[Note: This is one of the letters that I posted to my friends and family on
Facebook when we received Wyatt's inter-utero AVSD diagnosis and learned
that there was a 75% chance of him having a chromosomal abnormality,
probably Down syndrome. These are rough, these are raw. They are
painful... and totally didn't have to be if I had any understanding
about what DS was in the first place. It is these early days that
prompted me to start Down Wit Dat... to educate and to effect change.
Down syndrome is not something that needs to be grieved. Ever. -Jxox]
So, to fill in the gaps, here's our latest update from the high risk ultrasound clinic at BCH. I do have to say, I love that floor. It's nice, it's clean, it appears to be well laid out and the nurses have been pretty friendly so far. I don't feel like I have to "out" myself every three minutes to get decent care. That is a good feeling.
Mr. Q and I went on our ultrasound adventure today; he, hopped up on Tylenol to break the fever that kept him home from school, me, flustered and running late. We breezed in, had a bit of a chat with my OB and the sonographer and put Quinn in a chair where he could see and still be quiet. The test itself took over an hour, which, aside from the echocardiograms, is the longest one I've had so far. I asked her ahead of time to give me a rough estimates of both weights, simply because I had no idea where they were with their growth. I was told by the tech that Wyatt is currently (approx) 3.9 lbs and Zoe is 3.5lbs. According to the chart in my head, that is pretty good for twins at 31 weeks. Once the test was done, we waited for the summation from the OB.
I hinted in my comments earlier that we got some hopeful news, some facepalm news and some weirdo news and that is exactly what we got. Yes, the AV hole is still there in Wyatt's heart and the one side of his heart is a teensy bit larger. The sonographer was also unsure whether she would have ever seen that ever, which is a testimonial to how good my fetal cardiology team is. That was hopeful, as it provides a little more reassurance to an area where it is needed. He also seems to have a little more fluid in his abdomen which could be anything, including a full bladder. As for the rest of the soft markers: There were none evident (as in seen). (Yay!) However, my OB was quick to point out that 50% of babies with Down syndrome have completely normal ultrasounds. (D'oh!). Truly, we are not going to know if he has DS until I am holding him and/or the genetic testing comes back on the cord blood (if he is Mosaic).
Zoe, not to be outdone by her brother, has fallen off the growth chart this time around. Generally babies stay on a nice, predictable growth curve unless there is a problem. With twins, IUGR is often a reality; there simply isn't enough room to grow. As it stands now, Zoe seems to have lost her growth rate and some amniotic fluid/space. I was told that we were going to monitor this very closely from now on (how much closer can we get? I thought to myself...) which would give us an indication whether this was an isolated incident or not (remember, I'm just getting over the flu). I was told that my C-section date has been moved to the 10th of March now and that may have to be moved up more if Zoe continues to not grow at the rate she should. In fact, they might have to take the babies even earlier than expected (which is not the optimum scenario for lung development) if this is the case. Already we were looking at delivery at 37 weeks, this could be pushed back to 36, 35, 34... and it is all wait and see. To make this short, all my biweekly ultrasounds will now be in the high risk clinic with the same sonographer and my OB in the next room. That way if I need an emergency C-section, I am already registered and just have to move down the hall. I'm sorry, but that rattled me a little bit, especially with Quinn sitting there.
To put a fine point (literally) on what was already an exhausting day, I had my first of two shots of Celestone (betamethasone), a corticosteroid that is used to speed up the lung development of preterm babies. It helps the babies lungs produce surfactant, which is a lubricant that keeps the wet tissue paper of your lungs from sticking together and collapsing; full term babies produce this, but preemies do not as the lungs are not developed enough yet. Just as a side note, I have had shots for everything. I've been bitten, hit, lacerated, exposed to and generally covered in any bodily fluid you could imagine in my career. I just take the stitches, the blood work, the shots just as a course of action and go home and drink a beer. Up until today I thought that the Hep B antibodies (both cheeks!) were the worst ever, but man! That Celestone stuff stings! There is one more shot in my future, so I'll be limping on the other side today. Quinn thought that was hilarious and that Mommy was an extra "brave girl". You have no idea, wee man.
"If it ain't one thing, it's another." According to parents of twins I know, that is (or should be) the family motto for everyone with multiples. I know what will happen, will happen and it is totally out of our control. I'm just a little concerned as I'm running out of things to paint. ;)
So, to fill in the gaps, here's our latest update from the high risk ultrasound clinic at BCH. I do have to say, I love that floor. It's nice, it's clean, it appears to be well laid out and the nurses have been pretty friendly so far. I don't feel like I have to "out" myself every three minutes to get decent care. That is a good feeling.
Mr. Q and I went on our ultrasound adventure today; he, hopped up on Tylenol to break the fever that kept him home from school, me, flustered and running late. We breezed in, had a bit of a chat with my OB and the sonographer and put Quinn in a chair where he could see and still be quiet. The test itself took over an hour, which, aside from the echocardiograms, is the longest one I've had so far. I asked her ahead of time to give me a rough estimates of both weights, simply because I had no idea where they were with their growth. I was told by the tech that Wyatt is currently (approx) 3.9 lbs and Zoe is 3.5lbs. According to the chart in my head, that is pretty good for twins at 31 weeks. Once the test was done, we waited for the summation from the OB.
I hinted in my comments earlier that we got some hopeful news, some facepalm news and some weirdo news and that is exactly what we got. Yes, the AV hole is still there in Wyatt's heart and the one side of his heart is a teensy bit larger. The sonographer was also unsure whether she would have ever seen that ever, which is a testimonial to how good my fetal cardiology team is. That was hopeful, as it provides a little more reassurance to an area where it is needed. He also seems to have a little more fluid in his abdomen which could be anything, including a full bladder. As for the rest of the soft markers: There were none evident (as in seen). (Yay!) However, my OB was quick to point out that 50% of babies with Down syndrome have completely normal ultrasounds. (D'oh!). Truly, we are not going to know if he has DS until I am holding him and/or the genetic testing comes back on the cord blood (if he is Mosaic).
Zoe, not to be outdone by her brother, has fallen off the growth chart this time around. Generally babies stay on a nice, predictable growth curve unless there is a problem. With twins, IUGR is often a reality; there simply isn't enough room to grow. As it stands now, Zoe seems to have lost her growth rate and some amniotic fluid/space. I was told that we were going to monitor this very closely from now on (how much closer can we get? I thought to myself...) which would give us an indication whether this was an isolated incident or not (remember, I'm just getting over the flu). I was told that my C-section date has been moved to the 10th of March now and that may have to be moved up more if Zoe continues to not grow at the rate she should. In fact, they might have to take the babies even earlier than expected (which is not the optimum scenario for lung development) if this is the case. Already we were looking at delivery at 37 weeks, this could be pushed back to 36, 35, 34... and it is all wait and see. To make this short, all my biweekly ultrasounds will now be in the high risk clinic with the same sonographer and my OB in the next room. That way if I need an emergency C-section, I am already registered and just have to move down the hall. I'm sorry, but that rattled me a little bit, especially with Quinn sitting there.
To put a fine point (literally) on what was already an exhausting day, I had my first of two shots of Celestone (betamethasone), a corticosteroid that is used to speed up the lung development of preterm babies. It helps the babies lungs produce surfactant, which is a lubricant that keeps the wet tissue paper of your lungs from sticking together and collapsing; full term babies produce this, but preemies do not as the lungs are not developed enough yet. Just as a side note, I have had shots for everything. I've been bitten, hit, lacerated, exposed to and generally covered in any bodily fluid you could imagine in my career. I just take the stitches, the blood work, the shots just as a course of action and go home and drink a beer. Up until today I thought that the Hep B antibodies (both cheeks!) were the worst ever, but man! That Celestone stuff stings! There is one more shot in my future, so I'll be limping on the other side today. Quinn thought that was hilarious and that Mommy was an extra "brave girl". You have no idea, wee man.
"If it ain't one thing, it's another." According to parents of twins I know, that is (or should be) the family motto for everyone with multiples. I know what will happen, will happen and it is totally out of our control. I'm just a little concerned as I'm running out of things to paint. ;)
