LILLY!

3 Reasons Why I Don't Want Lilly to Grow Up:

Keep in mind all of these things happened yesterday and she was at school and Grandma Robin's house all day!  Also keep in mind Lilly is only 2 years and 5 months old.

1. Getting in trouble at school:  Apparently Lilly was a "handful" at her bible school yesterday.  We don't know specific details (grandma will find out later), but on her way out the door, her teacher mentioned her being a handful.  I asked lilly what happened at school and she claims she hit a little girl named Nemo??? because she hit her first.  I highly doubt this is true because.....

2. Not telling the truth:  As i was putting Lilly to bed last night she casually mentioned that she ate dog food.  I responded with "WHAT?????" and basically freaked out.  I asked how she got the dog food.  She said Anna, her cousin who is 9 months older, gave it to her.  I even asked her where Anna got it, and she said 'the box.'  Now I believed her because her grandparents do have a dog and she spent the day there with Anna.  I also have a feeling Lilly & Anna are going to get in a lot of trouble together as they get older :)  Anyway, I called her grandma and she insisted that Lilly did NOT eat dog food.  They were never alone together all day long. 

3.  Scared of the dark:  Lilly has never been scared the dark, actually she has never been scared of anything.  So when she woke up at 2:30 this morning saying she was scared because it was dark, I was surprised.  Is it time for a nightlight? 

So, basically Lilly is just growing up way too fast and I want her to stop now!  I feel like just months ago we were worried about potty training, changing to a big girl bed, and getting rid of the paci and now we are worried about getting in trouble at school, lying, and being scared of the dark!!!  Slow down Lilly girl, you are still my baby!!!  I just looooooooove her so much.  She is truly the best thing that has happened to Kyle & I, and we have no idea what we even did before her!   Lilly is 2 going on 10.  She is so funny and says the cutest stuff all day long.  I love that I get to be home with her all day and if she is away she is at one of her grandma's houses or school. 

She loves:

• Disney movies, especially 101 Dalmations, Snow White, & Toy Story  (I can't wait to give her Bambi on Easter!)
• Coloring and Stickers
• Helping mommy do 'work'-she loves vacumming, doing dishes, folding laundry, etc...  I wonder if she will still love it when I actually want her to help me!
• Her Valerie Bear
• Anything princess related
• Her babies
• Cheese....seriously this girl lives on cheese, milk, and noodles
• Going to school- She goes every Wednesday morning to a Bible school and next year I have her enrolled in preschool Tues. & Thurs. mornings from 9-11:15!!
• Stalling a bedtime: She has to go potty, poopy, have a drink, get her paci washed over & over again!

LOVE HER!

The Plan and a 25 Week Picture

Hello Blogger Friends :)

Just got back from the doctor to hear Valerie's heartbeat.  It is SO strong and such a beautiful sound to hear!  We are now going to the doctor weekly for these heartbeat checks.  Please pray that Valerie's heartbeat remains strong!!

After our hard appointment last week, we have discussed all of our options and seem to have settled on a plan for Valerie's birth.  We are going to have a regular vaginal delivery with no monitors on.  This may change at any second....but right now, this is what we feel is right.  We do want Valerie born alive, but we don't feel like the risk of a c-section is something we want.  If it is in God's will that she will be born alive, she will.  With or without monitors.  We have decided that we want her birth to be as peaceful and easy as possible.  I want to spend time with her as soon as she is born without worrying about not being able to hold her or stand up or rip stitches, etc...  This is something I am having a hard time with though.  If we go this route, are we not even giving her a chance???  That is why i say our decision could change at any time.  The inant loss coordinator, who has helped us tremendously, said something last week that I will always remember.  She said, 'these people (pointing to my stomach) will know nothing but love their entire lives.'  This is SO true.  She will never know anger or hurt or sadness.  She will only know love.  And that makes me so happy. 

25 Weeks with baby Valerie

At church yesterday, which was appropriately about Worry, a 2-3 month old baby boy sat right in front of us.  The baby was propped up against his mama's shoulder and stared at kyle and i the entire time.  We would move back and forth, stand up and sit down, and sure enough this baby watched us constantly.  Of course, this made me tear up.  It always hurts seeing a newborn baby for obvious reasons.  But kyle said something that brought even more tears to my eyes.  He said, 'God is speaking to us through that baby.  He is telling us do not give up. That baby is a sign'.  A sign of what exactly?  That we will get to hold our baby like that in a few months?  That we will have other healthy children in our future?  God only knows, and we will find out when the time is right. 

Tough Appointment

On Monday we had a super hard appointment at St. V's.  I would say it has been the hardest one yet (besides when we found out there was a problem).  I started off with an ultrasound.  It was so good to see our little Valerie!  She was still moving around so much and at one point was laying on her tummy!  She is now 1 lb, 3 oz....so she is definitely growing!!  During the ultrasound, i asked a question I wish i would have never asked.  I asked how many toes she had on one of her feet.  Polydactyly (meaning extra digits) is a very common indicator of Trisomy 13 babies.  The ultrasound technician confirmed that Valerie does have 6 toes on one foot.  I completely broke down and lost it.  Sobbing.  I guess all along I had been holding out this hope that the amnio was wrong and that her only real problem would be her heart because they haven't found anything else indicating Trisomy 13.  Seeing an actual indicator just killed me.  I know that it is now real.  Valerie really does have the chromosomal abnormality Trisomy 13.  Seeing those six toes brought everything into reality.  I WISH I wouldn't have asked so I could have held onto that hope for the next 3 months.

After that, the appointment only got worse.  We met with the doctor and the Infant Loss Coordinator.  I pretty much cried throughout the whole meeting.  We have a lot of things to think about.  We were told that they have never seen a Trisomy 13 baby make it through a vaginal delivery.  If we want her born alive, we will need to schedule a c-section.  Do we want her monitors on or off during delivery?  Do we want to do everything we can to keep her alive if only for a few days?  So many things to think about.  They talked to us about after she passes and burial options.  Needless to say, it was a long, tiring day and now we have so much to process and think about.  I did ask that if she is born alive, what will most likely be her cause of death?  I have been thinking it would be her heart, but they told me it would most likely be a respiratory problem.  Since Trisomy 13 affects every single cell in her body, it is likely her brain won't tell her body to breathe. 

Please continue to pray that I will be able to carry our little girl to term and that she is born alive!  25 weeks down, 15 to go!!!  We can't wait to meet her and her extra toe :)

On Being Strong...

Valerie is moving around and kicking as i type this!  Love it!  She has made it to week 23.  Go baby go!  I pray that i have many more weeks with her.  We met with my doctor on Monday.  It went well, especially since we got to hear her heartbeat.  As hard as i tried not to, I cried there.  All the nurses know, and I even think the receptionists know.  They knew my name before I even signed in, and that is not usual.  My nurse said she thinks about us and prays for us every night.  Very sweet of her.  On Tuesday we met with the heart doctor at St. V's.  He gave us some hope.  He said after she is born, she will not be whisked away for heart surgery.  He said usually babies can go a few months or more without any surgeries.  So we will have some time once she is born to determine if that is the route we want to go.  But on the other hand, he said he had only done heart surgery on 1 trisomy 13 baby in like the last 10 years.  So it is basically up to us if we get to that point. 

Everyone tells me how strong I am (thank you to everyone who does), but the truth is--I have to be.  I have no choice.  If you would find yourself in the same position, you would know how true this is.  All we can do is enjoy our time with our little Valerie and put complete faith in God.  We have to trust that this is ok and that this is all happening for a reason.  It is hard, believe me, so hard sometimes.  On bad days, all I can think of is: Why us??  Why can't our baby live?  Why are we 1 in 10,000 families that this happens to?  Why isn't she healthy? and of course.....IT'S NOT FAIR!  Luckily, I have more good days than bad.  Also, we have a 2 year old to raise!  We can't act like our lives are over, because they aren't!  We have to be positive for Lilly and for Valerie. 

Pictures:  Lilly had a great time at her grandparents house over the weekend!!  We watched our awesome Packers and played in the snow!

Valerie & Lilly

Valerie has been kicking so much lately and I love it!!  Every little kick is such a blessing!  I am now 22 weeks pregnant.  We go back to our regular ob on Monday and then back to the heart doc on Tuesday for another ultrasound.  I can't wait to see how much she has grown and developed!   The heart doc. will also be able to give us some much needed information.

I have been reading some pretty disheartening things on the internet lately, and i know i shouldn't be reading anything but I can't help it!  I NEED to know what her problems are going to be if she can make it through multiple heart surgeries, which we still don't know if she will be able to survive through any of them.   I can't stand not knowing everything about her...I just spoke to the genetic counselor and she did confirm that babies with Trisomy 13 only live a few days, and with her heart condition, it could be much less for Valerie.

I have to say it stings a little bit knowing all of the pregnant women I know will have healthy babies and i won't.  I seriously know about 15 friends of mine who are pregnant, and while I am so happy for all of them, it does sting just a little bit.  I had such big plans for our new little lady, she would have had so many friends and playdates :)  It makes me especially thankful that Lilly is so healthy and happy. 

Speaking of Lilly, she is just amazing.  And if anyone is getting me through this (besides Kyle), it is my girl Lilly.  When I am sad, she gives me hugs, kisses, and lots of cuddles.  She is also SO hilarious and makes me laugh constantly.  She loves her baby sister tremendously.  Just this morning we were cuddling and talking to Valerie and Lilly took out her paci, put it on my stomach and said, "You want this Valerie?  You can have it."  Anyone willing to give up her paci is a GREAT big sister!!  We have told her a little about Valerie, just that she is sick and when she is born she may have to live up in heaven with Jesus and her Meme (my grandma whom both Lilly & I were named after).  She understands and and said 'No! Want her to live here.  I want to hold her like this.' and she shows me how she will hold the baby.   This is something that hurts the most.  Lilly being so excited about her new baby sister and not knowing how long Valerie will be here with us. 

To end on a good note:  Lilly has been potty trained now since early November!  We are so proud of her!  :)

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.  Still....it 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!

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.