How it went (in honor of National Down Syndrome Awareness Month)

A friend of mine recently wrote an entry on her blog entitled, "How I Wish It Would've Gone," and I was inspired to tell our story, especially after my husband read her blog and said, "You should tell our story.":)

I had an amazing pregnancy, very similar to my first with my son.  I was able to stay active and running til over half-way through the pregnancy.  I can remember my doctor asking us if we wanted to have any blood tests done to find out about things like Down Syndrome, like it was yesterday.  My husband and I immediately turned the offer down.  We were both young, healthy, had no family history that we knew of, AND no matter what, our baby that I was carrying was made from lots of love and we would do everything in our power to take care of her and show her how much she was loved no matter what possible hardships were in the way.

At our 39 week appointment, our Dr. (I'll call him Dr. L for privacy but my close friends will know who this is) decided I could be induced the very next morning because of some family emergencies coming up and knew I was beginning to get stressed about who would take care of our son.  I was also induced with our son by having my water broken and then the rest happened naturally.

We were at the hospital by 6am, they broke my water by 7 and my beautiful baby girl was in my arms a little after 9.  No complications, great labor, great teamwork, and a very happy mama and daddy.  The nurses whisked her away after she was born for what felt like about 30 minutes, but eventually she came back, no one said anything and there was no explanation of anything.   My parents came over with my 2 year old son about 11am,  Everyone got to hold her and we took family pictures and were relaxing the afternoon away.   I remember looking at her all bundled up with all that dark, long hair thinking how beautiful she was and never suspecting anything.

My good friends and other family members came later in the afternoon and at about 5pm my family practitioner came over from the clinic.  He came into the room and my good friends Lisa and Chuck were there.  He said,  "Kedra and Matt, I have something to tell you about your daughter.  Would you like your friends to leave the room?"  I couldn't possibly imagine anything wrong with what he was going to tell me, so I quickly replied, "No.  Go ahead.  It's fine."  Then he proceeded to tell me that the reason they took Lanie away so quickly after she was born was because they immediately suspected Down Syndrome and because so many babies with Down Syndrome have heart problems, they wanted to do heart tests right away.  I'm sure at this point my jaw dropped in disbelief.  My amazing friends quickly stood up, hugged me and said they'd wait outside the room.

At this point I looked down at Lanie and began to sob.  There was NO way this could possibly be happening to us.  We were young, healthy, no genetic history.  This has to be wrong!  I said to Dr. R, "Why did they suspect it?  What made them think this?"  He began to explain that right away the nurses and doctors saw the flatter nose, shorter fingers and toes, a slight palmar crease on her hand, shape of her eyes, and small ears.  I began to look at her for these features and slowly began to see what Dr. R was pointing out but still was in utter disbelief.  The doctors had to be wrong!

Dr. R told us that Lanie had a strong heart and no heart problems.  He began to talk a little about what Down Syndrome meant for a child, but did not go deeply into it at all right away.  He said they had drawn blood from her and sent the blood to go through a chromosome test to know for sure whether she had the genetic disorder.  It would take about a week to get the results back.  Dr. R stayed around a little while longer, his calm demeanor helped Matthew and I.  He said he'd be back the next day and left for the night.

I later learned from Dr. L, my OB-GYN, that he was going to deliver the news to us about Lanie but Dr. R had told him no.  That our family were his patients and it was his job.  I'll always remember him feeling that ownership to being the bearer of the news about our baby.  He felt like because of our relationship and time being his patients, it was his job to tell us and he wanted to make sure it was done in the most gentle of ways.

The next morning Dr. L, who had delivered Lanie, came in to check on me.  He made it very clear that his job was to take care of me and that included my mental health.  I'm sure I was a mess; red face, dark circles under my eyes from lack of sleep and crying, and the way I wouldn't let Lanie out of my sight for even a minute, even through the night.  He asked if I needed anything to fight off the anxiety or depression, something to help me sleep, and I told him no, I did not want anything in my breast milk that was going to Lanie.  Dr. L's words will forever resonate with in me, he said something like, "She is a beautiful baby girl.  She needs loved, she needs fed, she will grow up and have friends and learn.  It will be hard and take work, but you have no idea the love that this little one will fulfill your lives with."  I tried to believe what he was saying but deep inside just kept praying, even bargaining with God, to let Lanie NOT have Down Syndrome.

At one point, Matthew left the hospital for a couple hours to go home.  He went home and did research.  He was my rock.  When he got back he began to share with me some of the things he had learned, but not too much so he wouldn't overwhelm me.  He brought back a poem called "Welcome to Holland".  It was an important perspective that I needed at just that moment but wasn't able to fully believe until a few months later.  I fixated on the what-ifs.  What if she doesn't learn to read?  What if she has a bad heart valve and needs heart surgery?  What if she doesn't have friends?  What if she gets childhood leaukemia?  What if she can't talk?  What if she never gets a job?  What if she never graduates from highschool?  Matthew continued to remind me that there are what-ifs in ALL of our lives, not just Lanie's.

We left the hospital after 2 days.  I was still bargaining and praying to God and it wasn't until Wednesday, April 12, 2006 that we got the official news.  Here is my journal entry from that day...

Today marked the beginning of a whole new life for Matthew and I.  Who would have thought that 8 years ago when Matthew and I first started dating that we'd have child with Down Syndrome.  It's so hard to digest.  And wait.  Wait to see how severe, wait to see how healthy, what developmental delays, how high functioning.

Matthew is being amazing.  He's so willing to give up his job and stay at home with the kids.  I love my job but would stay at home in a heartbeat if that was what was best for our family.  I know emotionally we will make it, we're a strong family unit.  But financially may be difficult, or at least very tight.

Carter is such a mature big brother.  He loves to hold Lanie, give her kisses and touch her.  He has no idea how different life will be soon.  Different good, but very different.

So that's how it went.  It wasn't easy, in fact it hurt a lot.  But I am so thankful of the way my doctors handled it with love and support.  And 8 years later I can sit here and honestly say that Dr. L was right.  She's a beautiful baby girl, who needs loved, and fed, and goes to school to learn and has friends.  And she gives more love and fulfills our lives in more ways than we ever would have thought possible.  And we're taking it one day at a time because all our lives have what-ifs.