November 25, 2011
Holiday Weekend Fun
We got to spend some time with Jude's family this holiday weekend. Diana made a superb lunch, which Bryan and I shared with Ayden. Ayden especially liked Ms. Diana's mashed potatoes! (She gave him some to take home for future meals!) The boys interacted better, and Ayden enjoyed playing with all the "new" toys: they threw the ball to each other, read books together, and built at Jude's MegaBlok table. We were glad to see their family, especially at a time when we are all reminded of how thankful we are for the miracle boys, Jude and Ayden.
November 24, 2011
Happy Turkey Day!
Special Note: The pumpkin pictures and Twizzler shot are the work of Jordan Elam. Thanks, Jordy! We love you!
November 13, 2011
Big Brother's a Big EATER!
Last week Ayden had a cardiology appointment. We weaned his Lasix to ONE dose a day, so he needed a chest x-ray to confirm that his body wasn't accumulating any excess fluids. Everything checked out okay, so we then met with a nutritionist to discuss a tube weaning plan. Ayden has since been on that plan, and he is doing fabulous! Essentially, we got rid of two daytime tube feeds. As a result, Ayden's goal by mouth is 250 calories. To makeup those calories, Ayden has been eating yogurts, pureed fruits, pureed vegetables, and puddings. His schedule is as follows:
(times are approximate)
7:30 AM wake up
8:15 AM breakfast by mouth
9:00 AM 150 ml formula tube feed (15 min. bolus)
12:30 PM lunch by mouth followed by 130 ml water gravity feed
NAP
After nap 130 ml water gravity feed
6:00 PM dinner by mouth followed by 130 ml water gravity feed
9:30 PM 200 ml formula tube feed (20 min. bolus)
1:30 AM 200 ml formula tube feed (20 min. bolus)
As Ayden increases his calorie intake by mouth, our plan is to slowly get rid of the 9:00 AM formula tube feed. Ayden is also engaging in impromptu feeding activities during the day. In addition, he is taking sips of water or juice from an open cup. As you can see from the numbers above, I do not feel as though Ayden is taking enough liquid by mouth, so my hope is that we can work more diligently to find a way that is comfortable and effective for Ayden to consume more liquid.
We are very proud of Ayden, as we know this is an adjustment and challenge for him. He has thus far proven his willingness to push himself to eat the necessary calories. YEAH, AYDEN! Thank you, Lord, for helping our little man get the job done!
Ayden is a tad bit messy when he eats. He especially loves to smear food in his hair! I don't care how he eats though, as long as he is eating!
Two items of note:
1. Ayden has not vomited for months! This change has been huge for our family. Not only does it mean that we aren't cleaning up throw up 2-3 times a day, but it also means that we don't have to cringe with worry (and sadness) every time it happens. Not vomiting probably is helpful for Ayden's eating as well. So... did he grow out of it? We don't think so. We think there was a medication conflict. When we took away his Nexium (yes, a reflux drug), he stopped vomiting. Supposedly, one is not supposed to mix Nexium and Digoxin, a heart med that Ayden takes twice a day. Though we brought this topic up at least twice to physicians, we were told that the likelihood of the combination being a problem was slim. We, however, think there was an issue.
2. Ayden is down to four medications, three of which are heart meds that he will probably take for as long as they are deemed effective. The fourth medication, Lasix, should be gone by February. WHOO HOO!
(times are approximate)
7:30 AM wake up
8:15 AM breakfast by mouth
9:00 AM 150 ml formula tube feed (15 min. bolus)
12:30 PM lunch by mouth followed by 130 ml water gravity feed
NAP
After nap 130 ml water gravity feed
6:00 PM dinner by mouth followed by 130 ml water gravity feed
9:30 PM 200 ml formula tube feed (20 min. bolus)
1:30 AM 200 ml formula tube feed (20 min. bolus)
As Ayden increases his calorie intake by mouth, our plan is to slowly get rid of the 9:00 AM formula tube feed. Ayden is also engaging in impromptu feeding activities during the day. In addition, he is taking sips of water or juice from an open cup. As you can see from the numbers above, I do not feel as though Ayden is taking enough liquid by mouth, so my hope is that we can work more diligently to find a way that is comfortable and effective for Ayden to consume more liquid.
We are very proud of Ayden, as we know this is an adjustment and challenge for him. He has thus far proven his willingness to push himself to eat the necessary calories. YEAH, AYDEN! Thank you, Lord, for helping our little man get the job done!
Two items of note:
1. Ayden has not vomited for months! This change has been huge for our family. Not only does it mean that we aren't cleaning up throw up 2-3 times a day, but it also means that we don't have to cringe with worry (and sadness) every time it happens. Not vomiting probably is helpful for Ayden's eating as well. So... did he grow out of it? We don't think so. We think there was a medication conflict. When we took away his Nexium (yes, a reflux drug), he stopped vomiting. Supposedly, one is not supposed to mix Nexium and Digoxin, a heart med that Ayden takes twice a day. Though we brought this topic up at least twice to physicians, we were told that the likelihood of the combination being a problem was slim. We, however, think there was an issue.
2. Ayden is down to four medications, three of which are heart meds that he will probably take for as long as they are deemed effective. The fourth medication, Lasix, should be gone by February. WHOO HOO!
Q and A
We did this for the last one, so might as well this time, too.
Was this planned, or a surprise? We were actively trying to get pregnant, so it wasn't a surprise from that standpoint. However, this process took a lot less time (three or four months) than it did with Ayden (2.5 years), so that was (pleasantly) surprising. No need for fertility drugs this time around.
What's the due date? March 19th, which would be exactly one month before Ayden's second birthday.
Have you told Ayden? Allison has attempted to explain it to him several different times, but he is just too young. He hasn't really been around any babies, so he doesn't even understand what one is.
How is Allison feeling? Baby #2 has been much harder on her than was Ayden. The nausea has lasted longer and, this time around, she hasn't been able to avoid the puking.
You said you're having another boy? That's correct. Ayden will have a little brother.
Is that what you wanted? That's an interesting question. With Allison's first pregnancy, I always said I didn't care whether we had a boy or a girl, I just wanted the baby to be healthy. Obviously, that didn't work out so well. This time, then I felt like I should pick. I ultimately settled on preferring a girl, for reasons I'd rather not have memorialized here. Allison has always wanted boys.
You don't have a name picked out? Nope.
Whatever. You just don't want to tell us yet, right? I can't say for sure if we would divulge the name at this point (we were going to keep Ayden's name a secret, but changed our minds), if we actually had something to divulge. Which we don't. We really have no idea what we are going to name this kid. Thankfully, we've got some time left.
Given what happened last time, were you worried about the 20 week ultrasound? Sadly, yes. We know way too much information now about how things can go wrong. That made it really hard to look forward to it. We wanted to know, but we didn't want to know, if that makes sense.
Are there statistics about subsequent births in families with a child with a defect? Yes. In the general population, some form of congenital heart defect occurs in 1 out of 100 births. For families who already have a child with a defect, we heard several different rates, including 3, 10, and 30 out of 100. Put another (much scarier sounding) way, a subsequent child is 3, 10, or 30 times more likely to have a defect than the general population of births.
What did it feel like to see a heart with four chambers? The most accurate word would probably be "emotional." Allison and I both got very quiet for a brief time when the ultrasound tech told us there were definitely four chambers.
And this was confirmed by a fetal ECHO at the cardiologist's office? Correct. They also looked at a bunch of other things and saw nothing of concern. Dr. K read the ECHO and described Baby #2 as "very boring." I can't think of a better result than that. (NOTE: Every night, I sit with Ayden for a few minutes before I put him in his crib. Most nights, I'll same some prayerswith for him. For quite a while, "we" have been praying about Baby #2. We have asked God a lot of things, in a lot of different ways, including that this pregnancy would be a boring one. How about that?)
So Baby #2 doesn't have a congenital heart defect? That's great. To quote Coach Corso: "not so fast, my friend." At this stage, there are some problems that just aren't detectable. For example, while they might be able to see a large hole, there may be a smaller one that isn't visible yet. Additionally, while his heart is formed at this point - i.e., if there's four chambers now, there will always be four chambers - other things are continuing to develop, which leaves the possibility that they don't develop correctly.
Bummer. How do you find out if any of those things happen? Dr. K wants to do another fetal ECHO 8-10 weeks after the last one. Baby #2 will also probably get an ECHO after he's born.
That's enough of the serious stuff. You got any pictures? A few, including two (what I think are kinda creepy looking) 3D shots. I also have video from the 20 week ultrasound, which I have cut down to a manageable length, but I can't post it unless I can find a way to crop out the information bar at the top of the video. I use Windows Live Movie Maker to create the videos, but it doesn't have a crop function. If you have a software suggestion, shoot me an email.
Was this planned, or a surprise? We were actively trying to get pregnant, so it wasn't a surprise from that standpoint. However, this process took a lot less time (three or four months) than it did with Ayden (2.5 years), so that was (pleasantly) surprising. No need for fertility drugs this time around.
What's the due date? March 19th, which would be exactly one month before Ayden's second birthday.
Have you told Ayden? Allison has attempted to explain it to him several different times, but he is just too young. He hasn't really been around any babies, so he doesn't even understand what one is.
How is Allison feeling? Baby #2 has been much harder on her than was Ayden. The nausea has lasted longer and, this time around, she hasn't been able to avoid the puking.
You said you're having another boy? That's correct. Ayden will have a little brother.
Is that what you wanted? That's an interesting question. With Allison's first pregnancy, I always said I didn't care whether we had a boy or a girl, I just wanted the baby to be healthy. Obviously, that didn't work out so well. This time, then I felt like I should pick. I ultimately settled on preferring a girl, for reasons I'd rather not have memorialized here. Allison has always wanted boys.
You don't have a name picked out? Nope.
Whatever. You just don't want to tell us yet, right? I can't say for sure if we would divulge the name at this point (we were going to keep Ayden's name a secret, but changed our minds), if we actually had something to divulge. Which we don't. We really have no idea what we are going to name this kid. Thankfully, we've got some time left.
Given what happened last time, were you worried about the 20 week ultrasound? Sadly, yes. We know way too much information now about how things can go wrong. That made it really hard to look forward to it. We wanted to know, but we didn't want to know, if that makes sense.
Are there statistics about subsequent births in families with a child with a defect? Yes. In the general population, some form of congenital heart defect occurs in 1 out of 100 births. For families who already have a child with a defect, we heard several different rates, including 3, 10, and 30 out of 100. Put another (much scarier sounding) way, a subsequent child is 3, 10, or 30 times more likely to have a defect than the general population of births.
What did it feel like to see a heart with four chambers? The most accurate word would probably be "emotional." Allison and I both got very quiet for a brief time when the ultrasound tech told us there were definitely four chambers.
And this was confirmed by a fetal ECHO at the cardiologist's office? Correct. They also looked at a bunch of other things and saw nothing of concern. Dr. K read the ECHO and described Baby #2 as "very boring." I can't think of a better result than that. (NOTE: Every night, I sit with Ayden for a few minutes before I put him in his crib. Most nights, I'll same some prayers
So Baby #2 doesn't have a congenital heart defect? That's great. To quote Coach Corso: "not so fast, my friend." At this stage, there are some problems that just aren't detectable. For example, while they might be able to see a large hole, there may be a smaller one that isn't visible yet. Additionally, while his heart is formed at this point - i.e., if there's four chambers now, there will always be four chambers - other things are continuing to develop, which leaves the possibility that they don't develop correctly.
Bummer. How do you find out if any of those things happen? Dr. K wants to do another fetal ECHO 8-10 weeks after the last one. Baby #2 will also probably get an ECHO after he's born.
That's enough of the serious stuff. You got any pictures? A few, including two (what I think are kinda creepy looking) 3D shots. I also have video from the 20 week ultrasound, which I have cut down to a manageable length, but I can't post it unless I can find a way to crop out the information bar at the top of the video. I use Windows Live Movie Maker to create the videos, but it doesn't have a crop function. If you have a software suggestion, shoot me an email.
 |
| This is from an ultrasound done at 8 weeks. That blob is Baby #2. |
 |
| A 3D shot from the 20 week ultrasound. |
 |
| Another 3D shot, this time with his hands up by his face. |
November 6, 2011
"Baby One More Time"
Almost two years ago, we published It's a... blog!'s first post. The purpose of the blog was to keep our many out of town family and friends abreast of pregnancy developments and the like. While this blog fulfilled that purpose, within a month of that first post it had grown into something else altogether. As Allison's pregnancy went in an unexpected direction, the blog necessarily followed. Ayden's story has undoubtedly expanded the blog's reach.To date, over 8,000 unique internet users have visited the blog over 60,000 times and have produced almost 100,000 page views. (These numbers would be higher, but I didn't insert the tracking code until after the first five months.) It's read by people who would not come here but for Ayden's congenital heart defect. No longer do we just reach family and friends.
Our lives over the last two years have been laid bare on these pages and made available to the world (well, the world of those with internet access, anyways). I would've never imagined complete strangers - people whom I will never talk to or meet - would know so much about me, about my family. Even so, I wouldn't trade it. There were many times when posting to the blog was a very real form of therapy for me. It allowed me to gather my thoughts and feelings and then release them in an uninhibited, uninterrupted way. Keeping things bottled up inside would've been very dangerous and unhealthy.
At this point, you are probably wondering what any of that has to do with this post's title. I'll explain. As I said, we got this thing started two years so family and friends could know what was going on with Allison and (the unborn child eventually named) Ayden. That purpose hasn't changed since then. Until now. I'll let Ayden explain, after the break.
Our lives over the last two years have been laid bare on these pages and made available to the world (well, the world of those with internet access, anyways). I would've never imagined complete strangers - people whom I will never talk to or meet - would know so much about me, about my family. Even so, I wouldn't trade it. There were many times when posting to the blog was a very real form of therapy for me. It allowed me to gather my thoughts and feelings and then release them in an uninhibited, uninterrupted way. Keeping things bottled up inside would've been very dangerous and unhealthy.
At this point, you are probably wondering what any of that has to do with this post's title. I'll explain. As I said, we got this thing started two years so family and friends could know what was going on with Allison and (the unborn child eventually named) Ayden. That purpose hasn't changed since then. Until now. I'll let Ayden explain, after the break.