Our world was turned upside down on April 19, 2010. And by “our” I mean my family. We are close even when thousands of miles and a giant ocean separate us. It was on this date that we found out my sister was pregnant with a baby who has Down Syndrome. Since then, lots has happened and the world has righted itself (mostly). We are just beginning our journey with Down Syndrome and I thought it would be cool to share some of those experiences. Below you can read my interview with my sister. You can also check her blog for more information on Baby Rylee and and a behind the scenes peek of Tonya Marie Photography.
When did you find out that Rylee has Down syndrome?
April 19 at 7:52am (GMT). I was over 13 weeks pregnant. We originally found out there was probably a problem with baby at my 12 week ultrasound when they found a large nuchal fold on the back of baby’s neck. We went in six days later for a CVS test.
How old were you when you got pregnant with Rylee?
A girl never tells her age Ok, ok, 32.
Do you or Josh have any family history of Down syndrome?
Nope and nope.
Are you glad you found out she had Down syndrome before giving birth?
Yes. It allowed me to go through all the emotions; why me?, anger, grief and eventually acceptance before baby was born. It also allowed me to educate myself on Down syndrome and what to expect at birth and beyond. When she was born I was emotionally prepared and ready to love her.
So far, what has been the most difficult thing?
Initially receiving the news that baby had Down syndrome. Over 90% of pregnancies diagnosed with Down syndrome are terminated in England. The treatment we received from the medical staff was horrible (and thats putting it lightly).
What has been the most amazing thing so far?
Realizing that she is ‘just a baby’ right now. Down syndrome or no Down syndrome, she is my baby and I couldn’t love her any more than I already do.
What are you looking forward to seeing Rylee do?
I honestly haven’t thought that far ahead. I’ve been so consumed with getting over her jaundice, trying to get her to gain weight, a scare with an abnormal newborn screen blood test and giving Avery the love and attention she deserves that I haven’t thought about it. She did shock us with rolling over stomach to back at just three weeks old! You go girl, lets continue to defy the odds!
Will Rylee receive any special care?
Yes. Rylee will have a follow up heart sonogram and see an Ophthalmologist in January. She will also receive care from the state of Texas through ECI, Early Childhood Intervention. We had our intake meeting 2 weeks ago and we have Rylee’s evaluation next week. A plan will be developed that will probably start with physical therapy and eventually will include speech therapy among other services they will provide for her. All ECI services occur at our house and are meant to teach the parents techniques to use.
Photography Note: These photos were all shot using natural light with high ISOs and I couldn’t be happier with the results. Seems getting a giant light and studio set up all the way to Texas is pretty tricky these days.