February 7-14, 2010 is Congenital Heart Defect (CHD) Awareness week. Up until 3 years ago, Dan and I (along with most of our friends and family) were aware that heart defects existed but had never had much knowledge about them or even known of anyone who personally was affected by one. It's amazing all we've learned about heart defects in this short amount of time as our family has been personally touched by a CHD.
We have been so blessed to live in such a technologically advanced society where we have instant connections to other families with similar CHD's through such advances as blogs (our heart friends list continues to grow over on our sidebar), websites, Facebook, email and more. Today, in reading one of our friends' carepage, they linked to a great (long) video on youtube from the doctors at Childrens Hospital of Philadelphia (CHOP) describing once again the 3-stage surgery Ethan is in the process of completing to help treat his defect - Hypoplastic Left Heart Syndrome (HLHS). The video is about 9 minutes long, but definitely does a great job with new animations in helping explain HLHS and how the surgeries work together to help give Ethan and other kids like him a chance at a longer, more "normal" life than kids 30 years ago could have ever hoped for.
Next Monday, Feb. 15, we will be returning to see our cardiologist for our bi-annual checkup of Ethan's heart function. Most likely, we will have an echo (sonogram of the heart), pulse ox check, and start discussions about when to start making plans for Ethan's 3rd (and hopefully final) stage of surgery. Scary to think about but oh it will be so nice to also finally get this behind us once and for all. To God be all the glory for all He has and will continue to do in our sweet boy's life!
And what post on CHD Awareness would be complete without some facts about CHD's? This year, I got my information from the CHIN.org website (CHIN - Congenital Heart Information Network). Please help me in spreading the word about heart defects this week and year!
More posts to come about what we've been up to since we got discharged last month!
Wednesday, February 10, 2010
Thursday, January 21, 2010
Discharge Day!
Ethan had a good night, got lots of sleep, despite having to be back on oxygen all night (started at .5L and went down to .3L around 4am). He woke up full of energy and ready to play at 6am, which is early for him. I, on the other hand, tossed and turned all night and never really got any real sleep. We played and watched Disney channel and ate breakfast together then he went down for a nap at 8:30 (usually the time he'd just be getting up) and I'm just going to let him sleep as long as he can since his schedule's so off right now.
Morning rounds happened aroung 9am and by 10 his doc came to talk to me and said he's comfortable sending us home today as long as I feel comfortable taking him home. They don't want us to feel like they're rushing us out, which is nice, but we've been waiting since Tuesday to go home so we're more than ready to go!
Discharge papers have been ordered and there's no definite time they'll be done but we've been told best estimate of late afternoon. Dan's working half a day then coming to hang out with us until it's time to go.
Thank you for all your prayers and support. We praise God that we erred on the side of caution and brought him in when we did, otherwise things could've been a lot worse and we could've had a much longer stay than this.
We're still on schedule for our next regular cardiology checkup on Feb. 15th and we'll hopefully get word then on the time frame they're thinking for his third (and hopefully final) heart surgery. We've known all along that there's no way around it that the 3rd surgery has to happen and that each one gets harder on us since he's older and more aware of his surroundings. This was a good "trial run" of what's still to come. What a difference 2 years makes from when we were here last! He was a few weeks shy of 6 months old at that time, not talking or really very mobile and we had a lot more flexibility in terms of leaving his room. Now he wants us around the clock and sneaking away for meals has been tricky. Since he hasn't had much of an appetite and is being picky about what meals are brought to him (who serves a 2 yr. old Total Raisin Bran for b'fast and things like bbq chicken thigh for dinner?), I've been able to work it out to eat with him most of the time. Maybe if we get out by dinner time tonight, we can head to our fav locale here - Mama Dips - for dinner since I certainly will have no energy to cook tonight!
Once we get home and get settled, I plan to post some more "catch up" posts from the past 5 months and I know we're long overdue for new pictures as well!
Morning rounds happened aroung 9am and by 10 his doc came to talk to me and said he's comfortable sending us home today as long as I feel comfortable taking him home. They don't want us to feel like they're rushing us out, which is nice, but we've been waiting since Tuesday to go home so we're more than ready to go!
Discharge papers have been ordered and there's no definite time they'll be done but we've been told best estimate of late afternoon. Dan's working half a day then coming to hang out with us until it's time to go.
Thank you for all your prayers and support. We praise God that we erred on the side of caution and brought him in when we did, otherwise things could've been a lot worse and we could've had a much longer stay than this.
We're still on schedule for our next regular cardiology checkup on Feb. 15th and we'll hopefully get word then on the time frame they're thinking for his third (and hopefully final) heart surgery. We've known all along that there's no way around it that the 3rd surgery has to happen and that each one gets harder on us since he's older and more aware of his surroundings. This was a good "trial run" of what's still to come. What a difference 2 years makes from when we were here last! He was a few weeks shy of 6 months old at that time, not talking or really very mobile and we had a lot more flexibility in terms of leaving his room. Now he wants us around the clock and sneaking away for meals has been tricky. Since he hasn't had much of an appetite and is being picky about what meals are brought to him (who serves a 2 yr. old Total Raisin Bran for b'fast and things like bbq chicken thigh for dinner?), I've been able to work it out to eat with him most of the time. Maybe if we get out by dinner time tonight, we can head to our fav locale here - Mama Dips - for dinner since I certainly will have no energy to cook tonight!
Once we get home and get settled, I plan to post some more "catch up" posts from the past 5 months and I know we're long overdue for new pictures as well!
Wednesday, January 20, 2010
bed time
Quick recap of the day before we head to bed. Ethan has done a great job being weaned off oxygen today. He's been off of it since about 4:30pm and the real test/reason we're still here at UNC is that they want to monitor his O2 sats over night w/o oxygen to make sure he can handle it. If so, then they're planning to discharge us some time tomorrow. Time to try to get some sleep. He's still coughing on and off but it's definitely a big improvement from yesterday!
lab results
Finally, after waiting here for over 24 hours, we got lab results around 11:30pm last night. Good news is that all our waiting wasn't in vain - we knew he had SOMETHING and now we know exactly what - RSV. I'm encouraged that it isn't the seasonal flu or H1N1 but a little bummed that since it's a virus, no meds will work - it just has to run it's course. One doc just came by to greet us and let us know "the team" will be coming by to discuss today's action plan and when they'll be considering discharge. I don't expect to go home today b/c Ethan needs to be off oxygen and he's not on very much - originally put on 2L around 4am and at 9 he was weaned down to 1.5L then down to 1L at 9:45. We have to be totally weaned and Ethan keeping his normal range of sats before we can go home and that's really all that's holding us here, which is what always holds us here. So again, we're in a waiting pattern but at least we have more communication and understanding about what we're waiting for this time. Time for some cuddling with my little man. I'll try to update here later but will definitely update Facebook since I can do that from my new Palm Pre phone!
Tuesday, January 19, 2010
too long and prayer needed
Wow! I can't believe it's been nearly 6 months since my last update - sorry everyone! Ethan has been a normal, busy toddler since his 2nd birthday back in August. I'll give a quick update and then I've got a prayer request to share.
First, Ethan has managed to keep us so entertained as we watch him grow and explore the world around him! Some of his favorites are: Elmo (some things never change! - his absolute favorite movie used to be "Elmo in Grouchland" but now he's hooked on "Sesame Street: Let's Make Music featuring the music group Stomp"), Target (he tells me multiple times a day that he's going bye-bye and when I ask him where, he tells me he's going to Target and (depending on the day he's either buying bananas or apples or cookies!), fruit snacks (especially Food Lion's VeggieTales fruit snacks), apple juice, chocolate (def. my kid!), and he's just now branching out into playing with cars and trains (which he got for Christmas). He's also talking up a storm, turning into quite the social butterfly! He'd be a great greeter for Target or Wal-Mart!
Now, for the prayer request. We are back at UNC with Ethan. We managed to keep him healthy all fall and most of this winter until now. He started on Sunday morning after church having an occassional clear runny nose. Whenever he's had a runny nose in the past, he also gets a cough due to his sensitive gag reflex. Well the coughing got worse and worse Sunday afternoon and Monday morning so we called his pediatrician and got an appt. for Mon. afternoon.
At the appointment, we saw a brand new doc and since she knew from his chart that he's got a heart defect, she decided to check his oxygen saturation. He was about 10 points low (for him) - sats were in the mid 60's to low 70's (instead of upper 70's-low 80's). Next they called our cardiologist (Dr. R) at UNC to see what he recommends we do. Dr. R said to try to put oxygen on him but that just made him more made and dropped his sats a little more. So after fighting Ethan on trying to get oxygen, they called 911 and made us go to an ER. They wanted to send us to the closest one (WakeMed) but I've have personal issues with them in the past and have 0% confidence in having Ethan treated there so they let us go to our choice (UNC) instead. Ethan and I rode at the speed limit in the ambulance to UNC and arrived around 4:30pm. Dan went home to pack an overnight bag. We had a chest x-ray that came back fine then waited until almost 9pm for a decision and then they decided to admit us. I stayed here at the hospital with Ethan last night while Dan slept at home and came back to stay the day with us here.
Late last night after being admitted, Ethan spiked a fever but Tylenol was dispensed and the fever broke. They did run a respiratory culture to test for all types of respiratory illnesses (flue, RSV, etc.) but that won't come back until tonight at the earliest. No fever today, just lots of coughing and nothing they can do to help him (b/c of the stupid recall a few years ago for all kids cold meds). So now it's just a waiting game to see what his cultures conclude and see if he starts feeling worse or better.
Pray we get some answers soon and that we can be patient and wait for those results to come in. Despite sleep deprivation from hospital life and all the coughing, Ethan's shown some increased energy this afternoon and had fun reading books and coloring and cuddling with us a lot. The coughing has been so intense that his gag reflex has been causing him to puke on and off if trying to eat/drink during a coughing spell. He was on a maintenance IV last night to prevent dehydration but that was stopped at 11am and he's been enjoying lots of jello and juice today. He's done fine with those so he's been cleared to start trying solids - he's had 3 graham cracker squares and done fine with that. Ethan's just begging to go home and we are ready to go to - especially since the course of treatment right now is no different than what we'd be doing if we were at home - liquids/semi-solids and lots of cuddling.
First, Ethan has managed to keep us so entertained as we watch him grow and explore the world around him! Some of his favorites are: Elmo (some things never change! - his absolute favorite movie used to be "Elmo in Grouchland" but now he's hooked on "Sesame Street: Let's Make Music featuring the music group Stomp"), Target (he tells me multiple times a day that he's going bye-bye and when I ask him where, he tells me he's going to Target and (depending on the day he's either buying bananas or apples or cookies!), fruit snacks (especially Food Lion's VeggieTales fruit snacks), apple juice, chocolate (def. my kid!), and he's just now branching out into playing with cars and trains (which he got for Christmas). He's also talking up a storm, turning into quite the social butterfly! He'd be a great greeter for Target or Wal-Mart!
Now, for the prayer request. We are back at UNC with Ethan. We managed to keep him healthy all fall and most of this winter until now. He started on Sunday morning after church having an occassional clear runny nose. Whenever he's had a runny nose in the past, he also gets a cough due to his sensitive gag reflex. Well the coughing got worse and worse Sunday afternoon and Monday morning so we called his pediatrician and got an appt. for Mon. afternoon.
At the appointment, we saw a brand new doc and since she knew from his chart that he's got a heart defect, she decided to check his oxygen saturation. He was about 10 points low (for him) - sats were in the mid 60's to low 70's (instead of upper 70's-low 80's). Next they called our cardiologist (Dr. R) at UNC to see what he recommends we do. Dr. R said to try to put oxygen on him but that just made him more made and dropped his sats a little more. So after fighting Ethan on trying to get oxygen, they called 911 and made us go to an ER. They wanted to send us to the closest one (WakeMed) but I've have personal issues with them in the past and have 0% confidence in having Ethan treated there so they let us go to our choice (UNC) instead. Ethan and I rode at the speed limit in the ambulance to UNC and arrived around 4:30pm. Dan went home to pack an overnight bag. We had a chest x-ray that came back fine then waited until almost 9pm for a decision and then they decided to admit us. I stayed here at the hospital with Ethan last night while Dan slept at home and came back to stay the day with us here.
Late last night after being admitted, Ethan spiked a fever but Tylenol was dispensed and the fever broke. They did run a respiratory culture to test for all types of respiratory illnesses (flue, RSV, etc.) but that won't come back until tonight at the earliest. No fever today, just lots of coughing and nothing they can do to help him (b/c of the stupid recall a few years ago for all kids cold meds). So now it's just a waiting game to see what his cultures conclude and see if he starts feeling worse or better.
Pray we get some answers soon and that we can be patient and wait for those results to come in. Despite sleep deprivation from hospital life and all the coughing, Ethan's shown some increased energy this afternoon and had fun reading books and coloring and cuddling with us a lot. The coughing has been so intense that his gag reflex has been causing him to puke on and off if trying to eat/drink during a coughing spell. He was on a maintenance IV last night to prevent dehydration but that was stopped at 11am and he's been enjoying lots of jello and juice today. He's done fine with those so he's been cleared to start trying solids - he's had 3 graham cracker squares and done fine with that. Ethan's just begging to go home and we are ready to go to - especially since the course of treatment right now is no different than what we'd be doing if we were at home - liquids/semi-solids and lots of cuddling.
Tuesday, August 11, 2009
2 Years Old!
Where and how do I even begin to put in to words all I'm thinking and feeling today?!?Wow, I can hardly believe that two years ago today we met our sweet little heart baby for the very first time! What a blessing these two years have been for our family and also truly what an answer to prayer this has been for us to even be able to have a child at all after having miscarried a year earlier (and ironically enough who's birthday would have been later this month). This is going to be a long post but I promise there will be pictures!
We are very thankful for such a great team of prayer warriors we had during my pregnancy and delivery of Ethan. And, needless to say, we are also very thankful for the wonderful medical team that helped take care of him those first hours and days as we awaited his first open heart surgery at just 2 days old. Not to mention, the surgeons, anesthesiologists, nurses and more that cared for him before, during and after surgery and also our cardiologist that continues to check up on him every couple of months. We have overcome quite a bit these last two years, including a second heart surgery and the not so easy task of staying fairly healthy during RSV/cold/flu seasons. We continue to praise God daily for the gift of our little miracle - Ethan Scott Miles!
Since my last update (June VBS & Tatoo), there's been a lot happening. Ethan tagged along with me in July as I helped out with our church's July VBS (no tatoos this time!). He has become better at walking and talking since the first VBS and he just absolutely loves church - it's like a second (or maybe third if you count all the time he spent at UNC Hospital) home to him! LOL Each morning of VBS, I'd wake him up and tell him it was time for church and VBS and he'd rejoice and say, "Yay! Turt (church)!" By the time we'd walk up the sidewalk and into the building, he'd already be saying, "Bye!" like I couldn't get him to his classroom soon enough and leave him to play with his buddies!
Then one week ago (last Tuesday, 8/4) I took him in to UNC's Raleigh Clinic at Wake Med to see his cardiologist, Dr. R. We had not been there since January and I remember what a hard time we had in keeping him still for the echo so I brought nearly everything but the kitchen sink along in hopes of keeping him distracted long enough to do the echo. That last visit he was just not cooperative and didn't want to sit still long enough to get all the pics they needed so they sent us (back in March) to UNC's Cath Lab to have a sedated echo done. We never got any definite answers from that other than it looked "fine" and there really wasn't anything more to discuss. So, I was determined to "make" Ethan cooperate this time so we didn't have to go back to UNC again if this attempted echo failed.
At last week's cardio appointment, I'm pleased to say that Ethan weighed in at 12.6 kilos (27.7 lbs) and 34". His blood pressure was good (don't remember exact number) and his pulse ox was the best I'd seen yet - 87%! When Dr. R came in to talk to us, he said that he reviewed the March sedated echo and it looked so good that they didn't even need to do one that day and we can just wait 6 more months to come back for another visit! This was obviously an encouraging visit for us!
We know that given Ethan's particular heart defect, he does still have one more heart surgery to go but we know it won't even be something we have to even think about until after the next visit in February. Ever since we first heard of Ethan's condition and started learning about treatment options, we had always been told the 3rd surgery would most likely take place between 2-5 years old. This is such a wide age range for us - especially since he had his first two surgeries within the first 6 months of life!
Well speaking of Ethan's birthday, we celebrated with all our family (16 adults and kids) here at our house on Sunday evening. The menu was all of Ethan's favorite foods - "peesha"(pizza), cheese doodles, popcorn, M&M's, Kool-Aid juice pouches (thanks VBS church staff for that one!), salad (for the adults) and confetti cupcakes with Elmo candies and sprinkles! Yes, Ethan's still obsessed with Elmo so we did the same party theme again this year!
Ethan had a lot of fun eating all his favorite foods (did I mention this kid likes to eat?!) and opening all his presents. Some of his favorite gifts included a T-ball set from his Aunt Jenny, a collapsable tunnel from his Aunt Jessica (aka "Ca-Ca") and Uncle Brandon (aka "Bo-Bo"), a bubble blower (thanks Aunt Amanda, Uncle Reggie, cousins Rebecca & Marissa), and some new Elmo DVD's and Elmo puppet book (thanks Mimi and Pop-Pop). He also received some nice new clothes (thanks Uncle Chris - aka "Kiss" & great-grandma Jada), a shopping cart (thanks Grammie & Pap-Pap), coloring books and puzzles. It's been non-stop fun around here since Sunday night! Now if I can just figure out where to store all the new stuff!
And if you've made it this far through my post (or just skipped ahead), congrats! Time to see some pictures of the party!
Presents, oh boy!
Going Shopping!
"Oh, Ball!"
"...two, fee, go!" - Ethan as he waits for the tunnel to pop open
I love my new t-ball set!
It's my party and I'll cry if I want to!
Oh, something to read! Toddler's are so easily distracted!
Look what I got!
HAPPY BIRTHDAY candles
Not sure if he's more excited about the fire or the Elmo candy and sprinkles!
Yummy - sprinkles and sugar...
Oh yeah!
Ice cream and cupcakes on my Elmo plate and Cookie Monster placemat!
Wednesday, June 24, 2009
Ethan's first tattoo & VBS
This week is VBS at our church. Last year was my first year to volunteer and I enjoyed it enough to return this year. It's so nice to switch it up and take care of some older kids (first graders) and let the nursery workers take care of Ethan for a couple hours each day. So much so that I've also agreed to help out next month when we do it again!
First, before I get into explaining the title for this post, let me just preface this by saying that Ethan came down with a cold and what I'm guessing is yet another (3rd one in 2 months) ear infection. These doctors appointments are not cheap with our current insurance so we're skipping the doctor this time and just waiting it out. The first night or two is always the worst for him, but nothing that a little Tylenol can't help. Ethan certainly had a rough night Sunday night so Dan was gracious enough to stay home from work so I could fulfill day one of my VBS commitment.
Day two rolled around (Tuesday) and Ethan's runny nose stopped and he felt better but then I started coming down with the same symptoms. We managed to make it to VBS and have a good time. When I went to pick Ethan up from the nursery, this is what I saw:
The nursery workers said that this is the tattoo that he picked out - how cute!
Well before ending this post, I just want to update that both Ethan and I are still sick (I'm actually feeling worse w/ a fever/cough and all over achy feeling) so we're skipping VBS today. Maybe if we're feeling better and get lots of rest today, we can go back to VBS tomorrow (Thursday) for the final day. For now, it's lunch time then (hopefully) nap time for us both. I'll end with some more pics of my tattooed son. Enjoy!
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