Monday, February 28, 2011

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. 

Wednesday, February 23, 2011

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 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 :)

Thursday, February 10, 2011

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!

Friday, February 4, 2011

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!  :)