surgery probably next week as well.
Wednesday, September 24, 2008
Special prayer request
This is a somewhat urgent special prayer request for another HLHS baby I recently learned about. Her name is Gracie Jean Lockyer. She is 6 months old and awaiting her 2nd heart surgery - the Glenn. She's had a lot of complications so far in her little life and after her parents met with her doctors today, they said that in her current condition, she only has a 10% chance of surviving from the surgery. To put that in perspective, we were told with Ethan that he had a 75-85% survival rate with his Glenn surgery because he was in optimal health at the time. The Glenn surgery has been scheduled for next Thursday, Oct. 2. Given all this news, please pray for her parents, Todd & Amanda as they are faced with the bleak reality that if God chooses not to work a miracle (which we all know He can do and has already done multiple times in Gracie's life after having coded multiple times now) this time around, they may only have 8 days left with their little girl. Please join me and invite everyone you know to join in praying for this sweet little heart baby! To learn more, please visit their blog at http://www.caringbridge.org/visit/graciejeanlockyer
Tuesday, August 5, 2008
Less than a week
Hey everyone! Sorry for having not posted an update in so long. Things have just been going so well in the Miles' household that there really hasn't been anything to upate. So in case you're wondering what's happening in less than a week... Ethan will be turning 1!
It's hard to believe it's already August again! Looking back on the past year, we are so thankful to celebrate such a big milestone in our son's life! Ever since Ethan was born last August 11, we have done our best to make the most out of every day and not take a single day for granted. For our first heart family friend, today, August 5, marks the one year anniversary of Isaac's death here on earth but the start of eternal life in Heaven with Jesus. I remember this time last year how sad I was for this family's loss and a little uncertain about my own son's future. Baby Isaac's funeral was the same day as my scheduled labor induction so it was a very emotional time for me.
Also in the last year, we've known of two other HLHS babies to pass away. Even though the other 2 families are out of state and we had never met them, it was still a hard time for us as we grieved with them. We (at least I-Julie) have felt a bit of "survivor guilt" over the loss of these other 2 heart babies - thankful that Ethan has done so well yet wondering why God has spared our child and not theirs. They all have tons of people praying for them, just like we have tons praying for Ethan. We continue to lift them up in prayer and also continue to praise God each day for Ethan's continued good health. God has really given him the strength to press on and to be a healthy little boy with no other complications and to that, all I can say is "to God be all the glory forever and ever, AMEN!".
Oh, and by the way, Ethan finally cut one of his top teeth over the weekend! So now he's got 3 teeth. He also had his first little fall that resulted in a little blood on mommy's shirt from somewhere inside his mouth. Nothing that a little Italian Ice couldn't fix though! Were it not for the tradition of having a birthday cake, I think Ethan would be fine just having some Rita's Italian Ice for his birthday - that kid is hooked! So I think we'll have a little as an appetizer then save the cake and ice cream for dessert for the "big people" (all our families) at his birthday party!
Well thanks again for checking in on us, we promise to not wait so long until our next post!
It's hard to believe it's already August again! Looking back on the past year, we are so thankful to celebrate such a big milestone in our son's life! Ever since Ethan was born last August 11, we have done our best to make the most out of every day and not take a single day for granted. For our first heart family friend, today, August 5, marks the one year anniversary of Isaac's death here on earth but the start of eternal life in Heaven with Jesus. I remember this time last year how sad I was for this family's loss and a little uncertain about my own son's future. Baby Isaac's funeral was the same day as my scheduled labor induction so it was a very emotional time for me.
Also in the last year, we've known of two other HLHS babies to pass away. Even though the other 2 families are out of state and we had never met them, it was still a hard time for us as we grieved with them. We (at least I-Julie) have felt a bit of "survivor guilt" over the loss of these other 2 heart babies - thankful that Ethan has done so well yet wondering why God has spared our child and not theirs. They all have tons of people praying for them, just like we have tons praying for Ethan. We continue to lift them up in prayer and also continue to praise God each day for Ethan's continued good health. God has really given him the strength to press on and to be a healthy little boy with no other complications and to that, all I can say is "to God be all the glory forever and ever, AMEN!".
Oh, and by the way, Ethan finally cut one of his top teeth over the weekend! So now he's got 3 teeth. He also had his first little fall that resulted in a little blood on mommy's shirt from somewhere inside his mouth. Nothing that a little Italian Ice couldn't fix though! Were it not for the tradition of having a birthday cake, I think Ethan would be fine just having some Rita's Italian Ice for his birthday - that kid is hooked! So I think we'll have a little as an appetizer then save the cake and ice cream for dessert for the "big people" (all our families) at his birthday party!
Well thanks again for checking in on us, we promise to not wait so long until our next post!
Wednesday, April 16, 2008
First tooth!
Our suspicions were correct, Ethan cut his first tooth on Saturday! I thought I saw it starting to break through but once he grabbed a hold of my finger and jammed it in his mouth and bit down, I felt it and knew for sure! We keep trying to get a good look at it but everytime we try to open his mouth, he sticks out his tongue so we have a hard time seeing it.
In other news, Dan's out of town for work all week. This is his first time to be away since Ethan was born. Fortunately, his company only makes him do overnight travel once a year (for this conference) so this will not be a common occurence. I'm having lots of fun getting Ethan all to my self this week, yet, at the same time trying not to kill our dog (a mini dachsund) since she doesn't have Dan around to play with her at night!
I'm doing my best to stay busy and get out of the house some this week while Dan's gone before I go stir-crazy! Tomorrow, we go over to UNC Hospital to visit one of our heart buddies - Shelby. She's the little girl that we saw a couple of weeks ago for her first birthday party. You can keep her in your prayers as she is over there to get her tear ducts unblocked (eye surgery). I'll give an update when I have one.
Well thanks as always for checking in on us and our crazy life! We are so blessed to have so many people who care about us and are praying for us. God has been so good to us through all your prayers and has kept Ethan as healthy (heart and otherwise) as possible and we continue to praise God daily for his goodness to us. To God be all the Glory!
In other news, Dan's out of town for work all week. This is his first time to be away since Ethan was born. Fortunately, his company only makes him do overnight travel once a year (for this conference) so this will not be a common occurence. I'm having lots of fun getting Ethan all to my self this week, yet, at the same time trying not to kill our dog (a mini dachsund) since she doesn't have Dan around to play with her at night!
I'm doing my best to stay busy and get out of the house some this week while Dan's gone before I go stir-crazy! Tomorrow, we go over to UNC Hospital to visit one of our heart buddies - Shelby. She's the little girl that we saw a couple of weeks ago for her first birthday party. You can keep her in your prayers as she is over there to get her tear ducts unblocked (eye surgery). I'll give an update when I have one.
Well thanks as always for checking in on us and our crazy life! We are so blessed to have so many people who care about us and are praying for us. God has been so good to us through all your prayers and has kept Ethan as healthy (heart and otherwise) as possible and we continue to praise God daily for his goodness to us. To God be all the Glory!
Monday, April 7, 2008
last RSV shot!
I nearly forgot about the appointment until about 30 minutes beforehand, but we did make it to the peds for Ethan's last RSV shot of the season! We won't have to do this again until October or November so that will be a nice break! Ethan's weight is looking good, he weighed in at 18lb. 11 1/4 oz. (8.5 kg) today so I'm pleased!
As always, thanks for checking in on us. Things are going so well that we haven't had too much to report lately. We praise God for Ethan's continued good health and continue to pray for comfort and strength for baby Annabelle's family as they grieve her loss. We also ask for prayer for baby Julianne as she goes for her swallow study tomorrow. She's been on a feeding tube her entire life and if she doesn't pass, then the doctors are talking about surgically placing a G-tube button on her stomach for feeding so she doesn't have to have a tube down her nose any more. Please pray God's will to be accomplished for her tomorrow. I know her parents desperately want her to pass but, more importantly, are trusting God for whatever the outcome!
As always, thanks for checking in on us. Things are going so well that we haven't had too much to report lately. We praise God for Ethan's continued good health and continue to pray for comfort and strength for baby Annabelle's family as they grieve her loss. We also ask for prayer for baby Julianne as she goes for her swallow study tomorrow. She's been on a feeding tube her entire life and if she doesn't pass, then the doctors are talking about surgically placing a G-tube button on her stomach for feeding so she doesn't have to have a tube down her nose any more. Please pray God's will to be accomplished for her tomorrow. I know her parents desperately want her to pass but, more importantly, are trusting God for whatever the outcome!
Thursday, March 27, 2008
Prayer for Annabelle's family
Please be in prayer for Annabelle's family. This morning Annabelle went home to be with the Lord. I can't even begin to imagine what it is like to lose a child and I know they are hurting but are also rejoicing in the fact that they will again one day see their sweet baby girl when they get to Heaven.
Sunday, March 23, 2008
Happy Easter!
Happy Easter everyone! We hope you all have had a nice day and hopefully got to spend some quality time as a family on this joyous holiday as we remember how Jesus gave His life on a cross so we may have life with Him eternally in Heaven one day.
Each day of our journey with Ethan has made us realize more and more just how precious life is, and how we should not take any day for granted because we never know when it will be our last. We had the privilege of going down to the coast this weekend to celebrate the life and First Birthday of another little girl with Ethan's same heart condition of HLHS. It's hard to believe that "baby Shelby" is now a year old. She was the second case of HLHS that we had ever encountered, and the first girl we'd met with this condition.
We've had the pleasure to get to see this family on several occasions throughout the past year and Shelby's mom is the one who is trying to help establish a family support group for pediatric heart families at UNC and possibly other hospitals in North Carolina (although the other hospitals already have their own system in place). What a joy and encouragement to see this little girl come as far as she has, especially with her parents not having the knowledge of her heart condition prior to her birth. And since finding her, we also feel privileged to keep finding more and more families with HLHS babies as well, even though none of them live in state like Shelby.
Thank you everyone for your continued prayers and support of our family, as always. Time to go put my sleeping baby, husband, and dog to bed since they're all snoozing on the couch together as I type!
Each day of our journey with Ethan has made us realize more and more just how precious life is, and how we should not take any day for granted because we never know when it will be our last. We had the privilege of going down to the coast this weekend to celebrate the life and First Birthday of another little girl with Ethan's same heart condition of HLHS. It's hard to believe that "baby Shelby" is now a year old. She was the second case of HLHS that we had ever encountered, and the first girl we'd met with this condition.
We've had the pleasure to get to see this family on several occasions throughout the past year and Shelby's mom is the one who is trying to help establish a family support group for pediatric heart families at UNC and possibly other hospitals in North Carolina (although the other hospitals already have their own system in place). What a joy and encouragement to see this little girl come as far as she has, especially with her parents not having the knowledge of her heart condition prior to her birth. And since finding her, we also feel privileged to keep finding more and more families with HLHS babies as well, even though none of them live in state like Shelby.
Thank you everyone for your continued prayers and support of our family, as always. Time to go put my sleeping baby, husband, and dog to bed since they're all snoozing on the couch together as I type!
Thursday, March 20, 2008
more updates
Several updates to report since our last post. First, Julianne is out of the hospital from her 2nd heart surgery and doing great! She got released yesterday and will stay in town near the hospital for the next several days with her parents, just to make sure everything continues to go well for her. If there are no complications, they will be headed home early next week!
Second, Ethan's still doing well with his heart function! We went to the cardiologist this morning and Dr. Robinson said that if Ethan didn't have the scar on his chest to remind us of the surgeries, you wouldn't know anything is wrong with his heart by listening to it! That news made me very excited! Dr. Robinson also told us to stop giving Ethan Lasix because his lungs sound clear, so that means we're medicine-free for the first time!
Third, today is Shelby Glover's first birthday! Shelby is another HLHS baby that was treated at UNC. They live about 2 hours east of us in Wilmington and we're looking forward to going down there to celebrate her birthday party this weekend! Shelby's parents did not know ahead of time about her heart condition so they were in for a real scare a couple of days after Shelby was born and they were getting ready to take her home and she started turning blue. Shelby was rushed to UNC for her HLHS diagnosis and surgery. We have continued to stay in touch with them since we first met last summer right after Ethan was born and recovering from his first surgery. A few weeks later, we met up with them again for Shelby's second surgery. Having a first birthday is a big milestone for all parents, but you never realize how big of a milestone until you've had a child that you weren't sure would even live to see their first birthday. God is so good to this family and ours as well.
Shelby's mom has also been real active in trying to establish a family support group for pediatric cardiology patients at UNC Hospital since it's the only one in the state without a formal support group. In my spare time, I've been trying to help out whenever I can too. The UNC Pediatric Cardiology Dept. has an annual reunion for all it's heart patients so we're hoping to really have our support group in place by the time of the reunion so that we can spread the word to all the families out there.
Shelby's parents are also on the Parent Advisory Panel for the state-wide cardiology nurses conference being held at UNC this May. You may remember me mentioning this back in January when we were first invited to be a part of this 4-family parent panel. We are looking forward to this opportunity to share how God has forever changed our life by giving us our sweet boy and protecting him through his heart surgeries and treatment at UNC!
Fourth, Ethan had his first playdate yesterday! We went over to a friend's house who has a little girl about a month older than Ethan. This was her first playdate with a boy so it was fun to watch them interact while I got to talk with the other mom. Now that we're able to leave our house more, I look forward to taking Ethan out for other playdates and activities for Ethan to interact with other kids.
Well I think that's all the updates for now. As always, thanks for checking in on us and for your continued prayers for Ethan's health. God is so good to us! Have a happy Easter everyone!
Second, Ethan's still doing well with his heart function! We went to the cardiologist this morning and Dr. Robinson said that if Ethan didn't have the scar on his chest to remind us of the surgeries, you wouldn't know anything is wrong with his heart by listening to it! That news made me very excited! Dr. Robinson also told us to stop giving Ethan Lasix because his lungs sound clear, so that means we're medicine-free for the first time!
Third, today is Shelby Glover's first birthday! Shelby is another HLHS baby that was treated at UNC. They live about 2 hours east of us in Wilmington and we're looking forward to going down there to celebrate her birthday party this weekend! Shelby's parents did not know ahead of time about her heart condition so they were in for a real scare a couple of days after Shelby was born and they were getting ready to take her home and she started turning blue. Shelby was rushed to UNC for her HLHS diagnosis and surgery. We have continued to stay in touch with them since we first met last summer right after Ethan was born and recovering from his first surgery. A few weeks later, we met up with them again for Shelby's second surgery. Having a first birthday is a big milestone for all parents, but you never realize how big of a milestone until you've had a child that you weren't sure would even live to see their first birthday. God is so good to this family and ours as well.
Shelby's mom has also been real active in trying to establish a family support group for pediatric cardiology patients at UNC Hospital since it's the only one in the state without a formal support group. In my spare time, I've been trying to help out whenever I can too. The UNC Pediatric Cardiology Dept. has an annual reunion for all it's heart patients so we're hoping to really have our support group in place by the time of the reunion so that we can spread the word to all the families out there.
Shelby's parents are also on the Parent Advisory Panel for the state-wide cardiology nurses conference being held at UNC this May. You may remember me mentioning this back in January when we were first invited to be a part of this 4-family parent panel. We are looking forward to this opportunity to share how God has forever changed our life by giving us our sweet boy and protecting him through his heart surgeries and treatment at UNC!
Fourth, Ethan had his first playdate yesterday! We went over to a friend's house who has a little girl about a month older than Ethan. This was her first playdate with a boy so it was fun to watch them interact while I got to talk with the other mom. Now that we're able to leave our house more, I look forward to taking Ethan out for other playdates and activities for Ethan to interact with other kids.
Well I think that's all the updates for now. As always, thanks for checking in on us and for your continued prayers for Ethan's health. God is so good to us! Have a happy Easter everyone!
Thursday, March 13, 2008
Julianne's surgery update
Julianne's surgery is complete and things are looking better for her. The surgeon said that her poor ventricular heart function did not look any worse (that's been her main delay in having this surgery), in fact it might actually look a little better. He also told Julianne's parents that they left a permanent pacing wire in her heart in case they ever need to hook up a pacemaker, this allows them to do so without having to open her chest again!
I know this family appreciates your prayers, and could still use them because the first 24 hours post-op are very critical. Pray that she has minimal swelling, her upper body does well adjusting to the change in pressures with the blood being re-routed, and that the rest of her recovery goes smoothly so their family can get out of the hospital soon and head back home to New Orleans.
I know this family appreciates your prayers, and could still use them because the first 24 hours post-op are very critical. Pray that she has minimal swelling, her upper body does well adjusting to the change in pressures with the blood being re-routed, and that the rest of her recovery goes smoothly so their family can get out of the hospital soon and head back home to New Orleans.
Wednesday, March 12, 2008
Pray for Julianne
Julianne's surgery has been rescheduled for tomorrow, Thursday, 3-13-08. Praise the Lord that the doctors feel that Julianne is finally healthy and stable enough to have this surgery! Pray that all goes well and that the surgery will actually be able to take place this time so that the recovery process can begin and that she and her parents can go back home soon (the surgery's in Boston but they live in New Orleans). Also, of course, pray for the surgeons and everyone involved in the surgery that all will go smoothly and that they will have wisdom and skill and precision as they perform the surgery. I'll update again after surgery or if any changes occur beforehand. You can also visit their blog (see link on right) to see for yourself how she's doing. Thanks for your prayers for this other HLHS family!
Wednesday, March 5, 2008
Update on Julianne
Julianne had her MRI of her head and heart today. I won't go into all the details, you can read that on her blog. But long story short, the doctors have decided it is wisest to postpone surgery once again because the head MRI showed a stroke in her brain sometime in the last 2 weeks. Please continue to keep this family in your prayers. I'll let you know when they decide to reschedule the surgery for her heart.
Tuesday, March 4, 2008
Please Pray for Julianne
Having never known anyone with a heart defect, I have found "comfort" and friendship in getting to know several other families who also have babies with heart defects, especially Ethan's same heart defect - HLHS.
Tonight, I come to you requesting extra prayer for another HLHS family from New Orleans - Kent & Jessica Caperton and their baby Julianne (see link on the right to their blog). Julianne is about 6 weeks younger than Ethan and was supposed to have her second heart surgery on Feb. 21 in Boston, MA, but when they arrived a few days prior for pre-op and Julianne's heart cath, the doctors learned that she's having some poor heart function. Therefore, they have postponed her surgery until this Thursday, March 6th. I won't go into all the details here, you can read more on their blog, but long story short, this surgery will be more risky than usual because of her poor heart function so they are requesting as many prayers as possible. They have even requested/given permission for everyone reading their blog to pass the word along to be praying and even post a link on your own blog/website if you have one so we can get as many people praying as possible.
Please join me in prayer for Julianne and her family as her surgery quickly approaches. Pray for extra wisdom and skill for her doctors and surgeons and also peace for Jessica & Kent (Julianne's parents) as they await the results of the MRI and surgery. She will be having an MRI of her heart and head tomorrow to learn more about the poor function then surgery will be the next day. This family has already been so much with this little girl and this week seems to have been very difficult for them. They were very thoughtful to post a blog entry about Ethan last month when he had his 2nd surgery so now it's time for us to return the favor for them!
Tonight, I come to you requesting extra prayer for another HLHS family from New Orleans - Kent & Jessica Caperton and their baby Julianne (see link on the right to their blog). Julianne is about 6 weeks younger than Ethan and was supposed to have her second heart surgery on Feb. 21 in Boston, MA, but when they arrived a few days prior for pre-op and Julianne's heart cath, the doctors learned that she's having some poor heart function. Therefore, they have postponed her surgery until this Thursday, March 6th. I won't go into all the details here, you can read more on their blog, but long story short, this surgery will be more risky than usual because of her poor heart function so they are requesting as many prayers as possible. They have even requested/given permission for everyone reading their blog to pass the word along to be praying and even post a link on your own blog/website if you have one so we can get as many people praying as possible.
Please join me in prayer for Julianne and her family as her surgery quickly approaches. Pray for extra wisdom and skill for her doctors and surgeons and also peace for Jessica & Kent (Julianne's parents) as they await the results of the MRI and surgery. She will be having an MRI of her heart and head tomorrow to learn more about the poor function then surgery will be the next day. This family has already been so much with this little girl and this week seems to have been very difficult for them. They were very thoughtful to post a blog entry about Ethan last month when he had his 2nd surgery so now it's time for us to return the favor for them!
Wednesday, February 13, 2008
CHD Awareness Week
Most people think of this week/month as the month of Valentine's or Black History Month, but slightly less known, this is the week of Congenital (present at birth) Heart Defect (CHD) Awareness week - with tomorrow 2/14 being CHD Awareness Day. I never really knew much about heart defects until last March when Ethan was diagnosed with his heart defect - Hypoplastic Left Heart Syndrome.
To "celebrate" this week and help raise awareness, 2 of my friends (whose babies also have HLHS) are being interviewed by TV stations to share their own journey with raising a baby with a CHD. And here are some interesting facts about CHD's taken from a site to petition the media to raise more awareness. If you'd like to help by signing the petition, please visit this link: http://www.gopetition.com/online/16298.html
-Congenital heart defects are America's #1 birth defect.
-Nearly one of every 85 babies is born with a CHD in the US.
-Congenital heart defects are the Number 1 cause of birth defect related deaths.
-This year almost 40,000 babies will be born with a congenital heart defect in the US. 4,000 of them will not live to see their first birthday.
-91,000 life years are lost each year in this country due to congenital heart defects.
-The cost for inpatient surgery to repair congenital heart defects exceeds $2.2 billion a year.
-Congenital heart defects occur frequently and are often life threatening, yet research into them is grossly under funded.
-Only one penny of every dollar donated to the American Heart Association goes towards congenital heart defect research.
-Of every dollar the government spends on medical funding only a fraction of a penny is directed toward congenital heart defect research.
-More than 50% of all children born with a congenital heart defect will require at least one invasive surgery in their lifetime.
-There are 35 different types of congenital heart defects. Little is known about the cause of most them. There is not yet a cure for any of them.
-In the U.S., twice as many children die from congenital heart defects each year than from all forms of childhood cancer combined, yet funding for pediatric cancer research is five times higher than funding for CHD.
To "celebrate" this week and help raise awareness, 2 of my friends (whose babies also have HLHS) are being interviewed by TV stations to share their own journey with raising a baby with a CHD. And here are some interesting facts about CHD's taken from a site to petition the media to raise more awareness. If you'd like to help by signing the petition, please visit this link: http://www.gopetition.com/online/16298.html
-Congenital heart defects are America's #1 birth defect.
-Nearly one of every 85 babies is born with a CHD in the US.
-Congenital heart defects are the Number 1 cause of birth defect related deaths.
-This year almost 40,000 babies will be born with a congenital heart defect in the US. 4,000 of them will not live to see their first birthday.
-91,000 life years are lost each year in this country due to congenital heart defects.
-The cost for inpatient surgery to repair congenital heart defects exceeds $2.2 billion a year.
-Congenital heart defects occur frequently and are often life threatening, yet research into them is grossly under funded.
-Only one penny of every dollar donated to the American Heart Association goes towards congenital heart defect research.
-Of every dollar the government spends on medical funding only a fraction of a penny is directed toward congenital heart defect research.
-More than 50% of all children born with a congenital heart defect will require at least one invasive surgery in their lifetime.
-There are 35 different types of congenital heart defects. Little is known about the cause of most them. There is not yet a cure for any of them.
-In the U.S., twice as many children die from congenital heart defects each year than from all forms of childhood cancer combined, yet funding for pediatric cancer research is five times higher than funding for CHD.
Friday, February 1, 2008
Feeling Better!
Lots of updates today...
First, thanks for your prayers for our family this week as we get through our first family sickness together. I think we're finally all over the worst of our stomach bug! Ethan's even gotten back to a more "normal" eating schedule - meaning that he's not taking all 4 oz. of his bottle like he was pre-surgery, but at least he's eating 2.5-3 oz. every 3 hours. Since surgery, he would even skip feedings all together, and being sick this week, it's not surprising that he wasn't much into eating at all. I'm just glad that he's at least taking most of his bottle each time and not skipping any more feedings.
Second, Ethan does continue to wake up several times each night, although it's starting to get spaced out to every 3-4 hours, which is better than getting woken up every hour! As the stay-at-home parent, I am the one who gets up to check on Ethan every time he cries so my sleep has been quite interrupted this week, which I think has contributed to me being the slowest to recover from this stomach bug!
Third, Ethan got his chest tube sutures removed this week and his nurse at the pediatrician said he was still healing great with no sign of infection! He was such a brave boy and didn't squirm or even make the slightest sign of discomfort while the sutures came out!
Finally, thanks for your prayers for baby girl Annabelle Butcher! Her surgery went well today, but she definitely still needs prayers as the next 24-48 hours are very critical, as it's the time when the most swelling occurs. Again, you can follow her journey at their blog site: http://www.babygirlbutcher.blogspot.com/. We know just what they're going through - it's hard to believe we were in their shoes almost 6 months ago - boy does time fly by!
First, thanks for your prayers for our family this week as we get through our first family sickness together. I think we're finally all over the worst of our stomach bug! Ethan's even gotten back to a more "normal" eating schedule - meaning that he's not taking all 4 oz. of his bottle like he was pre-surgery, but at least he's eating 2.5-3 oz. every 3 hours. Since surgery, he would even skip feedings all together, and being sick this week, it's not surprising that he wasn't much into eating at all. I'm just glad that he's at least taking most of his bottle each time and not skipping any more feedings.
Second, Ethan does continue to wake up several times each night, although it's starting to get spaced out to every 3-4 hours, which is better than getting woken up every hour! As the stay-at-home parent, I am the one who gets up to check on Ethan every time he cries so my sleep has been quite interrupted this week, which I think has contributed to me being the slowest to recover from this stomach bug!
Third, Ethan got his chest tube sutures removed this week and his nurse at the pediatrician said he was still healing great with no sign of infection! He was such a brave boy and didn't squirm or even make the slightest sign of discomfort while the sutures came out!
Finally, thanks for your prayers for baby girl Annabelle Butcher! Her surgery went well today, but she definitely still needs prayers as the next 24-48 hours are very critical, as it's the time when the most swelling occurs. Again, you can follow her journey at their blog site: http://www.babygirlbutcher.blogspot.com/. We know just what they're going through - it's hard to believe we were in their shoes almost 6 months ago - boy does time fly by!
Thursday, January 31, 2008
Now we're all sick
Well it seems that it is indeed a stomach bug that Ethan caught and now he's passed it on to me and Dan as well. :-( Good news is that Ethan seems to be feeling better today, and so do I so hopefully it was just a 24 hour thing for me. Dan's still asleep so I don't know how he's feeling, but he had a rough night last night. Please pray that this passes quickly from our family so we can get back to trying to get Ethan back on schedule after surgery. Our discharge papers and other friends with HLHS babies have all said it often takes a few weeks to get back on schedule with feeding, sleeping and playing after this 2nd surgery.
Tomorrow morning Ethan goes back to the pediatrician to get his chest tube sutures removed, so we're excited about that! One more step towards his healing from the surgery! And next week we go for a checkup with Ethan's cardiologist to have an echo to make sure his heart is still functioning well from the surgery.
Tomorrow is also the day for baby girl Annabelle Butcher (http://www.babygirlbutcher.blogspot.com/) to have her first heart surgery for HLHS, so please be keeping her and her family and medical team in your prayers. Thanks!
Tomorrow morning Ethan goes back to the pediatrician to get his chest tube sutures removed, so we're excited about that! One more step towards his healing from the surgery! And next week we go for a checkup with Ethan's cardiologist to have an echo to make sure his heart is still functioning well from the surgery.
Tomorrow is also the day for baby girl Annabelle Butcher (http://www.babygirlbutcher.blogspot.com/) to have her first heart surgery for HLHS, so please be keeping her and her family and medical team in your prayers. Thanks!
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