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!
Tuesday, March 11, 2008
"For Tricia"
As I've mentioned before, I've really enjoyed getting to know other families who have also had extended hospital stays with their children. So far, I've only mentioned other "heart baby" families, but another family that I follow daily (well more realistically, several times a day!) is Nate, Tricia & Gwyneth. Tricia has Cystic Fibrosis and is in the hospital awaiting a double-lung transplant after having an emergency c-section 2 months ago to give birth to little Gwyneth at 24 weeks gestation. You can read more details about their story by visiting their website (see link on right). On Nate's website, he has encouraged all the blogging moms to make a list for Tricia about what they may often take for granted with their own kids and what they can't wait for Tricia to get to experience with her daughter Gwyneth once they are all back home together.
So Tricia and Nate, here's my list (my son's only 7 months TODAY so I'm still learning about motherhood!). I try to not take any of these things for granted because of all we've been through but also, knowing that you're going through even more and other heart babies we've known have also been through alot more than we've experienced too.
I can't wait for you to experience...
- feeding her a bottle for the first time
- finally coming home from the hospital (we were in the hospital for 28 days so I can only imagine the long wait you're experiencing)
- her baby dedication at church
- sleeping in the same room, getting woken up at every little peep she makes
- the first time she sleeps through the night (but you don't because you wonder if she's ok because she hasn't woken up at all)
- her first bath and all the water you get to clean up afterwards from all her splashing
- watching the grandparents enjoy spending time with her, making her laugh, get re-acquainted with diaper changes, bottle feeding, etc.
- hearing her laugh for the first time
- playing peek-a-boo
- being there to hug her and comfort her when she cries (especially after getting shots)
- eating baby food for the first time and watching the faces she makes
- having her spill your entire glass of ice cold water on both of you as you're out to eat (happened twice at the same meal last weekend!) then throwing up all over you as you walk to the car - all I could do was laugh - it was almost too crazy to be true, but at least I could be thankful that I had my baby in my life in the first place!
- family snuggle time on the couch (pets included!)
- shopping for bigger sized clothes and diapers because that means your baby is growing!
- watching her be entertained by the dog that's running all around the house
- watching her learn to sit up on her own
- all those toothless grins at you
- having "staring contests" & having her win every time because she can't take her eyes off you!
- having people comment on what a cute baby you have, but then cringing when they touch her hands and she immediately sticks them in her mouth - who knows what germs she just picked up and praying she doesn't get sick from it!
- watching her put EVERYTHING in her mouth and cringing about what germs she must be picking up (after been in the hospital and having to wash hands/use hand sanitizer so frequently, we quickly became germaphobes for the first time in our lives!)
- reading Bible stories and saying prayers together before bedtime
This list could go on and on but these are just a few of my favorites that I've experienced so far! Praise God for every moment we've had with our little guy and for all the many more we have yet to experience as we watch him grow - children really are a gift from God!
- and one more I just thought of... creating your own list once you have your own experiences!
So Tricia and Nate, here's my list (my son's only 7 months TODAY so I'm still learning about motherhood!). I try to not take any of these things for granted because of all we've been through but also, knowing that you're going through even more and other heart babies we've known have also been through alot more than we've experienced too.
I can't wait for you to experience...
- feeding her a bottle for the first time
- finally coming home from the hospital (we were in the hospital for 28 days so I can only imagine the long wait you're experiencing)
- her baby dedication at church
- sleeping in the same room, getting woken up at every little peep she makes
- the first time she sleeps through the night (but you don't because you wonder if she's ok because she hasn't woken up at all)
- her first bath and all the water you get to clean up afterwards from all her splashing
- watching the grandparents enjoy spending time with her, making her laugh, get re-acquainted with diaper changes, bottle feeding, etc.
- hearing her laugh for the first time
- playing peek-a-boo
- being there to hug her and comfort her when she cries (especially after getting shots)
- eating baby food for the first time and watching the faces she makes
- having her spill your entire glass of ice cold water on both of you as you're out to eat (happened twice at the same meal last weekend!) then throwing up all over you as you walk to the car - all I could do was laugh - it was almost too crazy to be true, but at least I could be thankful that I had my baby in my life in the first place!
- family snuggle time on the couch (pets included!)
- shopping for bigger sized clothes and diapers because that means your baby is growing!
- watching her be entertained by the dog that's running all around the house
- watching her learn to sit up on her own
- all those toothless grins at you
- having "staring contests" & having her win every time because she can't take her eyes off you!
- having people comment on what a cute baby you have, but then cringing when they touch her hands and she immediately sticks them in her mouth - who knows what germs she just picked up and praying she doesn't get sick from it!
- watching her put EVERYTHING in her mouth and cringing about what germs she must be picking up (after been in the hospital and having to wash hands/use hand sanitizer so frequently, we quickly became germaphobes for the first time in our lives!)
- reading Bible stories and saying prayers together before bedtime
This list could go on and on but these are just a few of my favorites that I've experienced so far! Praise God for every moment we've had with our little guy and for all the many more we have yet to experience as we watch him grow - children really are a gift from God!
- and one more I just thought of... creating your own list once you have your own experiences!
7 months old!
"They grow up so fast" is the phrase everyone says about kids, and boy is it true! I was even told this phrase yesterday as I was leaving the pediatrician office by a lady leaving the same time as me (no kids with her), she opened the office door for me as I carried Ethan out to the car. It's hard to believe that Ethan is officially 7 months old today! So much has happened, yet it still seems like just yesterday that I first held him in my arms.
Today also makes 7 weeks since Ethan's 2nd heart surgery - the Glenn. One more week and we can pick him up under the arms (not like I'm counting down or anything!). After visiting the pediatrician and hearing Ethan now weighs over 18 pounds, no wonder why I feel like I'm getting a workout by holding him and picking him up so much every day! We still have our home scale that we used to use for weekly weigh-ins but since we don't have to do it anymore, we have boxed it up and it's not worth getting back out so I was curious to see how much weight he'd gained since his 6 month checkup.
By the way, speaking of picking Ethan up so much, Dan hurt his arm/elbow about a week and a half ago from falling off his road bike and hasn't been able to pick him up very much. Dan doesn't think his arm is broken so he hasn't gone to the doctor yet, and it started feeling better towards the end of last week, but now it's hurting pretty bad again so he hopes to see the doctor about it today. You can keep him in your prayers that his arm gets better soon so he can have full use of it again (and get to hold Ethan more - he misses that!)
Today also makes 7 weeks since Ethan's 2nd heart surgery - the Glenn. One more week and we can pick him up under the arms (not like I'm counting down or anything!). After visiting the pediatrician and hearing Ethan now weighs over 18 pounds, no wonder why I feel like I'm getting a workout by holding him and picking him up so much every day! We still have our home scale that we used to use for weekly weigh-ins but since we don't have to do it anymore, we have boxed it up and it's not worth getting back out so I was curious to see how much weight he'd gained since his 6 month checkup.
By the way, speaking of picking Ethan up so much, Dan hurt his arm/elbow about a week and a half ago from falling off his road bike and hasn't been able to pick him up very much. Dan doesn't think his arm is broken so he hasn't gone to the doctor yet, and it started feeling better towards the end of last week, but now it's hurting pretty bad again so he hopes to see the doctor about it today. You can keep him in your prayers that his arm gets better soon so he can have full use of it again (and get to hold Ethan more - he misses that!)
Monday, March 10, 2008
Final RSV shot!
Today I took Ethan in to his pediatrician for his final RSV shot for this season...hopefully - the nurse said no more doses should be shipped to them, but that they'd call us if another dose arrives next month. We won't have to get those again until October! The nurse weighed him at 18lb. 2 3/4 oz. (8.23kg) so he seems to be growing well! The doctor made a comment to Ethan about how big he's growing and Ethan burst into tears - and he hadn't even received his shot yet - poor kid, LOL!
We go back to the cardiologist next Thursday, 3-20 for another followup. Hopefully we'll get approved to take Ethan off his one and only medicine - Lasix (diuretic) that helps drain off any extra fluids in his body from his 2nd heart surgery. Also by that time, we'll be able to start picking Ethan up under his arms once again, so we will finally be able to feel like things are back to normal as they felt right before his surgery. We continue to feel so blessed at how much God has taken care of Ethan and us during the past year since we first found out about Ethan's heart condition! Thank you all for your continued prayers and support to help us along on our journey!
We go back to the cardiologist next Thursday, 3-20 for another followup. Hopefully we'll get approved to take Ethan off his one and only medicine - Lasix (diuretic) that helps drain off any extra fluids in his body from his 2nd heart surgery. Also by that time, we'll be able to start picking Ethan up under his arms once again, so we will finally be able to feel like things are back to normal as they felt right before his surgery. We continue to feel so blessed at how much God has taken care of Ethan and us during the past year since we first found out about Ethan's heart condition! Thank you all for your continued prayers and support to help us along on our journey!
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.
Picture Time!
Ok, so I've been so busy lately that I haven't had much time to upload any pictures and our memory card was missing for a few days but I've finally got some new pictures to post!
Ethan on his first wagon ride - just hours before we left the hospital last month!
Ethan asleep on the couch - he buried himself under the red blanket
(don't worry, his face is peaking out so he can breathe - what a smart kid!)
Do we have a future musician in our family?
Ethan having fun in his swing with some of his new toys!
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!
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