Monday, May 23, 2011

Another Hill To Climb. Will God Overcome This Obstacle?!

Today's appointment didn't go as well as I had planned.  In fact, it's left me more confused, frustrated and on edge than ever.

I've started blogging again because I wanted to jot down my journey. A journey I had hoped could only get better.  Thing is, there seems to be one hill after another to climb.  Just when we seem to reach the top, yet another hill to climb.

I'm getting tired.  Weak I suppose.  I see God, but I have questions. I have continued prayers for miracles to overshadow what man puts before us.

I'm sure your wondering what this is all about and since I don't have too many people I can share this with, I absolutely NEED to jot this down for sanity-sake.  

Today was the appointment with the fetal cardiologist for the fetal echocardiogram.  I was told it's something that is always done with women who are diabetics.  Thought I'd race right in, and then leave with good news.  INSTEAD, I find myself in a totally different place.  A place of unknown territory, fear and frustration.

We were sat down and the cardiologist asked if we were given the risks of being older parents.  I found the question to be a bit daunting as we weren't getting anywhere really.  Sure I was told the risks.  Last pregnancy they shared them all with me and figured they didn't need to go through it again.  In fact, I opted out of the testing with Jackson and did the same again this time with Amelia.  No matter what, we would keep our children if we are so blessed as to be parents.

After hearing from our own mouths what we were told, the cardiologist told us Amelia was safe from 90% of all MAJOR heart related issues.  We looked at each other and I was for the most part filled with relief.  In my head though I wondered about the other 10%.  

The other 10% he said that he had found a hole between Amelia's two ventricles.   He said he found this in each picture.  He was quoted as saying (and my husband understood as an RN on his cardiac unit) Amelia could possibly have what is called Ventral Septal Defect.  

The reason he went through the schpeal about risk factors of older mothers is because this Ventral Septal Defect is associated with Downs Syndrome Babies.

He asked if the Peri Center mentioned any issues with Downs upon seeing Amelia's sonograms.  Most often you can tell with the size of the hands and feet, I'm sure the head measurements as well.  We told him that all her sonograms came out Excellent.  

He said there is great possibility since Amelia's position wasn't really as good to take the sono pics that her rib may have caused shadows and there may not be a problem at all with Ventral Septal Defect, but in order to find out, He'd need to see us again in 8 weeks when she's bigger.

So here I am, confused.  We just had the cerclage put in last Thursday with hopes to keep her safe and alive to term and now THIS.  

I keep thinking how awful my body is and blaming myself for each issue that comes along with my kids. I'm trying not to let satan win here.  I mean, what does one DO with this information?!

The last thing a mother wants for her child is to struggle in life.  Doug and I know well that Downs children can live a full and happy life.  What scares me though is that we may not be around to guide and protect her when she gets MUCH older.  We're older parents.  Though the fact that I'm in my mid 30's doesn't really seem very old when you see the likes of the Duggars who have had many children and there are no downs babies.  I don't get it!  I just don't get it.  But we're no different from any other parent out there....whether they have a special needs child or not.  

My fear now is how much will she have to struggle IF she has this?  I do NOT want her institutionalized and am glad both Doug and I are equipped to give her as normal a life as we can.  But I can't help think that her struggles will be MY FAULT.  

Aside from jotting this down here, there are only two people in real life locally that I can talk to about this.  One being my Doula who actually HAS a special needs child and the other being a woman from church we've become REALLY good friends with.

The sad part about all this is that on boards that I frequent, I'm a rare case of someone who opted out of the genetic testing.  I purposely didn't get one with Jackson and I didn't get one now with Amelia because no matter what, She's a gift from God and we will love her no matter what.  But how do you share this with a society that would just assune terminate a pregnancy because the baby has possible chromosomal issues?

What's worse is that I'm not even sure how my parents (specifically my mother) will act with Amelia IF she in fact does have Downs.  I see how my mother is when confronted with people who are different.  It breaks my heart and so does the thought that people will feel sorry for us or treat my daughter differently because she may or may not have a disability.

Right now I hurt.  My heart hurts, my head hurts because I can't grasp what's going on.  In the end, I just keep thinking the first and foremost priority is to get her to term.  To be this little girls mother.  

We were told the heart defect, if there is to be one, THIS is the one!  It is very minimal and if she even needs surgery for worst case scenario, she can have the surgery at a year old and be fine.  Downs, well, we know that depending on the type she has, she can lead a perfectly normal and happy life.  Not of course the one we'd prefer...But God knows her place here and her testimony will be a great one.

In the meantime, I grieve for my baby girl.  I just don't know if it's even needed.  I mean...I pray this cardiologist is WRONG.  If he isn't, I pray that she will lead as normal and pain-free a life as she possibly can.  Then I think what can I do to make her life easier?  How can I share Jesus with her?!

Thoughts and decisions no mother ever wants to make.  I pray God gives me wisdom and strength for the road ahead.  If it be His will, let Him share another miracle with us!  To God be the glory...Forever!


Rachel said...

Don't worry, Rebekah. God doesn't make mistakes. And these doctors have to tell you all the risks because they're afraid you'll sue them if they don't. I was warned about Downs with my second when they told me I had excess amniotic fluid and that can be a sign of Downs. She wasn't. Perfectly normal baby. We went through it with our non-christian neighbours recently too when their genetic testing showed that their baby had a high chance of being Downs too - they actually considered abortion, but we prayed so hard that they'd change their minds. They did, and their baby was a healthy, normal baby. Don't let it worry you, and don't torment yourself with all the uncertainty of 20 years from now - just focus on looking after yourself and that precious wee girl and getting her safely into the world and your arms - that's what is important now. God will take care of the rest of our lives - He knows what is ahead and gives us the grace for it. I know what it is to be anxious during a pregnancy - ask the Lord to give you a special verse of promise especially for this pregnancy that you can meditate on when you feel overwhelmed. It really helped me.
Praying for you. Lots of love. xx

Grain Milling Moms said...

I totally agree with Rachel. They have to tell you these things as to not risk being sued.

You're not the only one ... I opted out of all those prenatal tests, too, because no matter what, termination was not an option for me either.

God is in control!!!


Treasures Evermore said...

I totally agree with the two previous comments. We have a special needs daughter...and even though life can be incredily hard at times....God does not make mistakes. He chose us to parent Stephanie and gives us strength.

When our other daughter was pregnant, she was asked if she wanted genetic testing to see if she carried the same gene as her sister...she opted not to because it really didn't matter...she would love the baby no matter what...and guess what, she has the most perfect little boy anyone could ask for.

We were told that our daughter needed the testing early on in case their was defects, she could abort...but that was not an option. Life is hard enough, want to add murder to the list of life changing decisions? I think not!!!!

Your little girl is going to be "perfect" for your family...she has been knitted together in your womb exactly like the Lord made her...and nothing will change that...she is exactly like she is to be.

We will be praying the doctors are wrong...and even if they are right...God can heal even in the womb if he so we pray..."thy will be done".

Amelia is one lucky little girl to have such a mom:-)

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