The doctor was very kind in assuring me I was not paranoid and did the right thing coming in. And fortunately, all was well!
Umbilical cord blood flow and amniotic fluid levels looked good. Baby's "breathing" movements looked good, as did its hand flexing and limb movement (although it took a few pokes before the bean woke up!)
Bean's been a bit more active this evening. Welcome to the third trimester!
Friday, January 25, 2013
From the doctor's office. Again.
So I find myself blogging yet again from the inside of a physician's office. Baby has really slowed down in its movements. Making me very nervous, little bean!
Initial US check was ok, waiting for more detailed check. Heartbeat nice and strong, 162 bpm. Hopefully, I am just being paranoid. Why does this always happen when Lou is away?
Monday, January 21, 2013
A good day for good news
More good news from the genetics counselor - negative for Noonan's syndrome and everything else looks clear! So hooray!
Today happens to be Inauguration Day, as well as MLK Day, a great day for the nation, for thinking about the future, and for being grateful for happy news!
Today happens to be Inauguration Day, as well as MLK Day, a great day for the nation, for thinking about the future, and for being grateful for happy news!
Friday, January 18, 2013
Putting on a happy face
I've been telling more people about the heart problem recently. It's been difficult getting used to that collective face of sympathy and tragedy and shock. So I find myself in the role of cheerleader, reassuring everyone that it will all be alright.
Recently, I've been told several times how calm, even cheerful I am about it all and I think, well, what's the alternative? Freaking out for five months?
What mostly bothers me these days seem worries too trivial to share. Are these babies really so sensitive to germs, as the discussion boards would have me believe? Am I going to have to policing every microbe in the vicinity, become a hand cleaning Nazi, stifle my baby in a tight inner sanctum, constantly worrying about exposure to the.outside world? Am I really going.to have to keep track of every ounce of breastmilk or formula, desperately watching weight gain? Because I am so not that mom. I.never wanted to be that mom. I'm the mom who took ny baby everywhere in the first couple of months, who believes strong immune systems are built by a little healthy exposure, who didn't read the baby books, but just winged it. And now I have the world's healthiest, happiest kid.
I want to do that again. It scares me that I might have to become a completely different kind of mother.
And how will that affect Shea? My number one fear on most days is that the health issues of the baby on the way will harm the son I already have.
26 weeks today.
Sunday, January 13, 2013
A day when I love being a mommy
Had such a wonderful day with my son today - brunch with friends, trip to the zoo, cuddles on the couch... Hope mommyhood with my little heart baby is every bit as good!
Thursday, January 10, 2013
Could use a nap...
Finding this pregnancy much more tiring than the first. Maybe its just because I'm older. Or because I have a two year old. Or because of all the stress over #2. But in any event, I'm finding that my to do list is not getting to done, because my body is not letting me do everything I'd like to.
So while my type A personality is adjusting to that new reality, I just have to express what a useful resource the Baby Center Heart board is: http://community.babycenter.com/groups/a5055/babies_and_children_with_heart_problems
Both reassuring stories and incredibly practical advice from parents who have gone through this. I mentioned the response to my post about working and dealing with a heart baby and have gotten some very useful responses. Feeling much more like I'm not alone in this.
So while my type A personality is adjusting to that new reality, I just have to express what a useful resource the Baby Center Heart board is: http://community.babycenter.com/groups/a5055/babies_and_children_with_heart_problems
Both reassuring stories and incredibly practical advice from parents who have gone through this. I mentioned the response to my post about working and dealing with a heart baby and have gotten some very useful responses. Feeling much more like I'm not alone in this.
Monday, January 7, 2013
Happy happy joy joy!!!
Negative for DiGeorge!!!!!!!
This news was revealed to me over IM while I was in the midst of our annual conference. Those sitting around me were polite enough not to question why I shed a tear or two during a dry discussion on federal tax policy.
Strange position to be in when you find yourself thinking, well, at least the baby ONLY has to have Open Heart Surgery. But that is very much the way I feel.
Feel a renewed sense of excitement about bean and the pregnancy a.d the whole shebang!!!!!!!!
Sunday, January 6, 2013
The Big Easy and the Less Easy
I'm here on business in New Orleans, enjoying a dinner out with my pregnant co-worker, due the same week, where we got to talk about mommy stuff. Really enjoying catching up on movies in my hotel room - perhaps a lame way to enjoy the Big Easy, but I've been here before and movies are a luxury parents of a toddler seldom get to enjoy!
I am finding the board on Baby Center for parents of CHD babies to be chock full of useful information. One of my practical concerns is, if Bean doesn't have heart surgery for a while, what do we do for childcare before surgery? I asked this question on the board and got a lot of responses, including this very helpful response from a mom whose baby (a beautiful little boy who looks healthy and happy post-surgery!) was born with AVSD and a club foot (sound familiar?):
"My son was also born with an AVSD w/o DS. I went back to work after 12 weeks. We asked our cardiologist about daycare and he said he was fine to attend presurgery. We used a daycare center and they were completely fine with having him there. He eventually was put on oxygen at 5 months due to Pulm HTN until surgery at 7 months. He stayed in DC the whole time until the day before his cath which ultimately determined he needed surgery that week. Post surgery our cardio wanted him out of DC for 8 weeks at which time he went back, in the fall, off oxygen. He did receive Synagis the winter before surgery and the winter after surgery."
Found this to be a very reassuring answer! I don't know if it will work this way for us, but at least, in theory, it can be done!
I am finding the board on Baby Center for parents of CHD babies to be chock full of useful information. One of my practical concerns is, if Bean doesn't have heart surgery for a while, what do we do for childcare before surgery? I asked this question on the board and got a lot of responses, including this very helpful response from a mom whose baby (a beautiful little boy who looks healthy and happy post-surgery!) was born with AVSD and a club foot (sound familiar?):
"My son was also born with an AVSD w/o DS. I went back to work after 12 weeks. We asked our cardiologist about daycare and he said he was fine to attend presurgery. We used a daycare center and they were completely fine with having him there. He eventually was put on oxygen at 5 months due to Pulm HTN until surgery at 7 months. He stayed in DC the whole time until the day before his cath which ultimately determined he needed surgery that week. Post surgery our cardio wanted him out of DC for 8 weeks at which time he went back, in the fall, off oxygen. He did receive Synagis the winter before surgery and the winter after surgery."
Found this to be a very reassuring answer! I don't know if it will work this way for us, but at least, in theory, it can be done!
Friday, January 4, 2013
Three posts in one day - can I call it a hat trick?
Not sure how many opportunities I'll have to post happy news in this blog, so I figured I'd better carpe diem. Had a nice and positive doctor's visit today. Doctor is thrilled with baby's weight progression - moving from 5th to 19th percentile - and thinks getting the amnio was the right decision for my own piece of mind. Heartbeat is fantastic, baby is kicking up a storm, and my own weight gain and blood pressure is right on track.
Nice to leave a doctor's office and not be in tears, for a change!
Nice to leave a doctor's office and not be in tears, for a change!
You can take the girl out of the lab...
For future reference:
J Thorac Cardiovasc Surg. 2011 Jun;141(6):1371-9. doi: 10.1016/j.jtcvs.2010.08.093. Epub 2010 Dec 15.
Surgical management of complete atrioventricular septal defect: associations with surgical technique, age, and trisomy 21.
Atz AM, Hawkins JA, Lu M, Cohen MS, Colan SD, Jaggers J, Lacro RV, McCrindle BW, Margossian R, Mosca RS, Sleeper LA, Minich LL; Pediatric Heart Network Investigators.
Eur J Cardiothorac Surg. 2003 Feb;23(2):187-93.
Surgical treatment of complete A-V canal defects in children before 3 months of age.
Source
Department of Cardiovascular Surgery, University of Padova Medical School, Via Giustiniani, 2, 35128 Padova, Italy. giovanni.stellin@unipd.it
Ann Thorac Surg. 2007 Dec;84(6):2038-46; discussion 2038-46.
Complete atrioventricular canal: comparison of modified single-patch technique with two-patch technique.
Source
Division of Cardiovascular Thoracic Surgery, and Cardiology, Children's Memorial Hospital, Chicago, IL 60614, USA. cbacker@childrensmemorial.org
Sadness and a jumparoo
We never got around to putting away my son's jumparoo. It sits in our bedroom, unused for about 2 years, and Shea enjoys playing with the bells and whistles now and again.
The jumparoo has become Shea's symbolic connection to the new baby. It's hard to know how much he really grasps about his brother or sister coming. He knows that there's a baby in mommy's tummy and that he was once a baby in mommy's tummy. He's felt the bean move and asked if that was because the baby was ready to come out.
But his most concrete discernment of the baby on the way is that someday the baby will be ready to use the jumparoo and he, Shea, is going to help the baby do so. He talks about this a lot, and whenever the baby is mentioned, this is often his frame of reference, "New baby will go in jumparoo and I am going to help baby in jmparoo."
As I consider our broken-hearted, possibly club-footed little one, I sadly wonder when, or if, he or she will be ready to jumparoo. It hit home that this baby will be very different than our first, who was holding his head up on day one, jumparoo-ing so early we had to prop up the seat with a towel and put pillows under his feet, and army crawling all over the house long before we were ready to babyproof.
As I read other heart mom's blogs and their struggle just to get their babies to have enough energy to eat, my heart breaks a little. Even knowing the bean will ultimately be fine and that by the time he or she is a year old, will no doubt be running around and causing as much trouble as his or her older brother.
Hoping Shea has the chance to teach the bean how to jumparoo. Can't wait to take that video...
The jumparoo has become Shea's symbolic connection to the new baby. It's hard to know how much he really grasps about his brother or sister coming. He knows that there's a baby in mommy's tummy and that he was once a baby in mommy's tummy. He's felt the bean move and asked if that was because the baby was ready to come out.
But his most concrete discernment of the baby on the way is that someday the baby will be ready to use the jumparoo and he, Shea, is going to help the baby do so. He talks about this a lot, and whenever the baby is mentioned, this is often his frame of reference, "New baby will go in jumparoo and I am going to help baby in jmparoo."
As I consider our broken-hearted, possibly club-footed little one, I sadly wonder when, or if, he or she will be ready to jumparoo. It hit home that this baby will be very different than our first, who was holding his head up on day one, jumparoo-ing so early we had to prop up the seat with a towel and put pillows under his feet, and army crawling all over the house long before we were ready to babyproof.
As I read other heart mom's blogs and their struggle just to get their babies to have enough energy to eat, my heart breaks a little. Even knowing the bean will ultimately be fine and that by the time he or she is a year old, will no doubt be running around and causing as much trouble as his or her older brother.
Hoping Shea has the chance to teach the bean how to jumparoo. Can't wait to take that video...
Thursday, January 3, 2013
A heartening appointment
So we actually had an appointment in which we received no bad news. Or at least no new bad news.
Baby still a little small, but not alarmingly so. Feet looking a little curved, but doctor felt it's not worth getting worked up about. Everything else looked great. Heart might have a giant hole in it, but it's beating strong!
After a long talk with the doctor, I decided to have the amnio to test for DiGeorge and Noonan. Just for my own peace of mind. Best decision I ever made. Just knowing I'm going to know already makes me feel more peaceful. A bit sore from the amnio, but mentally and emotionally much better.
And the amnio was a walk in the park compared to the CVS. Easy, peasy, lemon squeezy!
Loved the doctor we saw today. He basically said, "What can we do to make you feel better?" Imagine that, a doctor who actually wants to make you feel better!
In final good news, I still have an anterior placenta, which explains why I'm not feeling the bean kick as much as I felt the boo.
Two weeks until we get the test results back, but don't feel like I'm going to spend them stressing. We'll see!
Baby still a little small, but not alarmingly so. Feet looking a little curved, but doctor felt it's not worth getting worked up about. Everything else looked great. Heart might have a giant hole in it, but it's beating strong!
After a long talk with the doctor, I decided to have the amnio to test for DiGeorge and Noonan. Just for my own peace of mind. Best decision I ever made. Just knowing I'm going to know already makes me feel more peaceful. A bit sore from the amnio, but mentally and emotionally much better.
And the amnio was a walk in the park compared to the CVS. Easy, peasy, lemon squeezy!
Loved the doctor we saw today. He basically said, "What can we do to make you feel better?" Imagine that, a doctor who actually wants to make you feel better!
In final good news, I still have an anterior placenta, which explains why I'm not feeling the bean kick as much as I felt the boo.
Two weeks until we get the test results back, but don't feel like I'm going to spend them stressing. We'll see!
At the doctor's office
A morning to two sick pets and much cleaning of dog poop. But big hugs from an adorable toddler, which helped
Now its just a matter of minutes until the time of terror... Wish me luck world.
A 4 AM heart to heart
See what I did there with that blog post title? Started with my insomnia to subtly give the lead into the tale of our heart baby... At 4 AM, that seems like a brilliant creative breakthrough.
The ultrasound is in 6 hours. Not that I'm counting.
Really, this post should be titled, "Why you should never go to an US appointment alone"
So I scheduled the echocardiogram and the 20 week ultrasound. Unfortunately, the only date available was a day my husband had a business trip out of town. "No problem," I breezily told him. "We've already had the crisis of our pregnancy, with the NT scare, this will just be routine, and yo.u'll get to see the baby again at 24 weeks, when I have the next US."
This was a Bad Idea.
The echo and US combined took forever. I was happily enjoying spending so much time watching my little one wiggle, until the parade of bad news started:
US Tech: "Baby is measuring small"
Cardiologist: "I can't get the best picture, but I'm almost certain your baby has a major heart defect. Either a ventricular septal defect (VSD) or, more likely, an AV canal defect, which will require surgery soon after birth."
Fetal medicine specialist: "Oh yeah, there might also be something wrong with your baby's feet and have you ever heard of the really scary diseases called DiGeorge and Noonan's syndrome?"
Cue terror and waterworks. Although I was very proud of myself for holding it together long enough to ask many, many questions about open heart surgery (or OHS, as the cool kids call it) in infants. Which was generally reassuring. Except for that whole MY BABY HAS A GIANT HOLE IN ITS HEART AND IS GOING TO NEED OPEN HEART SURGERY!!!
Crying at the doctor. Crying on the phone with my husband. Crying at work. Crying on the shoulder of the friends who were amazing enough to come keep me company that night. I was a mess.
Fast forward to today: we have since confirmed an AV canal defect, A.K.A. atrioventricular septal defect (AVSD) and learned a lot about treating it. Basically, that's all a good news story, Prognosis for surgery and life after surgery is excellent. I can totally wrap my head around the heart thing. Scary as the thought of someone cutting into my tiny baby is (you should see the pictures of the scars on the internet. Seriously, google it), I feel pretty confident that we can take care of the AVSD and move on with our lives. Hellish year and then back to normal.
So why am I up at 4 AM stressing about the US?
Well, two main reasons. First, it's now been a long string of really craptastic doctor's appointments. So every appointment feels roughly like standing on the edge of a giant crevasse, waiting for someone to shove you (and this from someone with terrible fear of heights and vertigo!) Just waiting for the other shoe to drop... I'm preparing myself for news of club feet, intrauterine growth restriction, and a host of other problems to be revealed at yet another doomsday appointment. (At least I'll have the moral support of my husband this time!)
Second, or maybe just 1B, I have become totally paranoid that the baby may have DiGeorge syndrome. Other than the heart defect, (and AVSD is not closely associated with DiGeorge, although heart defects in general are) and the brief mention by the doctor, I have no reason to believe this, I just can't shake the worry about it. And DiGeorge would be a Big Deal. A Bad Disease. One that I'm not sure we're equipped to handle - which leads me down a road I can barely think about, especially as I write this and the baby is doing little flip flops in my belly. Hello, bean.
So what's the game plan? Ask at the US to look for other signs of DiGeorge - lack of thymus, cleft palate, etc. (Didn't see any sign of cleft palate at the previous US, so that's reassuring.) If paranoia continues, consider amnio, although after my CVS experience, this is not high on my list of must-have experiences. Try to breathe.
Only 5 and a half hours to go...
The ultrasound is in 6 hours. Not that I'm counting.
Really, this post should be titled, "Why you should never go to an US appointment alone"
So I scheduled the echocardiogram and the 20 week ultrasound. Unfortunately, the only date available was a day my husband had a business trip out of town. "No problem," I breezily told him. "We've already had the crisis of our pregnancy, with the NT scare, this will just be routine, and yo.u'll get to see the baby again at 24 weeks, when I have the next US."
This was a Bad Idea.
The echo and US combined took forever. I was happily enjoying spending so much time watching my little one wiggle, until the parade of bad news started:
US Tech: "Baby is measuring small"
Cardiologist: "I can't get the best picture, but I'm almost certain your baby has a major heart defect. Either a ventricular septal defect (VSD) or, more likely, an AV canal defect, which will require surgery soon after birth."
Fetal medicine specialist: "Oh yeah, there might also be something wrong with your baby's feet and have you ever heard of the really scary diseases called DiGeorge and Noonan's syndrome?"
Cue terror and waterworks. Although I was very proud of myself for holding it together long enough to ask many, many questions about open heart surgery (or OHS, as the cool kids call it) in infants. Which was generally reassuring. Except for that whole MY BABY HAS A GIANT HOLE IN ITS HEART AND IS GOING TO NEED OPEN HEART SURGERY!!!
Crying at the doctor. Crying on the phone with my husband. Crying at work. Crying on the shoulder of the friends who were amazing enough to come keep me company that night. I was a mess.
Fast forward to today: we have since confirmed an AV canal defect, A.K.A. atrioventricular septal defect (AVSD) and learned a lot about treating it. Basically, that's all a good news story, Prognosis for surgery and life after surgery is excellent. I can totally wrap my head around the heart thing. Scary as the thought of someone cutting into my tiny baby is (you should see the pictures of the scars on the internet. Seriously, google it), I feel pretty confident that we can take care of the AVSD and move on with our lives. Hellish year and then back to normal.
So why am I up at 4 AM stressing about the US?
Well, two main reasons. First, it's now been a long string of really craptastic doctor's appointments. So every appointment feels roughly like standing on the edge of a giant crevasse, waiting for someone to shove you (and this from someone with terrible fear of heights and vertigo!) Just waiting for the other shoe to drop... I'm preparing myself for news of club feet, intrauterine growth restriction, and a host of other problems to be revealed at yet another doomsday appointment. (At least I'll have the moral support of my husband this time!)
Second, or maybe just 1B, I have become totally paranoid that the baby may have DiGeorge syndrome. Other than the heart defect, (and AVSD is not closely associated with DiGeorge, although heart defects in general are) and the brief mention by the doctor, I have no reason to believe this, I just can't shake the worry about it. And DiGeorge would be a Big Deal. A Bad Disease. One that I'm not sure we're equipped to handle - which leads me down a road I can barely think about, especially as I write this and the baby is doing little flip flops in my belly. Hello, bean.
So what's the game plan? Ask at the US to look for other signs of DiGeorge - lack of thymus, cleft palate, etc. (Didn't see any sign of cleft palate at the previous US, so that's reassuring.) If paranoia continues, consider amnio, although after my CVS experience, this is not high on my list of must-have experiences. Try to breathe.
Only 5 and a half hours to go...
Wednesday, January 2, 2013
The trouble begins...
I am nearly 24 weeks pregnant and facing yet another terrifying sonogram tomorrow.
When people warned me that a perfect first child meant a troublesome second, I didn't realize they meant it began in utero. It all started normally enough. Peed on a stick, learned we were pregnant with baby #2 after many months of trying, went through the normal "Super happy and excited, oh my god, what have we done?!? Super happy and excited!!" roller coaster of learning about a new baby.
Our son, who is now 2 1/2, gave us a scare in the first few weeks of his life, when they couldn't find a heartbeat. Turns out the dates were wrong, and I was less pregnant than expected. Once we saw that first heartbeat, it was smooth sailing. Easy pregnancy and the world's happiest, most easy going boy.
That was my expectation for the second as well. It almost seemed destined when, in an odd twist of fate, we learned our second little one was due on exactly the same day as our first: April 26th. Our joke: this is what happens when you cross someone with a planning degree (my husband) and a Ph.D. in reproduction (me).
I felt greatly reassured after that first 8 week ultrasound when we saw the heart beating, nice and strong. Despite the morning sickness that was orders of magnitudes worse than the first time and the overwhelming fatigue, I was ready to settle in for another drama-free pregnancy. My excitement was magnified when I found out I had a coworker due the same week (and, as it turns out, two male coworkers whose wives are also due around the same time).
October 16th was the first bad day.
My 12 week NT scan showed a thickened nuchal translucency (3.6 mm). The US tech got very serious and every worse case scenario flashed through my head: Down syndrome, trisomy disease, chromosomal abnormality....
October 17th: Our 8 year wedding anniversary and one of the most packed days of my professional career. I was supposed to host a stakeholders meeting of nearly 100 people, involving high level agency officials. But then the doctor's office called and said they could get me in for a CVS.
A few frantic smart phone emails later, we were off to the CVS. The excruciatingly painful, long and agonizing CVS. Turns out my c-section had left lots of scar tissue and I was not an easy mark. Even worse was the following two days of both physical pain (I felt like I had been hit repeatedly in the stomach by a battering ram) and the anxiety of waiting for test results.
Saturday, October 20th - Good news!!! Initial CVS results are normal. No Down Syndrome. No trisomies! Hooray!
The genetic counselor warned, "Thickened NT is also associated with heart defects. You should plan on coming in for a 20 week fetal echocardiogram."
Breezily, arrogant scientist that I am, I said, "I'm not worried about a heart defect. You can fix a heart defect. It was the stuff you couldn't fix I was scared of."
Famous last words.
When people warned me that a perfect first child meant a troublesome second, I didn't realize they meant it began in utero. It all started normally enough. Peed on a stick, learned we were pregnant with baby #2 after many months of trying, went through the normal "Super happy and excited, oh my god, what have we done?!? Super happy and excited!!" roller coaster of learning about a new baby.
Our son, who is now 2 1/2, gave us a scare in the first few weeks of his life, when they couldn't find a heartbeat. Turns out the dates were wrong, and I was less pregnant than expected. Once we saw that first heartbeat, it was smooth sailing. Easy pregnancy and the world's happiest, most easy going boy.
That was my expectation for the second as well. It almost seemed destined when, in an odd twist of fate, we learned our second little one was due on exactly the same day as our first: April 26th. Our joke: this is what happens when you cross someone with a planning degree (my husband) and a Ph.D. in reproduction (me).
I felt greatly reassured after that first 8 week ultrasound when we saw the heart beating, nice and strong. Despite the morning sickness that was orders of magnitudes worse than the first time and the overwhelming fatigue, I was ready to settle in for another drama-free pregnancy. My excitement was magnified when I found out I had a coworker due the same week (and, as it turns out, two male coworkers whose wives are also due around the same time).
October 16th was the first bad day.
My 12 week NT scan showed a thickened nuchal translucency (3.6 mm). The US tech got very serious and every worse case scenario flashed through my head: Down syndrome, trisomy disease, chromosomal abnormality....
October 17th: Our 8 year wedding anniversary and one of the most packed days of my professional career. I was supposed to host a stakeholders meeting of nearly 100 people, involving high level agency officials. But then the doctor's office called and said they could get me in for a CVS.
A few frantic smart phone emails later, we were off to the CVS. The excruciatingly painful, long and agonizing CVS. Turns out my c-section had left lots of scar tissue and I was not an easy mark. Even worse was the following two days of both physical pain (I felt like I had been hit repeatedly in the stomach by a battering ram) and the anxiety of waiting for test results.
Saturday, October 20th - Good news!!! Initial CVS results are normal. No Down Syndrome. No trisomies! Hooray!
The genetic counselor warned, "Thickened NT is also associated with heart defects. You should plan on coming in for a 20 week fetal echocardiogram."
Breezily, arrogant scientist that I am, I said, "I'm not worried about a heart defect. You can fix a heart defect. It was the stuff you couldn't fix I was scared of."
Famous last words.
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