Monday, January 31, 2011

Valerie's Name & a Dream

Things are still pretty much the same.  A genetic counselor called us last Friday and confirmed the Trisomy 13 results.  She also said it probably wasn't necessary to come back to St. Vincents to meet with the Pediatric Heart Specialist anymore for Valerie's heart.  This made me SO mad!  I basically said why in the world would we STOP coming to keep up with her heart??  She said because Trisomy 13 babies are usually so weak, they don't like to perform surgeries on them. was like they are giving up all hope on our baby.  We are not giving up hope, and will continue to meet with the heart doctor as often as we can.  Never know when we might see a miracle :)

Valerie's daddy thought of her name.  There is a speech that Kyle loves given by Jimmy Valvano at the ESPY awards in 1993.  Valvano had cancer, and passed away a couple months after he gave the speech.  In the speech he says, "Don't give up, don't ever give up."  He also says to love, smile, and laugh every day.  This is the attitude we are taking with Valerie.  We will never, ever give up on her.  We will love Valerie and Lilly with everything we have.  Besides loving the name Valerie, we named her bacause of this speech that Jimmy Valvano gave.  Ann comes from my mother's middle name.  My mom has been so loving and supportive from the beginning, and it is only fitting that she should be named after her grandma.  

I had a dream the other night about Valerie, and I can't stop thinking about it.  In my dream, I carried her full term and then had her.  She was so beautiful and perfect when she was born.  I held her for a long time, and a nurse came in to take her from me.  I kept saying, 'I don't want to let her go' and 'I can't let her go' over and over again.  Makes me so sad every time I think about it.

Please keep praying for Valerie.  It means so much to us that everyone is so supportive and loving.  Thank you all so much!

Wednesday, January 19, 2011

Valerie Ann Wong

Well I thought I should give a little update on what is going on with us.  Last Monday, Jan. 10, we found out our new baby is a girl!  We were so thrilled....until the doctor came in the room.  She told us that our baby girl had a heart problem and a single umbilical artery (meaning most umbilical cords have two arteries and a vein, our baby only has one artery and one vein.)  She said if these things were acting alone, that there was nothing to worry about, but since our baby has both of these problems, there could be a chromosomal abnormality.  We were crushed.  We went home and waited 2 long days for another appointment at St Vincent to meet with a pediatric heart specialist and another doctor.  The heart problem the Dr. found is called Tetralogy of Fallot and also atrioventricular septal defect.  Her heart has 2 holes, and is basically hooked up wrong.  Surgery after birth can fix the problem.  He said usually the combination of these two problems could mean Down Syndrome and recommended we have an amnio.  I had the amnio the same day. 

We waited another very long 2 days to find out the results.  While we waited, we prayed and researched and essentially made peace with the fact we would have a down syndrome baby.  We were totally expecting to hear this news.  When we got the phone call Friday afternoon, we were once again completely blown out of the water.  Our baby girl does not have Down Syndrome, yet another more serious chromosomal abnormaility.  Our baby was diagnosed with Trisomy 13, or Patau Syndrome.  This syndrome is very rare, occuring 1 in every 10,000.  It is completely random (meaning Kyle & I are most likely not carriers), and happened at conception.  It is also fatal.  80% of these pregnancies are miscarried, and of the 20% who are born alive:
"Approximately 45 percent of trisomy 13 babies die within their first month of life; up to 70 percent in the first six months; and over 70 percent by one year of age. Survival to adulthood is very rare. Only one adult is known to have survived to age 33."

We have heard that the average life span for these babies is 5-7 days.

We have no idea what to expect now.  Usually with Trisomy 13, babies have severe brain defects, cleft lip, extra fingers or toes, orgrans protruding from their body, and many more problems.  As of right now, our baby only has the heart defect (which we know can be fixed with surgery).  I don't know if they will find more problems as we go on in the pregnancy.  Everything is very up in the air. 

We have named our baby Valerie Ann Wong, and we are still thrilled to be parents to this baby girl.  We know that we are pretty special since God chose us to be her parents.  We have made peace with the fact that God may take her at any time, but we will cherish every single second we have with her.  She has already done so much in her time here and from my belly!  She has helped Kyle & I to have a better, stronger relationship.  She has helped us have more appreciation for each other and Lilly and any other children we may have in the future.  She has helped us be more patient and live for every single second we have.  And most of all, she has helped strengthen our relationship with God.  We pray all the time, for the diagnosis to be wrong, for Valerie to feel no pain, to bring our baby home with us or to let her go peacefully....

I will continue to update as I know more.  Please pray for our family, and most of all for our baby Valerie.