Do We Need Anything???

So I feel really weird addressing this subject in this manner, but I have fielded numerous questions about this over the last several weeks.  I will post the information here so it is readily available for those who want it. 

We will NOT be having a baby shower for Beana, primarily because many of the things that we got at Gracie's shower are still brand new and in the packages.  Also because, as the mother of a wonderful friend says, 'we don't celebrate the baby until the baby is here.'  It's hard for us to not follow that philosophy at this point.

For those who really want to know what we still need in preparation for Beana, our Amazon, Wal-Mart and Babies-R-Us registries are still active.  I assumed that they would be eliminated by the retailers after a certain period of time (Target deleted our registry), but I just found out that I am wrong.  WE ARE NOT ASKING YOU TO BUY US THINGS, but people are starting to ask, so here are the links to what is left of our registries...

We do NOT need any clothing for the first 6 months - I repeat, we do not need any clothing.  I think that we are also good on blankets, changing pad covers and bibs.  For several reasons, we are also planning to do cloth diapering most of the time.  Cloth diapering has actually come into its own, and is quite different than it was 30 years ago...it's not just a piece of cloth, a couple pins and a rubber cover.  It's going to require a little money up front to get our 'stash' built up (compared to just buying disposable diapers as we go over the first few months), but in the long run it will be more cost effective.  Donations accepted if you wish to give them, but they are certainly not expected!!!  :-D 

Amazon.com Registry (click the link)

Most of the stuff here is related to diapering.  

Babies-R-Us (click the link)

There are only a few things left on this list.  The most important at this point are the bottles.  

WAL-MART REGISTRY  (click the link)

Many of the things available for purchase online can be shipped to the local store, eliminating shipping charges.  If you are shopping in the store, print this off and take it with you.  The cashier can scan the bar codes and the items that you are buying - it will be reflected on our list so we don't end up with duplicated items.  Under the two bar codes there is a little box that says 'Sort this list by:'  click on "received" and give it a minute.  The list will sort out the things that have not been purchased.  

There are some things that are more important than others for us to have sooner than later.  Things that we need to get in the near future are: 

- breast milk storage bottles and bags

- crib sheets

- waterproof crib mattress pads

- Fisher Price floor jungle gym

- Angelcare monitor
- Bumbo seat and tray

(Crib and mattress are already taken care of, just not reflected on this list)

Things that can wait are:

- Tiny Love developmental toy (in a few months)

- jogging stroller

- play yard gates

- shopping cart cover

24 Week Update

Miss Beana has been dancing up a storm over the last few weeks.  She is on the move 24/7, which is more than I could ever say for Gracie, who slept for 6-8 hours a day with very little movement during those hours.  We had our 24 week appointment on Thursday, which included another level 2 ultrasound, a visit with one of the MFM docs and a visit with one of the midwives in our OB practice.

The ultrasound was, again, an amazing experience.  Beana was having a little dance party during the entire ultrasound - it was weird to feel her moving and watch it at the same time on the screen and see which body part it was that I was feeling.  She was in a head down position at 20 weeks and she was still that way on Thursday!  Yippee!!  The ultrasound wasn't quite as detailed as the 20 week ultrasound, but we still saw pretty much every structure of Beana's body.  We were also able to see the placenta pretty well, as well as blood flow through the umbilical cord.  Placental size and health and cord flow were two of the things that I was most concerned about (in addition to cardiac structure and function), and both looked really good on Thursday.  Heart structure and function is still looking good, too.

 Although you can't see her face, this is a shot of her arms up in front of her face.  It's similar to a few ultrasound photos that we have of Gracie.

You can see her heart with such clarity here...

Overall, Beana is measuring in the 39th percentile for growth - she was estimated to be 1 pound, 5 ounces.  I am not real crazy about the 39th percentile, since Gracie was only in the 30th percentile at 32 weeks, but as long as she holds steady in her growth and stays at or above the 39th percentile, all is well.  (I forgot to ask where she measured during the 20 week ultrasound.)  After our experience with Gracie's IUGR (Intrauterine Growth Restriction) not being diagnosed until postpartum, I am just a little nervous.   

The MFM doc basically came right out and said that everything looked good.  Jeff was surprised by this, because he was expecting him to give us the same line that the other doc gave us 4 weeks ago..."Nothing of concern seen at this point."  He said that if everything continues at it is now, we will have additional ultrasounds at 28 and 32 weeks, and then start weekly biophysical profiles (ultrasound and non-stress test combo).  We will also have a second NST each week since that information is considered to be valid only for 3-4 days. 

Nothing exciting during our midwife appointment.  My blood pressure was just a little higher than I hoped it would be, but it was certainly not high enough to cause concern.  I have gained a total of about 22-23 pounds so far, which is good.  Fundal height measurement was 24 cm...right where it should be.  Heart rate was 145 beats per minute.  We discussed a few other business matters...

The day of our next scheduled appointments will be quite eventful...I will be returning a 24-hour urine collection jug, doing the 1 hour glucose test, receiving my Rho.gam injection, having an ultrasound, seeing the MFM doc and seeing the midwife.  We decided to ask how much pressure we are likely to receive for induction as we get closer to our due date - in all honesty, if things are looking good, I have no desire at all to induce early.  Her response was that much of those recommendations would come from MFM, but as long as there were no concerns from us or from the medical team, it shouldn't be much of an issue.  But, she did say that it's not overly likely that they will 'let' me go past my EDD. 

Our next appointments will be on July 1st...hopefully there will not be much more to update until then.  Please keep our friends Lisa and Chris in your thoughts and prayers as they get closer to meeting their second little one later this month. 

Where We Are

I have been writing this post over the last few weeks, filling in bits and pieces here and there when the thoughts are clear.  I have written it because almost everyone we encounter these days wants to know how things are going and how we are doing.  They are such pure, innocent and well-intended questions, but it is soooo difficult for us to answer in one or two words at this point.  While some of this post is about our pregnancy with Jellybean and how it has been changed by Gracie's death, much of it is about our grieving and healing process since Gracie's death.   It is written from Susan's perspective, although much of it is applicable to pretty much both of us.  Although we have been relatively open about some aspects of our grief and healing over the last 9 months, there is much that we have not really disclosed or openly shared with others.  There are many questions that, for various reasons, people are afraid to ask.  So here are some answers in black and white.  It is meant to inform, not to offend...so please don't take anything that is said here personally.  This has been a very emotional process for us, and our emotions are still pretty raw...and sometimes raw emotions lead to blunt statements.  As we have moved through the early phases of Jellybean's pregnancy, there has been a surge of new and old emotions, and I am sure that the surging will continue.  But, in the meantime, here is a snapshot of where we are.....
 
First of all, I feel the need to extend heart felt thanks to those who have been there for us over the last 9 months.  Although many of you usually feel like you don't know the 'right' thing to say or do, you have nonetheless been there to offer support and love when it has been needed most.  Unfortunately, you are in the minority.  As we have come to learn, many of the people in our lives feel compelled to say or do something, but because they don't know the 'right' thing to say or do, they generally say and do nothing.  I say this not to make people feel bad, but to let those people know that they are not alone in their reactions.  I was in the same situation when friends of ours suffered a full term loss a few years ago - I desperately wanted to say or do something for them, but I simply could not relate to or understand the impact of what they were going through, and consequently said and did nothing to offer much support.  Now, more than ever, I feel like such a schmuck for that, but it has helped me to understand why people might react the way that they do.  The random (even if they are sometimes a little awkward) words of encouragement and acts of kindness and love are appreciated...please keep them coming if you feel so compelled, even if you are not sure they are 'right.'  You might be very surprised by how appreciated your gestures really are. (I have been surprised to learn that there are some people who are so profoundly affected by death in general, or who have been so profoundly affected by Gracie's death for one reason or another that they just cannot face it or address it.  If a time comes that this changes, you know where to find us.)

During a random conversation about 6 months ago, I told someone that what I was hoping for was not pity from other people, but sympathy.  The looks of pity were starting to get old at that point, but I was also having some frustrations in conveying my grieving process to others.  I said that I completely understand that everyone suffers the loss of a loved one at some point in life, and I am no different.  I acknowledged that I am certainly not the first person to lose a child or suffer stillbirth, and that our loss did not make us 'special' in that regard.  I also said something to the effect that no matter how much you think you are prepared to deal with death, when it comes, it just rocks you and in the long run it's very hard to be 100% okay with it.  She agreed with me, but then told me that she had lost her husband, an adult child and a toddler grandchild within a span of several years (I was unaware of any except the husband) - the last was about 5 years ago.  The loss of her husband was expected after extended illness; the loss of her son and grandchild were unexpected (and not connected to each other).  She told me openly that while she mourned the loss of her husband a long time (and still does), that she was prepared for it and relatively at peace with it, primarily because he was no longer suffering.  She said that the unexpected nature of death is a completely unique circumstance that can and will rock anyone that it touches.  She said that unquestionably, the unexpected death of her grandchild was harder to accept than even the unexpected death of her adult son.  It was an interesting conversation, full of insight and perspective...it gave me hope with regard to my own grief and made me feel a little better about the lengthy process that was still ahead of me.  It's a conversation that I will remember and appreciate for the rest of my days.

Unfortunately, we have encountered a some folks over the last several month who have had a different opinion about our loss... people who openly downplay the lasting effects of Gracie's death.  While this is not (thankfully) something that we run into on a regular basis, it is pretty bothersome when we encounter it.  Just as an example, a few months ago someone asked me if I didn't think it was creepy that I carried pictures of a dead baby with me.  Shortly after that, I was asked by someone else if I was "over" "the baby thing."  While the source of this particular question definitely must be taken into consideration, I was still floored.  I was shocked that anyone would have the gall to ask if I was "over it", and I was even more astounded that Gracie was being referred to as "the baby thing."   We think about and miss Gracie every day.  This will never change.  Her loss and her absence is something we will never, ever get over.  For the most part, the pain has dulled a little bit since August, but we will never get over it...and in our eyes there is no reason to get over it.  She was our child - our first born child.  She grew inside of me to a very viable age, and then she died.  Something was taken from us that can and will never be replaced.  Some people give the appearance of downplaying it because they don't know how else to address it - this does not bother us.  On the other hand, some people downplay it because she was stillborn; in all reality there is no difference between death coming 25 hours before her birth or death coming 25 hours after her birth - in the end I carried her for 36 weeks and in the end she is dead.

I have been told that we cannot live in the past forever.  (Most of this ties in with the people who view Gracie's death as something relatively insignificant in the overall scheme of life.)  These comments always leave me wondering and pondering, and I always come back to the same basic thought.  To the world you are just one person, but to one person you just might be the world.   There is no question about it - Gracie had become our world, and we were prepared for her to be our entire world forever (at least until she had to share the spotlight with a younger sibling - hopefully all parents out there can relate to this).  Then our world was turned upside down.  Everything had shattered...lightning had struck...we had hit the impossible odds...however you want to say it...  Ultimately, every expectant parents' worst fear was suddenly our reality, no matter how hard we wished otherwise. It was our reality.  So, based on this, we have an opinion on the whole living in the past thing.  We are not living in the past.  We are living within our reality, which spans past, present and future.  This reality started on July 31, 2009 and will continue until the days that we die.  We will forever live in the reality that one of our children will always be missing when we are gathered around the dinner table or Christmas tree.  We will forever live in the reality that our first born will never be here on August 1st to celebrate her birthday(s).  We will forever live in the reality that her siblings will only know that she existed because we will tell them so ... not because they live with her, know her and love her.  And, until we are done having children, we will live in the very real fear of lightning striking twice.  Sure, reality will get a little easier as the years pass, but it will always be reality - not the past.

All of that said, I can say that for the most part, we are 'okay.'  We have survived.  We have continued to put one foot in front of the other. So many people have commented on how strong we are.  Thank you for giving us this credit, but we want people to understand that there is a stark difference between strength and survival.  What we have demonstrated is our ability to function in work and survival modes - it is not something that we consider to be strength.  In the early days there was one decision to make: stay in bed and let this literally kill us or get out of bed, go on with life and grieve while we do it.   We have continued to get up every morning and go to bed every night.  The rest is simply a matter of survival, not strength.  There is a song that includes the lyrics "This is...How it feels when the sacred is torn from your life and you survive..."  It can't really be summed up any better than that.  That said, there are days that are much easier than most and there are days that are much harder than most.  There are still days that we wish the rest of the world could/would come to a complete standstill with us; instead we stand still and watch everything moving and spinning around us as if all is right in the world and nothing had ever gone wrong.  Some days require little effort to get through, but there are days that a complete meltdown is just around the corner.  Meltdowns generally come without reason, and many times without warning; they can be brief or they can last for several days.  They are fewer and further between, but the intensity is certainly no less.  

We continue to grieve every day because all we have left after 36 weeks (8 months) of pregnancy are a few pictures and small mementos.  We grieve every day for what we will never experience with Gracie...we will never see her roll over, sit up, stand up, walk, talk, go to school, fall in love, get her driver’s license...all of the things that you look forward to when you become parent.  We grieve because we never saw her open her eyes…because she never took a breathe…because she never felt our touch on her hands, back, belly or face…because we never had the opportunity to discover her personality other than what was evident while I carried her.  We grieve because we believe that Gracie could be here with us.  Please do not interpret this to mean that we place blame on anyone (our OB providers included) or anything for this, because we do not.  It was a culmination of very unfortunate circumstances.  Regardless of the reason, we grieve...forever.

This entire experience, as anyone might imagine, has impacted our view(s) on the world...in many, many ways......  I have a hard time accepting that “everything happens for a reason” (even though I am a believer that everything does happen for a reason) with regard to Gracie.  I have a hard time listening to people say that it was all part of God’s plan, and that she must have been needed more somewhere else - we needed her here just as much.  I have a hard time listening when people say that she is in Heaven with this person or that person – those are the people that were supposed to prevent this from happening in the first place.  I have a hard time accepting that Jeff, Gracie and I were destined for this long before Gracie was even a thought. I just do.

I also have a hard time with the fact that baby death is almost taboo.  No question about it, it's an unpleasant thing to think or talk about.  I have heard several comments over the last 8 or 9 months about 'unnecessarily freaking out' expectant parents by talking about it or educating about it.  Believe me, I get that.  I get it 100%, and to a degree I am on board with that mindset.  However I can say, with no hesitation, that I wish it was something that had been thrown in our faces during pregnancy.  I would have rather been a little freaked out by valid information than been blindsided like we were.  Because we have friends who lived this nightmare 2 1/2 years before Gracie's death, we had a very rough idea what would happen once we got the confirmation that Gracie's heart was no longer beating.  When I say a very rough idea, I mean we knew - before we even got to the doctor's office for confirmation - that labor would be induced and I would give birth to our dead baby girl.  Aside from that, we were completely blindsided.  After it happened to our friends, I should have known more about it, but I lived in the land of make believe - it wouldn't happen to us.  In the end, I wish we had known more about what is possible with every pregnancy.  I really, really do. 

Other people’s pregnancies and babies are generally a very weird thing for me at this point…and to a degree, this pregnancy with Jellybean is also a weird thing.  I would never wish this fate on anyone for any reason...and I am happy every time someone takes home a happy, healthy baby...but sometimes the ugly green envy creeps up.  My mind wonders why that girl and that girl...and that girl, who obviously can't even take care of herself, can go home from the hospital with living babies and I cannot.  The envy creeps up when I see someone with a pregnant belly...and then I remember that I have no idea what she has been through to get to this point, and no one knows what horrible unforeseen events might lie ahead of her.  Friends of ours are expecting a baby in June.  Somehow, my subconscious managed to push this info all the way into the back of my memory banks, and I actually 'forgot' for about a month and a half that they were expecting.  (Sorry, guys.)  When I realized this, I was mortified...absolutely mortified.  I felt like the most selfish, self-centered and self-absorbed person on the face of the earth.  After discussing it with a few other 'baby loss moms', I realized that I wasn't alone and that it was something that I really didn't have much control over. Still, it's pretty mortifying to me that this even happened.

I am horribly afraid for other pregnant couples, even those that we don't know.  I see them becoming more and more excited as they get closer and closer to their due dates, and the fear I feel is incredible.  I remember being in that same happy, excited and naive place as we crossed the 8 month mark, and having no idea what was only a few days around the corner.  I am so, so fearful that others will unexpectedly stumble upon the same fate and find themselves as the newest members of this awful club.   It is something that I cannot explain beyond this, but I ask everyone who reads this to understand and remember that no one is immune.  It happens...more often than anyone wants to admit...and often without warning.  It can shatter worlds and leave you feeling more alone in a crowded room than you could ever imagine.  I hope that our experience is the closest that any of you get to understanding this heartache. Please - talk to us or read more about stillbirth if you want to be at all proactive.  We will share our story with anyone who wants to know. 

With all of this said, I arrive at our pregnancy with Jellybean.  Suffice it to say that we are very excited but totally petrified.  It is easy to say that we have no reason to expect the same outcome with this pregnancy, but we also really had no reason to expect that anything would happen to Gracie.  I want desperately to go back to the naive people that we were a year ago and enjoy every minute of this pregnancy with nothing but carefree delight.  We went through our pregnancy with Gracie knowing that babies could die, but lived each day with the mindset that it couldn't and wouldn't happen to us.  Life is different now, and we almost expect each day with Jellybean to bring disaster.  On some levels, it's almost easier to expect that disaster will strike with the hope that if it does, it won't be quite as devastating since we are expecting it.  Bad plan?  Yep.  Realistic?  Nope.  Does it help us to get through each day just a little easier?  Yep.  Speaking for myself, I am doing everything I can to do to not lose all enjoyable moments of this pregnancy to fear.  I look forward to feeling Beana move every day...I look forward to our next ultrasound and seeing her moving around...I look forward to watching my belly grow.  But with each passing moment, I am still afraid. 

We have learned in recent weeks that Jellybean is a girl.  This brings with it bittersweet emotions.  We were so ready to bring home a little girl in August...especially Jeff.  When we initially learned that Gracie was a girl I saw a some of the glimmer disappear from his eyes for a brief time, since he was really wishing for a boy initially.  It didn't take long for him to adjust to the idea of having a little girl, and he was so ready to bring home (and spoil, despite what he says) his little princess.  Having another little girl will certainly allow him to do just that, but it will be so much different than it would have been with Gracie.  We will always look at little Beana and wonder.  We will wonder how much of Gracie really lives in her...how many similarities or differences there really are that we will never be able to see.  For a long time I will look at her and think about all of the things that we missed with our beautiful first born.  She will wear the clothes that we bought for Gracie.  She will sleep in the bassinet that was ready for Gracie.  We will love her with all of our heart for who and what she is, but it will be a little bittersweet for a while.

Earlier in our pregnancy we learned that there is a higher than average possibility that Beana may have Down Syndrome.  While it is certainly not something that we sit around and hope for, if she does have Down Syndrome, it will certainly not be the end of the world.  This is something that we have gotten a lot of feedback about from the people around us, and I want to sound off a little bit.  Again, it's not meant to offend, just meant to express my opinion.  The odds of anyone randomly ending up with a dead baby are roughly 0.625%.  We ended up with a dead baby.  ~  The possibility/probability of Gracie having Down Syndrome based on the first trimester screen was 1:47 - this means that if you lined me up with 46 other women, there is about a 90% chance that I would be the one whose baby was born with Down Syndrome.  I completely understand that this is a screen, not a diagnostic test, and I completely understand that there can easily be false 'positives' with the screen.  I also understand that there are cases of Down Syndrome that this screen will not detect.  All of that said, the professional assumption at this point, based on the medical information available for review, is that Gracie very likely had Down Syndrome.  ~  Based on the first trimester screen, Beana's odds of having Down Syndrome are 1:39.  Everything that applied to the 1:47 probability applies to the 1:39 probability.  Does that mean that Beana will definitely have Down Syndrome?  No.  Do I understand that?  Absolutely.  Do I need people to point this out to me every time it's discussed?  Not really - being reminded that it's only a screen and not a concrete diagnosis doesn't help me feel any differently or more confident about the situation.  Why?  Because, as much as I would love to be an optimist at this point, I must be a realist.  We are 2 for 2 with regard to hitting the very slim and unlikely odds.  There is also a very good possibility that, if Beana has Down Syndrome, all of these events are connected to each other - not just random coincidence.  If that is the case, it is going to have a significant impact on further expansion of our family.  So, while it is certainly easier for me to assume that Down Syndrome 'won't happen to us', in my eyes it is not realistic to do so since we do have seats on the 'it did happen to us' wagon.  I would rather expect the 'worst' and hope for the 'best'  Some will say that I am going glass half empty on this one, and that is fine - everyone is entitled to an opinion.  With the way life has gone over the last year, I simply need to go with the realism over optimism on this one. (We are encouraged by the fact that there were no obvious markers for Down Syndrome seen on the the latest ultrasound, but we also know that many kids are born with Down Syndrome after showing no markers on ultrasound.  Right now, we simply take comfort in knowing that there are no obvious heart defects!)

As we prepare for Beana's arrival, I will spend (and have already spent) many hours thinking about all that lies ahead of us with regard to medical intervention.  I will put endless thought into weighing the fact that women have been having babies for centuries without medical intervention against all of the marvels of modern medicine against Gracie's demise.  We are firm believers that, while modern medicine offers such amazing things to those in the minority that need help getting through pregnancy and/or childbirth, for the most part women can give birth to healthy babies without significant medical intervention.  I believe that many women don't do enough to educate themselves about pregnancy and childbirth and do not make their own decisions, and in the end, many allow themselves to be turned into 'sheep' by the medical community.  We are now in the aforementioned minority and it sucks...and to be quite honest, I am sometimes pretty much still in denial about being part of that minority.  I still believe that I can give birth to a healthy baby without all of the bells and whistles, but I am scared to death to do so.  I am so petrified of lightning striking twice that I have purchased the sheep costume.  It's still in the package, but it's definitely here.  (And I am pretty sure that Jeff has also purchased one.)  So, while we will prepare again for Beana to arrive via a natural and unmedicated birth, we will also think every day about the fact that bringing home a living baby may require us to abandon our plan, as well as our medical standards and values...this really seems like a no-brainer, and it will be a no-brainer if it comes down to it.  But that doesn't mean that we will feel any better about abandoning our values...it just means that in wanting so desperately to bring a living baby home, there were chances that we weren't willing to take.

So there you have it (if you made it this far).  Whether you consider our 'position(s)' to be right, wrong or indifferent, this is where we are.  Perhaps it is nothing new to some of you, perhaps it is more than some of you wanted to know, perhaps it simply gives a clearer picture.  Regardless, there it is.

We're Still Playing on Team Pink! (20 week update)

We are exactly 20 weeks today.  Our appointment today was for a level 2 ultrasound, a Maternal Fetal Medicine consultation, and a midwife check.  The detail of the level 2 ultrasound was mesmerizing.  I am pretty sure that I saw every bone on Beana's body...every single bone...in absolute clarity.  We looked at the structure and flow of the heart, the aortic arch and the flow through it, the kidneys and bladder - and the arteries around them, several structures within the brain, the spinal column, the nose and lips...everything you can possibly imagine.  I never want to have a level 1 ultrasound again.  There is simply no comparison.  Everything looked great anatomically, so that was quite a relief.  And of course, we found out that I am housing a Beana as opposed to a Beano.  Heart rate was about 140 beats per minute and she was very active.  We will have a follow up with the Maternal Fetal Medicine docs in 4 weeks, as well as another ultrasound and a midwife appointment.  We will be doing ultrasounds every 4 weeks for now to monitor growth. 

March for Babies 2010

We couldn't have asked for more beautiful weather for our walk yesterday.  When all was said and done, we turned in $1098 in donations.  A big thank you to all who generously donated to our cause - I could not be happier with how much money we raised!!  Overall, it was a good day, but the underlying reason for being there just sucks ass.  Next year we will walk in memory of Gracie and all of her angel friends, and in honor of her little brother or sister and all babies born with and without health and life challenges - and we hope to raise even more money and have even more people walking with us!  Below are a few pictures from our day.

 Jeff, Susan, our little friend Lauren, Jeff's dad Bob, Jeff's mom Libby, our friend Terri, Susan's dad Luke and Susan's step-mom Rose

 Our goodie bags had frisbees in them - Lauren talked Jeff into playing Frisbee after the walk while we were waiting for lunch. 

17.5 Week Update

Hello all.  Some little updates at this point, but nothing major.  I am pretty sure that I have been feeling movement for about a week or so, which is kind of exciting.  Right on cue, the Braxton Hicks contractions have also begun.  This is about when they started with Gracie, so it appears that my uterus has not lost any of its 'sensitivity'.  Aside from this, nothing new to report.  We are just anxiously waiting for our ultrasound on May 6th; we are very anxious to see the health of Jellybean's cardiac structure and function, but we are also anxious to find out whether we will be welcoming a Beano or a Beana.

Next Saturday is our March for Babies.  So far, our team is 8 members strong - me, Jeff, Luke, Rose, Bob, Libby, our friend Terri and our little friend Lauren.  So far, our team has raised just over $700 for the March of Dimes; I am hoping to hit the $900 mark by Saturday.  If you would like to sign up to walk with us or donate $5 or $10 toward our team, you can follow this link.  Team Gracibelle - March for Babies

15.5 WEEK UPDATE

We had a midwife appointment this morning.  There are a few updates, but nothing major.

• We discussed the amnio with her and she had nothing to add to our pro list or our con list.  We ultimately made the decision to decline the amnio, since having a definite yes/no answer on Down Syndrome is not going to change a single thing with this pregnancy.  If Jellybean does have Down Syndrome, we will deal with any genetic implications at a later point in time.  
• We will proceed through the rest of the pregnancy under the assumption that Jellybean has Down Syndrome, and hope to be surprised by no presence of Down Syndrome when Jellybean arrives in the world.  
• We have canceled the level I ultrasound scheduled for May 5th, and it will be replaced with a level II ultrasound on May 6th with.  The level II ultrasound will be done by the Maternal Fetal Medicine folks who come up from Harrisburg - it will allow a little more detailed look at Jellybean's anatomy, and it will also allow them to switch over to doppler and look at blood flow through the cord if they wish to do so.  (This is important because of the placenta and IUGR issues that Gracie had.)
• Jellybean's heartbeat was very easy to find today, and it was 145 strong beats per minute.

No other major developments or updates.  More updates as we have them.  Hoping to have some pictures to post in 4 weeks!  Thanks for following along!

As a sidenote, anyone interested in walking with us in the March for Babies is welcome to do so.  Follow the badge at the top left of the page to sign up.  Donations of any amount are greatly appreciated!!!  

MARCH FOR BABIES

Jeff and I will be walking with other members of Team Graciebelle on April 24th to raise money for the March of Dimes in memory of Gracie. We have set a realistic goal of raising $300 for this very worthy cause. If each of my Facebook friends, each of my blog friends and each of Jeff's Facebook friends donate just $2.00, we could collect a total donation of more than $800 (in addition to donations from friends and family who are not FB and blog addicts.) To make a donation or join Team Graciebelle for the walk, click on the widget in the top left corner of the page. :-)

DEJA VU

I had a voice mail from one of the physicians in my OB practice yesterday afternoon requesting that I call him 'to discuss some stuff'. I knew what this meant, even before I returned the call. I knew what it meant the minute I saw the number on the call history on my cell phone. It meant that there had been some kind of 'hit' on the first trimester screen that we had done last Monday.

We are essentially right back to where we started with Gracie...the screening showed the odds of Jellybean having Down Syndrome to be 1 in 39. Again, it is just a screening, but this screening is becoming to be more and more accurate...to the point of being about 85-90% accurate in detecting DS. My OB had me talk with the Maternal Fetal Medicine group from Harrisburg that sees patients in our OB office twice a month; ultimately, I ended up talking with a genetic counselor for quite some time yesterday evening and this morning.

Our concern at this point is not really whether or not Jellybean has Down Syndrome - we will happily accept a child with Down Syndrome.  But we would really like to identify any underlying issues that may be lurking (assuming that Jellybean does have DS...and assuming that the 99% certainty that Gracie had DS is correct). Once you have a DS baby, the odds of having another rise to 1%. Many second cases are simply flukes, but many are actually genetically predisposed. (I know that this may seem kind of obvious, but for further explanation of what I'm trying to say please check out Translocation Down Syndrome.) The genetic counselor's main concern at this point is helping us determine if one of us is carrying a chromosomal translocation that potentially predisposes our children to Down Syndrome. If I am a carrier for that anomaly, the chance of our future children having DS increases to 15-20%; if Jeff is a carrier, the chance of our future children having DS increases to about 5%.  

The first step of the 'plan', as presented by the genetic counselor, is to determine whether or not Jellybean has DS. In order to do this, she initially wanted us to have chorionic villus sampling done to determine the presence of DS. For several reasons, this would have to be done tomorrow or Monday, and we would have to travel to Harrisburg to have it done at their main office. We can get the same information from an amniocentesis in a few weeks.  The risk for lost pregnancy is less with amniocentesis, and we could have an amnio done in Lewisburg instead of Harrisburg. So...CVS was immediately ruled out. We are still on the fence about the amnio.  I really don't want to do it, but I am honestly not sure that I can wait until September or October to have answers to all of this.  The plan at this point is to schedule the amnio now, simply because it won't happen for another 2-3 weeks anyway.  That gives us time to talk to more people and gather more information.  If we get information that seems positive and encouraging, we can always cancel the amnio.

I posted some questions on a couple Down Syndrome forums today, and one of the mothers suggested that Jeff and I have chromosomal analysis done without doing the amnio.  If one of us tests positive as a carrier for a translocated chromosome, we can pretty much just assume that Jellybean does have DS.  I like this option MUCH better, but I am already in the middle of a power struggle with my insurance and I suspect that the genetic testing may not be covered without the supporting affirmative diagnosis of Down Syndrome via CVS or amnio.  But it is certainly worth investigating, especially if there is a chance that I can prevent a big, fat needle from being stuck into my belly.

So that is where we are...for now.  Not really where we want to be, but there are certainly worse positions to be in.  Updates to follow as we have them...

12.5 WEEKS

Monday (March 15^th) was our appointment for the nuchal translucency ultrasound – it is part of the first trimester screen for Down Syndrome and similar anomalies.  The ultrasound went well and looked, and the ultrasound tech referred to Jellybean as a ‘jumping bean’, since Jellybean was moving all over the place.  The blood work that goes with the screen should be back either by the end of this week or early next week.  If there are no ‘problems’ identified, we won’t hear anything until we see the midwife on April 5^th.  If they see ‘anything of concern’ they will call us before that point. 

Everything continues to be uneventful, which is what we want.  More updates as things progress, but probably not until our appointment on April 5^th unless something unexpected creeps up.