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.
Friday, September 26, 2008
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
checkup
Ok, so Ethan's always been a good sleeper - from the time he was about 2 months old until 2 weeks ago, he's never had a problem sleeping through the night. Starting the day we went for his 1 year checkup, he's started waking up every night - exactly 8 hours after going to sleep - screaming his little lungs out for 2 hours straight then falling back asleep for a couple more hours before getting up for the day. So now I'm back to being a sleep-deprived momma again. I'd rather have the sleep-deprived days of taking care of a newborn than this any day though. At least when he was a newborn, I knew it was just hunger and could feed him and he'd fall right back asleep. But with constant screaming with nothing working to console him is downright exhausting and frustrating. I gave in and finally took him to the pediatrician yesterday (of course the night before I went - Monday night - he chose to sleep through the night!).
The doctor looked Ethan over and diagnosed him as teething - why didn't I think of that! But with a heart baby, you don't want to take any unusual behavior lightly. The doc pointed out to me that he's getting ready to cut 4 more teeth - 2 on the top and 2 on the bottom right next to the center 4 top & bottom teeth he already has! So she told me to give him Children's Tylenol or Motrin right before bed, which should last him through the night. So before bed last night, I gave him a dose and prayed for a good night sleep but to my dismay, he woke up 8 hours after bedtime, so I gave him more Tylenol but he continued his pattern of screaming again for 2 straight hours. I'm just glad that teething doesn't last forever!
Tomorrow we go to the cardiologist for a checkup. If everything goes well, we hopefully won't have to go back for 6 months this time instead of our usual 3 month checkups!
The doctor looked Ethan over and diagnosed him as teething - why didn't I think of that! But with a heart baby, you don't want to take any unusual behavior lightly. The doc pointed out to me that he's getting ready to cut 4 more teeth - 2 on the top and 2 on the bottom right next to the center 4 top & bottom teeth he already has! So she told me to give him Children's Tylenol or Motrin right before bed, which should last him through the night. So before bed last night, I gave him a dose and prayed for a good night sleep but to my dismay, he woke up 8 hours after bedtime, so I gave him more Tylenol but he continued his pattern of screaming again for 2 straight hours. I'm just glad that teething doesn't last forever!
Tomorrow we go to the cardiologist for a checkup. If everything goes well, we hopefully won't have to go back for 6 months this time instead of our usual 3 month checkups!
Wednesday, September 10, 2008
1 year checkup
Dan and I took Ethan for his 1 year checkup on Monday morning (yes, I know he'll be 13 months tomorrow but that was the only appointment they had when I called the week of his birthday last month). Everything looked good! They said he passed his developmental milestones (which is encouraging since not all heart babies are on track developmentally due to their condition plus extended time spent cooped up in a hospital bed). He weighed in at 21 lb. 12 3/4 oz. He is in the 50% range for head circumference and weight and in the 90% range for length! What a tall boy we've got!
Ethan had his finger pricked to test his blood for lead levels and also anemia (standard 12mo. checkup test - nothing related to his heart defect). All those levels came back normal! Then he had to get 4 vaccines, one of which (MMR) the doc said could cause a fever spike of 103 in about 10 days so we'll be watching out for that. So far he seems to be doing fine from the shots, although he did wak up about 3 hours early yesterday morning (around 5am) whining and crying a little so I gave him some extended cuddle time and a little Tylenol and he was able to settle back down and nap from 7-9am, until it was time for us to leave to go to church for MOPS.
Speaking of MOPS (Mothers Of Preschoolers), I'm excited about getting together bi-monthly with other moms of young kids (really birth-kindergarten age) and build some new friendships and let Ethan get a chance to socialize in the nursery. Hopefully I'll be able to attend all fall/winter without having to keep him out of the nursery too much.
I really debated about whether or not to get involved since we're getting ready to hit cold/flu/RSV season in a few months. Even though Ethan's been staying so healthy and doesn't have his final surgery for a few more years, we still have to be extra cautious during the cold/flu and especially RSV season. Ethan's pediatrician wants us to get the RSV antibody shots again this year but we just don't think we're going to be able to afford it. Based on our most recent medical bills from Ethan's hospital for his 2nd surgery and the bills for the RSV shots, Ethan's surgery and hospital stay was a lot cheaper than the shots - INSANE! I don't like to talk about finances on here much (although it is a real part of life and we do help teach a finance course at our church) so I won't say anything else about this issue. Just please pray for wisdom for us as we decide what to do. The pediatrician said that he was even surprised at our out of pocket costs (even with the help of insurance) and said that they'd talk to their insurance rep to make sure that everythings getting filed properly so hopefully it won't cost as much this time. But even if we took insurance out of the picture, the cost of the RSV shots was still much higher than the surgery/hospital stay!
Well enough rambling for today. Thanks for checking in on us and continuing to think about and pray for us. We continue to praise God daily for keeping Ethan's heart functioning so well and for all the days He's given us with our sweet little boy. We go back to the cardiologist in about 2 weeks for another checkup and we just pray the docs continue to be amazed at Ethan's good health. Well I hear Ethan screaming in the other room so I better go check on him!
Ethan had his finger pricked to test his blood for lead levels and also anemia (standard 12mo. checkup test - nothing related to his heart defect). All those levels came back normal! Then he had to get 4 vaccines, one of which (MMR) the doc said could cause a fever spike of 103 in about 10 days so we'll be watching out for that. So far he seems to be doing fine from the shots, although he did wak up about 3 hours early yesterday morning (around 5am) whining and crying a little so I gave him some extended cuddle time and a little Tylenol and he was able to settle back down and nap from 7-9am, until it was time for us to leave to go to church for MOPS.
Speaking of MOPS (Mothers Of Preschoolers), I'm excited about getting together bi-monthly with other moms of young kids (really birth-kindergarten age) and build some new friendships and let Ethan get a chance to socialize in the nursery. Hopefully I'll be able to attend all fall/winter without having to keep him out of the nursery too much.
I really debated about whether or not to get involved since we're getting ready to hit cold/flu/RSV season in a few months. Even though Ethan's been staying so healthy and doesn't have his final surgery for a few more years, we still have to be extra cautious during the cold/flu and especially RSV season. Ethan's pediatrician wants us to get the RSV antibody shots again this year but we just don't think we're going to be able to afford it. Based on our most recent medical bills from Ethan's hospital for his 2nd surgery and the bills for the RSV shots, Ethan's surgery and hospital stay was a lot cheaper than the shots - INSANE! I don't like to talk about finances on here much (although it is a real part of life and we do help teach a finance course at our church) so I won't say anything else about this issue. Just please pray for wisdom for us as we decide what to do. The pediatrician said that he was even surprised at our out of pocket costs (even with the help of insurance) and said that they'd talk to their insurance rep to make sure that everythings getting filed properly so hopefully it won't cost as much this time. But even if we took insurance out of the picture, the cost of the RSV shots was still much higher than the surgery/hospital stay!
Well enough rambling for today. Thanks for checking in on us and continuing to think about and pray for us. We continue to praise God daily for keeping Ethan's heart functioning so well and for all the days He's given us with our sweet little boy. We go back to the cardiologist in about 2 weeks for another checkup and we just pray the docs continue to be amazed at Ethan's good health. Well I hear Ethan screaming in the other room so I better go check on him!
Monday, August 11, 2008
Birthday pictures!
Ok, as promised, here are some pictures from yesterday's festivities. Ethan and all his guests seemed to have a great time celebrating together!
The Birthday Boy after he woke up!
On the move!
Mommy decoating the Elmo birthday cake!
Party decorations!
Ethan surrounded by all his presents!
Another birthday gift - from Aunt Jessica and Uncle Brandon!
Elmo birthday cake !
Digging into the cake with Mimi and Pop-Pop's help!
Did we mention it is Cake Time!
Yummy cake!
August 11, 2008 - 1 Year Old!
August 11 - we made it! I remember last August as this date quickly approached (which, by the way, was Ethan's due date!) that I had no clue what the future would hold for us and if we'd even have the opportunity to be celebrating Ethan's first birthday. It is with great joy and humble gratitude that we thank our Heavenly Father for allowing us to be able to celebrate this first year of Ethan's life!
We had a great family cookout and birthday party for our little guy yesterday. Ethan was able to have both sets of grandparents, one of his great-grandma's, all his aunts and uncles and cousins in attendance for the celebration. It's so nice to have all our immediate family so close by! Ethan had a great time chasing balloons, eating cake (he ate more than his cousins which are 3 & 5!) and helping open presents!
You'll have to check back in later today for pictures, I'll get those loaded during his nap time. Right now, it's all I can do to keep his little fingers off the laptop as I try to type this!
As always, thanks for your continued prayers for our sweet son. We deeply appreciate them and we're very humbled that God has been so gracious to us to let our son turn out so healthy.
We had a great family cookout and birthday party for our little guy yesterday. Ethan was able to have both sets of grandparents, one of his great-grandma's, all his aunts and uncles and cousins in attendance for the celebration. It's so nice to have all our immediate family so close by! Ethan had a great time chasing balloons, eating cake (he ate more than his cousins which are 3 & 5!) and helping open presents!
You'll have to check back in later today for pictures, I'll get those loaded during his nap time. Right now, it's all I can do to keep his little fingers off the laptop as I try to type this!
As always, thanks for your continued prayers for our sweet son. We deeply appreciate them and we're very humbled that God has been so gracious to us to let our son turn out so healthy.
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!
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