Friday, October 16, 2015

DSAM: Jennifer's Story

Jennifer and Liam

It is day 16 of Down Syndrome Awareness Month and I am so pleased to be able to share Jennifer's story with you. Every parent has their own unique experience and I wanted the opportunity to share a variety of perspectives here in hopes of shedding some light on what it is like to be a parent of a child with Down Syndrome.

My name is Jennifer, and at age 28 I found out I was expecting.  I was so thrilled and excited and scared. My entire pregnancy was not easy from the very start, I was constantly sick pretty much the entire time.  To make things even more difficult I found out I had gestational diabetes.  At my 33 week ultrasound the doctor told me that Liam's humorous and femur measurements were short, which is know as a soft marker. Before this ultrasound all my ultrasounds came up "normal". The doctor proceeded to tell me that I had a 1 in 150 chance that my baby would be born with Down syndrome. For a very long time I hated my doctor for telling me this. With this information hanging over my head I was a mess, I cried, I was angry, I couldn't understand how this could possibly happen to me. At 37 weeks I went into labor and three days later I gave birth to a healthy beautiful baby boy. Liam weighed in at 7 Lbs and measured 19 inches. He was absolutely precious. The second I saw him though I knew, I knew he had Down syndrome. I could see it, but no one else could or they decided not to see it. Through genetic testing we confirmed that Liam did have Down syndrome. The next few months were dark for me. I mourned the life I wanted for my child. I cried. I just couldn't understand. 

As a new mom, already not knowing what I was doing, add low muscle tone into the picture.... it's a game changer. Two days after we were released from the hospital we were re-admitted. I had no idea that Liam wasn't latching on, he lost 11% of his body weight was extremely dehydrated and extremely jaundiced. I felt terrible! How could I not know that he wasn't nursing, how could I think his constant crying was normal? I thank god every day that something worse didn't happen due to my inexperience. Low muscle tone, tongue tied and nipple shields were my new reality. I worked closely with a lactation consultant for a full three months to get Liam to nurse successfully.  We worked tirelessly together to figure out this dance called nursing, I pumped and bottle fed meantime. Our hard work paid off, literally at the three month mark he just got it. It was such a big moment, I was so happy I didn't give up or give in. Everyone around me was telling me to just give him formula. 21 months later and we are still nursing strong. Like our nursing adventure, every milestone has been just like that. We work and work and work to get Liam to achieve his next milestone, and then one day he just does it.  Liam is amazing and silly and smart, it just takes him a little longer to do things.  It's truly amazing watching his determination and motivation to achieve what he wants.

  Every single day I celebrate the little things, all the things that parents of a "typical" child would over look.  I have forever been changed in such an amazing way.  Now I look to the future with optimism and hope, and I know that it's just an extra chromosome ... It doesn't define what a wonderful little human he is.

Thank you Jennifer for sharing your story!! 
Liam is AMAZING!

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