Two Months Old Already!

It's hard to believe that I haven't posted here in over a month.  Things have been super busy, and blogging takes a back burner these days. 

We have passed the two month mark!  All is going well so far.  Jenna had her days and nights mixed up for a couple weeks, and she made a habit of being wide awake from midnight until 4 a.m.  Not fussy (as long as we occupy her)...just awake.  This seems to be resolving slowly.  I was sick a couple weeks ago, and unfortunately passed my cold on to her, but it seems to be clearing up, too.  She had a hearing screening on November 8th, and passed that with no problems.  All things considered, she is still pretty low maintenance for an infant.  


She had her two month doctor appointment on Wednesday.  She now weighs 12 pounds on the nose and is 23" long.  The doctor asked us how much milk she is taking in on a daily basis, and we told her that Jenna averages 40-45 ounces every 24 hour period.  She gave us a really funny look and then told us that average is about 26 ounces daily.  I guess we have solved the mystery of the chubby cheeks!  She got her first round of vaccinations, and that was actually a relatively uneventful process.

We had some professional pictures taken when she was 5 weeks.  We got the disk with all of the pictures this week.  For those who have not already seen them on a certain social networking site, you can see them here. 

A Day to Remember

Now that Jenna has arrived, I am not sure how many people will continue to check the blog...  (I will update periodically with pictures, and probably some short video clips for my sister's benefit....basically anything that I don't want to post on FB.)  but I wanted to post here about this evening's Wave of Light in honor and memory of all babies lost too soon.  As thrilled as we are to have Jenna here with us, we will always love and remember Gracie - and we will always remember that without Gracie, Jenna (exactly as we know her) would not be here with us now.

If you happen to read here today (and haven't already seen it on FB), please consider lighting a candle tonight at 7:00 for Gracie and all of her tiny angel friends...

Our First Two Weeks at Home

Jenna was released from the hospital the morning after I posted the news of her arrival...Sunday, September 19th.  The first two weeks at home have gone pretty well.  Of course, there have been a few exceptions, but for the most part Jenna sleeps for 3-5 hour increments, and is generally only up once during the night and then again in the early morning hours.  If we could get her to go to bed before 1:30 a.m., things would be even better!!  She hates having her diaper changes...or even opened...and has learned to use her bladder as a weapon every time the diaper is opened.  :-)


She is eating well, and weighed 7 lbs, 2 oz at her 2 week check-up.  Her bilirubin levels are now back down in a normal range and her color is now pink instead of orange.  Initially, we had to go for daily heel sticks, and we had a light blanket to use with her at home to continue to bring her bilirubin down.  We were able to stop heel sticks within a week of coming home and we are no longer using the light blanket. 

The dogs and cats have adjusted very well, and she doesn't seem to mind them, either.  She has had lots of visitors and been out to meet lots of people.  She went with us yesterday to the memorial service for Jeff's sister-in-law, and she was snatched away from us at the first opportunity and basically not returned until it was time to leave. 

Aside from all of this, the last two weeks have been relatively unremarkable.  Below are a few pictures and a video clip.  I wasn't planning to post videos, but they are too big to email to my sister, so I figured that putting them here was the next best option....

Notice the orange raccoon eyes from the mask that she had to wear under the bili-lights.

Still sporting the raccoon look after we got home.

Getting ready for the Share and Remembrance Walk for Gracie on September 25th.  Raccoon look pretty much gone at this point. 

From a Jelly Bean to a Jenna Bean

Although this post is delayed thanks to our hospital's blocking of Fa.cebook, Blogg.er and various other websites critical to my daily survival, I am happy to announce that our rainbow has arrived!!  Instead of a Jelly Bean, we now have a Jenna Bean.  :-D

Jenna Nicole was born on Wednesday, September 15th at 10:20 p.m.  She weighed 6 lbs, 11 ounces and was 19 inches long.  She even has hair, which I was doubting, since my sister and I didn't have hair and Jeff and his brothers didn't have much either. 

So far, all is well with one exception.  She developed quite a case of jaundice on Thursday, and since yesterday morning has been on a structured feeding schedule and under lights to help bring her bilirubin levels down and resolve her pumpkin coloring.  I was officially discharged last night, and we were hoping that we would be able to take Jenna home today some time, but we just got the word that she will have one more night under the lights.  Fingers crossed that tomorrow's 0600 labs look better and we can have her home bright and early.  And for those who have been following a while and might be afraid to ask, there are no obvious indications of Down Syndrome at this point.

I apologize those of you who have been waiting for additional communication - the browser on my phone has been getting quite a work out over the last few days (again, thanks to the hospital) and it's been slow going.  I still haven't sent out my text message announcements, which were planned as being the first 'wave of announcement.'  I guess at this point, I can abandon that plan.  :-/

Hoping to post more when we get Jenna home and get her settled...

37 Weeks

I had an ultrasound, NST and midwife appointment on Tuesday afternoon. 

Everything with the ultrasound was good; Bean scored 8/8 on that portion.  She was moving all over the place, which was great!  She apparently wore herself out during the ultrasound, because she decided to take a nap during the NST.  The NST was eventually declared non-reactive, and the midwife in the office sent me over to L&D for another NST on a 'better machine.'  It was appropriately reactive within 30-40 minutes, so no concerns.  The midwife appointment was otherwise uneventful.  No physical signs yet that Bean is contemplating making her appearance in the immediate future.

I had a NST this afternoon that was appropriately reactive, so we were in and out pretty quickly.  We are all set to head to L&D, as I did all of my pre-admission paperwork this afternoon, too. 

Ultimately, things continue to be pretty uneventful.  True to Andrews and Houseknecht family style, she is not following the 'rules' of being a fetus.  Generally movement is expected to slow down a bit as babies bet closer to birth, since they have less room to wind up and fire their arms and legs at the uterine wall.  Bean, on the other hand, has started to pound the heck out of my insides over the last two days.  The amount and intensity of her movement has been substantially more in the last two days than it has been during the last 4-6 weeks.  It's wonderful, except between the hours of midnight and 6:00 a.m. 

Bean will make her first trip to Baltimore this weekend for cousin Julia's wedding.  It will be good to get away for a day or two and see family.  Over the next couple of weeks we are also anxiously awaiting the arrival of baby girl Crane (daughter of cousin Dave and his wife Jen).  She is due 13 days before Bean, so they may end up with birthdays that are very close together.  I am excited for Bean to have a cousin so close in age!! 

Nothing else exciting to report.  We have another NST, ultrasound and midwife appointment scheduled for Tuesday, and a NST next Friday afternoon.  In the meantime, we are just keeping our fingers crossed that she stays put until the new therapist secures his P.T. license!!! 

Registry Update

It has come to my attention that Wal-Mart finally deleted our registry, since I never changed my due date from 2009 to 2010.  I know that a few people are working from this list, so I redid the registry, but now there is a new link to follow.  The Babies-R-Us registry is now also closed, but we have what we need.

Here is the new link to the updated Wal-Mart registry.

  

36 weeks

The last two weeks have been super busy, and consequently I have been a bit of a cyber-slacker.  I have been busy getting ready for back to school (which means trying to get 86  kiddos arranged in a one therapist schedule for the first two months of school) and getting the new physical therapist oriented.  And...then there is the nesting and the list of projects to finish before Bean arrives.  During all of this over the last two weeks I have spent minimal time on Facebook, returned very few emails and phone calls (unless they pertain any of the 86 kids) and not done any blog updates.  So, here is an update for the last two weeks......

Tuesday, August 17th was a three-appointment day....non-stress test, ultrasound and midwife appointment.  The NST was again reactive within 20 minutes.  The biophysical profile ultrasound was good, scoring 8/8.  The ultrasound tech gave the very distinct impression that he was in quite a hurry to get us in and out; I was only on the table for about 3 minutes.  I have confidence in his scoring/evaluation of everything except the amount of amniotic fluid, which he rated as normal (it had been high during the two preceding ultrasounds).  After the ultrasound done yesterday (8/26) I am pretty sure that my assessment was correct in not trusting his 'normal' rating on the 17th.  The midwife appointment on the 17th was uneventful.  She reviewed the rest of my labs that were not back by the last time I was in to see her.  There was very little protein (which is normal) in my 24  hour urine sample, which is what anyone with chronic hypertension wants to hear.  The 1-hour glucose test that I did on Wednesday the 11th was also well within the normal range, so it means that the extra amniotic fluid that was seen was not the result of new onset gestational diabetes. 


35 WEEKS
Friday, August 20th was another NST...again reactive within 20 minutes.

Monday, August 23rd was another NST...again reactive within 20 minutes.  I am starting to love the quick reactivity that Jellybean is showing at this point, as Gracie was never this reactive.


36 WEEKS
Thursday, August 26th was a NST, a Maternal Fetal Medicine appointment (which included a level II ultrasound) and a midwife appointment.   Bean was quite active during the NST, so I was again done within the 20 minute window.

The level II ultrasound was good.  We didn't get any good pictures because she continued to be quite active right through the ultrasound.  She was estimated to be 6 lbs, 4 oz, which puts her in the 50th percentile for size.  Keep in mind that this is an estimate, and can be +/- one pound of the baby's actual weight, but it is encouraging.  At 35 weeks Gracie was estimated to be 5 lbs on the nose, which put her in the 19th percentile; a week later she was born at 4 lbs, 3 oz, which put her in the 7th percentile...which is way to small for a fetus.  So...at this point, Bean's estimated weight is about 50% more than Gracie's actual birth weight at 36 weeks.  The ultrasound technician seems to think that Bean is going to have quite a bit of hair.  She pointed out white spots around Bean's head on the ultrasound and said that it was hair (from her head) floating in the amniotic fluid.  Given the hair history of Bean's parents, aunt and uncles, I won't really put too much faith into that prediction until she is born with a full head of hair!!  :-)  

I met with a MFM doc that has not been to my OB's office before...the assumption is that she usually doesn't travel and was just filling in for one of the regulars.  Too bad if that is the case, because I liked her quite a bit more than the regulars.  She had no concerns other than my amniotic fluid level, which is, in fact, still pretty high.  Right now, there are two realistic explanations for the high fluid levels (there are many other things that can cause high fluid levels, but most of those have already been ruled out).  It could be absolutely nothing - completely benign and insidious.  It could also be the result of a chromosomal abnormality (i.e. Down Syndrome).  If it is benign without substantial cause, it may go down between now and the end of the pregnancy, or it may not.  If it is due to Down Syndrome, it will likely persist for the remainder of pregnancy with the possibility of increasing further.

The MFM doc offered me induction any time after 37 weeks (this coming Thursday).  She offered this for two reasons, first and foremost being our emotional well-being in light of our history.  The other reason was the fluid and the potential impact that it might have on my breathing.  Luckily Bean has been very low during the entire pregnancy, and she's not yet dancing around under my ribs, so I am not having any breathing issues yet.  At this point, we are not considering early induction, however she left the option open and on the table in the event that we change our minds.  If I start having a hard time breathing, we will probably consider it, otherwise we are just going to wait things out and let her come on her own terms.

Thursday's midwife appointment was relatively uneventful.  We did and discussed some end-of-pregnancy stuff.  We discussed the fluid issue a little more and that was it.

Next appointments are Tuesday the 31st (NST, BPP and midwife) and Friday, September 3rd (NST and hospital pre-admission visit).  Bean and I have a busy weekend ahead.  We need to finish packing the hospital bag (Yep...really....it's not packed yet; it was packed at 30 weeks with Gracie).  We are going to put the car seat in the car.  We are going to coerce Jeff into helping with our belly cast, and we are going to try to cross lots of other household projects off of the list.

On a different note, Bean had a busy night last Friday/Saturday morning.  She went to two fires in a period of about 5 hours.  The first fire was relatively uneventful, but the early morning fire was pretty substantial.  Here is a picture of Jeff and one of our other members (Jeff is on the left) during the initial hit.  Jeff has a funny story to tell about how they ended up in the middle of the highway with the hose line. 

Nothing else to report at this point.  Check back next week for additional updates. 

34 weeks

On Tuesday this week we had our weekly appointment marathon - non-stress test, biophysical profile ultrasound and midwife appointment. 

For those who are not overly familiar, the biophysical profile (BPP) is comprised of an ultrasound and a non-stress test (NST).  Overall it is rated on a scale of 10.  The ultrasound portion is worth 8 points - up to 2 points each for baby's practice breathing, movement, muscle tone and amniotic fluid levels.  The NST is worth 2 points, and it looks for elevations in heart rate of at least 15 beats per minute that are sustained for at least 15 seconds.  Generally, if a baby is cooperative, a NST should be done in 20-30 minutes. 

We scored 10/10 on Tuesday, so all was well.  We were done with the NST in 20 minutes, which is something that never happened with Gracie.  Beana's size was not measured, as it was too soon following the last measurements, but she will be measured on Tuesday the 17th.  My amniotic fluid measurements were actually a little high, which can be indicative of many things - including new onset of Gestational Diabetes, so they ordered another 1 hour glucose test.

I did the glucose test and a smattering of other blood work on Wednesday morning.  Since it is also time for my third trimester pre-eclampsia screen, I did a third (and hopefully final) 24 hour urine collection yesterday into today and dropped that off this afternoon when I went for my second NST of the week.

Today's NST was the third in a row to be appropriately reactive within 20 minutes!  The midwife went over all of the labs from Wednesday, and everything looks 'wonderful' and 'fantstic'.  As I was expecting, no new onset of Gestational Diabetes, so we are keeping our fingers crossed that the extra amniotic fluid is just a fluke.  We have another BPP ultrasound on Tuesday, so we will see what everything looks like then. 

Here is a 4-D picture from Tuesday's ultrasound.  Hopefully we get to meet this little face with open eyes some time within the next six weeks!!

33 Weeks

Had a NST today - that was the only appointment.  It was far and away the best NST that I have had.  Period.  With either baby.  I was hooked up for the minimum of 20 minutes, not a moment longer!  No weight gain since Tuesday, so no further accumulation of fluid in my hands or legs.  :-)   Back to the office on Tuesday for NST, BPP and midwife check.  Nothing else to report!

32 Week Appointments

Our big 32 week appointment was on Thursday, July 29.  We had a non-stress test, an appointment with the Maternal Fetal Medicine doc - which included another level 2 ultrasound, and we met the new midwife in our OB practice.  Highlights from the appointment as follows:

• Non-stress test was considered to be 'reactive', which is what they are looking for.  That is a good thing. 
• Everything looked good in the ultrasound, including size and condition of the placenta, blood flow through the umbilical cord, level of amniotic fluid, Bean's movement and practice breathing.  She was estimated to be 4 lbs, 3 oz. (which is exactly how much Gracie weighed 363 days earlier), which put her in the 51st percentile for overall growth.  The girl that did this ultrasound is the one who did the one with the measurements that put her estimated size in the 39th percentile 8 weeks ago; a different person did the scan 4 weeks ago that had Bean's estimated size in the 61st percentile.  I am inclined to think that she is probably somewhere around the 50th percentile right now.  
• We will continued to have biophysical profile ultrasounds once a week and non-stress tests twice a week.  
• We will see the Maternal Fetal Medicine doctor one more time, at 36 weeks, and that will be it unless a problem creeps up.  

We went yesterday for this week's BPP ultrasound, another non-stress test and a midwife appointment. 

• This particular ultrasound did not measure growth, but looked at Bean's muscle tone, movement, practice breathing and the amount of amniotic fluid.  It also looked at the health (not size) of the placenta.  
• The non-stress test was again considered to be reactive, which means that Bean demonstrated heart rate elevations of at least 15 beats per minute that were sustained for at least 15 seconds.   
• All was well with the midwife appointment - at this point everything is as it should be.

We will go again on Friday 8/6 for another non-stress test.  

30 Week Appointment and Beana's First Trip to NYC

Last Friday morning (Jul 16th) was our 30 week midwife appointment.  For a simple appointment, with no other 'procedures' scheduled, it took a long time.  Just over 90 minutes...but we got a lot accomplished.

In short, all is well with the Bean.  My blood pressure is still really low, which is fantastic news for someone with chronic hypertension!  Beana's heart rate was in the high 130s, and several times during counting, Jellybean had very noticeable heart rate accelerations.  Again, a very good thing.  Belly measurement was right on target.  We reviewed the report from the last Maternal Fetal Medicine appointment (since I saw MFM after midwifing last time, instead of before), and she confirmed that Bean is measuring in the 61st percentile.  Again...very reassuring.

So, as things stand now, I am scheduled to see MFM again on July 29th, as well as the new midwife.  We have added a non-stress test to the string of appointments for that day.  After that, I will go twice a week for non-stress tests; one of those appointments each week will also include an ultrasound and a midwife check.   These appointments are scheduled out through August 20th, with the anticipation that I will see MFM again on August 26th, unless they decide otherwise next week.

After the appointment, we hit the road for Beana's first trip to NYC.  We visited with friends from college and did some 'touristy' things in the city...we did the Rockefeller Center observation deck, the Brooklyn Bridge, Little Italy, the Bodies Exhibit  (this exhibit is set up in various cities across the country...if you have the chance to catch it anywhere, I highly recommend it!), and a Yankee game on Sunday.  When I was pregnant with Gracie, Jeff and I somehow managed to not have our picture taken together, so we never really had a 'family' photo.  (We also did not do one together after she was born, either.)  So I made sure that we got a 'family' photo of the two of us with Beana while we were being touristy.

Each day we get a little closer to Beana's anticipated arrival.  Each day a little more anxiety and angst starts to creep back into the picture.  Balancing preparations for Beana with our emotions is turning out to be kind of  difficult some days.  Based on everything from our multitude of appointments thus far, we have no reason to suspect that there are any problems...but it goes way beyond that at this point...especially because we had no reason to suspect that anything was amiss with Gracie until the very end.  So please bear with us from this point forward.  If you get the sense that we might not want to talk about something baby or pregnancy related, you are probably correct...but that is not to say that we will feel the same way the next day or even the next week. 

There are several questions that I/we are getting on a regular basis at this point, so I will throw those up here with the answers to save the rest of you the trouble of asking.  :-)

• Should you be doing that?  I really do appreciate the concern that everyone is showing with regard to me 'overdoing' things, but please remember that I am not broken...just pregnant.  Please also remember that overdoing things had nothing to do with Gracie's outcome.  I have been very good about asking for and taking help when necessary and setting limits for myself.  It's all good.  Really.  :-)
• How are you feeling?   I am tired, but otherwise feeling fine.  I have been working too hard since October, which has a lot to do with being tired.  I am pretty sure that I would still be tired even if I wasn't pregnant.  I am carrying a little bit of extra fluid in my hands, feet and face, but nothing to get excited about.  Otherwise, things are great.
• Are you still running ambulance calls?  I am cutting back on ambulance calls for now - primarily because we usually run with a crew of two people and I am not really any good for lifting.  I am still running occasional ambulance calls, and I am running fire and rescue calls, as well.  I am able to be productive without having to physically exert myself too much on most fire and rescue calls.  Sometimes I just need to do something other than work and try to clean the house...
• Have you picked a name?   Nope.  Beana is just Beana for now.  We have a short list of about 10 names right now, but that's as good as it gets, and there is no guarantee that our final choice will even come from those 10.  Once we have finally decided, we will not be sharing the name until she is born (unless, of course, we don't decide until after she arrives).  Sorry.  
• Do you know anything else about whether or not she has Down Syndrome?  Nope.  We elected to not do any invasive testing to find out, so that will be a surprise for all of us when she is born.  
• How are you guys really doing?  We are okay.  Good days and bad days, which will continue for a long time.  If you want to know more than that, check out this post from earlier in Jellybean's blog.  
• This is not really a question, as much as it is a statement....Please don't rub or pat my belly without asking or warning me first.  For some reason, I did not deal with much of this when I was pregnant with Gracie, however it has become an issue over the last couple of weeks of this pregnancy.  Several strangers have patted or rubbed my belly during chance conversation, and a few people that I know have done the same thing.  I am not opposed to letting someone feel Beana moving if the timing is right, but I would really appreciate if you not just arbitrarily rub or pat my belly without permission.  It may not bother some, but I'm not a fan.  Sorry.

As always, thanks to those who are following along.  Thanks to those who leave us little messages and comments.  Thanks to those who are still praying for us.  More updates as they are available.

28 Week Update

Thursday was our 28 week appointment for Beana.  Everything is looking great as this point.  Here are some details:

• Fasting blood glucose was perfect; 1 hour glucose results not in before I left, but not expected to show anything surprising.
• Iron levels are fantastic
• No protein detected in my urine
• Remainder of the blood work looked good - this included kidney panels, liver panels and some other random stuff that they look at a little later in pregnancy.
• Blood pressure is still good
• Belly measurements were exactly where they should be for 28 weeks
• Beana's heart rate was measured at 140 in the morning and 138 in the afternoon.
• Estimated weight of the Bean was 2 lbs, 11 oz.  This means she has doubled in size from her last estimate 4 weeks ago (1 lb, 5 oz.).  This estimated weight puts her in the 61st percentile for growth/weight.  Although it's just an estimate, it's very exciting stuff for us since she was in the 39th percentile a month ago!!!!
• Blood flow through the umbilical cord was "excellent", size and health of the placenta appeared to be "excellent" and the volume of amniotic fluid was "excellent".  Cord flow and placental size/health are again big things for us at this point.

We have been going back and forth between two due dates; it was decided that 9/23 will be our official estimated due date.  We will have another midwife appointment on Friday morning, July 16th, at which point we will finalize the plan for non-stress testing and ultrasounds beginning at 32 weeks.  We will be taking Bean on her first trip to NYC after this appointment.  :-)    Our next appointment with the Maternal Fetal Medicine docs is Thursday, July 29th.

Bean was a very busy girl during the ultrasound and did not cooperate much in holding still for measurements and pictures, but we did get this picture to share...for those who cannot figure it out, both of her hands are up to the bottom of her chin.  

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.