Tag Archive: Rants


Comments

Hey everyone!

Since Darrell and I had the issue with the website at the beginning of the month, we have gotten a few comments that were questionable to us, so they were marked as spam. If you have commented and don’t see your comment, let me know so that I won’t mark you as spam. 🙂

Most of the comments really did look like spam. The only one was questionable was this one:

“There is no definite estimate of exactly how accurate ultrasound is at detecting disabilities, and there are both false negatives and false positives. As far as detecting fetal abnormalities goes, several points have to be bornt in mind :a) Not every problem can be diagnosed with ultrasound — conditions which do not manifest as a structural or gross functional abnormality (such as a very abnormal heart beat or mental retardation) may be missed.b) Not every problem which can be detected will be diagnosed. For example, in many ultrasound examinations the baby’s fingers and toes are not counted, even though it is possible to do so should it be necessary.c) The ability to detect abnormality in the fetus at an ultrasound exam depends on a number of factors, such as the size and position of the fetus, the amount of amniotic fluid around the fetus, the body habitus of the mother (whether she is fat or slim), the type of equipment used, and, most importantly, the skill and experience of the operator.d) Some problems (such as anencephaly) are more readily diagnosed than others (such as cleft palate).The accuracy of ultrasound for dating a pregnancy depends on at what point during the pregnancy the ultrasound is taken. Pregnancy dating is most accurate during the first eighteen weeks of pregnancy. Measurement of the sac at five to seven weeks is not accurate. Measuring the crown-rump length gives an accuracy of plus or minus three days at seven weeks; this test can be used from the seventh to the fourteenth week. Between fourteen and twenty-six weeks, measurements of the biparietal diameter, the femur length and abdominal circumference are generally used. The accuracy is plus or minus seven to ten days. The accuracy further declines with advancing gestation age.”

Now I am pretty sure it is either Spam or someone who just hasn’t read the blog, but I feel like I need to answer these questions/statements.

#1 – We are well aware that there is no estimate at exactly how accurate an ultrasound is at detecting disabilities. It really depends upon the ultrasound and how good the technician is. Our first wasn’t diagnosed with his fatal birth defect at any of his ultrasounds, so we know all about false negatives. It is because of the chance of false positives that we didn’t do any of the other testing that we were asked about during our first pregnancy. So this pregnancy, we do keep in mind that there are chances for false positives/negatives, but we are seeing a higher risk doctor with a better ultrasound machine and we are seeing him more often to make sure that everything still LOOKS like it is going normally.

a) At this point in our pregnancy, we aren’t to concerned with the other abnormalities as if they are found, most of them are found after birth and many of them can be treated fairly successfully.

b) Many normal ultrasound examinations don’t count fingers and toes, but because of our history (Amniotic Band Syndrome), our MFM does to make sure that there aren’t any bands constricting baby. This is really important because Amniotic Bands are really hard to see on ultrasounds unless they are constricting baby, so it is something the doctor is aware of and is looking for.

c) We are aware of this as per our history where we had a doctor with an older ultrasound machine and a very picky child with our first, so no abnormalities were seen even though his brain was growing outside of his skull. That is why this pregnancy we are seeing a MFM every 4 weeks for an ultrasound to make sure that everything is going like it should be. If anything seems to change between visits, the MFM has assured us that he will up our visits to keep up with the progress of baby.

d) We know that it doesn’t take much time before baby does a lot of changes. We are being very closely monitored and they are measuring things every 4 weeks. By 22 weeks, we will have had 5 ultrasounds and each ultrasound measures baby a little different. We aren’t concerned with pregnancy dating because we have done infertility treatments, so we know EXACTLY when we conceived. Our only concern/reason for the ultrasounds is to make sure that baby does not have a fatal birth defect. We are just hoping to have a living, breathing baby who we will get to raise by the end. Granted, we hope for a healthy baby, and getting our multiple ultrasounds is currently the only thing we can do to make sure that baby is ok. There is no idea on why Amniotic Bands happen or what causes them and many people who have them don’t have the bands affect the baby. We are some of the “lucky” few and knowing that we did everything we can to take care of our children is what we want. These ultrasounds are our way of taking care of this child.

If, by chance, we end up with ABS again and it is caught early enough, we have an option to go in for fetal surgery to have the bands cut. This is a risky surgery, but we have done research on it (even knowing that very few mothers have it happen more than once) so we would be prepared if it happened again. We would probably only go in for surgery if the bands are constricting baby’s head or umbilical cord. Possibly hands and feet, but it really depends on when the bands happen and how they will affect baby as the surgery has a small chance to actually put you in preterm labor and possibly deliver baby. There are always risks associated with everything, but you have to weigh them against what would happen if you don’t take that risk.

So that is my response to the comment. I wasn’t sure if I would post it, but I feel that I needed to be open about this and to address this issue in case there are others who happen to stumble across this page and who might have these same ideas.

Today is exactly 3 years from the day we started trying to conceive. We spent the first 6 months not trying, but not preventing since we knew it would take some time for my body to reregulate after 5 years on birth control.

Then we started actively trying, found out about infertility, had a negative IUI cycle, had a canceled IUI cycle, finally got pregnant with our third IUI cycle. Then had a miscarriage at 7 weeks, had a stillbirth at 29.5 weeks, and are back again in our treatments with IUI #4.

It has been a long road and one a lot longer than we expected.

Here’s hoping it doesn’t take another 3 years before we get a happy ending.

Mixed Blessings

Today is a mixed blessings sort of day.

I switched all of my calendars to August yesterday and noted that we were almost to our due date. It made me think a little bit about whether Pixel would have been an early baby or a late baby. I should be prepping the house for my mom and sister to come visit, but instead it is a complete mess. Well, maybe not completely as we are getting ready for a garage sale next weekend to get rid of a bunch of stuff in preparation for a move back to California in the next 12 months.

But just switching those calendars made me sad.

Then of course, today Aunt Flo had to come visit. There is an upside and downside to this. Downside is that I should be fat and pregnant and we should be doing our final preparations for baby. Upside is that I am already back on my normal cycle. Being back on a normal cycle makes it a lot easier for us to schedule procedures and gives us a better idea of dates. Many women don’t get back onto their normal cycles until about four months after a stillbirth.

So if we go ahead and try again in September (we are still in talks and nothing has been decided), then our cycle should start up Labor Day Weekend. There are all sorts of if’s and’s and but’s in this situation. If we decide to try again in September and Aunt Flo comes back when she is suppose to, then we have to hope the doctors office is open over Labor Day weekend. And then if the medication works like it did in November, and a pregnancy takes, we could be looking at a due date of June 5. But if the doctor’s office is not open over Labor Day weekend, then we would have to move the medication out 2 days and take clomid days 5-9 instead of 3-7. I don’t know how that would affect things as we have never done that before. Or we could just wait another month and then I would be due July 4.

Honestly, if we don’t try again in September, I am thinking we won’t try again until January. I am almost against trying in October because I don’t want a Fourth of July baby. I have nothing against a Fourth of July baby, but our niece is a Fourth of July baby, and my cousin’s girl is a Fourth of July baby. So our baby would be the third baby on my side to be born on Independence Day. Granted, many babies aren’t born on their due date and if we ended up with multiples it definitely wouldn’t happen, but I’m not sure if I want to take that chance.

November is pretty much out of the question as I would be due around the same time Pixel was due. I don’t know if I could handle meeting all of the same milestones at the same time again. A pregnancy will be hard enough without it.

We could probably think about in December, but it would definitely depend on when things happen as the holidays are a bigger time for people to take time off. So January it would be.

I know that these are a lot of what-ifs. I am hoping that we are leaning more towards September as the first six months after a delivery is when a woman is considered more fertile. That is how things happened in November. I had my HSG (Hysterosalpingogram) in August and you are considered highly fertile during the next three months as that pretty much cleans out the tubes.

I have been spending a lot of time thinking about all of these things lately. We have one more vial of sperm on ice. After we do that, then we have to save the money to buy more vials but since our donor is no longer active, we also have to decide on a new donor. It took us almost two months to decide on the donor we have. There are a lot more things we have to decide on if the next try doesn’t work, but we are also kind of hoping to try this last time before we leave Texas. The only reason for that is because the vial is already at the doctors office and we love our doctor. Either way, we shall see.

 

Dr. Google

I should know better than to spend hours upon hours of my time on Google. But it seems to be what I do.

I started spending time on Google after we got our initial Infertility Diagnosis. It wasn’t a bad thing since googling was what made us ask the OB for a referral to a urologist to see what was wrong.

Urologist said it was Primary Testicular Failure. Googled that to find out that it was just a blanket diagnosis.

Spent more time on Google and had OB refer us to an RE. (Best google info ever!!!)

RE sent us to another urologist who gave us actual diagnosis – Klienfelter’s Syndrome.

Googled that to find out what we would have to watch out for (if anything) with the syndrome.

Used Google to find donor sperm.

Used Dr. Google to see what I was up for in the IUI and what to expect. Spent many hours reading about other women who went through the same thing.

Used Google to determine if beta numbers were good. Used Google to determine if a heartbeat was possible in Bit. Then I stayed away from Google. Things were looking good and we were seeing a doctor twice a month. I wasn’t worried and I had my innocence that once you passed stages you were in the clear.

*poof* – There goes my innocence.

I have used Dr. Google many times since we lost Pixel. I have googled about Encephaloceles, Amniotic Bands, How to prevent it from happening again, other mothers who went through the same thing, and lastly, when to try again after a stillbirth.

I know that I shouldn’t take what I read as whole truth. You can find something to prove what you want no matter what it is. I know that the Encephalocele and Amniotic Bands weren’t my fault, but I wanted to know if there was something I could have done differently.

Some websites just recommend taking additional Folic Acid (FA) because an Encephalocele is a Neural Tube Defect (NTD). So I went ahead and Googled some more. Turns out FA is a water soluble vitamin, so any extra is released through your urine. I also found out that when you have previously had a NTD pregnancy, then you should up your FA and if you are having twins you should up your FA to twice the dose. So I went ahead and bought some extra FA to take. I know we will be doing more fertility treatments and I know that we have a higher chance of multiples, so it can’t hurt. Especially since most NTD’s happen in the first 28 days.

According to Dr. Google, Amniotic Band Syndrome (ABS) is a rare occurrence and many mothers who have had a baby with it are only like 5% likely for it to happen again (which is the same percentage chance of it happening the first time). No one knows why ABS happens or what causes it. I have spent a lot of time on Dr. Google with ABS because of this. I know that I can take FA and have a smaller chance of having another NTD, but not knowing how to try to prevent what ultimately killed Pixel is hard.

So since we seem to have good luck with small percentages. I googled Encephalocele and ABS together. I don’t know whether that was a mistake or not. I found out that the type of Encephalocele  that Pixel had is actually an occurrence with ABS. When an amniotic band wraps around the head it can cause an Encephalocele. The downside of learning this is that there is no way of telling if the Encephalocele is secondary to ABS or not. So we could have just been extremely unlucky to have had both, or we could just have had one that makes the other occur.

I’m hoping that it is more of the “having one that makes the other occur.” The reasoning for this is that since ABS is so rare and less likely to happen again, if the Encephalocele was due to ABS, then it is less likely that it will happen again. Whereas if the Encephalocele was an actual NTD, then we have a higher percentage of it happening again. I know that there is no way of telling, but for my piece of mind I am leaning towards the NTD being secondary.

I know that I have to wait to see what will happen when we try again, but I also know that I need to relax about it. Last year we were anxious during our first IUI and I spent all sorts of time online looking up everything I could look up. It didn’t work. The second IUI I was just scared that it wouldn’t work and upset about the last one not working. So it was canceled after no response. When we got to our third IUI, I was just positive the whole time that it would work and if it didn’t, we would try again later. It probably isn’t much, but I think that being positive helped relax me and that is why it worked (plus I had a damn good response!). So I need to relax and stay positive and maybe the next cycle will work.

Dr. Google can definitely make you nuts if you let it. I still have a month and a half before we can even begin to try again so I need to start weaning myself from the doctor. He is making me a little bit crazy and I know that I will be be a nervous wreck the whole next pregnancy, but I need to start to relax. I know that I have to enjoy every minute of being pregnant even if it could end. My innocence is gone. I will never be in a “safe” week until a baby is in my arms and screaming. (or at least breathing).

We have a couple of things planned in the next couple weeks to help us get our mind off our due date, so I should be away from the internet for awhile (doubtful, but hopeful).

Strong

During our elongated trip to California, we were told by a lot of people that we were strong to be able to go through what we are going through. We were also told by many that they don’t think they could be as strong as us. I’m sorry, but many times I wanted to laugh at them.

EVERYONE is strong in their own ways. I believe that anyone can be as strong as is needed in any situation. There are many women out there who are put in situations worse than ours and they learn ways to make them strong so they can cope. It is a matter of knowing what you need to do for any given situation.

The only other option besides learning how to be strong is to be weak and let it take over. That, to me, is not an option.

I know I have let it be a main focus right now, but it is what it is.

Losing Pixel has taken away our innocence during pregnancy, but I am learning how to be strong so that it doesn’t take away my happiness. The other option is to let it take over me and not enjoy every minute I have with any future children. Whether it be for a couple days gestation or the rest of my life.

Darrell and I have discussed how we will be anxious during any subsequent pregnancy because of this. We will never feel “out of the woods” until we hear that baby cry. We have to be strong in the situation because if we aren’t, then the only thing to do would be to not try again. We have both always wanted to be parents, so we have learned how to be strong so we will be able to reach that goal to a living child.

Losing Pixel has also made our relationship stronger. We don’t take anything for granted and have learned that you need to enjoy every minute. We work through things so we aren’t focused on the negative.

My opinion on it all is that strong is relative to the situation. You can be as strong as you need to. Just learn what is needed in your situation.

I am lucky in that I have a spouse who is my rock. He helps me get through the rough days. He might not understand all of the emotions I go through, but he understands that I need to go through them and is there for me.

So my hope is that you will all realize that you will be as strong as you need when the time comes.

Don’t feel as though you couldn’t be as strong. The strength comes from knowing your choices.

~S

 

Plugin from the creators ofBrindes :: More at PlulzWordpress Plugins