- Nothing has changed with the diagnosis. He still only has half a heart and will still need three surgeries in order to survive.
- Ayden was a bit more cooperative this time around, allowing them to get pictures of things they couldn't before. They continue to gather information about the exact structure of his heart.
- The doctor said it is possible that Ayden doesn't have an underdeveloped left side, but instead may essentially have no left side, at all. This could have been caused by a breakdown in the left-right development cues - i.e., it's possible he has heterotaxy. Heterotaxy can produce other issues, such as reversed gut, an appendix on both sides, or a missing spleen. My understanding is that we won't know if any of those types of issues are present until he is born.
- HLHS is most likely a genetic issue. The specific gene(s) responsible are unknown. After having one child with HLHS, the likelihood of a subsequent child also having it (or some other defect) is 10% (as opposed to 1% in the general population). Heterotaxy does not carry an increased likelihood of occurrence in later children.
- Should Ayden survive all of the surgeries, there are some fairly rare complications that could develop, including blood clot dangers, leakages, and fluid accumulation.
- On the positive side, other than this whole heart thing, Ayden continues to get bigger and stronger. Everything else about him - weight, head shape, etc. - are within acceptable ranges. He continues to move around like he should, much to Allison's consternation at times.
- One of the benefits - I hate using that term, but "positive-side-effect-of-increased-doctor-visits-that-we-would-gladly-give-up-to-not-have-deal-with-this" is a bit ungainly - is that we get to see a lot more of Ayden right now than we would under "normal" circumstances. This last round of ultrasounds produced a rather humorous moment when the tech was trying to find Adyen's femur so she could measure it. Because he was all balled up, she was having some difficulty. She initially thought she had it, but it turned out to be the lower half of his leg, not his thigh. You could clearly see the bone on the screen and, upon closer examination, the outline of his leg (ankle to knee, including the shape/size of his calf), which appeared to be quite chubby. Now Allison is worried that she's going to have to squeeze a big 'ol baby out of her tiny little body (there are so many jokes I could insert here, if not for Allison's desire to keep this blog "family friendly").
February 25, 2010
"Just the facts, ma'am" Pt. 2
We returned to Vanderbilt last week to see the pediatric cardiologist (our first time back there since December). As before, there was an ultrasound and then we talked to the doctor. Below is a rundown of what we learned (if you need a refresher, go back and look at this post again). As before, I'm doing this from memory, so I may be off on some of the finer details.
February 21, 2010
Baby Blues
Since December, I have discovered that I am at the peak of my emotional threshold. I appear cool and collected, but my husband knows that the slightest things can make me feel overwhelmed and anxious. While I know that a perfectionist personality combined with pregnancy hormones and full-time work may contribute to feeling this way normally, I will tell you that my emotions feel anything but normal. I don’t usually cry, and I definitely don’t ask for help. Well, I do now.
During the middle of this past week, I called my daddy feeling like I was going to lose it. I was panicked and desperate. I was starting to comprehend that our sweet Ayden is coming in nine weeks, and we seemed hardly prepared. Our house appeared to be a disaster area; we had piles everywhere, and the house hadn’t been cleaned in… ugh, I don’t remember.
My parents answered the call immediately. Though they both had been traveling all week, and next week would summon them to continued difficult scheduling, they didn’t hesitate. They were both here to ease the struggling of a daughter crying out in trepidation and lack of sleep.
I will tell you that, in two days, my parents and Bryan made our house feel like a home again. I’m not sure that the house has ever been this clean, that we have ever been so well fed, or that we have ever accomplished so many things on our ever-increasing “to do” list. The burden has been lifted, and I feel once again excited about the changes occurring in our lives. Daddy & Mama, I cannot tell you enough about how much I appreciate and love you both!
The pictures below show you the nursery before this weekend. We had beautiful furniture in a plain room.
Before Daddy and Bryan painted the nursery, we penciled Bible verses on the wall. Using the wall paint, Daddy created his own message to the baby. 
The painting commenced... 
After painting the nursery, Mama cleaned the furniture. 
And now Ayden’s room looks like it is coming along! PHEW! 
During the middle of this past week, I called my daddy feeling like I was going to lose it. I was panicked and desperate. I was starting to comprehend that our sweet Ayden is coming in nine weeks, and we seemed hardly prepared. Our house appeared to be a disaster area; we had piles everywhere, and the house hadn’t been cleaned in… ugh, I don’t remember.
My parents answered the call immediately. Though they both had been traveling all week, and next week would summon them to continued difficult scheduling, they didn’t hesitate. They were both here to ease the struggling of a daughter crying out in trepidation and lack of sleep.
I will tell you that, in two days, my parents and Bryan made our house feel like a home again. I’m not sure that the house has ever been this clean, that we have ever been so well fed, or that we have ever accomplished so many things on our ever-increasing “to do” list. The burden has been lifted, and I feel once again excited about the changes occurring in our lives. Daddy & Mama, I cannot tell you enough about how much I appreciate and love you both!
The pictures below show you the nursery before this weekend. We had beautiful furniture in a plain room.
Before Daddy and Bryan painted the nursery, we penciled Bible verses on the wall. Using the wall paint, Daddy created his own message to the baby. 
The painting commenced... 
After painting the nursery, Mama cleaned the furniture. 
And now Ayden’s room looks like it is coming along! PHEW! 
February 17, 2010
The Name Game
When you find out someone is going to have a baby, what are the first two things that you ask about? Whether the baby is a boy or a girl and what his/her name is going to be, right? The boy/girl question is an obvious, safe play. But the name question? That one's fraught with danger. Allow me to explain (full disclosure: I am just as guilty of taking this risk as everybody else).
When you ask expecting parents what they are going to name their child, you never know what you are going to get in response. If they answer with a "normal" name - Jessica, Charles, Michael, Jennifer, etc. - you're safe. But what if the parents experienced a bout of temporary insanity when they chose a name? What if they momentarily were as clever as some celebrity parents only thought they were (Apple, Kal-el, Tu (as in, Tu Morrow), Jermajesty)? What if they inexplicably pulled the name out of a 100+ year old hat (Horatio, Agatha, Arthur, Beatrice)? What if the name has an apostrophe in it? What if they name the kid after a day of the week, a month, a season? Or a gem? Or picked anything on this list? Or.......well, you get my point. What do you do? You have to try not to immediately scrunch up your face in abject horror, right? Don't you have to hope that you are able to quickly quell your initial reaction while simultaneously scrambling to figure out how you can convincingly say to the parents how wonderful the name is that they have chosen?
Why do we all (myself included) constantly put ourselves in this predicament? Granted, hardly any of us know any silly celebrities, so we can freely shake our heads and laugh from afar, but we never know when a friend/family member/co-worker will decide it's a good idea to subject their soon-to-be-born child to years and years of ridicule. Despite being trained in the art of deception - I am a lawyer, after all - masking my gut reactions to things isn't exactly my strong point. Yet, I still fire away with the baby name question, recklessly endangering whatever relationship I may have with the expectant parents to whom I'm talking.
I've asked a lot of questions and have provided absolutely zero answers (another lawyerly skill). I don't know why we all do this. I guess we're just sheep. At any rate, this concludes this week's PSA. On to something that you readers actually care about....
As I mentioned in a previous post, Allison has had people ask her about the origins of Ayden's name (and if any of you had negative reactions to his name, how cruel of a person are you to think bad thoughts about a little boy who has a life-threatening heart condition?). Allison has asked me to explain, so here it goes.
Ayden's name originated from either:
While "Aidan" is the kid's name in The Ring, Ayden is not named after him. It's not my favorite movie, or anything else like that. Instead, the movie is simply how I was introduced to the name, which I liked immediately. That was almost 8 years ago. I filed it away until a few years ago when Allison and I started discussing baby names. As it turned out, she liked it, too. So, that was decided.
Next up was the spelling. Since I have a "y" instead of an "i" in my name (which puts me proudly in the minority), I wanted to do the same with his. Allison agreed. That left us figuring out what the other vowel was going to be. Another "y" would be ridiculous, an "i" just didn't look right, and an "a" would run the risk of it being pronounced "a Dan." Thus, "e" won, essentially by process of elimination.
Ayden's middle name - Avery - is my father's middle name. I tossed it out there as an homage to him and, again, Allison liked it. And we were done.
We picked his name a few years ago, never telling anyone. If not for the circumstances, Allison and I would still be the only ones to know it. But because I felt it appropriate for everyone to be able to pray for him by name, and therefore revealed it, somebody told me what it "means." I had never looked this up because, frankly, the thought had never occurred to me. I've always thought name meanings were kind of silly.
Well, not anymore. As it turns out, his means "little fire." That's exactly what he will need to be if he is to survive.
When you ask expecting parents what they are going to name their child, you never know what you are going to get in response. If they answer with a "normal" name - Jessica, Charles, Michael, Jennifer, etc. - you're safe. But what if the parents experienced a bout of temporary insanity when they chose a name? What if they momentarily were as clever as some celebrity parents only thought they were (Apple, Kal-el, Tu (as in, Tu Morrow), Jermajesty)? What if they inexplicably pulled the name out of a 100+ year old hat (Horatio, Agatha, Arthur, Beatrice)? What if the name has an apostrophe in it? What if they name the kid after a day of the week, a month, a season? Or a gem? Or picked anything on this list? Or.......well, you get my point. What do you do? You have to try not to immediately scrunch up your face in abject horror, right? Don't you have to hope that you are able to quickly quell your initial reaction while simultaneously scrambling to figure out how you can convincingly say to the parents how wonderful the name is that they have chosen?
Why do we all (myself included) constantly put ourselves in this predicament? Granted, hardly any of us know any silly celebrities, so we can freely shake our heads and laugh from afar, but we never know when a friend/family member/co-worker will decide it's a good idea to subject their soon-to-be-born child to years and years of ridicule. Despite being trained in the art of deception - I am a lawyer, after all - masking my gut reactions to things isn't exactly my strong point. Yet, I still fire away with the baby name question, recklessly endangering whatever relationship I may have with the expectant parents to whom I'm talking.
I've asked a lot of questions and have provided absolutely zero answers (another lawyerly skill). I don't know why we all do this. I guess we're just sheep. At any rate, this concludes this week's PSA. On to something that you readers actually care about....
***
As I mentioned in a previous post, Allison has had people ask her about the origins of Ayden's name (and if any of you had negative reactions to his name, how cruel of a person are you to think bad thoughts about a little boy who has a life-threatening heart condition?). Allison has asked me to explain, so here it goes.
Ayden's name originated from either:
A. The name of the first of my ancestors to come to AmericaGive up? Well, it's not B. I don't even know if there a literary character named Ayden, in any spelling, but I do know that if the kid was named after her favorite character, he'd be called "Jean Valjean." Needless to say, I would have vetoed that. Option D is also out (and also not accurate), but how awesome would that have been? That leaves A and C. Since I don't even know where my ancestors came from, let alone the name of the first one to come to the New World, the correct answer is C.
B. The name of Allison's favorite literary character
C. The name of the kid in The Ring
D. The name of the room in which he was conceived (i.e., a den)
While "Aidan" is the kid's name in The Ring, Ayden is not named after him. It's not my favorite movie, or anything else like that. Instead, the movie is simply how I was introduced to the name, which I liked immediately. That was almost 8 years ago. I filed it away until a few years ago when Allison and I started discussing baby names. As it turned out, she liked it, too. So, that was decided.
Next up was the spelling. Since I have a "y" instead of an "i" in my name (which puts me proudly in the minority), I wanted to do the same with his. Allison agreed. That left us figuring out what the other vowel was going to be. Another "y" would be ridiculous, an "i" just didn't look right, and an "a" would run the risk of it being pronounced "a Dan." Thus, "e" won, essentially by process of elimination.
Ayden's middle name - Avery - is my father's middle name. I tossed it out there as an homage to him and, again, Allison liked it. And we were done.
We picked his name a few years ago, never telling anyone. If not for the circumstances, Allison and I would still be the only ones to know it. But because I felt it appropriate for everyone to be able to pray for him by name, and therefore revealed it, somebody told me what it "means." I had never looked this up because, frankly, the thought had never occurred to me. I've always thought name meanings were kind of silly.
Well, not anymore. As it turns out, his means "little fire." That's exactly what he will need to be if he is to survive.
February 16, 2010
Praise
The doctor called this afternoon, and my three-hour sugar test results came back normal. I do NOT have gestational diabetes. Yeah!
February 15, 2010
Round Belly & Long Toes
Today was our first time using the maternal fetal specialist as our OB. I was at Baptist for six hours. By the time all was said and done, I had actually been at the office longer than the doctors. Three of those hours were spent in sugar testing. Once that was over, Bryan met me to eat in the hospital cafeteria. (I hadn’t had anything to eat or drink since 10PM the previous evening.) After a quick lunch, we reported back to the doctor for an ultrasound.
The ultrasound revealed that Ayden is doing well. Although the heart condition still remains, all other vitals look good. He weighed three pounds and two ounces, which my mama tells me would be half of what I weighed when I was born. His stomach was full. He was pretending to breathe; this simulation activity is apparently good for the technician to see. He had the appropriate amount of amniotic fluid surrounding him. His hands and feet were positioned together to the left of my belly button (my left), which makes total sense to me since that is where he most often kicks, pushes, punches, squiggles, squirms. They measured his arm and leg bones, head, and torso. He has the cutest round belly.
The pictures shown below reveal Ayden’s face (with his hands under his chin), profile, and foot. She said that Ayden might have long toes; we have no idea where he might have gotten that characteristic from since both Bryan and I have short fingers and toes.
The ultrasound revealed that Ayden is doing well. Although the heart condition still remains, all other vitals look good. He weighed three pounds and two ounces, which my mama tells me would be half of what I weighed when I was born. His stomach was full. He was pretending to breathe; this simulation activity is apparently good for the technician to see. He had the appropriate amount of amniotic fluid surrounding him. His hands and feet were positioned together to the left of my belly button (my left), which makes total sense to me since that is where he most often kicks, pushes, punches, squiggles, squirms. They measured his arm and leg bones, head, and torso. He has the cutest round belly.
The pictures shown below reveal Ayden’s face (with his hands under his chin), profile, and foot. She said that Ayden might have long toes; we have no idea where he might have gotten that characteristic from since both Bryan and I have short fingers and toes.
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