*The Unexpected*

Source:  *The Unexpected*    Tag:  ultrasound markers for down syndrome
January, 2009

Well I thought I'd start this blog to keep our family and friends informed on what is going on in our lives. We recently received some rather shocking information about our baby that is due in May and I thought I'd share my story as we go along on this unexpected journey.

I will start from our first daughter's birth- sweet Ainsley- She was born at 34 weeks due to a rare condition called Congenital Chylo-Thorax which caused Fetal Hydrops.

The whole thing was dramatic- at 33 weeks I thought I was having some labor symptoms but the doctor measured me and I was measuring 40 weeks instead of 33 and my blood pressure was sky high. I was rushed down stairs to a specialist at Rex Hospital in Raleigh, NC only to be told to call my husband immediately because the baby and I were in great danger.

It still brings me to tears just thinking how scared I was. Everything had gone perfectly up to this point- what could be wrong? Mike arrived and we rushed over to another specialist at UNC Women's Hospital in Chapel Hill and for 3 days they ran tests, did ultrasounds, had meetings over what to do with our baby.

I will never forget when the Chaplin came to our room- all I could think was this was the end, he only comes when the end is near. He prayed for us, for our unborn daughter and for us to have peace.

On December 20th, 2004 the doctors decided that they could help our little girl on the outside as she was not doing good inside of me. We were rushed down to the O.R. and Ainsley Elizabeth was born. They told me she probably would not be crying and that they would not be able to bring her over to me. They had a whole team working to resuscitate her. Ainsley was put on a ventilator and the first week of her life was touch and go. She was such a fighter and the doctors even called her a "miracle baby".

To make a long story short she was in the NICU for 5 weeks and the problems didn't end once she got home-feeding issues, slow growth but for the most part she was healthy and is now a perfectly, healthy 6 year old. I guess I'm telling you this story because I thought that would be our biggest baby drama that God would allow, I mean how much more can parents handle is what I was thinking. No doubt God was there every step of the way and although we don't know why it happened, it doesn't matter, it all made us stronger.


Here's a picture right after she was born. She was full of fluid because of the hole in her lymphatic system which made it impossible for her to regulate all of the amniotic fluid that circulates through out the womb. Eventually she got rid of the fluid just by peeing and lasix- no surgery or draining was required!

When Ainsley was 18 months we got pregnant again and I was determined to have a normal pregnancy and birth.  I listened to all my friends share their stories of taking their babies home right after giving birth and how they ate so well, grew fast-I wanted that so badly.

On May 2nd, 2007 our Harper Elise was born via-c-section and everything went as planned.  She came right home, ate perfectly and gained weight just as a baby should.  I was so happy to get that "perfect" pregnancy and birth.

So I thought we were done having children after Harper.  Both girls were healthy and our family seemed complete but then as Harper grew and started walking I just wasn't ready for her to be our last.  After nagging Mike to have just one more, we got pregnant very quickly with our third. 

The pregnancy was going great early on, I felt better than I did with my girls and then we moved right after my first trimester.  We settled in nicely, made friends quickly, I liked my new doctors and had no reason to think anything could go wrong. 

But then it came time to receive my test results for my afp screening done at 16 weeks.  It had been over a week and still no word but my monthly appointment was scheduled for the next day so I thought I'd find out then that everything was normal. 

That night something made me go to the Baby Center website and click on the Down syndrome pregnancy boards.  I read where women were nervous because of their screening results.  I started to wonder about myself and my own results but then shut the computer thinking all was fine.

The next day at the doctors I asked the nurse for my results as soon as I got into the room.  She looked in my file and said they were back but they needed to be looked at by the doctor but that everything was probably fine.  I waited and waited for her to return and then I started to envision a little girl, all dressed up like my girls playing but there was one thing wrong-she had Down syndrome.  I had this terrible feeling and I just knew the news was going to be bad.

So the doctor finally came in and made small talk and then finally she got to my testing results.  She told me that my results were showing a high chance for Down syndrome but that it was only a screening and not diagnostic.  She didn't want me getting upset because there were false positives.

 (Warning, these feelings I share next were real and honest and I realize they seem harsh, but until you are in this situation you don't know how you will feel) I then asked her what my odds were-(I was reading the night before about women who got results back that said 1 in 160 or 1 in 220) she said she really didn't like telling her patients because it is just a screening and it may be nothing but mine were 1 in 10 that this baby had Down syndrome. When I heard that, it was all over, 1 in 10?! And these women were worried about 1 in 160? Are you kidding me? I honestly did not want this baby and this is me just being honest- at that point I thought maybe I'll have a miscarriage and we wouldn't have to deal with this.

I left the office calm but as soon as I saw Mike I broke down. I felt that it was all my fault, I wanted to get pregnant, not him and now this baby was not perfect, or normal, this baby had Down syndrome.

The next day we went to do the level II ultrasound where they found a heart defect and shorter limbs for gestational age (both are markers for Down syndrome). Right then and there I said I wanted to know for sure- I wanted the amnio- no matter what the risk. The procedure went fine and on December 26th, 2008 I got the call- it was confirmed our baby had Down syndrome and that it was a boy.

This was the day that our lives changed forever.

It would never be the same. Our perfect little life that we had was gone or so we thought. Why was God letting this happen to us again? Ainsley's birth was traumatic enough but now this? Why God, why? I can't do this, I thought, I don't want to do this, quite honestly. Mike didn't either. Who does? So we cried that day, we were angry at God, I was angry at myself and then I was just numb. I still could not believe in a million years this would be happening to me but yet I somehow knew.

So a couple days went by and the genetic counselor called to check on me and then she said I had options- I could keep the baby, I could terminate or I could put the baby up for adoption. Well, no matter what my crazy emotions were when I was thinking maybe the baby wouldn't make it and it would be for the better, I knew that I would not terminate. No way. This was the baby we created and we were going to keep it-that was our only option. I felt terrible for wanting something to happen and that I could not even feel excited that we were going to have a little boy. I hadn't talked to God in a couple of days because quite frankly I felt betrayed.

How silly of me, I think now. I know God wasn't punishing us with all of this. Things like this happen, they happen to good people and not so good people, to Christians, to non-Christians, things like this just happen but

I believe they happen for a reason. 

But just as with Ainsley, God has a plan and I just know if I let Him take over and stop trying so hard to control everything, it was going to be okay. It was with Ainsley- as soon as I gave in because I couldn't do it anymore- I couldn't watch my little baby girl hooked up to all those machines not knowing if she would live- God stepped in. I just gave it all to Him. I remember that happened on New Year's Eve, 2004 and the next day Ainsley amazingly came off of the ventilator. So I think in a way Ainsley's birth has prepared me and hopefully Mike for what is to come. We are not in control- as much as I want to be, I'm not. I truly believe though if we just let go of that control God will show us the way.

So this is our story thus far. I know it's long but I felt I needed to start with Ainsley as she was really the beginning of our unexpected journey- parenthood, I guess, in a nutshell. And though I feel like our lives have changed forever with this diagnosis I just know in my heart it will be for the better, no matter what happens. I'll hope you'll check in from time to time to see how things are going! I promise, other posts won't be this long:)