Saturday, April 12, 2008

Our baby boy needs your prayers please

Last Wednesday Jared, Braylee and I went to find out the gender of our baby. While doing the ultrasound an abnormality was found. We were told it was most likely either a Gastroschisis or Omphalocele. They got us into the neonatologist and genetic counselor yesterday and confirmed it is an Omphalocele. There's a lot to it so to find out more go to this website: http://www.healthsystem.virginia.edu/UVAHealth/peds_hrnewborn/omphaloc.cfm
The Omphalocele itself is treatable with surgery right after the baby is born. But the thing we are the most worried about is that there is a 30% chance our baby may have trisomy 13 or trisomy 18 which are severe chromosomal disorders. Here is a website with more info on it:
http://www.lpch.org/DiseaseHealthInfo/HealthLibrary/genetics/trisomy.html
The only way we can know for sure if our baby has one of these chromosomal defects is if we get an amniocentesis. They told us if we get an amnio there is a .5% chance the baby could miscarry. The chance is small, but it's still there. So we are torn and don't know whether to get the procedure done or not. If is had the chromosome problem, they won't do the surgery. If the baby will only be here for a short time we just want to make peace with it before he gets here...but is it worth it? Or to prepare for a long road in the NICU after surgery(I hope so!). So far I've heard of 2 people I know getting and amnio with no complications. I'd just like to hear of anyone you know has gotten one and what was the outcome.

7 comments:

ThereseAnn said...

You'll be in our prayers--There are many pros and cons on finding this diagnosis prenatally. If the diagnosis is confirmed early with trisomy 13 or 18 via amnio, most families find it difficult to get the early medical intervention that is necessary for these kids to survive, as they deem a child with trisomy 13 or 18 as medically futile to treat. They call it an "incompatible with life" diagnosis.

However, there is a growing number of families who have come together on many internet sites sharing the beauty of these kids. They have beautiful souls... perfect!

My prayer for you is that your child dose not have trisomy 13 or 18, but if your child does, there is always hope. Not false hope.. Real HOPE- your baby can reach your arms.

Visit this site when you have time
Living with Trisomy 13
http://www.livingwithtrisomy13.org

Blessings,
ThereseAnn mom to Natalia
full trisomy 13, 7 yrs.

ashlee said...

Leandra, you and baby boy are in our prayers. I know that you will make the best decision for you and baby and it will all work out. You are a strong person and you have a sweet little spirit inside of you who loves you and is totally dependent on your love and care.
I know you are stressed and anxious and the un-known is killing you. Either way you will be his mommy forever and we will pray that everything will be alright.
I am here to help with Braylee or let you talk about your feelings. I love you to pieces.
Just remember the feeling that you felt when you told me "I know it's going to be a long road, but everything will be ok eventually."
Love you!

kdemille78 said...

Well sweetie I must say that your news brought me to tears, as a mother I can imagine how this is tearing at you. Please know we are praying for you all!
I know that with the Lords help you will know what to do, I feel like you will get a peaceful answer and just know, he will guide you.
If you need ANYTHING please know I want to help any way I can. You are a sweetheart and I have always loved ya!

FishinFamily said...

Oh Leandra! I feel so bad. You will be in our prayers for sure. :) I had an amnio, but I was much further along...35 weeks. :-|
Gosh, I don't know what to say, I love you to pieces! We're praying for you. :)

Britnee said...

Jared-I am so sorry to here about this! I was talking to Eric yesterday & he told me. I can speak from experience when I say that have a child with a defect that has to be fixed surgically is something I wouldn't with on my worst enemy! Having said that...you will get through it! The people at Primary's are AMAZING! & I agree with the first commenter when she says that"they have beautiful souls"! I would change what I went through with Beckham if it meant he would have a different personality & temperament. I will pray for you constantly! I wish you & your family all the best. If you need anything--you know where to find me! Please call if you anything!

palmerzija said...

I'm always thinking of you and praying for you guys. You have shown so much strength it amazes me. I love you so much. You have been such a great friend to me. Especially in my lastest challenge. Thanks for always being there. I hope I can be there when you need me.

Edabelle said...

I also have the same situation as yours. We just found out last Monday. I'll add your blog to my blog list. God Bless for both of our Babies.