Today was a big day for us. Three times a year, our church has a baby dedication and today was one of those days! For those of you not familiar with dedications, this is NOT a baptism or a christening - no water involved! This is simply a time to public acknowledge to God in front of our church congregation that we are thankful to have our sweet son and we give him back to God as a demonstration of our faith and dependence on God. In my heart, I (Julie) already gave Ethan back to God back in mid-March, the day after we found out his gender and his heart defect, but it was nice to be able to publicly announce it by being present on stage in the worship service today. God has given us a special blessing by being able to be parents, and especially to a child with a heart problem. There was no doubt in our mind that we could pass up this opportunity to publicly declare that we would raise Ethan in a godly home and commit to trusting him to the Lord's care (as we already have been doing - especially with the first surgery).
We originally wanted to wait until Ethan was a little older for the dedication, but we didn't want to wait too long so we chose to participate now instead of waiting until the next one (February and June are the other dates). We were afraid that if we waited until the next dedication, Ethan may be back in the hospital for his second stage of surgery and June was definitely too long to wait! Plus, in choosing to dedicate today, 2 of our other close friends dedicated their girls as well so that made it extra special because we got a "souvenir" color version of the black & white bulletin insert that shows pictures of all the babies in the dedication - this will be a special addition to Ethan's baby book if I ever get around to doing one...lol :-)
Ethan looked so cute in his little blue and tan plaid collar shirt and ivory corduroy overalls! We will hopefully get a picture upload soon of him all decked out!
Thanks once again for reading this blog and continuing to keep us 3 in your thoughts and prayers. We praise God for how well Ethan's been sleeping this week in his own crib and for the extra sleep that we've been able to get as a result. At least for the past week, I am glad to report that Ethan's slept no less than 5 1/2 hours at a time, with Friday night being the record of 9 1/2! He's been averaging 7 every night. He's still a sleepaholic and goes back to sleep after most feedings, especially early morning feedings, but it's nice to have a good night sleep once again!
Praises - we got our home scale this week, so we'll continue to go to the pediatrician for weekly weigh-ins for a few more weeks just for comparison of their scale vs. ours (I'll weigh him the same day of the week, within the same hour as his pediatrician visit until the cardiology nurse at UNC tells me that she's ok with our weight checks and we can convert to just using it so we don't have to go out so often with Ethan). Also praise for all the yummy meals people have been bringing us so I can continue to rest and focus on taking care of Ethan and adjusting to motherhood.
Prayer Requests - that Ethan continues to sleep through the night; that my mom continues to recover from her sickness of mono; that we will have wisdom and peace about me and Dan's job situations - whether I should return to work in January for the health benefits since Dan's company doesn't offer as affordable benefits as my company (our church) and what to do about private childcare if I do need to return to work; and that I can continue to decrease my stress load since stress has been aggravating my vertigo since Ethan's birth
Sunday, October 28, 2007
Tuesday, October 23, 2007
Sleepy baby
We've been blessed this week, Ethan's been pretty consistent in sleeping 6-8 hours in a row so I think for this week at least, we can officially say he's "sleeping through the night"! Every night last week, he averaged 5-6 hours in a row, Saturday night he slept 8 straight hours, Sunday he slept 6, and last night (Monday) he slept 7 1/2! Also, last night was Ethan's first night to not sleep in our room - he slept in his own crib and didn't fuss or cry at all when we put him in there (which is also a first!). Up until now, he's only had a couple of "naps" in his crib but he didn't even sleep because he just screamed and cried the entire time. I guess he was tired enough after staying awake at Mimi and Pop-Pop's house after dinner that he was ready to just sleep without putting up any kind of fuss! Well enough update, he's over in his bouncy seat screaming his little head off that I'm not giving him any attention - better go get him!
Sunday, October 21, 2007
Sunday sermon reflection
We are so blessed to have our sweet little boy and that God has continued to keep him growing strong and healthy. Pastor Chuck talked this morning about prayers - how sometimes they are answered in our timing and the way we want and other times, God chooses not to answer our prayers or at least not the way we think would be best. He specifically addressed the issue of sickness and death. He said that God can and does heal people from sickness, sometimes the healing is on this side of heaven, and other times it's after we are in heaven. He encouraged everyone that is facing a sickness or a terminal illness to pray and continue praying for complete healing and to even call upon the elders to pray over us as we are battling illnesses.
We did call upon the elders of our church to pray over little Ethan back in March, the week we first learned of his diagnosis and then again the first week of August, our last week at church before Ethan's due date. Obviously, God chose not to completely heal Ethan's heart prior to birth and we still don't know what God's reason is for that. Sometimes God works supernaturally to heal, and sometimes he uses medical teams and medicines to do that work of "healing" or management of the illness. We praise God that Ethan's had such a great medical team to treat his condition and that the treatment has gone as well as can be expected and that there were no additional complications to Ethan's diagnosis.
For those of you reading this that are also battling sickness or know of those who are facing sickness or terminal diseases, please continue to pray for those families and individuals. We'd even like to join you in your prayers. You can post them as a comment on our blog, or send us an email (http://www.ethanmiles.com/ and follow the link to email us). We met several families while living at the Ronald McDonald House that we continue to follow their blogs and pray daily for them and we would feel so honored to be able to add your family to our daily prayer list.
In the 7 months since we firt learned about Ethan's heart defect HLHS (Hypoplastic Left Heart Syndrome), we've been truly blessed to know several other families who have children with the same heart defect. Not blessed in the sense that we're happy that they have sick kids also, but blessed in the fact that we're not alone and we can talk with other families who know JUST what we're going through. We can lean on each other for support - to laugh, cry, vent and more. Don't get me wrong, we also need and appreciate the support of all our friends and family that have "healthy" kids and who care about us. Some have even been in similar situations with family illness or other birth defects, but there's a special bond when it's the exact same congenital heart defect (CHD). Living with a CHD is not a road I wish upon anyone but it sure is great to have the support of others who have "been there, done that". Two Bible verses that have really ministered to us through our journey to date are these: John 16:33 (this is Jesus speaking) "I have told you these things, so that in me you may have peace. In this world you will have trouble. But take heart! I have overcome the world." and another verse (whose reference and exact wording escape me at the moment), which basically talks about how the Lord promises to not give us more than we can handle. Every time I start to get overwhelmed, I claim both of these verses and remind myself that we're not alone in this world - God is with us and will help us get through! What a comforting thought!
Well thanks for "listening" to my (Julie) reflection of the day. It was great getting to see so many of our readers at church today and to hear that you're still praying for us. We greatly appreciate the prayers and moral support - keep it up please! It's hard to believe that in just a matter of a few months, we'll be surrendering our sweet son back to the skillful hands of the medical team at UNC for Ethan's 2nd stage of surgery!
We did call upon the elders of our church to pray over little Ethan back in March, the week we first learned of his diagnosis and then again the first week of August, our last week at church before Ethan's due date. Obviously, God chose not to completely heal Ethan's heart prior to birth and we still don't know what God's reason is for that. Sometimes God works supernaturally to heal, and sometimes he uses medical teams and medicines to do that work of "healing" or management of the illness. We praise God that Ethan's had such a great medical team to treat his condition and that the treatment has gone as well as can be expected and that there were no additional complications to Ethan's diagnosis.
For those of you reading this that are also battling sickness or know of those who are facing sickness or terminal diseases, please continue to pray for those families and individuals. We'd even like to join you in your prayers. You can post them as a comment on our blog, or send us an email (http://www.ethanmiles.com/ and follow the link to email us). We met several families while living at the Ronald McDonald House that we continue to follow their blogs and pray daily for them and we would feel so honored to be able to add your family to our daily prayer list.
In the 7 months since we firt learned about Ethan's heart defect HLHS (Hypoplastic Left Heart Syndrome), we've been truly blessed to know several other families who have children with the same heart defect. Not blessed in the sense that we're happy that they have sick kids also, but blessed in the fact that we're not alone and we can talk with other families who know JUST what we're going through. We can lean on each other for support - to laugh, cry, vent and more. Don't get me wrong, we also need and appreciate the support of all our friends and family that have "healthy" kids and who care about us. Some have even been in similar situations with family illness or other birth defects, but there's a special bond when it's the exact same congenital heart defect (CHD). Living with a CHD is not a road I wish upon anyone but it sure is great to have the support of others who have "been there, done that". Two Bible verses that have really ministered to us through our journey to date are these: John 16:33 (this is Jesus speaking) "I have told you these things, so that in me you may have peace. In this world you will have trouble. But take heart! I have overcome the world." and another verse (whose reference and exact wording escape me at the moment), which basically talks about how the Lord promises to not give us more than we can handle. Every time I start to get overwhelmed, I claim both of these verses and remind myself that we're not alone in this world - God is with us and will help us get through! What a comforting thought!
Well thanks for "listening" to my (Julie) reflection of the day. It was great getting to see so many of our readers at church today and to hear that you're still praying for us. We greatly appreciate the prayers and moral support - keep it up please! It's hard to believe that in just a matter of a few months, we'll be surrendering our sweet son back to the skillful hands of the medical team at UNC for Ethan's 2nd stage of surgery!
Thursday, October 18, 2007
Cardiologist Checkup
All went well at the cardiologist today. Nothing too eventful to report. Dr. Robinson was pleased that Ethan's growing so well and that his oxygen sats are around 73-83%. With those sats, we didn't even need to have an echocardiogram done this time! Ethan has outgrown 2 of his medication doses so we were told to add .1 mL to keep up with his weight. We go back to see Dr. Robinson at WakeMed in Raleigh again on Nov. 15th. At that time, we'll start looking at when to schedule the 2nd stage of surgery (it probably won't be before Christmas!), based on Ethan's oxygen sats and his current weight. We'll know it's getting close to time to do the next surgery once his sats are steadily staying in the mid 60's to low 70's.
As for an update about our trip to the fair last night, we had a lot of fun. We ate way too much fried food - including the fried Coca-Cola (Julie's all time favorite drink!). For those of you who are as curious as we were about how they can fry Coca-Cola, basically it's a funnel cake batter whose liquid is Coca-Cola and then they serve it in a drink cup with Coca-Cola syrup and powdered sugar and whipped cream. Not very "Coke" flavored, but at least I can say I tried it! Ethan did well with his Grammy too. Despite having had his shots yesterday, he was pretty good while we were gone. Over night though, he was awake every 2 hours just fussing and crying (he has been normally sleeping 4-6 hours/night) so I (Julie) gave him some Tylenol and he finally went back to sleep until we had to get up for the cardiologist appointment.
This afternoon after lunch, Ethan ran a 1 degree fever so I gave him more Tylenol and tried to have him take a nap but he cried for over 20 minutes once I put him in bed. I finally decided he was not going to cry himself to sleep so I picked him up and he fell right asleep - he just needed his mommy. :-) Since he's not feeling well from the shots, I just let him sleep on me for as long as he could (about 2 hours) then it was time to feed him again. It was nice to get the extended cuddle time with him!
Hopefully he'll sleep well tonight and he can have a better day tomorrow. Dan and Ethan just went to bed and I'm headed to bed too. Thanks for your continued prayers.
As for an update about our trip to the fair last night, we had a lot of fun. We ate way too much fried food - including the fried Coca-Cola (Julie's all time favorite drink!). For those of you who are as curious as we were about how they can fry Coca-Cola, basically it's a funnel cake batter whose liquid is Coca-Cola and then they serve it in a drink cup with Coca-Cola syrup and powdered sugar and whipped cream. Not very "Coke" flavored, but at least I can say I tried it! Ethan did well with his Grammy too. Despite having had his shots yesterday, he was pretty good while we were gone. Over night though, he was awake every 2 hours just fussing and crying (he has been normally sleeping 4-6 hours/night) so I (Julie) gave him some Tylenol and he finally went back to sleep until we had to get up for the cardiologist appointment.
This afternoon after lunch, Ethan ran a 1 degree fever so I gave him more Tylenol and tried to have him take a nap but he cried for over 20 minutes once I put him in bed. I finally decided he was not going to cry himself to sleep so I picked him up and he fell right asleep - he just needed his mommy. :-) Since he's not feeling well from the shots, I just let him sleep on me for as long as he could (about 2 hours) then it was time to feed him again. It was nice to get the extended cuddle time with him!
Hopefully he'll sleep well tonight and he can have a better day tomorrow. Dan and Ethan just went to bed and I'm headed to bed too. Thanks for your continued prayers.
Wednesday, October 17, 2007
2 Month Checkup
Today I (Julie) took Ethan in to the pediatrician for his 2 month well baby checkup and first round of immunizations. We both handled it pretty well! I spoke to my grandma on Sunday and she told me she always felt guilty about having to take my mom and her brothers for their shots and now I understand why and can agree! I personally hate needles and know that they hurt so it was really difficult to subject Ethan to the pain, even though it's necessary in order to keep him healthy. And he definitely needs to be healthy with his condition, especially with cold/flu season upon us (if it will ever cool down!).
In addition to the shots, we also did his weekly weight check. He has gained another 8 ounces, putting this week's weight at 11lb. 13.5 oz. (5.37 kg) and 24 inches long! Tomorrow we go to the cardiologist, so you can pray that goes well too.
Thank you everyone for your continued prayers for us! We enjoy reading your comments (click on the comments link at the end of each posted entry to leave us a comment and also read other peoples' comments to us) and emails (see link on our main page: http://www.ethanmiles.com/) and even seeing many of you face to face on Sunday at church.
Also, tonight Ethan will get be watched by his Grammy (Dan's mom) while Dan and I join Ethan's Aunt Jessica and Uncle Brandon for a fun night out at the N.C. State Fair! For those of you reading this who are not from N.C. - the big claim to fame this year is that it has more rides than Disney World! None of us are big ride fans (especially not at $2-$6/ride but it will still be fun to see!) This is Brandon's first visit to the N.C. State Fair so we'll get to show him the ropes, enjoy some funnel cake, and hopefully catch the pot-bellied pig races!
In addition to the shots, we also did his weekly weight check. He has gained another 8 ounces, putting this week's weight at 11lb. 13.5 oz. (5.37 kg) and 24 inches long! Tomorrow we go to the cardiologist, so you can pray that goes well too.
Thank you everyone for your continued prayers for us! We enjoy reading your comments (click on the comments link at the end of each posted entry to leave us a comment and also read other peoples' comments to us) and emails (see link on our main page: http://www.ethanmiles.com/) and even seeing many of you face to face on Sunday at church.
Also, tonight Ethan will get be watched by his Grammy (Dan's mom) while Dan and I join Ethan's Aunt Jessica and Uncle Brandon for a fun night out at the N.C. State Fair! For those of you reading this who are not from N.C. - the big claim to fame this year is that it has more rides than Disney World! None of us are big ride fans (especially not at $2-$6/ride but it will still be fun to see!) This is Brandon's first visit to the N.C. State Fair so we'll get to show him the ropes, enjoy some funnel cake, and hopefully catch the pot-bellied pig races!
Monday, October 15, 2007
Mimi and Pop-Pop's House
Not much new to report. We had a nice, relaxing weekend here at home. After church yesterday, we went over to Julie's parents' house for lunch (Mimi & Pop-Pop's house) because the grandparents were going through withdrawals from not seeing Ethan! Then later that night, Dan's mom (Grammy) came over for a visit after having stopped by Ethan's cousins' house (Rebecca and Marissa that were in the last set of pictures, and who live only a mile from us!).
Then this afternoon, I (Julie) took Ethan BACK over to Mimi & Pop-Pop's house so they could babysit while I went shopping for some new fall clothes that are NOT maternity clothes! This was the 3rd time Ethan's been dropped off at their house for a babysitting session (the other 2 times were about 3 weeks ago when I went for a dentist appointment and also for my 6-week postpartum checkup - both appointments were in the Durham/Chapel Hill area about an hour away). It was nice to have a break and also I was pleasantly surprised to find some clothes that actually fit since I haven't lost all that baby weight yet (only 10 pounds to go!). :-)
This week, our other big "outings" are Wednesday - we go to the pediatrician for immunizations and well baby 2 month checkup, and Thursday - we go to see the cardiologist for our monthly visit. We'll give updates after each of these appointments. Please be in prayer for us and Ethan for his immunizations - I (Julie) fear needles and am not looking forward to the 4 shots Ethan will have to receive and what kind of side effects they may cause for him.
Then this afternoon, I (Julie) took Ethan BACK over to Mimi & Pop-Pop's house so they could babysit while I went shopping for some new fall clothes that are NOT maternity clothes! This was the 3rd time Ethan's been dropped off at their house for a babysitting session (the other 2 times were about 3 weeks ago when I went for a dentist appointment and also for my 6-week postpartum checkup - both appointments were in the Durham/Chapel Hill area about an hour away). It was nice to have a break and also I was pleasantly surprised to find some clothes that actually fit since I haven't lost all that baby weight yet (only 10 pounds to go!). :-)
This week, our other big "outings" are Wednesday - we go to the pediatrician for immunizations and well baby 2 month checkup, and Thursday - we go to see the cardiologist for our monthly visit. We'll give updates after each of these appointments. Please be in prayer for us and Ethan for his immunizations - I (Julie) fear needles and am not looking forward to the 4 shots Ethan will have to receive and what kind of side effects they may cause for him.
Friday, October 12, 2007
Swallow study at UNC
Well good news and bad news. Good news is that in the first 5 minutes of the swallow study (which is the normal amount of time Ethan spends drinking his bottle) Ethan did not aspirate at all! But the bad news is that they continued to watch him swallow for another 15 minutes and towards the end, he did start to silently aspirate. Therefore, the speech therapist (who performed the study) recommends that we continue doing the thickened bottle feeds until after his next surgery, when they will repeat the swallow study again. So I won't lie, I was EXTREMELY disappointed to hear about having to continue the thickened feeds - I walked out of there telling Dan that this news has ruined my entire day, and it was all I could do to fight back the tears. I hardly slept at all last night, I woke up every 1-2 hours and while I was awake, I prayed for Ethan to pass the swallow study with flying colors so we can start to have a little normalcy to our lives for once. Even though God chose not to answer my prayer the way I requested, I know we still made the right decision to do the swallow study this morning. As hard as it is to get the news that we are recommended to continue the thickened feeds, I know the speech therapist is just wanting to err on the side of caution. As I've said my entire life, "better safe than sorry". I just wish I didn't have to take my own advice and the advice of UNC.
Thursday, October 11, 2007
More Pictures!
Here are some more pictures of Ethan, as promised earlier today!
Ethan in his swing!
Aunt Jenny feeding Ethan!
Napping with Mimi!
Ethan with his cousins, Marissa (2) and Rebecca (5)!
Ethan being fed by Aunt Jessica while Uncle Brandon watches!
Ethan asleep on Mommy after his bath! 2 months old!
Hard to believe our little boy is 2 months old today! So much has happened in his life since he was born! Yesterday, we went to the pediatrician for his weekly weight check - he's now 11lb. 4 1/4oz. (5.13kg). That's only 5 oz. gained this week, as opposed to 9 oz. gained last week, but Nurse Kay at UNC said it's ok. His pulse ox this week has been between 73-81%, so it's slightly improved from last week. We also ordered a digital scale from ebay, that should be arriving in the next week or two, so hopefully we won't have to go weekly to the pediatrician for his weigh in any more. Also, with the home scale, we won't have to have a home nurse come weigh him - which was our other option, but our current home nurse doesn't have a digital scale (which UNC requires for the weekly weigh in) and no other home nurse company has a digital scale either, so home nursing is out of the question at this time (plus it was going to cost $102.95/visit).
Tomorrow morning at 8:30am we go back to UNC for another swallow study. Last swallow study was done about 6 weeks ago, and at that time, it was taking him 20 minutes to drink a 2 oz. bottle, and it was only the last couple of minutes where he started falling asleep when he was silently aspirating (swallowing the wrong way and not coughing). Well it only takes him 5 minutes to take a 3 oz. bottle now and he doesn't get tired or fall asleep so we think he's ok. He has the ability to cough, and it's rarely when he's eating so we think he's ok. If he passes, then we can take him off the thickened feeds and hopefully I'll be able to nurse him more often! Right now, I'm only allowed to nurse him once a day, and when he does nurse, he latches on right away and does great, although he falls asleep after about 10 minutes.
So today's prayer request is that the x-ray swallow study goes well tomorrow morning. Also, next week, we've got 2 appointments - next Wednesday after his weigh in, he'll have his 2 month checkup and also get his immunizations. Then next Thursday, we go back to WakeMed to see his cardiologist for his monthly heart checkup.
And, as promised, I finally have some new pictures of Ethan for your viewing pleasure! P.S. we'd love to hear from you. Please click on the comment link at the bottom of each blog entry to post a comment on our site!
Mommy & baby Ethan
Well I thought I could get more than one picture posted but I guess not. I'll try to post more later today.
Wednesday, October 3, 2007
Weekly weight check
Well we went in to the pediatrician this morning for our weekly weight check. If we go between 8am-8:30am, only the staff is there, no patients so we can get right in and out without being around any sick kids. Ethan slept well last night, he usually wakes up every 3 hours and wants to eat but he went to bed at 11pm last night (after his last feeding then didn't wake up until 4:30am). He must've known it was weight check day because he woke up again at 6am and fussed until I got out of bed and fed him at 6:30am). After his 6:30am feeding, he went back to sleep until we got to the peds at 8:15 and I had to undress him to have him weighed. He's a whopping 10 lb., 15 1/4 oz!
He fussed a little because he was cold and naked, but then fell back asleep and has stayed asleep through his next feeding. It's now 11:15 am and I'm going to have to wake him so he can eat, take his meds, then go with me to meet my friend (and co-worker) Angie for lunch. Oh he must know I'm typing about him b/c he's starting to wake up and fuss - time to go feed him!
He fussed a little because he was cold and naked, but then fell back asleep and has stayed asleep through his next feeding. It's now 11:15 am and I'm going to have to wake him so he can eat, take his meds, then go with me to meet my friend (and co-worker) Angie for lunch. Oh he must know I'm typing about him b/c he's starting to wake up and fuss - time to go feed him!
Monday, October 1, 2007
God is so Good!
In addition to having a great day yesterday, getting to be back at church, I also forgot to mention that Ethan finally decided to give nursing a try yesterday! This was such an encouragment to me to not have to pump for once! Since Ethan's cardiology team said he could only nurse once a day and have to be bottle fed the rest of the time, I was doubting if I'd ever get to have the bonding experience. I've tried several times since we came home, but he just screamed and cried (he's so spoiled by the bottle!) and never wanted to latch on until yesterday. He's been fussy all day today so the couple of times I tried, I wasn't surprised that he didn't want to do it. I don't want to force it on him and make him end up not enjoying it, so I'll just keep trying, day by day. Maybe if God blesses us with more children in the future, I'll get the blessing of getting to nurse and not pump. Until then, I'll just be thankful for the times I do get to nurse Ethan, each time is precious and amazing.
Another way God has been good is that I've been able to connect with two other HLHS families - both are Christian families with baby girls. One girl was just born Sept. 19th and had her first surgery (Norwood) last Monday, Sept. 24th. Her family's from New Orleans and they chose to have the surgery in Boston. Please add baby Julianne and her parents (Jessica and Kent) to your prayers. http://juliannesjourney.blogspot.com/ The other family is a little closer to home, they live in Columbia, SC - where my (Julie) youngest sister is going to college. Their baby has not been born yet, but, like us, they were blessed to find out prenatally about their little girl's condition so they can understand and prepare for their journey ahead. Please pray for this family as well: http://babygirlbutcher.blogspot.com/.
Another way God has been good is that I've been able to connect with two other HLHS families - both are Christian families with baby girls. One girl was just born Sept. 19th and had her first surgery (Norwood) last Monday, Sept. 24th. Her family's from New Orleans and they chose to have the surgery in Boston. Please add baby Julianne and her parents (Jessica and Kent) to your prayers. http://juliannesjourney.blogspot.com/ The other family is a little closer to home, they live in Columbia, SC - where my (Julie) youngest sister is going to college. Their baby has not been born yet, but, like us, they were blessed to find out prenatally about their little girl's condition so they can understand and prepare for their journey ahead. Please pray for this family as well: http://babygirlbutcher.blogspot.com/.
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