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Sunday, April 18, 2010

THE BEST HUSBAND IN THE WORLD

It's official...I have the very best husband a girl could ever ask for.  I have always had a very unhealthy love of bacon, but try to avoid it during pregnancy (as well as hot dogs, sausage, ham, processed lunch meats, etc) because of nitrate content.  For some reason I have been struggling with the omission of my 'breakfast meats' this time around far more than I struggled when I was pregnant with Gracie.  This week my husband presented me with a slab of specially made nitrate-free bacon as an early birthday gift (my birthday is not for about 6 weeks).  I could not have asked for a better gift.  :-)   

I am pretty sure that I have been feeling movement for the last wee or so, but it's so hard to tell in the first couple of weeks.  Jellybean's Braxton Hicks contractions have started, right on time.  My BH with Gracie started around this time and continued steadily through the remainder of my pregnancy.  Last time around my midwife said that I have a 'sensative' uterus - we will see how sensative it is this time around.  I am actually hoping that it has calmed down a bit since July.

After the very long Down Syndrome / feeling sorry for myself rant in my last post, I am feeling quite a bit better about things.  Everyone keeps telling me that 'those tests aren't that accurate.'  But here's the thing.  The screen I had done is 85-90% accurate in detecting DS, and only has about a 5-6% false positive rate ('detects' DS when it really isn't there).  So, realistically, if you line me up with 38 other women, there is an 85-90% probability that I will be the one woman in the group whose child is born with Down Syndrome.  Here's the other thing - I am not dealing with just one 'positive' screen; I am dealing with two.  I am dealing with an increased risk this time as compared to last time (Gracie's probabilty was 1:47).  Last, but certainly not least, I am 98-99% certain that I already have one child with Down Syndrome (It's funny how so much now 'hinges' on the fact that Gracie's chromosomal analysis was never run...).  I want with everything I have to believe that this is a false positive screen and that Jellybean does not have DS, but I tend to be a realist.  I am looking at all of the 'evidence' and it certainly does not point in that direction.

All of that said, I am okay with things.  I will have no problem accepting a child with DS, but of course I think everyone would rather have a typically developing child.  At this point, I am going to assume that we are dealing with DS and hope for a surprise at birth.  If Jellybean doe have DS, I will just keep my fingers crossed that it is a chance chromosomal duplication and that we are not dealing with a chromosomal translocation passed on by one of us.  That is really where my biggest hang up has been - the possibility that one of us has the potential to pass DS on to each of the kids that we have.  But all in all, I am much better than I was a couple of weeks ago. 

It's kind of funny how people around us are split between two camps regarding this baby.  With the exception of our immediate family, there doesn't seem to be anyone who really sees Jellybean for what Jellybean really is.  People either feel the need to remind me that Jellybean will not replace Gracie or they feel the need to express that we'll be so much better after Jellybean arrives.  I mean - sure - we will be better in terms of not worrying about Jellybean dying, but we will certainly not be better in terms of Gracie's death.  Having a baby to hold and love and nurture will certainly fill us with love, but it will not 'make everything better.'  Sad thing is, my frustration with this just needs to be internalized since no one gets it, even when it's explained.  And quite certainly, no one has any idea what I am talking about when i tell them about the new rush of 'missing Gracie' emotions that will likely emerge when we bring Jellybean home.  At some point it has to get easier, right??

Monday, April 5, 2010

15.5 WEEK APPOINTMENT & UPDATE

Having a baby - I used to think nothing of it. I used to look at all the _______ (fill in your own unpleasant word) people walking around with a gazillion kids and think 'Gee, if people like that can have kids, I can certainly manage.'  I'm not sure what the hell I was thinking.  As anyone reading this already knows, many of the wrong people out there are having babies effortlessly while the rest of us get to sit and wonder 'WTF???'

I have a feeling that this post might be a little scattered - I will do my best to stay on track.

An update to the first trimester screen information that I posted a week and a half a go....  we have discussed the amnio option over and over and over and came up with a list of pros and cons...We beat the subject until it was dead - and it is dead.  We have decided that the cons far outweighed the pros, and we have decided against the amnio.  Although it would be nice to know now, rather than 5 1/2 months, whether or not Jellybean has Down Syndrome, knowing for sure will not change anything about this pregnancy or how it is monitored.  So, no big fat needle.  For those who are interested, our lists are below...

PROS:
  • Definitive answer an Down Syndrome, and the type of Down Syndrome if applicable.
  • Possible green light for genetic testing on us during the pregnancy - just to get it out of the way before the baby comes, especially if the baby is going to have additional needs due to DS (that will take 100% of our focus instead of allowing some for genetic issues).
  • Definitive answer on baby's sex without waiting for/relying on ultrasound.
  • Definitive answer on baby's blood Rh factor. Since I am Rh negative and Jeff is Rh positive, I will have to have a RhoGAM shot at the time of the amnio, but it would be nice to know for the rest of the pregnancy if the baby is Rh negative or Rh positive so I knew for sure if the RhoGAM shots were necessary. 

CONS:
  • 1:500 chance of pregnancy loss
  • big fat needle being stuck in my belly
  • RhoGAM shot necessary with the amnio
  • feeling like I have become a 'sheep' - let me know if you don't understand this and I will explain it. Some people know what it means, some don't. :-)

We had a midwife appointment today.  Jellybean's heartrate was 145 bpm and there was no trouble finding the heartbeat at all.  Yay!!!

Presently there are 3 OBs, 3 midwives, 1 PA-C and 2 CRNP in our practice.  There is also a MFM group from 90 minutes away who sees patients in this office every other week.  We are primarily seeing one specific OB and the midwives, with a few MFM visits somewhere in the mix.  The midwife that we saw today is the one who delivered Gracie.  I just have to say that she rocks, and I am going to be really pissed if she is not the one covering L&D when Jellybean arrives.  Anyway, she was supportive of our decision regarding the amnio, and she then gave me a hug and the most pitiful look when I told her that I was waving my white flag on ultrasounds.  She seemed a little surprised that I am now willing to agree to whatever ultrasound exams are recommended, but at this point I just want to bring a living baby home, so I can't really refuse much of the physically non-invasive stuff.  (This kind of goes with that whole sheep thing referenced above.  Seriously, if you don't know what it mean, ask!!!  :-)

After a little bit of discussion we decided that it would be a good idea to cancel the level I ultrasound that I have scheduled in 4 weeks and replace it with a level II ultrasound with the MFM folks.  This will give us a baseline to compare future ultrasounds to, and it will also allow them to switch over to doppler if they want to look at cord blood flow.  So, level II ultrasound in 4 weeks is the plan; I will see one of the MFM docs that day and then also follow up with one of the midwives.

No noted movement from Jellybean yet, but hopefully soon if I don't have another anterior placenta.  Oh - and I am stuck in that wonderful land of 'none of my regular pants close, but the stretchy band pants are still a little too big'.  We did Bradley classes the first time around, but after doing some reading and talking to some folks, I think that I would like to try Hypnobabies.  I got a fantastic deal on a gently used set of Hypnobabies home study stuff this weekend, and cannot wait for it to arrive so I can check it out!!!  Otherwise, things are uneventful.

Before I close for the night, I think I need to revisit the whole Down Syndrome thing, because for some reason it is really bothering me tonight in a greedy, selfish sort of way.  (I am not looking for a debate on wording, terminology or political correctness here.  I work with about 90 kids, all who have 'disabilities' of some type - some have Cerebral Palsy, some have Down Syndrome, some have Autism, some have Spina Bifeda, some have Muscular Dystrophy, some who have undiagnosed disabilities...you get the idea.  I am pretty fond of most of these kids and have developed some pretty strong bonds with a lot of them; I would never intentionally say something to insult them or lessen the importance of who they are.  Tonight I am just hoping to get some feelings out.) 

When we got Gracie's odds of having Down Syndrome (1:47), it didn't really phase me a whole lot.  Based on my experiences with 'my kids,' and speaking strictly in terms of 'disabilities,' I consider Down Syndrome to be preferable over so many other 'disabilities'. I knew, without a doubt, that bringing a child with Down Syndrome into this family might certainly be challenging, but it would certainly be managable and it would certainly be something that filled us with unending love.  Now I am feeling a little differently.  There is still no doubt that any living child will bring us unending love...but the rest is a little sketchy.  Raising a child with any disability can be quite challenging, above and beyond the normal challenges of raising a child, regardless of the disability.  While we don't know for sure if Jellybean has DS, realisitically it's a good probability.  Simply put, I am struggling with the fairness of it.  We have already had one child - that child very probably (we are about 98 or 99% certain) also had Down Syndrome and that child coincidentally died.  How many more challenges do we really need after having a dead child?  When do our challenges above and beyond 'the norm' end?  When is it someone else's turn to be challenged?  I worry, especially if Jellybean does have Down Syndrome that there is a genetic predisposition for all of our children to have DS.  If that is the case, it opens so many more questions and uncertainties about what the future holds for those children.  At what point might I get to bring a typically developing child home? 

Selfish, and pretty horrible thoughts, I know.  But I also feel like they are normal to a degree.  I love Jellybean, regardless of who Jellybean is destined to be.  But I seriously want the best that can possibly be for Jellybean, and I want a life as free from extra challenges as possible - for Jellybean and for our entire family.  I never felt any of this with Gracie, but now I am feeling it pretty strongly.  I think that some of it is anger still creeping up from our experience with Gracie, which is 'normal', but feeling this way still bothers me.  I hope it passes, sooner than later, and I can concentrate on all the upcoming positives of the rest of Jellybean's time in my belly and our anticipated homecoming!  Thanks for letting me vent, girls!