The Big Reveal and A Big Win

This weekend was a busy one for us.  Being this is our last baby, we decided instead of calling everyone to tell them about baby's gender that we would have a party to celebrate and share with our entire family at the same time.  It's a new "trend" in pregnancy right now, to have these parties called Gender Reveal parties. 

Normally, a gender reveal party works like this:  Mom and Dad get the ultrasound done, and the technician writes the gender on a slip of paper then gives the parents-to-be an envelope containing the gender.  Said envelope is delivered to a baker who then makes a delicious beautiful cake with the inside tinted either pink or blue.  (You know, blue for boy, pink for girl).  Family and/or friends are invited and mommy and daddy cut the cake to reveal the gender to themselves and everyone else at the same time.  While I have no issues with this, it wasn't the right way for us to go.  I knew myself, and while I would be happy for a little boy I knew finding out in front of everyone would not be a good idea for me.

So...we revamped the method a little!  I got some boy and girl balloon:

Then stuffed the balloons with little papers. The papers were carefully folded, so no peeking would occur through the balloons....and revealed the gender and name of baby on the inside.  The idea is, that everyone picked their "team" color balloon (team pink or team blue) then they would all pop them together and find out.  Let me just say, this turned out fantastic and so. much. fun.  My shortsightedness in remembering to find objects to pop the balloons with also worked in our favor because everyone could be creative about how they popped their balloon - of course they all wanted to be first!

So....we gave the okay to pop the balloons....

The whole thing really was a huge success.  We had such a great time just eating and spending time with family, plus being able to share this with everyone together was something I would recommend to every mommy-to-be.  It was even better for me then sharing we were welcoming the first baby grandson to both sides of the family. 

While the entire day was utterly fantastic, I would have to say one of the best parts for me happened when I laid down to go to bed that evening.  Because while I was entertaining and making sure everyone was eating - Ayden was playing with his aunts, uncles, and grandparents.  So much so, that it wasn't until I thought back on the day that I realized not once did I hear him scream, cry, or whine.  Not one time did I have to attend to him breaking down and get him out of the hustle and bustle of having 15 extra people in our house.  He didn't even freak out when everyone popped their balloons - something which normally would send him into hysterics.  Look at the pictures above during the balloon popping and you can see him just hanging out in the middle of the crowd.  I'm just so proud of him for how well he did he entire day.  And I look forward to more days like this, because for once I didn't worry about how to help him enjoy the day - he did it without any help.   It's these type of days and moments that make all that work worthwhile.  It reminds me that there is hope when we have bad days and helps me to keep going.  It is worth it.  There is hope.

And as for Ayden...he's going to be a big brother again........

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Only this time, it will be to a little sister! (You didn't think I'd forget to share this part did you?!)

If you are interested in seeing the rest of the pictures from our big party...you can view them here: BBQ and Gender Reveal Album

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Where Have We Been?

Seems like 2011 keeps finding ways to knock me down, but I keep on getting up!

My newest adventure involves yet another trip to the emergency room followed by another surgery.  I was fine last Saturday morning even participating in the JDRF walk with my nieces' team and spending the afternoon with family.  By the time 7 PM hit though, I was in so much pain I could barely move - abdominal pain is nothing to joke about under normal circumstances, but being pregnant, I called my OB who had me come in to get checked out.  I was hoping it was just that I have over-done it like my OB suggested at first, but I was fairly certain that was not the case. 

Luckily baby was dong perfectly fine, and we found a nice strong heart beat right away.  No contractions.  No bleeding.  Lots of abdominal pain though!  They quickly rule out any type of bladder or kidney issues and by the time my blood work came back it was not a surprise to see an elevated white blood cell count.  I was admitted overnight and sent to ultrasound to check for appendicitis.  The ultrasound was inconclusive (and very painful I might add) as they couldn't find my appendix.  A CT scan usually is the next step, but being pregnant we of course wanted to avoid that.  The doctor decided to wait until morning and check my blood again to see what we found, of course keeping me on some good pain killers overnight.  Blood work was again inconclusive in the morning, so it was decided to send me for an MRI.  Ever had one?  They are pretty terrible.  About an hour of sitting totally still with no one around while in a big tube magnet. I shudder to think I"ll ever need one again.  Thankfully, the results of the MRI were much better than the ultrasound and we found I for sure I had appendicitis.  While it's never "good" to have something like this, the timing as far as the pregnancy is concerned couldn't have been much better. 

I went in for surgery that afternoon, and came out perfectly fine with a very healthy baby.  The concern of course was that the surgery would irritate my uterus enough to send me into preterm labor, but despite a few contractions we never had issues.  I'm now a week post-surgery and while very sore, I'm doing well all things considered.  Baby is kicking away and very healthy - we had a level II ultrasound a few days ago that was pre-scheduled and did go very well.

We're hoping the rest of the pregnancy proceeds without any other complications.  I'm halfway there, so it's looking good.  Still considered high-risk due to some other issues, but all this means really is we'll be seeing baby on ultrasound once a month unless something else is detected. 

So...that's been our last week or so!  I hope all of you out there have had much more productive weeks than I have.  Hoping to resume some normal posting in the next day or two.

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Decisions Pt. 2

As I talked about in my last post, Mr Awesome and I decided early on in our marriage to conceive naturally and "take our chances" with the FX mutation.  Ideally, I should have been tested before we started trying for Ayden.  I know Mr Awesome urged me to quite often, but for whatever reasons I didn't. 

When I was pregnant (still in the first trimester) we had me tested and went through genetic counseling.  The genetic counseling was kind of a joke.  We had a counselor who had never heard of Fragile X even before meeting us, so she couldn't really even answer questions we had very well.  It was discouraging to say the least and left us pretty freaked out.  She basically didn't understand that FX was a spectrum disorder, so acted like it was an on/off switch when you hit 200 CGG repeats as to whether you would be totally mentally impaired or not.

The couple days after our appointment were not good ones for us.  Termination was never an option, but we were both scared.  I felt guilty because I hadn't gotten tested earlier even though Mr Awesome had urged me too many times.  Mr Awesome was angry, and I couldn't blame him really.  I knew his anger was a lot because he was surprised by what the genetics counselor said and also because he too was scared.  We certainly weren't sure how we could handle something like what was described to us.  Our emotions calmed down though, and we knew we were in this together no matter what.  I think we both realized that blaming wouldn't help anyone, and made a plan for what we could do right then - including finding a pediatrician knowledgeable about Fragile X.

You can read Ayden's Story to learn more about after he was born...I won't go into it here again.  What I do know is I wouldn't change a thing.  Ayden is so amazing, and sure he has his quirks but they make him our Ayden whom we are so blessed to have.

The decision was a little easier when we decided to have Issac.  I'm actually not even sure we discussed FX at all, just having another baby in general.  We certainly didn't know the full extent of Ayden's FX by that point in time, but I'm not sure that would have changed much either.  My pregnancy was definitely difficult in the aspect that Ayden's major frustrations and screaming started while I was pregnant.  I remember feeling like I was failing him and just very helpless as to what was happening.  Until we had early intervention come in, we really felt it was all behavioral, afterwards it was easier. Issac was born during this time.

We had pretty much decided by this time that we might have another child, but not more than one.  I didn't have baby fever around Issac's first birthday like I did with Ayden.   I also wanted to make sure that Issac started talking, I was always so scared he wouldn't.  (Of course I can't STOP him now!).  Mr Awesome and I had begun talking about another baby and eventually decided we would rather have them closer together as we planned before.  Two years apart seemed good to us (and still does!).  So we began trying again, only to lose a baby due to an ectopic pregnancy.  Then Ayden was diagnosed. 

We discussed PGD while we were at the FX clinic for Ayden.  There were some statements made to us that were...unsettling....that we had to deal with and PGD came up during that.  It was a lot to process, but we never discussed PGD again after that really.  Essentially, between the cost ($9k-$18k for one round, not covered by insurance) and chance of multiples...it wasn't the right decision for us.  There are processes in which they only implant one fertilized egg at a time, but it is more expensive to do it that way and could take more attempts than normal.  I'll have a separate post discussing PGD later, as it is one of the options for FX carriers

So, now we have Baby Car on the way.  (Did I mention Issac named baby....I think it's sticking too, at least until he has a name).  We're very well aware of the chances of having another FX child.  We will not be doing any prenatal screening, but will be testing baby at birth.  The test won't tell us much, but it will give us the chance to get early intervention for even a slight delay.  If I really think about it, it's scary. If the past four years have taught me anything though, it's to take it a day at a time.  I don't know what the future holds for us...who can? I'm just enjoying life, enjoying this new life growing, and enjoying my beautiful, wonderful family.

I'll be putting together more about carrier reproductive options at a later date, but if you're curious now you can always visit the NFXF web page about reproductive options as well.

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Decisions Pt. 1

I mentioned back in this post that we had spent the morning of Ayden's birthday in the doctor's office, and promised more on that later.  Well, today is later and it seems like a perfect day to share. (especially after yesterday's post!)

Some of you that have been reading a while may remember that I have known I was a FX Carrier since I was in high school.  My dad was tested and found to be a carrier which makes me and my two sisters carriers as well.  I was not actually tested though until I was pregnant with Ayden.  I can't say why I chose not to get the test done - maybe it had something to do with getting blood drawn or maybe I was scared at how bad I would be.  Regardless, it wouldn't have changed anything for us.  We wanted four children (at the time), and from the information I was given seven years earlier my risk was fairly low.

Just typing that kind of makes me feel like I was naive.  FXS research is changing all the time even now, so you can imagine how much it was changing then!  We opted to not have prenatal testing done, knowing it wouldn't make a difference and we wouldn't terminate no matter what.  The plan was to find a pediatrician who knew a bit about Fragile X an get him tested when he was born.  Turns out our pediatrician didn't know as much as I would have liked, but I'm not sure we could have found one that knew much more or is as wonderful either.  When Ayden was in the hospital, she did an exam and assured us he had none of the physical features and she didn't feel he needed to be tested unless need arose later on.  Of course, we know this observation is totally incorrect now, but at the time it made sense and being new parents we breathed a sigh of relief and relished in our perfect little boy.

We decided to start trying for number two around Ayden's first birthday and were blessed very quickly after that with our second little boy.  No genetic testing this time either, and no worries about FXS in the hospital either.  It was different with Issac because his first week was riddle with other complications. He had some fluid in his lungs and spent a better part of his stay at the hospital in the nursery on an IV and oxygen, then onto the billi lights and daily blood checks for the first few days he was home. It was quite a ride with him and I don't think we even asked about Fragile X.  At this point, Ayden had been in EarlyOn for a few months.

I've said before we were sure Ayden had FXS before he was tested.  We had consciously opted to not test him for a good year because of his tactile defensiveness.   Neither of us wanted to see our little guy strapped down and screaming to get a test that we were pretty certain what the outcome would be.

November of 2010, we decided to have another baby.  We wanted three, and didn't want many years between children.  We knew the risks as we did with both kids (maybe moreso this time).  About a week after we decided to start trying, I got a positive pregnancy test.  Birth control didn't work so well, but the timing was right for us and we were ecstatic.  A few weeks later I had a misdiagnosed miscarriage (the misdiagnosed part was unknown at the time).  Devastating is a mild understatement to what I felt at the time.  The doctors were monitoring me weekly to make sure my hormones returned to normal, but it late January my left tube ruptured at what would have been 13.5 weeks pregnant.  As if the miscarriage wasn't enough, finding out it was actually an ectopic pregnancy was worse - especially when I was quite literally dying of internal bleeding.  Through all of this though, we decided we certainly wanted that third child even more.  We were told to wait 12 weeks for me to recover and then started trying again.

Which brings me to being at the doctor's office on Ayden's birthday....  After a few months of trying, I got a positive pregnancy test in early June.  After one ectopic, I'm considered high risk so I had blood work and ultrasounds to determine where this new pregnancy was at.  My second ultrasound was on Ayden's 4th birthday showing this baby was indeed in the correct place and had a nice strong heartbeat fluttering away.  We decided to tell family and friends at that point, so most people already know, but today I have officially made it through my first trimester!  We are expecting our third (and final) little one in February 2012, and couldn't be more excited.

There are many trains of thought with FXS carriers as to child bearing, and we have taken one path. I will be following up this post later with more on our decision and in the coming months plan to go over other options that carriers have as well.  

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