An Email

I guess I could start at the beginning of my pregnancy to tell this story but I feel that may be another story for a different day. I promise to go back and tell that story because my pregnancy was anything but ordinary. I think the best place to start is with an email. This is the email Adam and I sent to our friends to tell them about Maddie Grace and her diagnosis. The outpouring of love and support we've received has been amazing. There are no other words for it. Adam and I are so blessed to have so much support. So here it is:

I'm not really sure where to begin with this email except to say this is probably one of the hardest things I've ever had to write. Maddie Grace has Down Syndrome. We got the results of her chromosome tests back on Thursday.  To be honest this was not a total shock to Adam and I. I had a screen positive during pregnancy. We were told we had a 1 in 28 chance of having a child with Down Syndrome. After a very in depth ultrasound that was clear we decided not to dwell on it and opted out of a amniocentesis to get definite results. If I'm being honest I knew Maddie Grace had Downs Syndrome from that first screening. I did a lot of research. But things looked good for us since our risk factors were very minimal since our ultrasound was clear.  The last 18 weeks of my pregnancy were filled with so much fear about the health of our little girl that I was so ready to meet her on Valentines day.

I knew the moment I saw her. I was filled with so much joy because she came out screaming and crying and was healthy!  Her apgar score was a 9.  She was finally here and transitioned very well. After an in depth screening by the NICU team in the OR she was handed over to us. She was healthy and she was finally here. We were so happy.

While I was in the recovery room we had a consult with a neonatologist. He was  extremely positive and said that her facial features were consistent with Down Syndrome. That was the only characteristic he could find. There were no other markers.  He said at that point that the chances were higher that she didn't have Downs. The next day our pediatrician confirmed that he could only find one trait and that was her eyes.  We would have to wait for her blood results to know for sure. Again, I knew, but it was a hard couple of days. Some days I would see it so clearly then other days it was less obvious to me. It was hard because all of the doctors seemed convinced that she had typical chromosomes.

Adam and I feel so very blessed to be the parents of this beautiful baby girl. But if I'm being totally honest our hearts are breaking a little. They are breaking for the struggles our daughter will face. However, I'm convinced there are no accidents. We were sent the daughter we prayed so hard for. Maddie Grace is already such a blessing and a fighter!  We are ready to begin this journey, and I have a feeling it's going to be more beautiful than we could ever imagine. We are certain we will be equipped with everything we need to handle any hardships Maddie Grace may face as they come. We plan to fully embrace this diagnosis without letting it define our child. We trust that with lots of love and support Maddie Grace will be destined to do amazing things. I fully believe babies are to be enjoyed and that's exactly what we are doing, enjoying every minute. The only thing Maddie Grace needs right now is acceptance, and most importantly love. We will take all of the therapists and added health concerns as they come. I'm sure we will have bad days but I know they will be far outnumbered by the good days.

If you would like more information about Downs Syndrome you can visit this website: www.ndss.org.

We love you all!
Kayla and Adam