Sunday, January 8, 2012

16 Weeks Left and a Rough Start to 2012

 Still a girl!
My sweet baby girl

I have started this several times and retyped it trying to get it out correctly. Brylee hasn't really moved at all that I can feel and this is very abnormal for me so I have had some concerns the last 5 weeks. Well, Nate and I went January 2nd for a routine ultrasound at the perinatologists office only to find out our sweet baby girl has 2 choroid plexus cysts on her brain. One is small and one rather large. The peri told us this raised our chances significantly for downs syndrome and Trisomy 18. It was horrible news. I felt like someone kicked all the air from my lungs. I ran out of his office crying after he urged me to do an amnio. I still haven't decided whether to take the risk of miscarrying her all to know if she is healthy or not. We already have one child with a genetic disorder.....I thought you could only win the lotto once. Don't get me wrong, Wyatt is the most amazing kid. We love him so so much, but the things he has to live through are so hard for him and us. I cannot imagine something with even greater challenges. It breaks my heart into a million pieces for my baby girl. I go to my regular OBGYN Dr tomorrow and we have another ultrasound scheduled for one week to check even further for any other soft markers as well as to see if the cysts have gone down at all. If you have a story to share regarding these cysts, good or bad, please do so. Thanks so much in advance for any thoughts and prayers. xoxo

26 comments:

PapillionMom said...

Janis please read Kelle's blog. Begin with this link, it is her birth story of a second wonderfully special little girl who happens to have an extra set of chromosomes.

http://www.kellehampton.com/2010/01/nella-cordelia-birth-story.html

kjames said...

Praying for Brylee everything will be ok god won't give you more then he thinks u can handle your strong and the best mom there are a lot of moms out there that look up to you, including myself

Mami to two girls! said...

Hi I have been reading your blog for a while and want you to know that I had a baby girl on november 2010. During my 20 week ultrasound they also found 2 cysts just like you I freaked out and though the worst ... Well guess what I now have a very healthy almost 14 minth old!!! They desapeared by 24 or so weeks!!! My doctor said that they are seeing this more since they have better technology but as long as there are no other soft markers it's fine. I will be thinking of you and your baby girls and sending you positive dust your way.

Monica

Mami to two girls! said...

Hi I have been reading your blog for a while and want you to know that I had a baby girl on november 2010. During my 20 week ultrasound they also found 2 cysts just like you I freaked out and though the worst ... Well guess what I now have a very healthy almost 14 minth old!!! They desapeared by 24 or so weeks!!! My doctor said that they are seeing this more since they have better technology but as long as there are no other soft markers it's fine. I will be thinking of you and your baby girls and sending you positive dust your way.

Monica

Leah said...

Just a couple months ago our anomaly scan showed a marker for Down Syndrom. I know the feeling and heartache of hearing that kind of news. After countless hours of research it seemed that the only reliable marker for Ds is the NT screening. Also seeing a nasal bone present at the 12w u/s is a strong indicator that baby does NOT have Ds. All of the 20w anomal scan Ds "markers" can't be relied upon at all.

There are other risk to Amnio other than a m/c. The one the really got me was the risk for an amniotic fluid embolism which puts mommas life at risk.

Praying for PEACE! Keep us updated!

http://leahwalshaw.blogspot.com/2011/12/prenatal-screening-and-down-syndrome.html here's a link to my post from a few months ago when we were going through the news of getting a marker for chromosomal disorders.

Tufford Family said...

Janis,
I will pray for Brylee and you...I pray God gives you the peace you need..read Mark 11:24 (kjv)...I have learned that worrying gets me no where but miserable. I need to trust God and his plan..We just m/c'ed again, 3rd time this year but I am not giving up..I know God will give us the desire's of our hearts...Blessings, Heidi

Sam said...

I knew you on BBC a long time ago. We (as kellie ,its an amazing blog too) have a 4 yr old with designer genes. She affectionately was born with downs. She has no health problems except stubborness, attitude and an amazing passon for life. ;-). I do worry about the future as no one knows if she will some day fall behind but her 8 siblings all argue who is taking Rose although i think she will be on her own. She has very few challenges and meets NO obstacles including holding own with 6ft brothers playing street hockey....
Smile big for a wonderful life change. Do not be scared it is an amazing journey I would be willing accept again anytime.
HTH
Sam (tolonfamily on bbc)

BunnyO said...

I have a friend whose baby girl had same cyst. It was rather large and then suddenly around 28 or 30 weeks it disappeared. Baby girl was completely and totally healthy with zero issues. She is now 8 months old. Completely understand your worry, but it's actually more common than people think. Best wishes. Hang in there.

Sugar said...

Don't worry just yet. I'm sure the doc explained to you it's only a slightly increased risk if you have no other factors (about 1%)

Try to stay calm (easier said than done I know), I have heard an aquaintence's experience and everything was fine in the end. The cysts disappeared sometime during the pregnancy. The baby was born fine, without any problems.

Could the lack of movement just be because you are so busy?

Cindy Ballagh said...

The only stor that I have is a friend who's child they thought had a huge cyst on the side of her head, and turns out her ear was folded funny?? She went through weeks of hell. Lots of prayers for your little girl

Mami to two girls! said...

Hi I have been reading your blog for a while and want you to know that I had a baby girl on november 2010. During my 20 week ultrasound they also found 2 cysts just like you I freaked out and though the worst ... Well guess what I now have a very healthy almost 14 minth old!!! They desapeared by 24 or so weeks!!! My doctor said that they are seeing this more since they have better technology but as long as there are no other soft markers it's fine. I will be thinking of you and your baby girls and sending you positive dust your way.

Monica

anup prasad said...

Your blog is very impressive!!Nice post.
This post is different from what I read on most blog.
And it have so many valuable things to learn.
Thank you for your sharing!

Tabitha said...

Hi Janis, I don't have experience with these cysts, but want to give you a big hug. My now 7 year old had an echogenic bowel on her ultrasound which was also a soft marker for abnormalities and I remember the scare and worry I had (she ended up being perfectly normal). I did find a discussion about the choroid plexus cysts and it sounds like it really is common...please read and try to ease your worry.
http://www.circleofmoms.com/welcome-to-circle-of-moms/cyst-on-baby-brain-463728
Tabitha

Nothing shocks me anymore... said...

My friends 4th daughter had quite a few of these cysts present at a few of her u/s. They all corrected themselves by birth and she was born 100% healthy and normal May2011. No amnio was ever done.

Mommy22alyns said...

Try to stay calm. I know it's scary, but CPCs are fairly common. One of my children had them and they went away and she's perfectly fine.

DenimAngel said...

Oh Janis I am praying for your sweet baby and that there are no other markers. I do have a story. Our first born son had a choroid plexus cyst on his brain. I remember like yesterday how scared and worried I was at the time. Our ob sent the ultrasound to a specialist ob/gyn who thought it would be okay and estimated the cyst could be gone in six weeks. We waited those six weeks for our scan that confirmed the cyst had now gone. Our son was born in perfect health and has just graduated from high school gaining a place at University. They told me it was quite common to have these choroid plexus cysts yet it never happened again with any of our sons.
May peace be with you while you wait.
Susan

The Busy Mama said...

Thank you for all he links and stories guys. Its been super helpful for both, my husband and I. We just pray and wait til our next scan. They changed it from next Monday to a few more weeks away. They wanted to make sure it had sufficient time to close up before a rescan.

Stephanie said...

Praying for you! I know of a few people who had similar finding and their babies were born perfect! Your little girl is beign perfectly knit in your womb. Do not worry. Turn it all over to the One who is creating her and trust in Him completely! *hugs*

SCOTT HAMMOND, AUTHOR said...

Janice, I've loved reading your blog over the past few years! I appreciate how honestly and openly you share what's going on in your life. I'm sure the news that you've gotten about your sweet baby girl is really scary, but my hope and prayer is that the CPCs will simply resolve themselves by the next scan (as they so often do). Moreover, I pray for *peace* for you both as you wait. I know how hard the waiting can be.

~~Joni (from BBC's Large Families board)

k and j said...

beautiful girl!! i am hoping things turn out great for her :)

Stealth Jew said...

My first and second had markers. 1% of babies will have a cyst in the choroid plexus, and the vast, vast majority of them are healthy. The risk is the same for multiple cysts as it is for one. G-d bless.

From Calgary Diagnostics:
"CPCs look like black spots in the hemispheres of the brain and were first seen in the 1980s. They caused a scare initially because many babies with Trisomy 18 were found to have CPCs. However, research has shown that these babies almost always have other abnormalities, such as strawberry-shaped heads, overlapping fingers and abnormal feet, heart, kidney or abdominal problems. Babies can have these cysts on one or both sides of the brain and there can be one or more cysts on each side. However, the number or size of the cysts do not matter as these facts have no bearing on the overall risk for a chromosomal abnormality. The risk is the same if there are one or multiple cysts."

Cindy Ballagh said...

Janis, I am sorry they moved your appt, but hopefully that will give you more time to get more news. Have you decided on the amnio?

Brittany said...

I hope everything turns out for the best. I will pray that your family will have comfort and peace during this trying time. Your a wonderful mommy who loves her kids.

heidihim said...

my cousin's baby had this same thing as well as other markers for trisomy 18. Her ob encouraged her to get an abortion. she refused and her little girl was born completely healthy. best wishes to you and your little girl whatever happens but those tests aren't always a hill to die on. will be praying for you!

Cindy Ballagh said...

HI Janis, was just here looking for an update as to how you were doing?

Married to the Military said...

Hi Janis, just checking on you. Praying that all is well. Update when you can....