Don't Know Why

As we have shared the news of Jellybean's heart issues with people, we've have two main questions:

1)  Is it the same thing Lil' Bit has?  No.  If it was, doctors would be writing this up in medical journals right now.

2)  Do they know why both your kids have heart issues?  No.  There are lots of factors that can play a role in children getting congenital heart defects (CHD).  Below is our best understanding of some of those risks and why don't seem to be applicable.

Family History
This is generally the biggest factor, hence the big jump in probability of Jellybean having a heart defect once we discovered Lil' Bit had one.  However, to the best of our knowledge, there are no cases of a CHD anywhere in either my or Phil's family.  So, although Lil' Bit's having one increased the chance Jellybean would also have one, Lil' Bit had no increased risks.

Anti-depressant Use
First, an interesting fact:  The fetal heart is fully formed by roughly 7 or 8 weeks gestation, which is generally long before most people know they are pregnant.  Thus, things that occur later in pregnancy have no bearing on whether there are CHDs.  However, because I was taking my anti-depressant prior to and during that time period, and there is a link between the anti-depressant I have been taking and babies having CHDs, we were concerned about this.  However, the drug I took (my doctor just switched me to something new) is linked to a very specific type of defect which Jellybean doesn't have, and I didn't take any anti-depressants during my pregnancy with Lil' Bit.  I have had at least seven different doctors reassure me that this was not the cause.

Uncontrolled Diabetes
Children born to women whose diabetes was not well-controlled are statistically more likely to have a CHD.  However, because my diabetes is gestational, it is less-likely to be the cause of any issues.  My doctors reassured me this is generally applicable to women who are diabetic pre-pregnancy.  In addition, my A1C test at 3 months gestation revealed a nice low average blood sugar level of like 5.5 (well in the normal range).  Because this test provides an average blood sugar level for the prior 3 months, to the extent that there was any chance I had diabetes prior to pregnancy, it could not even remotely be considered out of control.  This was not the cause of either child's CHD.

Chromosomal Abnormalities
There are lots of chromosomal abnormalities that are associated with CHDs and, because I was 34 at the time the embryos were created, my kids were at a slightly higher risk of such abnormalities than if I had been younger.  Because we are unwilling to risk a miscarriage to have an amniocentesis done, we won't know until after Jellybean is born whether he has any such abnormalities.  We do know, however, that Lil' Bit doesn't have any and, because her embryo and Jellybean's were created at the same time, there is no additional risk for him based on my increased age during his pregnancy--the risk is calculated based on the age of the egg, which was the same for both kids.

IVF
This is the biggy, and it's somewhat controversial.  Initially, there was a fair amount of research that indicated a link between IVF, particularly with the use of ICSI, and CHD.  Subsequent research indicated that the increased correlation could be because of the increase in multiples (twins, triplets, etc).  Other research has shown that although there is an increased incidence of CHD among IVF users, it is because there is an increased incidence for couples who suffer infertility, regardless of the fertility method used to conceive.  Thus, whether Clomid, IUI, IVF, or natural conception after years of infertility, the incidence rate appeared correlated with infertility, not IVF.  We had seen this research and thought that since our infertility issues were largely structural--the result of blocked tubes from a ruptured appendix--rather than genetic or hormonal, we had a lower risk.  Guess not.  In any event, the current understanding is that children conceived using IVF do not have an increased risk of developing a CHD.

So, there you have it.  The only risk factors for CHD that might have some application in our case appear not to be the cause.  And, in truth, I'm not sure it really matters what caused it.  If it turns out I did something to cause it, would being able to beat myself up about it change anything?  No.  Would pointing the finger at IVF help?  No.  I think we would have made the same choices because the odds of any child having a CHD are just so darn small.  So, to the best of our ability, we're setting aside the need to know why it happened and just focusing on what we do from here.  It seems like a much better use of our limited physical and emotional resources right now.

Pregnancy Comparisons

I knew going into this process that pregnancies can be very different.  But, much like when people tell you parenting will be hard, you have no real concept of what that truly means until it actually happens.  So, here I am, wallowing in the midst of a very different pregnancy, struggling to try and enjoy it.  In all honesty, I am glad we decided it would be my last.  Even if we hadn't, my experiences this time probably would have sent me to that decision anyway.  Between periods of bedrest, bleeding, round ligament pain (OMG! I did not have this at all last time and it is horrible--imagine a charlie-horse in your groin every time you stand up or roll over in bed), weekly doctor's appointments, extra ultrasounds and a fetal echocardiogram, and being older with less energy to boot, this pregnancy is anything but a cake walk.  Don't get me wrong.  I am well-aware that it could be much worse.  Still, I just never anticipated quite how different from my first pregnancy this one would be.

What's more, the things that are the same as last time aren't terribly great.  For example:  I once again have a low-lying, anterior (up front) placenta.  Now, the ultrasound tech informed me that pretty much everyone's placenta appears to be low-lying at this point, so she's not worried about that, particularly given that it moved well last time.  There's also nothing horrible about the anterior position of the placenta, except it means I likely won't feel Jellybean moving around until 22 weeks.  That's a bummer because I was really looking forward to feeling baby sooner this time.  I also wish the nurses would stop asking every visit if I can feel baby move--it makes me panic even though I know why I can't feel any movements yet.  Hopefully, things will look better at our ultrasound this week.

What else is the same?  Having gestational diabetes.  Although this time around it's so much more complicated.  Between drawing blood four times a day to test my sugars, and three shots a day of both long and short-acting insulin, I have already had my fill of needles.  I have managed to lump my 8 pills and 3 shots per day into only 6 medication administrations, but add in Lil' Bit's 5 medication administrations and it gets really complicated.  So far, I have missed or slept through multiple blood-sugar tests, two or three fast-acting insulin shots, and two long-lasting insulin shots.  This, even though I set timers on my phone for the two meds I was having the most trouble remembering to take.  I suppose that, on average, this is not a bad record, but it is frustrating all the same.  My doc said that if we can get me to the point where my sugars seem pretty well-regulated, I may not have to test four times a day.  On the other hand, given that my insulin resistance is expected to increase as we go along, I'm not convinced that there will really come a time when my sugars are well-regulated.  Still, I have managed to keep from having to have a fast-acting insulin shot at breakfast, so that's something.

I have been doing pretty well on eating appropriately and have managed to get in a decent amount of exercise by doing nesting/cleaning activities.  Still, I find myself drawn to the things that have less nutritive value.  One day, I caved and exchanged 31 carbs for 15 gummy bears.  Even so, I must be doing pretty good since I've managed to only gain two pounds since February when we started IVF.  I just find it difficult to focus on the good things when I am perpetually watching the clock to determine if it's time again to eat or test and then calculating how many carbs I should be eating at that particular time.

Still, I am doing my best to look on the bright side.  Having an ultrasound roughly every four weeks means lots of chances to see the Jellybean and weekly appointments let me hear the heartbeat.  I'm hopeful that as things progress, I will find it easier to take pleasure in this pregnancy instead of just wanting to get it over with.  Until then, I'll just trying to keep doing what I'm told and follow Dory's advice from Finding Nemo: "Just keep swimming, swimming, swimming, swimming..."

My Reckoning

I have had a life-long love affair with sugar.  When I was younger, I ate 1 lb bags of skittles like they were a single serve and could down a dozen donuts in a single sitting.  It never occurred to me that eating that much sugar could cause problems down the road.  I simply assumed that you either had diabetes, or you didn't.  And, since I didn't, I was fine.  Now, I'm not saying that I would have changed my habits had I known the finer points of Type II diabetes, but it certainly would have left me a little more prepared for now.

So, I did the 1-hour glucose tolerance test and failed by a single point--needed 133 and got 134.  During my visit with the doctor about adjusting my meds, I discussed the additional anxiety I had over having to take the three-hour test.  We discussed my last pregnancy and I indicated that I had had gestational diabetes and been insulin-dependent.  She advised me that chances were strong that I would be again.  This made me sad, but at least she didn't pull any punches.  I took the 3-hour test last Friday and the results came back today.  They were less than stellar.  Whereas with Lil' Bit, I had only failed 2 of the 4 readings, which was sufficient for the diagnosis, I failed ALL 4 this time around.  For fasting, I needed 95, I had 96.  For the 1-hour I needed 172, I had 188.  For the 2-hour I needed 150, I had 154.  For the 3-hour I needed 135 and I had 146.  With the exception of my fasting number, these were not even close.  Ironically, it was my fasting number we had real issues with last time, so maybe this bodes well for being able to control it with diet and exercise this time rather than insulin.  Who knows.  But, since it's been 3 years since I had the diabetes class, I have to go again because "some things have changed."  I still have my meter, so I may be able to just use it rather than having to get a new one.  We'll see.

In any event, what is clear to me is that I need to make major dietary changes.  How I do this I'm not entirely sure.  I am not a huge fan of vegetables and those I like are the starchy ones.  I love fruits, but they are high in the sugar index.  I have already removed soda and french fries.  Although I indulged in a few candy bars yesterday in fear of the results today, I had mostly kicked those out of my diet, too, along with cake, cookies, and the like.  What I'm getting at is that all of the easy changes are done.  There are no more simple solutions.  I have to do the hard work now.  It's even more difficult because last time, since I wasn't diagnosed until 28 weeks, I ignored calorie counts and simply went with anything that didn't raise my sugar too far.  Thus, I figured out that I could have 2 McDonald's Sausage McMuffins with egg for breakfast as long as I took the top muffin off of both of them.  That would keep my numbers in range, which was all I cared about, never mind the huge calorie and fat content.  And then, I proceeded to eat that for many, many mornings.  This time, I'm only supposed to gain 15 pounds the whole pregnancy.  If you know anything about pregnancy weight gain, this essentially means I am losing weight during the pregnancy.  Not gonna happen if I focus solely on how food affects my blood sugar without regard for calories and fat.  

So, I have to do things differently this time.  I don't really have any choice.  I can't even console myself by saying I can stop after 7 months.  Given that this is my second time to have gestational diabetes, and this time I will have it for much longer, my chances of type II diabetes are increasing all the time.  I need to make changes now before it's too late and the diabetes doesn't go away when I'm not pregnant.  This sucks.  I hate it.  But hating it won't change it, and ignoring it won't make it not true.  This is my warning.  It's now up to me to listen and do something about it.  It's time to dig in and figure out how to do things right while I have a chance to protect my pancreas and stave off any more long-term damage.

What's Happenin' Now

My apologies for being so quiet.  First, there was nothing new to report.  Than, life got too crazy to have time to write--but that involves the toddler and will be the subject of another post.  Add in all the extra tired from being pregnant, and *voila* radio silence.

So, focusing on just pregnancy-related news, let's start with the good.  Monday I went to the doctor and was released not just from bed rest, but from the fertility center to my regular doctor.  I also got to cut back on my meds and should be totally off them by the end of April.  The ultrasound showed no problems with the jellybean, who was .61 inches long and had a heart rate of 157.  I called my OB's office and made an appointment for my nurse intake, which occurred today.

It started kind of scary when my blood pressure was 147/89.  Fortunately, we retested at the end and it was down to 126/80.  Phew!  We declined all prenatal testing and just asked for the 20-week ultrasound; same like last time.  I don't care how low the risk of miscarriage is with the testing--any risk is too much.  However, there is one difference this time.  Around the same time as the 20-week ultrasound, I will also get referred to a pediatric cardiologist for a fetal echo-cardiogram to make sure there are no heart issues with the jellybean--there's an increased risk since Lil' Bit has some.

They told me that my next appointment is around 13 weeks, when I'll see my doc and we'll get to hear the heartbeat!  They told me that they changed their "rotation" policy from last time I was there.  Now, most, if not all, of my regularly scheduled appointments will be with my doctor and I will only see the other docs if I have an unexpected issue, or my doc is out for some reason.  I'm excited that I will get to see my doc more often ('cuz she's so awesome!) and, since I met most of the other docs last time, I'm feeling pretty good.

Then, we hit the discussion of the blood tests and the bad news came.  I have to do a glucose tolerance test for gestational diabetes within the next week.  Apparently, they test waaaay earlier than usual if you've had it before.  And, even if I pass, they will still test me again later.  I don't know if they wait and test me again at 28 weeks with everyone else, or if I will get tested several times along the way.  Either way, I'm a little freaked out.  I don't want to have to take shots the WHOLE pregnancy.  Just two months of insulin and testing drove me bananas last time.

Still, I'll do what I have to do.  As I've been telling myself for the last few weeks--we paid good money for me to feel this miserable.  :)  And, hey, at least I'm not on bed rest anymore!