Tuesday, December 2, 2008

why me?

I know that I am not the only one that seems to have struggles in there lives, but I don't get why everything has to be so hard. Why do some people get to have children so easily and others have to try so hard.

On Monday, I received a phone call regarding the results of our ultrasound last week. I wasn't able to get a hold of anyone that day, so I finally got the results yesterday. Apparently the baby has a choroid plexus cyst on his brain. We are being refered to a perinatoligist for further testing and treatment. So far the only information I have about it is this:

The second trimester ultrasound examination (sonogram) will sometimes identify a cyst or cysts in the choroid plexus. The choroid plexus is a tissue in the brain that produces cerebrospinal fluid. Fluid-filled cysts, called choroid plexus cysts or CPCs, are identified by ultrasound in approximately 1-2% of all pregnancies scanned between 16 and 24 weeks gestation. In the majority of cases, CPCs disappear by the 28th week of pregnancy with no effect on the baby. However, a fetal CPC is considered a “marker”, indicating that the baby may have an increased risk for a chromosome abnormality. When observed as an isolated ultrasound finding in women under 35 years of age, the risk for trisomy 18 is increased, but remains low (less than 1%). The risk is higher for women age 35 or older. Additional abnormal ultrasound findings significantly increase the risk for trisomy 18 .

On Thursday, I go for my 20 week Dr's appointment. At this point we will get a little bit more information with what we are dealing with. I am not expecting them to be a big help because as we talked yesterday on the phone they weren't able to give me a lot of info. They more or less read literature that they had in front of them and told me I can ask the perinatologist more questions and they would be able to give me more answers. They warned me to stay away from the Internet, because there is to much information that will only upset me and make me worry more. In some sense I agree with that, but how can you expect a couple to wait a week before getting more information on their unborn child. I am extremely annoyed that it took them a full week to call me and give me this information, although I don't think I would have wanted it any earlier since I have to wait to see the perinatologist. We go see them next Monday. We meet in the morning with a genetic counselor for a hour then we will have a level 2 ultrasound, which is all done in 4D. They will do the same ultrasound they did last week, but they will be looking in more detail for abnormalities which would be markers for trisomy 18 and 21. At this point, if they find some abnormalities we will have the option of having a amnio or just waiting it out-boy aren't those great options.

Needless to say I am a mess, it is just one more thing for me to worry about. I went from being on cloud nine, to not wanting to even get out of bed. I am numb, I wanted to do some baby stuff yesterday-scrapbook, finish my registry, etc-and I couldn't bring myself to even think about it. I am just devastated. I know I have to stay positive and relax, but that is so hard to do. I am not a patient person, so the waiting game is going to kill me. Yesterday, I also took my first glucose test. It wasn't as bad as I thought it would be, but I was on a total sugar high and couldn't stop crying from the results of u/s, so I felt as though I was going to have a heart attack.

So I am asking anyone that reads this to please pray for us and our little one. I believe in the power of prayer and right now we need them. Also if you know anyone that has experienced this please comment or email me about your experience. I know this is fairly common (1/100) so there has to be others out there that have been through this. Thanks for your support!


Mama said...

If is any consolation my daughter was diagnosed with a CPC and higher risk for Trisomy 18, she's now 3 1/2 and althought the CPC didn't reabsorb completely, she's as healthy and smarter then other children (not only my opinion but her preschool teacher also)... so just keep your hopes up, if the cyst is your baby only marker, changes are everythign will be fine!

Annie said...

I wish I could say something that could put your mind at ease as I know your journey has not been easy. Just know you have so many people both family and friends that are praying for you, Justin and your baby boy!

The Boeckmann's said...

We love you all very much and are thinking about you often!! Mama's comments above sound like pretty reassuring words!! Good to hear! With a little bit of faith and positive thinking you two will get through this just like you have gotten through your past struggles. You are strong and so is that baby!! He is a product of the two of you!! Love you!

BottleWasherMom said...

Hi! I just found your blog through Lost and Found. I know EXACTLy how you are feeling right now. At my 20 week ultrasound, I was told my daughter had 2 CPC's AND a Echogenic bowel! I was "devastated" just like you. HOWEVER, there is HOPE...
I met with a Genetic counselor and I had an amnio done because I am the type of person who had to know for SURE if the baby had an abnormality. The amnio came back normal! THEN I had another ultrasound at 23 weeks and 1 of the CPC's had completely gone away and the other shrunk to a much smaller size! By 28 weeks, it too was gone!
I was told by a VERY respected doctor that CPC's are very commmon and if they scan any random adult that they pull off the street, chances are they might even see one or two small CPC's in his or her brain!
I was also told, if my baby had only had the 2 CPC's and nothing else, then I wouldn't have even needed an amnio! CPC's found in isolation of any other abnormality, mean NOTHING! My baby had an Echogenic bowel(meaning her bowel looked "bright" on the ultrasound) which also went away by 23 weeks. I had 2 SOFT MARKERS with my baby and she is now almost 12 months old and soo smart, healthy and beautiful! She was born with no problems at all! She walked at 10 months and can already say 3 words! I can almost guarantee, when you get past 25 weeks, your baby's CPC will most likely be gone! Please try not to worry...Good Luck and I know your baby will be fine!

Les said...

Just came from the lost and found to say that I will keep you in my prayers and thoughts, and also that my nephew had the same thing, and he is a happy, healthy one year old today. When my sister was going through what you are facing now, she was told that the connection to the trisomies is poorly understood and definitely not a strong connection, but I know it is very hard not to worry when you have been given the information you have just received. I am praying for peace to fill your heart while you wait for what I also pray will be good news.

Georgia said...

Hi! I was doing some blog searching this evening and ran across your blog. When I was pregnant with my daughter and went for my 20 week ultrasound my doctors found a CPC. Like you I was completely devastated, but my doctor assured me that these were actually very common and more than likely nothing to worry about. I was rescanned at 24 weeks and it was completely gone!! My daughter is now 15 months old and the into everything. She walks, runs, talks, climbs with no problems. I just wanted to let you know that I will be praying for you and your little boy. I really feel that everything will work out.