It took me a while to write this...

I can't rewrite this again, so I just copied and pasted it (I wrote it shortly after all events took place):
I gave birth to little Rachel Grace on 1/3/10 at 25 weeks gestation.  Rachel was diagnosed after birth with Jeune's Syndrome.  A rare genetic disorder (affects 1:130,000 live births a year) that affects the long bones, especially the rib cage.  Rachel was in the NICU and passed away on 1/5/10.  This is the hardest thing in life that I have ever had to endure.  I miss Rachel so much.  I wasn't ready to see her yet, and when I did I wasn't ready to let her go.  We moved to a new apartment 4 days before she was born.  The reason why we moved, so Rachel could have her own room.  I look at the empty room and just don't want to live here anymore.  Too bad we are stuck in a lease.  We chose this place specifically for her...the room, the washer/dryer in the unit (Difficult to find in NYC), the large roof top terrace for her to play on in the summer/warm days.  Now, you walk in, our place smells like a flower shop, a huge pile of cards sit next the flowers that all are riddled with "we're sorry for your loss" and random bible verses that are supposed to give you strength in times of trial. Those words in the Bible right now, make me angry and don't give me comfort.  My faith in God has been totally dumped upside down.  Rachel got her first piece of mail- her social security card.  I had no idea what to do with it.  It was totally weird to see her name printed on an envelope.  Rachel's memory box given to us by the NICU sits amongst the flowers.  All I want to do is stare at it all day.  I wake up every morning and wonder what am I supposed to do now?  How am I supposed to go on in life when I've spent the last 6 months preparing for our daughter to join us 3 months from now?  I dread facing the world- going back to work, answering questions from my students who loved Rachel just as much as Ping and I.  I also think,  What can I do to raise awareness regarding Jeune's Syndrome?  A few of my friends did donate in Rachel's name to the tiny foundation that exists.  My older sister is doing a book drive for the NICU that Rachel stayed at since when I was there I was not allowed to hold her (until she passed away in my arms) and they only had 3 children's books for me to read to her (which they had to spend a few hours hunting down).  A strong part of me wants to get pregnant again right away, but I know that part is just trying to fill the void.  I feel like I have lost the purpose in my life.  How do I go one from here?  How do I heal.  I'm not crying as much anymore, about every few days.  I blame myself for Rachel's death.  I keep thinking, if I had just been more in tune with my body, called the doctor about the UPPER back pain I had a few days before, Rachel would still be with us.  Everyone is telling me that it's not my fault.  My doctor even says it's not.  "That back pain I would have never pegged as labor, your cervix and uterus were just fine.  It wasn't you that brought her here early."  I still blame myself though.  I know that if she had made it through she would have had 30+ surgeries ahead of her in life, one every 4-6 months to expand her tiny rib cage.  And even then her potential of living until adulthood is grim.  On top of that, the bleeding in the brain, who knows how that would have affected her quality of life.  All I want is my baby back and that none of this ever happened.  Here is a picture of our sweet Rachel as she passed away in my arms.

We Love our Little Girl

Two appointments have no occurred since I last wrote on this blog.  I decided to wait to report, because I wanted to get more clarity and answers from my doctor to ensure an accurate report to you.  Let me start off by saying that Ping and I are very happy to be expecting a child in our lives.  We rejoice in the fact that God has provided us with a child to care for and raise.  We only hope and pray that we will do the best that we can for her.  With that said, we received some news at my level II ultrasound.  This ultrasound is done at 20 weeks.  It looks at the baby's organs, and other anatomy to ensure the baby is normal and healthy.  If some of you have read earlier, you will know that at 12 weeks, we chose to do the Neuchal Translucency screening to test for the possibility of Down's Syndrome and Trisomy 18.  Our results from that test came back with the result of "screen positive: increased risk of Down's Syndrome."  At that time, we chose not to do an amnio because our chance of having a kid with Down's (although increased) was only 5%.  At the level II ultrasound, it was revealed that our child had some physical markers for Down's.  Her long bones (limbs) measure only in the 2 percentile range for her gestational age.  Her Iliac Bone (hip) is widen, also consistent with Down's.  The notes of the ultrasound state: High risk Down Syndrome.  My doctor today talked with me more about these results.  He stated that in his experience, it is safe to say that our little girl does have Down Syndrome.  With her proportions (a chubby baby - her abdomen measurment is in the 77 percentile- and short limbs- in the 2 and 5 percentile) she pretty much has Down Syndrome.

Right now, I feel sad that we won't be having a perfectly healthy girl.  Overall, we know that God has made this baby just for Ping and I and we are delighted to love her and raise her no matter her condition.  Dr. Jeng has suggested seeing a Genetic Counselor to discuss more about Down Syndrome and how we can prepare for our little girl's arrival into this world.  Here is her newest picture taken in 3D.  A bonus too: a belly picture....(I don't like posting these normally)  I am currently 5 months today!

Good-bye Old Jeans, Hello Nice Stretchy Elastic Panel!

A few weeks ago, I broke down and bought my first pair of maternity jeans.  I stood at the rack in Target looking at the funny panel designed to hold your belly.  "Is this REALLY going to be as comfortable as they tell me?"  I thought.  I grabbed the size 6 pair and went into the dressing room.  The attendant said, "What is that?!? Oh!  They're pants!"  I felt kind of embarrased at this point because I don't think anyone can tell that under my jacket is a bump that no longer can be hidden or fit into my favorite regular jeans and all other pants that can be found in my closet.  I took an available room and tried on the "funny" looking pants.  "Oh my!" I said to myself.  "This IS comfortable!" 
It was just a week or two before that I had been delivered the news that Little Lee has a 5% chance of having Down's Syndrome.  Ping and I decided not to go through with the amniocentesis at this point.  If something shows up on the anatomy scan in three weeks, we might re-evaluate.  However, at this point, we've got 96% on the normal side. 
At 16 1/2 weeks today, I am happy to have a baby inside me and now coming to the realization that we are going to have a child in our hand in just 5 months!  My last appointment was last week.  Dr. Jeng tried to take a peek at Little Lee's goods for us.  Ping is really wanting a boy.  As Dr. Jeng moved the ultrasound wand across my tummy, he said, "Well, if it is a boy, I'm supposed to see something right there, and all I see is black. Looks like it will most likely be a girl."  Let me just say that Ping is still holding out hope.  Given his family history of the boys hiding their parts until birth, I'm hoping this kid does not follow in her Daddy's footsteps.  The picture makes her look a little fat, but she is looking away from the camera a little on her side.