If I create a blog to write about one daughter, and title it after her, and make little mention of my other daughter, who is the absolute joy of my life, how can I be considered a good father? What does it say about me that I've spent all afternoon creating posts to update people on Aria, without saying hardly anything about Daisy?
Daisy is doing great. She will be walking soon, and will then become impossible to keep up with (up with which to keep?) because she already gives us a workout by crawling. She's tiny, still, but is gaining more weight now that we've switched her to whole milk. And oh my goodness, can she put it away! We're averaging more than three gallons a week with her. That strikes me as a lot. By comparison, I am about 10 times her weight. If I were to consume milk at her rate, I would need an entire herd of dairy cattle.
She plays peek-a-boo by herself. It's so funny to watch her pull her coat over her eyes, hold it there for a few seconds, and then pull it away with a big smile. She'll laugh if you say "Peekaboo!" at the right time. We're trying to teach her to blow kisses, and I was able to teach her to wave while saying "hi", but she really doesn't say much else other than "all done". Which she will bust out at any time (out with which she will bust at any time?). It's her all-purpose phrase. I also noticed her making parallel downward motions with both arms, and I am trying to associate that movement with the command "quiet the stadium".
She's starting to go through separation anxiety, which is interesting, since she seemed so chill before. Now, if she's in the playpen, I can't even go into the closet in the same room without her shrieking. This may pose a problem when Aria is to be born. I think it means we'll have to look for accomodations in Indianapolis for a couple weeks, and bring her with us.
So, the blog needs to be renamed. It's not fair that Daisy gets left out. I'm not proud of the oversight. I guess it's a good lesson to learn now, rather than after Aria comes. Daisy's not going to need us any less.
I believe that catches everybody up with Aria's situation and where Daisy is. If I don't post until after Christmas, may you all have a great holiday!
Thursday, December 23, 2010
First and second Indy visits...
..happened right around 30 and 32 weeks. Aria is due in February, around the 14th, but we plan to move it to the 10th.
We met with a genetic counselor. I'm not really sure why. I mean, I understand that with all Aria's problems, the syndrome HAS to be genetic, but knowing that a microdeletion caused it won't help her. It'll help us decide not to have further children, but I don't know that we'd be able to do that anyway. It seems unnecessary. A second visit is similarly unproductive--the geneticist wants to be able to see the baby to be able to try to put a name to her condition. Fair enough.
On the ultrasound, we find another problem. Aria has a radial ray malformation, meaning that the bones in her forearms appear to be twisted, causing her hands to be clenched. "Like a baby T-rex?" is my question. I'm not sure who thinks it's funny (I know Rachael does. It's partly why I married her.) I'm very sure I don't care--this is my problem, and I will deal with it on my terms. I imagine that this may cause us some difficulties with mandated reporters down the road. That's a problem for another day.
We also find that the intestinal difficulty does not appear to be a complete separation of the intestinal tract. Instead, it looks like an obstruction. Either way, it needs to be surgically repaired shortly after birth.
So, let's recap: Aria has hydrocephalus, agenesis of the corpus callosum, radial ray malformation, a ventricular septal defect, a dilated kidney, and an intestinal blockage. Echogenic foci, bright spots on the heart, is just a marker for problems--by itself it's meaningless, so we won't count that one.
But she has a heartbeat, and we can feel her move. I'm already proud of her. And I'm proud of her mom for holding up under the most intense stress you can imagine (while also being pregnant). This Christmas, I definitely count my blessings. I have a good life.
We met with a genetic counselor. I'm not really sure why. I mean, I understand that with all Aria's problems, the syndrome HAS to be genetic, but knowing that a microdeletion caused it won't help her. It'll help us decide not to have further children, but I don't know that we'd be able to do that anyway. It seems unnecessary. A second visit is similarly unproductive--the geneticist wants to be able to see the baby to be able to try to put a name to her condition. Fair enough.
On the ultrasound, we find another problem. Aria has a radial ray malformation, meaning that the bones in her forearms appear to be twisted, causing her hands to be clenched. "Like a baby T-rex?" is my question. I'm not sure who thinks it's funny (I know Rachael does. It's partly why I married her.) I'm very sure I don't care--this is my problem, and I will deal with it on my terms. I imagine that this may cause us some difficulties with mandated reporters down the road. That's a problem for another day.
We also find that the intestinal difficulty does not appear to be a complete separation of the intestinal tract. Instead, it looks like an obstruction. Either way, it needs to be surgically repaired shortly after birth.
So, let's recap: Aria has hydrocephalus, agenesis of the corpus callosum, radial ray malformation, a ventricular septal defect, a dilated kidney, and an intestinal blockage. Echogenic foci, bright spots on the heart, is just a marker for problems--by itself it's meaningless, so we won't count that one.
But she has a heartbeat, and we can feel her move. I'm already proud of her. And I'm proud of her mom for holding up under the most intense stress you can imagine (while also being pregnant). This Christmas, I definitely count my blessings. I have a good life.
Second "high-risk" visit
Just following up on the first, monitoring and such. In the meantime, our research has told us a bunch of things.
1. Hydrocephalus is by far the most significant condition our baby has. The others are physical defects that can be surgically repaired, but hydro often causes serious brain damage. Nobody really mentioned this.
2. The news that Aria does not have trisomy 18, 13, or 21 does not necessarily indicate a positive outcome. She still has all of these (separate) conditions, any one of which is a serious concern for a newborn.
3. Hydro outcomes are not predictable. They're just not. I wish I could emphasize this in more than bold. Everybody wants answers, and absolutely nobody can tell you anything useful. Some kids are normal/close to normal. Others are seriously disabled, and everything in between. There is no way to tell the difference. Most people don't really get this point. Part of our nature is to search for answers, but there won't be any for a while.
We go in for another ultrasound, still reeling from the findings of the first one. Now the tech discovers another significant problem. Agenesis of the corpus callosum. Our baby Aria is missing the structure that allows the left and right hemispheres of the brain to communicate. Nobody can tell us what this means either.
The ventricles are now measuring 22 mm, meaning the hydrocephalus diagnosis is confirmed. Cerebrospinal fluid is not being absorbed as it normally should. Most hydro babies' skulls expand because of the pressure and they are born with large heads. Shunts are sometimes surgically installed to allow the fluid to drain to a location where it can be absorbed. Aria's head is measuring small. The fluid buildup appears to be preventing her brain from developing rather than putting pressure on her skull and expanding it.
People are interesting, what they say when they learn all this. I recognize their intent. They're trying to be helpful by giving me hope. I nod and smile. I don't think they understand that my hopes have been downgraded to "maybe I'll get to hold Aria and tell her I love her before she gets taken to the NICU" and long-term "I hope Aria will be able to hear her mother sing. She has such a beautiful voice." and even longer-term "I hope Daisy (our other daughter) doesn't resent us for bringing Aria into the world." I don't want to get carried away with worst-case scenarios, but even the best-case will likely represent a significant difference from the life we have now. We've accepted that. But it still sucks.
This was our last visit locally--from now on, we will be followed in Indianapolis.
1. Hydrocephalus is by far the most significant condition our baby has. The others are physical defects that can be surgically repaired, but hydro often causes serious brain damage. Nobody really mentioned this.
2. The news that Aria does not have trisomy 18, 13, or 21 does not necessarily indicate a positive outcome. She still has all of these (separate) conditions, any one of which is a serious concern for a newborn.
3. Hydro outcomes are not predictable. They're just not. I wish I could emphasize this in more than bold. Everybody wants answers, and absolutely nobody can tell you anything useful. Some kids are normal/close to normal. Others are seriously disabled, and everything in between. There is no way to tell the difference. Most people don't really get this point. Part of our nature is to search for answers, but there won't be any for a while.
We go in for another ultrasound, still reeling from the findings of the first one. Now the tech discovers another significant problem. Agenesis of the corpus callosum. Our baby Aria is missing the structure that allows the left and right hemispheres of the brain to communicate. Nobody can tell us what this means either.
The ventricles are now measuring 22 mm, meaning the hydrocephalus diagnosis is confirmed. Cerebrospinal fluid is not being absorbed as it normally should. Most hydro babies' skulls expand because of the pressure and they are born with large heads. Shunts are sometimes surgically installed to allow the fluid to drain to a location where it can be absorbed. Aria's head is measuring small. The fluid buildup appears to be preventing her brain from developing rather than putting pressure on her skull and expanding it.
People are interesting, what they say when they learn all this. I recognize their intent. They're trying to be helpful by giving me hope. I nod and smile. I don't think they understand that my hopes have been downgraded to "maybe I'll get to hold Aria and tell her I love her before she gets taken to the NICU" and long-term "I hope Aria will be able to hear her mother sing. She has such a beautiful voice." and even longer-term "I hope Daisy (our other daughter) doesn't resent us for bringing Aria into the world." I don't want to get carried away with worst-case scenarios, but even the best-case will likely represent a significant difference from the life we have now. We've accepted that. But it still sucks.
This was our last visit locally--from now on, we will be followed in Indianapolis.
First "high-risk" visit
Nothing risky about the visit itself. It's just the first visit to the perinatologist (specialist OB dealing with high-risk pregnancies).
So, we've prepared ourselves for a full-on discussion of possible "double-bubble" conditions. I've got it narrowed down to something called duodenal atresia, where the intestines are not connected (I will ultimately be wrong, not for the first time). Then the ultrasound tech, who is using a much better machine, starts her exam.
Looks like hydrocephalus..ventricles are measuring 15 mm....yep, definitely hydrocephalus. They can put in a shunt. (I'm not kidding, this was the first description of hydro to us. As if you just put in the shunt, and all your problems go away.) And echogenic foci on the heart. And VSD (ventricular septal defect). And a dilated kidney. Oh, yes, and your baby certainly has an intestinal issue.
I'm quickly scribbling on a gum wrapper, because I wasn't planning on having to write anything. The doctor comes in, agrees that Aria has all these issues, and recommends an amnio.
Rachael (Aria's mom) has a huge fear of needles. It follows the mathematical function N to the power of x, where N is fear and x is the length of the needle. So we ask why we need an amnio. The doctor wants to rule out trisomy 18 and 13 (extra copies of these chromosomes), which are explained to be "incompatible with life".
We confer, and decide that we can handle Down's, but if our baby's going to die, we want to know so that we can prepare. So Rachael tries to calm down the best she can, to allow the giant needle to go into her stomach, and the doctor says "Don't worry. I've seen this done before."
Probably the only funny moment in the whole saga.
The initial screen showed our risk for Down's as 1 in 3800. After factoring in the presence of all the abnormalities, the computer says it's now 1 in 6. The doctor says, "If I had to put money on a diagnosis, it'd be on Down's".
I don't know why, if you had to put money down, you'd go with the 1 in 6 shot. Shouldn't you go with the 5 in 6? Isn't it far more likely that Down's is not the problem (namely, 5 in 6)?
This time, I'm right. The amnio comes back negative for chromosomal abnormalities. This is actually a quick test, and doesn't check for minor chromosomal defects, like microdeletions. Genetic counseling is recommended, in Indianapolis (only about an hour away).
We don't know what to do or say. Not at all what we expected. We ride home, mostly in silence.
So, we've prepared ourselves for a full-on discussion of possible "double-bubble" conditions. I've got it narrowed down to something called duodenal atresia, where the intestines are not connected (I will ultimately be wrong, not for the first time). Then the ultrasound tech, who is using a much better machine, starts her exam.
Looks like hydrocephalus..ventricles are measuring 15 mm....yep, definitely hydrocephalus. They can put in a shunt. (I'm not kidding, this was the first description of hydro to us. As if you just put in the shunt, and all your problems go away.) And echogenic foci on the heart. And VSD (ventricular septal defect). And a dilated kidney. Oh, yes, and your baby certainly has an intestinal issue.
I'm quickly scribbling on a gum wrapper, because I wasn't planning on having to write anything. The doctor comes in, agrees that Aria has all these issues, and recommends an amnio.
Rachael (Aria's mom) has a huge fear of needles. It follows the mathematical function N to the power of x, where N is fear and x is the length of the needle. So we ask why we need an amnio. The doctor wants to rule out trisomy 18 and 13 (extra copies of these chromosomes), which are explained to be "incompatible with life".
We confer, and decide that we can handle Down's, but if our baby's going to die, we want to know so that we can prepare. So Rachael tries to calm down the best she can, to allow the giant needle to go into her stomach, and the doctor says "Don't worry. I've seen this done before."
Probably the only funny moment in the whole saga.
The initial screen showed our risk for Down's as 1 in 3800. After factoring in the presence of all the abnormalities, the computer says it's now 1 in 6. The doctor says, "If I had to put money on a diagnosis, it'd be on Down's".
I don't know why, if you had to put money down, you'd go with the 1 in 6 shot. Shouldn't you go with the 5 in 6? Isn't it far more likely that Down's is not the problem (namely, 5 in 6)?
This time, I'm right. The amnio comes back negative for chromosomal abnormalities. This is actually a quick test, and doesn't check for minor chromosomal defects, like microdeletions. Genetic counseling is recommended, in Indianapolis (only about an hour away).
We don't know what to do or say. Not at all what we expected. We ride home, mostly in silence.
In the beginning...
It was just another day. It was a special day in late October, when we were having the ultrasound that would tell us what brand of baby we were having. We had decided we'd be happy either way; Daisy (our one-year-old) would be thrilled to have a little sister to grow up with (up with which to grow?), and we would also love a little boy.
Well. See, they don't really do those tests for the purpose of determining gender. They do them to be sure that the baby's anatomy looks OK. Our baby showed a "double-bubble" sign.
Um. What does that mean?
Well, sometimes Down's Syndrome, but not always. And you need to be seen by the high-risk perinatologist.
(two-week period of furious Internet research ensues)
We discover that "double-bubble" usually indicates a problem in the intestinal tract. Baby Aria can't digest. So, she swallows amniotic fluid, can't digest it, vomits it back up, and is likely in perpetual discomfort. We don't know that for sure, but how could it be otherwise? Surgery upon birth will be necessary for Aria's survival. It carries a 90% success rate, according to a couple medical journal articles.
So, baby's suffering, and we can't do anything about it, and she might die. And it gets worse.
Well. See, they don't really do those tests for the purpose of determining gender. They do them to be sure that the baby's anatomy looks OK. Our baby showed a "double-bubble" sign.
Um. What does that mean?
Well, sometimes Down's Syndrome, but not always. And you need to be seen by the high-risk perinatologist.
(two-week period of furious Internet research ensues)
We discover that "double-bubble" usually indicates a problem in the intestinal tract. Baby Aria can't digest. So, she swallows amniotic fluid, can't digest it, vomits it back up, and is likely in perpetual discomfort. We don't know that for sure, but how could it be otherwise? Surgery upon birth will be necessary for Aria's survival. It carries a 90% success rate, according to a couple medical journal articles.
So, baby's suffering, and we can't do anything about it, and she might die. And it gets worse.
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