One more update... I've got to take Ethan back to UNC tomorrow for another swallow study. This will be his third time doing the study so I'm really asking for a lot of prayer that he will pass the test this time around. It's routine to do a barium swallow study on heart surgery patients shortly after surgery (Ethan had his first study about 2 weeks after surgery) to see if there was any nerve damage from the surgery since the heart is so close to the nerves that affect swallowing and aspirating. We were going to wait and have Ethan's 2nd swallow study around the time of Ethan's 2nd surgery, but I was just so impatient and Ethan's eating time had improved so much that we ended up having his 2nd swallow study back in October, when Ethan was 2 months old. Now that he's 6 months old and has had his 2nd surgery, we're able to do a 3rd study. Ethan came so close to passing his 2nd study, so please join us in prayer that he can definitely pass this time around.
In case you're just joining our blog or in case you forgot what this swallow study reveals, here's a quick recap. I believe there are different types of swallow studies so in the swallow study that Ethan does, he is given a bottle of barium to drink while he gets an x-ray done of his throat and chest. The x-ray technician watches closely to make sure that Ethan swallows the liquid down his throat and into his stomach, without any liquid silently aspirating (being swallowed into his lungs without him coughing). Ethan will pass if he doesn't silently aspirate.
When Ethan had his first study done, it was taking him about 30 minutes to drink about an ounce of his bottle and he was getting too tired, which was part of the reason for the aspiration. I had the 2nd study done because he was up to drinking 4 ounces in under 3 minutes. Now, at 6 months old, Ethan drinks 5-6 ounces in 3 1/2 minutes. The swallow study lasts for about 20 minutes, which I don't think is very accurate because he never takes that long for a bottle, but I learned that they push the babies that long to "prove" that it's still possible for him them to silently aspirate.
I am more nervous about this swallow study than about both heart surgeries combined. I really want Ethan to pass so that we don't have to bother with thickening his bottles any longer. But more importantly, I want him to pass so that we don't have to worry about him silently aspirating in the event that he gets another stomach bug (like he had the day after we came home from the hospital last month) and has to take Pedialyte, which I can't seem to get anyone to tell me how to thicken. Also, if we don't have to thicken his drinks, then I'll be able to start giving him more variety of liquids like juice and water.
So, (as if I haven't said this enough already) please join us in prayer today and tomrrow that Ethan can pass his study finally. Our appointment is at 2:30 on Tuesday, 2/26 at UNC. Thanks in advance for your prayer and support!
Monday, February 25, 2008
Updates
You know the old saying, "No news is good news". Well that's certainly the case with our family. Ethan has continued to heal well from his surgery. He acts like nothing's changed, which is encouraging! But it also can make it hard at times for us to remember that it's only been about 5 weeks (tomorrow) since surgery so his sternum still is not completely healed. Therefore, we have to remember to be very gentle when picking him up.
We still can't pick him up under his arms for about another 1-3 weeks (his nurses said it takes 6-8 weeks for the bones to completely heal so we're going to play it safe and wait the maximum amount of time). Without being able to pick him up under his arms, and since Ethan can't sit up on his own yet, we are somewhat more limited in what we can do to play with him. It's too difficult to get him in and out of his exersaucer so we haven't used that since we've come home. Ethan likes to sit up so we either prop him up on the couch and give him some toys or else we hold him while he plays with his toys. Sometimes we lie him on his back so he can play with his activity mat that has toys that dangle down for him to reach up to play with. He gets bored of being on his back so I either end up holding him or I put him in his swing. Needless to say, with holding Ethan, I don't seem to have much free time to get anything done around the house. I have a Snugli carrier so I can "wear" him and have my hands free but he hasn't liked being in it after this 2nd surgery so that option's out. Any other ideas of what to do with him are welcomed. Just leave me a comment (see link at bottom of this journal entry).
We just tried "tummy time" a couple of nights ago, for the first time since surgery. Usually Ethan starts screaming after just a couple of minutes, but he managed to stay on his tummy for nearly 20 minutes this time. He even started "scooting" around on his blanket so that was fun to watch! He still won't roll over, he just rolls onto his side and stops, but we're making progress.
Thanks for checking in on us and for continuing to keep us in your prayers.
We still can't pick him up under his arms for about another 1-3 weeks (his nurses said it takes 6-8 weeks for the bones to completely heal so we're going to play it safe and wait the maximum amount of time). Without being able to pick him up under his arms, and since Ethan can't sit up on his own yet, we are somewhat more limited in what we can do to play with him. It's too difficult to get him in and out of his exersaucer so we haven't used that since we've come home. Ethan likes to sit up so we either prop him up on the couch and give him some toys or else we hold him while he plays with his toys. Sometimes we lie him on his back so he can play with his activity mat that has toys that dangle down for him to reach up to play with. He gets bored of being on his back so I either end up holding him or I put him in his swing. Needless to say, with holding Ethan, I don't seem to have much free time to get anything done around the house. I have a Snugli carrier so I can "wear" him and have my hands free but he hasn't liked being in it after this 2nd surgery so that option's out. Any other ideas of what to do with him are welcomed. Just leave me a comment (see link at bottom of this journal entry).
We just tried "tummy time" a couple of nights ago, for the first time since surgery. Usually Ethan starts screaming after just a couple of minutes, but he managed to stay on his tummy for nearly 20 minutes this time. He even started "scooting" around on his blanket so that was fun to watch! He still won't roll over, he just rolls onto his side and stops, but we're making progress.
Thanks for checking in on us and for continuing to keep us in your prayers.
Wednesday, February 13, 2008
CHD Awareness Week
Most people think of this week/month as the month of Valentine's or Black History Month, but slightly less known, this is the week of Congenital (present at birth) Heart Defect (CHD) Awareness week - with tomorrow 2/14 being CHD Awareness Day. I never really knew much about heart defects until last March when Ethan was diagnosed with his heart defect - Hypoplastic Left Heart Syndrome.
To "celebrate" this week and help raise awareness, 2 of my friends (whose babies also have HLHS) are being interviewed by TV stations to share their own journey with raising a baby with a CHD. And here are some interesting facts about CHD's taken from a site to petition the media to raise more awareness. If you'd like to help by signing the petition, please visit this link: http://www.gopetition.com/online/16298.html
-Congenital heart defects are America's #1 birth defect.
-Nearly one of every 85 babies is born with a CHD in the US.
-Congenital heart defects are the Number 1 cause of birth defect related deaths.
-This year almost 40,000 babies will be born with a congenital heart defect in the US. 4,000 of them will not live to see their first birthday.
-91,000 life years are lost each year in this country due to congenital heart defects.
-The cost for inpatient surgery to repair congenital heart defects exceeds $2.2 billion a year.
-Congenital heart defects occur frequently and are often life threatening, yet research into them is grossly under funded.
-Only one penny of every dollar donated to the American Heart Association goes towards congenital heart defect research.
-Of every dollar the government spends on medical funding only a fraction of a penny is directed toward congenital heart defect research.
-More than 50% of all children born with a congenital heart defect will require at least one invasive surgery in their lifetime.
-There are 35 different types of congenital heart defects. Little is known about the cause of most them. There is not yet a cure for any of them.
-In the U.S., twice as many children die from congenital heart defects each year than from all forms of childhood cancer combined, yet funding for pediatric cancer research is five times higher than funding for CHD.
To "celebrate" this week and help raise awareness, 2 of my friends (whose babies also have HLHS) are being interviewed by TV stations to share their own journey with raising a baby with a CHD. And here are some interesting facts about CHD's taken from a site to petition the media to raise more awareness. If you'd like to help by signing the petition, please visit this link: http://www.gopetition.com/online/16298.html
-Congenital heart defects are America's #1 birth defect.
-Nearly one of every 85 babies is born with a CHD in the US.
-Congenital heart defects are the Number 1 cause of birth defect related deaths.
-This year almost 40,000 babies will be born with a congenital heart defect in the US. 4,000 of them will not live to see their first birthday.
-91,000 life years are lost each year in this country due to congenital heart defects.
-The cost for inpatient surgery to repair congenital heart defects exceeds $2.2 billion a year.
-Congenital heart defects occur frequently and are often life threatening, yet research into them is grossly under funded.
-Only one penny of every dollar donated to the American Heart Association goes towards congenital heart defect research.
-Of every dollar the government spends on medical funding only a fraction of a penny is directed toward congenital heart defect research.
-More than 50% of all children born with a congenital heart defect will require at least one invasive surgery in their lifetime.
-There are 35 different types of congenital heart defects. Little is known about the cause of most them. There is not yet a cure for any of them.
-In the U.S., twice as many children die from congenital heart defects each year than from all forms of childhood cancer combined, yet funding for pediatric cancer research is five times higher than funding for CHD.
Monday, February 11, 2008
6 months old!
Note: Ok, I originally wrote this yesterday(Monday, 2/11) but wasn't able to post it until today (Tuesday, 2/12) because Ethan was very fussy all day so bear with me in the references to "today", meaning Monday, 2/11.
Ethan is officially 6 months old today! I remember when he was born, loving the brief moment that Dan and I got to hold him before the nurses rushed him off to the NICU to take care of him. Way back before our precious son was born, we were already trusting God with Ethan's life, however long that time may be with him. God has been so gracious to us in helping Ethan's heart to function so well, thanks to our wonderful team at UNC Hospital. We feel so blessed to be able to celebrate Ethan's half-birthday today!
To mark this momentous day, Ethan and I started the day with a well-baby 6-month checkup at the pediatrician. The doc said he's looking great. He weighs 16 lb. 2 oz. (4 oz. shy of doubling his birth weight!) and is 27" long. Due to his shots, he's been sleepy and fussy all day so I've got my hands full!
I think Ethan's also going through a growth spurt and he is now (finally!) drinking over 5 oz. at each feeding! He also enjoys eating baby foods like applesauce, sweet potatoes, bananas and we're still working on getting him to eat green beans. He's officially outgrown his infant car seat so yesterday we transitioned him to his big boy convertible car seat (meaning that it's rear-facing until he turns one, then we can turn the seat around to be forward facing until he outgrows it in a few years). This is an exciting milestone but it makes going out to eat a little tricky since he can't sit up on his own yet so he doesn't do well sitting in a high chair, but we're making it work.
That's all for now, thanks for continuing to read our blog and keep us in your prayers. Our next big appointment is in 2 weeks - Tues., Feb. 26 at UNC for an x-ray swallow study. I'm actually more nervous about this than his last surgery. This will be Ethan's 3rd time to do the study. I'm so tired of having to always thicken his bottles with rice cereal to help him swallow his bottle down his throat and into his stomach instead of into his lungs. Although we're pretty used to thickening all his bottles, it's more about being able to start giving Ethan juice and water than about the extra few seconds it takes to measure and add the cereal. Please pray that the '3rd time's a charm" as the expression goes so we can not have to worry about giving Ethan juice and other liquids as he gets older.
Ethan is officially 6 months old today! I remember when he was born, loving the brief moment that Dan and I got to hold him before the nurses rushed him off to the NICU to take care of him. Way back before our precious son was born, we were already trusting God with Ethan's life, however long that time may be with him. God has been so gracious to us in helping Ethan's heart to function so well, thanks to our wonderful team at UNC Hospital. We feel so blessed to be able to celebrate Ethan's half-birthday today!
To mark this momentous day, Ethan and I started the day with a well-baby 6-month checkup at the pediatrician. The doc said he's looking great. He weighs 16 lb. 2 oz. (4 oz. shy of doubling his birth weight!) and is 27" long. Due to his shots, he's been sleepy and fussy all day so I've got my hands full!
I think Ethan's also going through a growth spurt and he is now (finally!) drinking over 5 oz. at each feeding! He also enjoys eating baby foods like applesauce, sweet potatoes, bananas and we're still working on getting him to eat green beans. He's officially outgrown his infant car seat so yesterday we transitioned him to his big boy convertible car seat (meaning that it's rear-facing until he turns one, then we can turn the seat around to be forward facing until he outgrows it in a few years). This is an exciting milestone but it makes going out to eat a little tricky since he can't sit up on his own yet so he doesn't do well sitting in a high chair, but we're making it work.
That's all for now, thanks for continuing to read our blog and keep us in your prayers. Our next big appointment is in 2 weeks - Tues., Feb. 26 at UNC for an x-ray swallow study. I'm actually more nervous about this than his last surgery. This will be Ethan's 3rd time to do the study. I'm so tired of having to always thicken his bottles with rice cereal to help him swallow his bottle down his throat and into his stomach instead of into his lungs. Although we're pretty used to thickening all his bottles, it's more about being able to start giving Ethan juice and water than about the extra few seconds it takes to measure and add the cereal. Please pray that the '3rd time's a charm" as the expression goes so we can not have to worry about giving Ethan juice and other liquids as he gets older.
Thursday, February 7, 2008
Cardiologist checkup
Our cardiologist greeted us by saying, "well I think you set a new record for how quick you got out [of the hospital] after the Glenn surgery!". Of course this was extremely exciting to hear! Ethan weighed in at 15 lb. 6 oz., so he really hasn't gained any weight since surgery. But his doc's not concerned right now, since it's only been 2 weeks and I told him that we were all sick with the stomach bug the first week we were home.
Ethan had his echocardiogram done on his heart and the function looks great! The doc has cut back our Lasix (diuretic med) to once a day instead of twice. We go back again in 6 weeks for another checkup and he thinks by that time we'll be able to quit the Lasix completely - which will mean we'll be completely drug-free for the first time ever! What will we do with ourselves, not having to give daily meds, I can't wait!?!
Our next pediatrician appointment is on Monday, 2/11 for Ethan's 6-month checkup. Poor guy, they always schedule his appointments for the day he turns that many months old - what a way to celebrate, huh?
Well that's about all... poor Tarheels for losing to Duke last night, but we'll have a rematch at Duke later in the season so hopefully we'll be able to get bragging rights next time! :-)
Ethan had his echocardiogram done on his heart and the function looks great! The doc has cut back our Lasix (diuretic med) to once a day instead of twice. We go back again in 6 weeks for another checkup and he thinks by that time we'll be able to quit the Lasix completely - which will mean we'll be completely drug-free for the first time ever! What will we do with ourselves, not having to give daily meds, I can't wait!?!
Our next pediatrician appointment is on Monday, 2/11 for Ethan's 6-month checkup. Poor guy, they always schedule his appointments for the day he turns that many months old - what a way to celebrate, huh?
Well that's about all... poor Tarheels for losing to Duke last night, but we'll have a rematch at Duke later in the season so hopefully we'll be able to get bragging rights next time! :-)
Wednesday, February 6, 2008
Go Heels!
Ok, sorry for all of you who are not UNC fans, but I just had to put that out there. Besides already being Tarheel fans, we've got even more reason to be since we've spent so much time there in the past 10 months for prenatal checkups and all of Ethan's care before, during, and after his 2 heart surgeries.
Tonight's the big "battle of the blue" game between UNC (light blue team) & Duke (the dark blue team) - for those not from NC/don't keep up with college basketball. Below is a picture of Ethan, all decked out, ready to watch the game with Mommy tonight!
Tonight's the big "battle of the blue" game between UNC (light blue team) & Duke (the dark blue team) - for those not from NC/don't keep up with college basketball. Below is a picture of Ethan, all decked out, ready to watch the game with Mommy tonight!
Oh yeah, and`speaking of UNC, Ethan's got his first cardiologist appointment post-surgery tomorrow. The plan is to get his vitals (as usual) then do an echo (ultrasound of his heart) like we do about every other visit. Please pray things will look as good internally as he seems to be doing externally with healing. Usually UNC doesn't discharge their cardiac surgery patients until they have had an echo but since his oxygen sats were in the upper 80's, they decided not to do one just for the sake of doing one. That was encouraging news for us!
Also, our biggest request right now for Ethan is that we go back to UNC on Tuesday, 2/26 for another swallow study. We're really tired of thickening his bottles and we'd especially like to be able to start giving him juice. Also, when he was sick last week and the pediatrician had us give him Pedialyte, it made us nervous about him aspirating (swallowing it down his windpipe instead of down his throat - the whole reson we have to thicken his bottles in case you didn't know) the liquid.
Well that's about all for now. Sorry it's been a while since we posted pictures, we plan to get more up soon, now that we're all healthy again!
Friday, February 1, 2008
Feeling Better!
Lots of updates today...
First, thanks for your prayers for our family this week as we get through our first family sickness together. I think we're finally all over the worst of our stomach bug! Ethan's even gotten back to a more "normal" eating schedule - meaning that he's not taking all 4 oz. of his bottle like he was pre-surgery, but at least he's eating 2.5-3 oz. every 3 hours. Since surgery, he would even skip feedings all together, and being sick this week, it's not surprising that he wasn't much into eating at all. I'm just glad that he's at least taking most of his bottle each time and not skipping any more feedings.
Second, Ethan does continue to wake up several times each night, although it's starting to get spaced out to every 3-4 hours, which is better than getting woken up every hour! As the stay-at-home parent, I am the one who gets up to check on Ethan every time he cries so my sleep has been quite interrupted this week, which I think has contributed to me being the slowest to recover from this stomach bug!
Third, Ethan got his chest tube sutures removed this week and his nurse at the pediatrician said he was still healing great with no sign of infection! He was such a brave boy and didn't squirm or even make the slightest sign of discomfort while the sutures came out!
Finally, thanks for your prayers for baby girl Annabelle Butcher! Her surgery went well today, but she definitely still needs prayers as the next 24-48 hours are very critical, as it's the time when the most swelling occurs. Again, you can follow her journey at their blog site: http://www.babygirlbutcher.blogspot.com/. We know just what they're going through - it's hard to believe we were in their shoes almost 6 months ago - boy does time fly by!
First, thanks for your prayers for our family this week as we get through our first family sickness together. I think we're finally all over the worst of our stomach bug! Ethan's even gotten back to a more "normal" eating schedule - meaning that he's not taking all 4 oz. of his bottle like he was pre-surgery, but at least he's eating 2.5-3 oz. every 3 hours. Since surgery, he would even skip feedings all together, and being sick this week, it's not surprising that he wasn't much into eating at all. I'm just glad that he's at least taking most of his bottle each time and not skipping any more feedings.
Second, Ethan does continue to wake up several times each night, although it's starting to get spaced out to every 3-4 hours, which is better than getting woken up every hour! As the stay-at-home parent, I am the one who gets up to check on Ethan every time he cries so my sleep has been quite interrupted this week, which I think has contributed to me being the slowest to recover from this stomach bug!
Third, Ethan got his chest tube sutures removed this week and his nurse at the pediatrician said he was still healing great with no sign of infection! He was such a brave boy and didn't squirm or even make the slightest sign of discomfort while the sutures came out!
Finally, thanks for your prayers for baby girl Annabelle Butcher! Her surgery went well today, but she definitely still needs prayers as the next 24-48 hours are very critical, as it's the time when the most swelling occurs. Again, you can follow her journey at their blog site: http://www.babygirlbutcher.blogspot.com/. We know just what they're going through - it's hard to believe we were in their shoes almost 6 months ago - boy does time fly by!
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