One year later....Now I can see!

March 2008 - In Hawaii - Erin pregnant with Ellie - holding Ellie's first onsie!

March 12, 2009 - Exactly one year after we got Ellie's diagnosis - Ellie is wearing the pink onsie from Hawaii. She is literally an angel.

Okay, so I need a moment to express some deep feelings that I haven't really talked about - it just feels good to put it out there even if no one reads it.

One year ago, Matt and I went to our 20-week ultrasound appointment to find out the gender of our baby. I had just read in a book what they would be looking for in the u/s and vividly remember seeing a picture of a healthy four-chambered heart. When the tech got to the baby's heart, I could see that it didn't look like the picture I had seen earlier....but I'm no doctor so I assumed the tech could see everything. However, the tech spent a lot of time on the heart. Then SILENCE. My own heart began to beat wildly. After what seemed like FOREVER she moved on and we learned that we were going to have a little GIRL! My OB then looked at the u/s pics and said, "We can only see 3 chambers of her heart". I was shocked and said, "Do you think something is wrong?" and this always optimistic doctor said, "I don't know" which scared me to death. He said I'd need to have a level two ultrasound so they could get a better look. I should have been so excited we were having a girl but I couldn't help but feel COMPLETELY CONSUMED with worry and fear that my baby had a major heart defect and would not survive. Matt was very optimistic and did not worry.

When we got home, I crawled into bed and cried. We told the doctor that we were leaving town the following Tuesday (this was Friday) and wanted to get the u/s before we left so we could enjoy our trip. They said they'd do their best but weren't sure. A miracle happened: I prayed with my whole heart that the doctor's office would call and the phone rang just then! It was them! They were able to get me in on Monday. I am so grateful for this little miracle b/c it helped me get through the weekend without so much worry.

On Monday, I figured we'd go in, get the u/s, they'd quickly be able to see that her heart was just fine and we'd be off on our perfect vacation. It didn't happen that way. The tech was very talkative, positive and happy....spent a ton of time looking at her heart....and then SILENCE....again, my heart beat wildly...and finally she asked, "Did you have a quad-screen that tests for Down Syndrome, Spina Bifida, etc.?". I replied, "Yes. It came back totally normal". She left the room to show the scans to the perinatologist and I cried. Matt held my hand and kept saying everything would be ok. The perinatologist came in and said, "Your baby has a major heart defect called an AV Canal defect". We were STUNNED. He went on. "She also has a thickened nuchal fold and a flattened nasal bridge. All of these things combined are markers for Down Syndrome." DOWN SYNDROME? What? The two words spun around in my head but never took hold...we both were in shock. Then Matt, a math guy, spent a good deal of time talking to the doctor about what the odds were of having these markers and it not being Ds. The doc said that my normal quad screen gave him hope that it wasn't Ds. Matt asked, is there any way we can know for sure before the baby is born? The doc then told us about the amniocentisis. Without hesitation, we agreed to it. As the needle painfully entered my womb I felt like I couldn't breathe and was going to have a heart attack - I could not stop the tears from streaming down my face. It was a nightmare.

We then spoke to a genetic counselor who explained a few 'syndromes' that this could be: Down Syndrome (the most likely), Turner's Syndrome or Trisomy 13 or 18. She was very nice but I couldn't speak to her through the sobbing. Poor Matt had to ask all the questions. She told us we had 2 weeks after the diagnosis to decide if we wanted to keep the baby. Matt quickly responded, "That's not an issue. We'll keep the baby no matter what. We just want to know."

We started praying that it was ONLY a heart defect and not a 'syndrome' TOO. Matt remained so positive. We left for Hawaii the next day and all I could think about was what the results of the amnio would be. I remember having the warmth of the sun on my face for the first time in months and not being able to really feel or appreciate it. On Wednesday morning, at 3 a.m. (8:00 a.m. in MN) Matt called the genetic counselor for the results. He went outside to talk to her b/c I didn't want to hear the news that way. It was dark and quiet. I could hear him asking questions. Finally, he came back in, laid on the bed and cried and said, "She has Down syndrome". Matt rarely cries. I tried to comfort him until it finally sunk in and then I cried. I found out later he was mostly crying b/c he felt bad for me since he knew how badly I wanted a healthy baby. That is Matt. So selfless and loving. A true angel.

The next several days felt like I was in a bubble and everything outside was distorted. I looked at every child to see if they had Ds. None. Matt confessed he had been doing the same thing. The worst part was telling family and friends. It was so hard. I couldn't even talk to my own family. Both of our families were very supportive and loving. We sent out an e-mail to everyone else with the news and received so much support! It was truly AMAZING!

We researched online since neither of us knew much about Ds. We joined the Down syndrome association of MN and found out about a conference happening in just a few weeks. We signed up. We found out many things like how heart defects are present in about 50% of babies with Ds. We found out our genetic counselor informed us about aborting the baby b/c over 90% of women with the diagnosis do. But, the main thing we remember were all the accounts we read about having a child with Down syndrome were so positive.

Matt remained positive despite the news. We still did all the activities we originally planned and I'm glad we did. Lots of miracles happened while we were in Hawaii....each one a blessing of comfort, assurance and peace that this was part of the "plan" and that things would work out.

While we were there, I bought a little pink onsie for our little girl - the smallest I could find was 6 months. On March 12th, 2009 - a year from when we got the diagnosis - I put this onsie on my beautiful Ellie and it fit! I can't imagine my life without this little girl. Because of her, we have been surrounded by angels: Ellie, especially, is one of them, our family, friends, the Hafemans, amazing doctors and nurses, people at church and work, people in the choirs, Ellie's therapists, and so many people we've never even met! It is amazing the outpouring of love we have received and we are so very grateful.

As I write about all the pain we were feeling, I feel really embarrassed b/c I DIDN'T HAVE A CLUE!!! I've also learned that it's a process that you have to go through before you can see the beauty. We now know much more about Ds and learned that so many of our fears were based on old information and old stereotypes. Ellie has amazing potential and we are so happy that we are her parents! We are so grateful for the advances in medicine (so her heart could be repaired) and increased social understanding, etc.

She is such a happy baby. Her smile lights up the room. Her giggle is the sweetest song I've ever heard. She'll even match pitch with you if you sing a note! She is the best snuggler. She is extremely determined! When she wanted to learn to roll, she kept going and going and would grunt and scream until she got it! She's working on sitting up and standing (both with support) and is so proud when she does it. She has taught us more than we ever dreamed possible.

So, the point of all of this is WE WERE SO WRONG! I'll be honest and say that I still worry more than I should and the pain is still here but it's because I'm still learning. I believe the Lord was saying on March 12th, 2008, "I know you're hurting and I am so sorry for the pain you're feeling. But, if you could just see where you'll be in a year from now, you'll know that this is really the greatest blessing ever and I'm giving it to you because I love you."

Yes, now I can see. She IS the greatest blessing He's ever given to Matt and me and we are the luckiest parents.